27 December, 2007

14 Week post op

It's been almost two weeks without a crutch in sight! Oh, how I don't miss them. I've been holding up pretty well for the most part. The right hip gets a bit tight at times, I believe it's the psoas, so we've been stretching it more at PT.

I had the injection on my left hip on Friday. I hate the procedure, it's not pleasant at all, but at least it's over. I had a difference in pain from the pre-injection to the post-injection, especially rotating my hip inwards. That was a 10+ before the injection, and went to about a 5 after. It was definitely sore for the following days but seems okay now.

I leave for London tomorrow night. I have taken the precaution of arranging assistance from the gate in Heathrow as the walk to immigration is quite long. I am meant to get a bulk seat as well which will be helpful in the sense no one will be able to smoosh my legs when they put their chair back. Normally I'm not a fan but in this case I'm willing to give it a try.

I've been trying to limit my plans for the trip, so just meeting up with some friends, seeing a Panto, going to the local for New Years and the biggest amount of walking will be at Hampton Court on New Years Day. I pray I can handle it, because being the Henry buff that I am, I have to see the new exhibit, as well as the Tudor Cookery special and holiday decorations they have set up. I must hit the gift shop there as well, they usually have lots of fun things for history geeks such as myself.

I am back next week and will let you now how I fared. Happy New Year and may you and those you love have a blessed 2008!

21 December, 2007

Sick Humor: Answers to But you don't look sick?!

(again, not mine but had to pass along)

Don't you wish that you had something witty to say when someone says the inevitable.. But you don't look sick?! Well now you do, Thanks to our message board members we have a WHOLE list !! Even if you feel you can't really use these answers when people ask, you can most certainly think of them and giggle.

And you look Intelligent!

And you don't look stupid!

Maybe it's Maybelline.

But I tried so hard!

Oh? You don't look like the bearer of prejudices.

We all make mistakes * Cheery Smile *

Really? That's odd!

Really? (Look down at yourself) I'm cured!!!

Where did you get my medical degree from?

For when people are are being rude- I don't look ( Insert age here) either, but it doesn't change the fact I am!

Why thank you honey, that's so sweet of you to say that!

I wasn't aware illnesses came mounted on a billboard!

Huh? What does sick look like?

There's a well person striving to escape this body!

How sweet of you to say that. I've been so tired, I haven't bathed in three days.

And I was sort of worried about going out in public looking like this. So thanks for the compliment. It's really made my day.

And I guess your X-ray vision isn't working too well today either! You should see how corroded some of my parts are on the inside. Some of my organs are in their 90's, some in their 70's. It's hard to keep track! ! !

Yeah, isn't it great. I guess I'm the healthiest looking sick person you've ever seen, huh? Isn't it weird how looks can deceive.

Yep well it's nothing to get excited about!

Well I'm NOT sick, my body is!

What do you think "Don't judge a book by it's cover" means?

Just because I look ok, doesn't mean I'm fine.

I work hard to look this good.

Are you flirting with me?

I have good and bad days, but I'll never be the way I was before I got sick.

Darn! I told Q this was the wrong host body!! I should go back to the mother ship.

This is my Alter-Ego!

Should I get a refund?

It's really good to know that the 4 hours it took me to get out of bed, and get ready this morning wasn't wasted!

Really? That's not what my psychiatrist told me.

Oh gosh I didn't realise it was you who was blind. I mean people told me but I must have gotten muddled, its the drugs you know, but wow you're coping so well.……. *continue babbling til they back away*

You should see the straight jacket they make me wear!

Thanks! Funny, knowing that i don't look sick, gives me a new appreciation and patience for the people i might meet who look healthy and may not be.

Oh yeah? Check this out (show them something freaky)

Really? Ok lets trade bodies for the day!

What exactly does (insert illness) look like?

Ignorance is bliss I guess!

Would a bit of vomit help? Because I'm feeling quiet nauseous.

I guess hard work pay off!

Well of course not, I look like (insert name here) Duh!

What is this "sick" you speak of?

Thanks! I only needed one painkiller today instead of 5!

oh good..... because "not sick" is just the look I was going for!

Sick Humor: A letter from your chronic condition and a reply

(just had to post this, it's brill)

A letter from your chronic condition and a reply. Sometimes you just have to laugh!

To whom it may concern:

Congratulations! You have been selected to be the host for (any chronic condition -- RA, FM, lupus, MS, you name it). You will begin to experience many or all of these symptoms -- and may even deal with several of them at the same time.
--Pain can be anywhere you can imagine. We are equal opportunity destroyers, therefore we will choose many places for you to experience pain. We have even devised many different types of pain -- it could be aching, stabbing, throbbing, tingling, burning, gripping, or cramping. We are continually improving our repertoire of pain categories, so updates are to be expected.

--Dizziness. This can be accompanied by nausea, mental confusion, ringing in the ears, vomiting, loss of coordination, and sensations of spinning, rocking, or shaking. We try to simulate the experience of riding a never-ending roller coaster to satisfy your adventurous spirit. No safety harnesses required, and you have no choice of when the coaster ride starts,ends, or how fast it goes.

--Extreme fatigue (Now remember, this is not just being "tired". We will suddenly "pull your plug", so to speak, and you will have NO energy at all. Even dressing or taking a shower will be too daunting of a task for you to complete. And because we like surprises, we will NOT give you any advance warning, so you could be in the middle of the grocery store, at work, playing with you kids, or trying to clean the house.)

--Poor balance, lack of coordination. Let's just say you may walk or talk like you are drunk -- even if you haven't had any alcohol recently. And for those of you who have never indulged in alcohol, you are now going to understand what it is like to be drunk and to have a hangover.

--Forgetting, losing, dropping things. These are just a few of the perks of your condition. You will learn to expect them, but never to enjoy them.

In addition to the symptoms above, we also want to eliminate some things from your crowded lifestyle. Here are a few of the things which will be taken away from you now that you are chosen to have a chronic condition:

The ability to stand or walk for longer than 15 minutes without experiencing pain in you feet, ankles, knees, or legs. The ability to sit for longer than 10 minutes without experience cramping in your legs and butt, or shooting pains in your back.

The ability to complete any task which requires more than 10 minutes of concentration, multi-step activities or long-term projects will take 2-3 times longer then average.


The ability to play and run with your children like you did before. The ability to have a "normal" social life. The ability to accumulate sick days at work/ school to earn the perfect attendance bonus. As indicated previously, this condition is in constant flux and more symptoms will be added as we deem necessary. There is no warranty guarantee, technical support, or customer service available.

Sincerely,
Your chronic condition

_________________________________________________________________ Dear My chronic condition:
I would like to clarify that, while you may wreak havoc on my body, and maybe even confuse my mind -- you cannot have my heart or my soul. You cannot have my faith, my hope, or my love. There are some good things that you have given me, things I never could have experienced had you not come to possess my body.

You have given me:
-- strengthened prayer life and increased dependence on God's grace and strength, rather than my own
-- renewed friendship with strong, close, true friends.
-- appreciation for every precious moment I am given. A gift that is sometimes lost on the "healthy".
-- growth in character, perseverance, and hope.
-- inspiration for to help others.
-- more compassion for others who are suffering.
-- better knowledge of my own body & health.
-- a reason to eat more nutritiously and take care of myself.-
- reasons to rest when I need it.

You see, you will not find me an agreeable host. I will fight you, I will not give up. On bad days, I will take care of myself. On the good days, I will take advantage of every precious moment. You have thrown some obstacles in my life's journey, but I will go over them or around them, no matter what it takes. In fact, while I am overcoming them, I will stop for a moment to reflect upon the mountain I am climbing, plant a few seeds and then continue on. I will learn and grow from this experience and help others.
Sincerely,
ME

YAY!

I made it a whole work week without a crutch in sight. Quite an accomplishment. My left hip has started to really bother me again so I am glad that I've the injection for later today, though I must say I am not looking forward to the procedure itself. I believe I have the same doctor as last time though and he was very good. I so appreciated how he explained the procedure step by step and was constantly telling me everything about it and how it was going.

On a different note, I came across some interesting items on a message board I am on and thought I would post them. I did not write them. I will post each separately.

Also, check out this site: http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

19 December, 2007

13 Week update

In honour of my thirteenth week of recovery, I decided to be brave and ditch the last crutch. Unlike most people I've had to use one for a much longer time. The idea was to keep down the inflammation in the surgical hip, and it did work. The main issue was it made my left hip very upset and inflamed.

Today is my third "official" day going sans crutch. It's been going pretty well. The main issues I've found are if I walk for a few blocks my hamstring starts to get tight and sore on the upper part, and the tendon under my right knee gets a bit irritated. My PT guys doesn't seem to concerned and I feel that the stronger I get it will work itself out. At least that's what I'm hoping. My psoas has been feeling a bit tight and we stretched it out at PT on Monday, and hopefully will do that again tonight. It's tricky for me as we don't want to overdue the stretching because of the EDS, but at the same time, it really needs to be done. I am going back to the genetic doctor in January so hopefully will get a better idea of what I should and should not be doing.

As for the left hip, it's not been too bad the last few days. Ironic as I'm getting an injection on Friday. I think it's very happy to be without the crutch and I am definitely more balanced so not putting most of my weight on it. It was pretty sore this am, but I also feel horrid and achy - it's my fibro kicking in. Sleep wasn't good for a few days and though I did fairly well the last two nights, the weather is a bit off where my body is concerned. I will have to make a concerted effort to get some good sleep in before I leave for London next week, as I don't want to start the trip off like this - the flight itself will be a challenge.

I am a bit nervous about the injection. I want it to make the pain go away, but at the same time, if it works, that means I will most likely need surgery. I am in no mental state to be able to handle that again, but at the same time I do want to get it over with so I can get on with my life. Ok, I'm not going to think about that now. As Scarlett says, tomorrow is another day...

15 December, 2007

sometimes you feel like a nut...

which has been a rare case around here lately. So...today being a day I needed to sort out my head, I put on my most favourite, the loveliest band in the whole universe. (Depeche for those of the unknowing ones). I didn't just put on their music, I really needed that extra umph to get me going, so I put on the dvd of their last tour, Touring the Angel (which I must say was one of their best ever!) So as I took a shower, made my matzoh brei and ate it, I slowly got into the music. After I dried my hair, some of their more rocking and dancing songs came on (for those of the disbelieving ones, trust me, Dave can really get down in concert) and I was just swept away. My left hip hadn't started hurting for the day, and my right was doing ok, and the next thing I realised was that I was dancing around the living room letting go of everything and just enjoying the moment. I actually felt normal, well, until after a couple of songs I could barely breathe - all that congestion is still there. But still, it was COMPLETELY BRILLIANT!!! I have not felt like a "normal" person in so long, and whilst I knew I was misbehaving incredibly and would pay for it later, I DID NOT CARE! (I will have to re-read this when I can barely walk because then I'll be thinking I should have really cared). Anyway, I can't really describe how this felt, (well I can, back hurts, hips are being iced, probably subluxated a shoulder) but it was just incredible. And it worked mentally because whatever was going on up there earlier is now gone.
Depeche Mode is officially my cure all. Oops, Martin is now singing Shake the Disease, my most favourite, so must run...

12 December, 2007

12 weeks post op

It's never a dull moment in Tricia's world, that's for sure. I came down with a lovely cold or something last week, and it has decided it is so fond of me it doesn't want to move on. We are now trying antibiotics as a form of eviction. I hope they work.

As for my hips. The right one is good, I haven't been moving around too much since I've not been feeling well so it's hard to tell. The left hip has been touch and go and last week we didn't do any leg lifts with it. I've started to do them the last couple of days at home and so far so good. But again, I've not been walking much so it's hard to suss out exactly what triggers what pain.

The good news is that Dr. Kelly said I can get an injection into my left hip! I am going on the 21st, with the hope (and a prayer) that it will work like last time and keep me pain free for at least 3-4 weeks so I can enjoy my trip to London. I'm not looking forward to the process again as it hurt a lot last time, but I've got to try something.

Fingers crossed it works!!!

06 December, 2007

11 week post op update

Yes I am late again, but that's because I didn't go to PT on Monday. To be honest, I did not go Wednesday last either. I was letting some semblance to a social life start to creep in again.

So, last week, after PT on Monday, where we did leg lifts with NO weights, I still ended up in agony for a few days after. This is really getting old. And boring.
For the most part when I walk around I am okay on my right side. The right can get a little unhappy if I do much walking, but I am starting to think that is because I am leaning on it more than my left because my left is hurting so much. I try to ice when this occurs.

Yesterday am I woke up with horrible pain in my left hip. I was so uncomfortable that I rang Dr. Kelly's office and left a message. I have been thinking that since PT is so difficult on that side, and my leg is clearly getting weaker (it's weaker than my right now), some sort of evasive action needs to be taken. Other than this inhibiting me from walking more and seeing how I do without the crutches, and making my right side get irritated, it's most importantly going to ruin my trip to London in a few weeks! I can't have that. I discussed with my PT guy all of this last night and he agreed with everything I was saying, and said that (the dreaded) injection may be a good idea. For those of you that do not know me well, I absolutely dread the thought of putting that poisonous rubbish in my body. But...(there's always a but) it did work from 3-4 weeks on my right hip over the summer, and if I can somehow be fortunate enough to have it done and it works whilst I'm in London, I'll be a much happier person. Also it will help me take the pressure on my not-to-be-abused right hip.
I heard back from Dr. Kelly's office today. Arianne went on holiday so it was some person I don't know which meant going through the whole song and dance about what has been going on. (It's been short of a few days from a year since I first saw Dr. Kelly). I filled her in on all of my left legs loveliness (ie my IT band pops constantly and pain is more so on the outside of the hip), and she said that she thinks an injection might be something Dr. Kelly would want to do, even though I've not had an MRI yet on the leg. She was going to speak to him and would ring me back either tonight or tomorrow.

So, there we are. Oh, and to add to the fun, I think I've caught either a very bad cold or the flu. Ain't life grand? Still, off to see Tom Stoppard's "Rock n Roll" tonight, so perhaps that will cure me???

Happy Hanukkah!!!

29 November, 2007

10 (ish) week Post Op

I spent the long weekend watching my nephew and that did my hip in. Well, my left hip. The right one held up for the most part, but I did have to ice is every now and then. The left one however was completely miserable. I'm sure it had to do with running after Jack and picking him up.

I told my PT guy on Monday and he agreed. I still did the round of leg lifts w/o weights, and then the 3 lb on left side and 6 lb on right side with the stim and bolsters. I was so sore on Tuesday and very stiff on Wednesday. I am not happy about this as when I get like that I feel like I start to actually compensate with my right and then that starts to hurt. As I was meant to go to the theatre last night I hadn't booked my 2nd appointment for the week, so will have to work it out at home until next week. I don't have another appointment until Wednesday as I have company in town.

Last night I received a letter from the genetic doctor. I have already made an appointment with her (January was the earliest) to review and discuss what I should be doing to prevent more injuries. The letter basically summed up the biopsy results and what they meant. I will copy the relevant bits below. None of this was a surprise as she had explained that these tests do not really work for the type of disorder she believes I have, but it's good to rule out the ones it does work for.

"The results of your collagen study revealed no abnormalities. This is good news as this test excludes most forms of Ehlers-Danlos syndrome (EDS) type IV. This is a type of EDS that is associated with cardiovascular problems. The test you had also excludes some forms of EDS type VII another type of EDS which does not affect the cardiovascular system.

Unfortunately, the other major genes that affect collagen synthesis cannot be tested by means of this assay. No existing assay can help us better define your situation at this time.

I believe that your clinical situation is fibromyalgia plus hypermobile joints. Hypermobile joint disorder is a type of underlying connective tissue disorder that is in the EDS family.

Unfortunately, I do not have a specific test for this form of EDS at this point in time.

Many investigators are working on the various forms of connective tissue disorders in an effort to better understand them. I have no doubt that within a few years' time better testing will be available. It is also hoped that such testing could be performed on samples of venous blood."

So, nothing new or surprising, but in some ways it feels good to at least have a diagnosis that covers the multitude of issues I have had.

21 November, 2007

9 week post-op

I cannot believe it's been just over nine weeks since surgery, and six weeks since I've been back at work. Where does the time go?

I am learning that slow and steady does seem to be the key for me, though my patience level is barely existent. On Monday I told the PT dude that after last weeks workout with the (only 1 lb!) weight on my left leg, my left hip hurt for days. I said I thought it was the isometric side and back leg lifts and he agreed. This time I did those leg lifts sans weight and it seemed ok, so I'm thinking it was exactly that. My right side we did 1 lb weight for the leg lifts and it seems ok. For the leg lifts with the stim (on the right side) we are still using the bolster and did 3 lbs on the left and 6 lbs on the right. Slow and shaky at first but eventually it got smoother.

The good news is I was told I can start walking short distances sans crutches. He suggested that I can try to go to the corner store, but if I'm running around to bring it with me in case I get tired or sore. The main thing is to not irritate and cause inflammation in the joint. I was hoping to be off the crutches by yesterday, that was my goal, but I supposed this is a compromise I can (or rather will have to) live with. My new goal is to be completely off them by 28th of December, when I leave for London. I really do not want to have to bring this blasted thing with me. I will try to be better about PT as well, as with all the other insanity going on like my nightmare root canal, I became quite lax about it.

Happy Thanksgiving!

17 November, 2007

left hip not happy

This week in PT they worked my left leg as well as my right. The sad thing is my left leg is much weaker than the right. I had been trying to do exercises with it pre-surgery, but obviously the last couple of months have not been able to keep it up. On Wednesday when I was going to do the stim for the right leg we tried a 5 lb weight for the leg lifts on my left, and 7 lbs on my right. That was a bit over-estimating my strength. I was just able to do 6 lbs on my right, but my left we had to get down to 3 lbs. My knees have been very bad and they were hurting with all this lifting, though I know only strengthening my quads will help the knees. Yet another catch-22.

We also added 1 lb weights to all my isometric leg lifts; inside, outside and back; for both legs. I wish I knew what triggered the left hip so badly so I won't redo it. I was going to do some PT now, but my left hip and knee are killing me, so thinking I will ice them and hopefully in a few hours I will be able to do something.

13 November, 2007

8 Weeks Post op

Sorry, these have become more like weekly updates.

Last Friday I went to see Dr. Kelly for a post op check up. He seemed happy with the way I am progressing, definitely a good thing. He said that I still should not try too much in PT, just focus on strengthening the muscles to help stabilise the joint. He thinks that around 4 or 5 months post op is when I can start pushing it up a notch.

I told him how my left hip has been bothering me a lot more. He still thinks part of it is compensatory, but I did remind him it was bad when I first came to see him about my right hip (just that the right was a hell of a lot worse at the time). He said to tell the PT guys to work on my left and stretch it out, as the IT band is popping a lot and it hurts on the outside of the joint.

Sunday I spent a long time on my feet shopping with my mum. I have not really tried that yet as Dr. Kelly kept saying to keep taking things very slowly. I was sore and achy and my left hip and left wrist (from the crutch) hurt like hell, but my right one held up pretty well. I iced as soon as I returned home and was just a bit stiff that night and yesterday. Not a bad test run at all I'd say. Once I get rid of this last crutch I hope it will be much better for my other body parts.

On the root canal front, I've just returned from the "final" visit with the endodontist. Fingers crossed that once the novocaine wears off I will be okay.

07 November, 2007

Catch up

I will try to make this as quick and short as possible. Last time I wrote I was going to get antibiotics for my root canal that might have been infected. We're still not sure if it really was or not.

The meds did not work at all. By Friday I was still dying and my dentist asked me to come out to the island so he could take a look at the tooth. He took out the temp filling, upped the antibiotics even tho he didn't see any signs of an infection in there and left the hole open. I was to put cotton in it when I ate but other than that leave it out. My dentist also was going away. Never good when you may need him, and need him I did. Saturday I was in misery and there was nothing to be done - my dentist rang me from his trip and I tried the endodontist I had used last year in the city but he didn't get back to me, even when leaving a message on his emergency number - lovely! Sunday I spend the day trying to find someone to see me and even rang NY Hospital. Just for your fyi - they DO have a dentist on call, but on Sundays the dental clinic is closed, so all they can do is prescribe pain pills. How daft is that??? I wonder if you go needed emergency surgery they tell you all the rooms are closed and to come back on Monday???

Finally Monday I went to see a different endodontist in the city recommended by my parents neighbour - he cleaned out the canal again and said it all looked fine, was prob just some tissue in there that was hard to get out - supposedly this occurs plenty, and of course the tooth I had done is the most troublesome tooth in your mouth! I was numb for a few hours and fine, then when it wore off thought I was going to hit the roof. I had sharp nerve pain in the whole lower right jaw, stabbing away at my jaw. I was crying at my desk it hurt so much. I can handle pain, I mean, I live with it 24/7, but this was no ordinary run of the mill type of pain. When I rang the dentists office, his receptionist kept saying you're to expect pain and soreness after a procedure, blah blah blah. I kept trying to explain to her that I am not a person who just hurts a bit because they are uncomfortable. She finally started to understand what I was going through and had the doctor ring back. I went back to his office and he gave me marcane injections to numb it for long term, which only turned out to be about 5 hours but at least by then the anti-inflammatory meds had started to work.

I am still really really sore and can't open my mouth too much, and it's actually hurting more than yesterday so I'm a bit worried. I took another anti-inflammatory pill about an hour or so ago so hopefully that will help. Touch wood. A lot of wood!

To return to the point of this blog - my hip - all I can say is that with all the craziness going on I had to cancel my third PT appointment in 3 weeks so am v. v. far behind w/ that and not happy about it at all!!!

31 October, 2007

Meltdown

All of this non-hip related stuff is going to be the end of me yet. I must whinge for a bit, so please skip this bit if you're bothered by it.

First my acid reflux was killing me and my throat was on fire, then it turned out I have one heck of a head cold. I must have looked quite the picture today as both of my bosses insisted that I leave work as soon as they saw me. So I've been sitting on the couch, watching the telly and relaxing.

Then, to add to this joy, my tooth that had the root canal on Saturday became more painful so my dentist is putting in a prescription for antibiotics because he thinks there's an infection. Which means I have to go out again, feeling like crap and being in more pain than anything. I'm almost on the verge of popping a pain pill, which is a desperate measure. But as they say, desperate times call for desperate measures.

Please, whomever put this curse on me, enough is enough, I can't take it anymore.

30 October, 2007

PT update

They worked me over pretty good last night. I was doing a 5 lb weight for the leg lifts with the stim - impressive since I wasn't able to do that before surgery. Also, S told me I can try walking everywhere with one crutch and see how that goes. He doesn't think I'm ready for no crutches, but I'll take what I can get. Lets hope I didn't just jinx myself!

29 October, 2007

6 week Post Surgery update

Well well my pretties, it's been one heck of a time these last few days! It's times like these that I wish there was a way to become the bionic woman. (The original, this new one is just not working for me).

To summarise the last few days:
Thursday I woke up with one killer of a sore throat. I am only too familiar with sore throats, and can tell what causes each one. This one seems to be from my never ending acid reflux. I have been taking meds for the acid reflux for a long time, and my doctor had wanted me to start reducing the amount this summer. However, when she found out that I was to have hip surgery and take anti-inflammatory meds, she said to keep taking the acid reflux pills. Anti-inflammatory drugs are the devils work in my book and I try to avoid them at all costs, but I didn't seem to have a choice following hip surgery so I just went with it. The tablets are 500mg of Naproxen, taken twice a day. I was getting by for the first month or so, but by last week my insides had had enough and conceded defeat. Which is why I woke up with a burning throat.

My throat continued to get worse as the days went on so that I barely slept on Friday and Saturday nights. I think the last Naproxen I took was on Thursday, and about a week prior I had cut my dosage down to one tablet at day because of the intense pain in my stomach I had been experiencing. I tried taking something to numb my throat but it doesn't seem to make a dent, and I also sound like I've smoked three packs a day for the last twenty years.

To add to all the fun, Saturday I had a dentist appointment. I thought it was just to touch up one of my teeth that he had bonded a few weeks ago because of my tooth sensitivity. But alas, I was wrong. Secretly I held this fear that I was going to be told I was wrong and I needed a root canal. Having had three, you get to know when it's that. But I was in denial. Or at least thought if I denied it enough it wouldn't come true. I guess it was no surprise when the dentist brought it up and asked if I thought it could be that, and he did some poking and feeling and decided that was the most likely cause of my continual pain. I was ready to cry right then and there. The last root canal I had was only a little over a year ago, and it was a complete nightmare. The pain from the treatment and my TMJ was enough to keep me at home with ice packs and pain pills. Thankfully this tooth only had one root, and was towards the front and so the dentist was able to do the first part straight away. I go back in two weeks for the second part. I won't even mention the financial issues, but to give you an glimpse last year I used up all my FSA in the first two months from the root canal and crown. Seriously, I am losing my mind. But wait, it gets better.

Yesterday my mother and I were going out to do my food shopping. My nephew wanted to come and was sitting in the back seat when I got in the front. He did or said something to make me turn and my right hip went POP! I think (and hope it's not my denial but true) it was just my IT band which has done plenty of popping before. Yesterday I had more pain in my hip than I have for a while. I am not sure if it was the popping or the additional moving around with my nephew all weekend and him sitting on my lap, or just a combination of both. I am still a bit sore today and have PT tonight, so will tell the boys about it and see what they have to say.

The words "never a dull moment" could not be truer for me if I tried.

24 October, 2007

Stoned

Well, at least that's how I think it would feel, as I don't really know. I had to take a pain pill today - not because of the hip, but my fibro if flaring up big time. Between this crap weather and lack of sleep I feel like I've been run over by a mack truck, who then reversed, did it again, and once more for good luck.
Good thing it's relatively quiet at work because I don't know how I'd pull it off. I actually cancelled my PT for this evening. There is no way in hell that I am going to be tortured by someone else anymore than I am being at present by my own body. Oh well, I guess sometimes you have to just say WTF and take some rest. I just hope the weather improves quickly, and that I get some decent sleep tonight. I hate taking these bloody pills!

23 October, 2007

5 Weeks Post-Op

I apologise for my lack of attention to the blog, but life has been mostly dull as of late. Work is tiring and two days a week after work I have PT, so I don't get home till 8ish. Yesterday I left PT w/o icing - I was so hungry I said I'd do it at home, but had to go eat. An apple beforehand didn't cut it obviously.

The good news is they told me I can start putting more weight on my right leg when walking with both crutches, and I can use one crutch whilst I am home, but must use two when I'm out. The bad news is this means nothing to me because I've been very naughty and have been walking around my flat now for a couple of weeks without any crutches at all. I have no patience. I am able to get around from room to room but rest a lot in between. If my hip starts to hurt I just ice it. (Speaking of which, I think I've become an human icicle - all I do is ice all day long at work). I am not sure that I could go out and walk around all day without the crutches yet, I don't feel strong enough. I asked K last week at PT if he thought I'd be off of my crutches in a month, and he said yes. That is my goal because my first theatre tickets are in a month and there is no way I want to deal with crutches in a tiny seating area - so fingers crossed he's right.

I had been wearing my brace to and from work, especially to protect me on public transport because you would not believe how rude and obnoxious some people can be even when you are on crutches! I found that it helped them from not pushing into or leaning on my hip because if they did they'd get a big metal bit in theirs. Today I decided, mostly because I knew I was going to take a taxi both ways, to try it without the brace. It was ok, but I definitely felt a bit more sore. I'll have to see what I will do when taking the bus again.

As for my PT last night - they kicked it up a notch or two. I started doing leg lifts that I haven't done since before my surgery. I am definitely sore from them, but in an achy type of way, which is okay as it shows I am finally working some muscles. Better achy and sore than the old stabbing pain.

I did contact Dr. Kelly's office to see if I was to renew the anti-inflammatory meds. These are very bad for me because of my GERD, so was hoping to be able to stop. Unfortunately they want me to stay on them at least until my next appointment. I also mentioned the my left hip is snapping like crazy (IT band most likely) when I walk and they said they'd discuss that at the next visit. I seriously do not think I can go through this again, so I am praying that my left hip steps up and behaves itself and stops wanting the attention!

My biggest issue is still not being able to sleep. It's definitely been worse sine the surgery, and it's either the discomfort (the rest of me is in agony from the crutches and compensation) or the fear that I will sleep in a position that will be bad for my hip. Trust me, I wake up in pretzel positions on a regular basis so and I've already woken up at least once with my right hip in a very bad position. I've been needing to take my "magic" pills on a more regular basis, which is not good because even if I take them early evening, I am wiped out the next day. I am hoping this will all work itself out as I improve.

The one thing I am looking forward to this week is my appointment with my chiropractor. He has these wonderful masseuses that do Active Release Therapy and my back and neck are in desperate need of this. Thursday can't come fast enough!

16 October, 2007

4 weeks post op

4 weeks later and here's the scoop...

*I am still (frustratingly) on crutches. Most "normal" people would be off them by now, but because of multitude of issues, I am to stay on them for longer, though no one can seem to say when. The dr says "when I can walk with no pain and no limp". That being said, I have been wobbling around my flat w/o the crutches, and even did a silly thing and climbed the step stool so I could get my electric heater as it's been freezing in my flat. Stupid, yes, but I was desperate. One cannot describe how much I hate those bloody crutches, there are no words for it.

*Because of the crutches, my knees, shoulders, left hip and my hands/wrists have been beyond unhappy. This should not be taken by the average person as something they would experience, again it's just because of my other medical issues.

*Carrying packages is an issue when shopping, and I have been fortunate to have someone to help the last few weeks. This week is my first all by myself, and so far I have not had to go to the shops. My advice is to have someone stock up for you when they can.

*I can finally get my socks and shoes on w/o the assistance of the sock puller thingy and long shoe horn. I count this as a great accomplishment!

*I am still wearing my brace to and from places, but take it off when I am at work. The dr said that I should use this as long as I feel it is helping to support me. I had that reinforced on Friday night when I decided I was NOT going to wear my brace out, and only had a couple of blocks to walk. Unfortunately I had the wrong street in my head and we had to walk an extra long block up a hill. I was shot all around after that and my hip did hurt me for the rest of the weekend. To make up for it I stayed in and did nothing all day Sunday!

*Sitting all day is difficult, and I am meant to get up every 45 minutes to walk around. Getting up to use my crutches is the least appetizing thing I can think of, so it gets spaced out a bit more. I brought two ice packs with me to work and use them on and off all day long on both my hips to keep the swelling down.
*This week I start PT twice a week. I went last night and was pretty sore from the exercises and manual manipulation. The good news is I did 20 minutes straight on the bike!

*I was going to try to take the bus to and from work, but to be honest I have not made the best start with that. I am constantly exhausted so have been taking cabs, which is tres expensive, but sometimes more convenient than waiting and getting on and off multiple buses.

*Sleeping is still not great, but for me it never was. I have been taking pills to help sleep the last two nights, but on Fri and Sat did not need to as I was so tired, and had also drunk wine which helped!

That's about all I can think of now.

PS-I want to say a HUGE thanks to my friend T who spent last week looking after me, and was in all the way from Holland! I'm very lucky to have a friend like her.


12 October, 2007

Magic pills

Don't know what I'd do without them. I finally got an half way decent night of sleep! Still v. achy today but at least the sun is coming out and (touch wood) it's not meant to rain till next week!

I will post a four week update on Monday, happy weekend!

Article on Fibromyalgia that is very informative and thorough

Learning To Manage Fibromyalgia Syndrome

Darlene A. Clarke, R.N., M.S.N.President & Founder of the Northeast Ohio Branch of the EDNF. Darlene has Hypermobility Type EDS and Fibromyalgia Syndrome.

Individuals with EDS are often also diagnosed with Fibromyalgia syndrome. Fibromyalgia is a common and often disabling disorder whose cause remains obscure. Fibromyalgia frequently resembles other disorders such as rheumatoid arthritis and lupus. Individuals commonly complain of widespread muscle pain and tenderness, as well as fatigue and exhaustion after minimal exertion. A characteristically high “tender point” is evident. For individuals diagnosed with Fibromyalgia, learning to effectively cope with this disorder is essential to one’s emotional and physical health.

It's morning and as you awake you realize you are exhausted and you haven't even left the bed yet. The thought crosses your mind that for as tired as you are, you may as well have never gone to bed. You barely have enough energy to get out of bed and care for yourself, let alone being able to care for the children, or go to work or school. As you struggle to get out of bed, you realize that your body aches all over and you feel as if you are a 100 years old. You are stiff and can hardly move. What is wrong with you? After seeking one or more medical evaluations, you finally get the answer. Your physician informs you that you have Fibromyalgia syndrome. Such a big word that sounds ominous and must mean you have some dreaded problem. You have never even heard the term before.

So, what is Fibromyalgia syndrome?

Fibromyalgia syndrome is a common form of chronic, generalized muscular pain and fatigue. In some cases, the pain is so intense that it can be incapacitating.

1 Despite that Fibromyalgia does not result in serious, long–term target organ damage; it does have a negative impact on the quality of life similar to that of rheumatoid arthritis.

2 To effectively manage and cope with Fibromyalgia syndrome, it is imperative that one has a clear understanding of Fibromyalgia, its signs and symptoms, triggering factors and how it is treated and managed.

The term “Fibromyalgia” can be broken down into fibro (fibrous tissue), my (muscles), and algia (pain and tenderness). In Fibromyalgia there is pain in the muscles and fibrous connective tissues which comprise ligaments and tendons. Therefore, while Fibromyalgia feels like a joint disease, it affects muscles and their attachments to bone and joint deformity does not ensue.

3 Fibromyalgia can run in families, possibly suggesting an inherited predisposition. To date, the cause of Fibromyalgia is not known. It may lie dormant until it is triggered by an injury/trauma, stress, or a sleep disturbance. There are other theories as to what triggers Fibromyalgia. One theory is that the syndrome is caused by an infectious agent such as the influenza virus. Other suspected causes include extreme physical deconditioning of the nervous system brought on by a lack of exercise, and changes in muscle metabolism that can result in decreased blood flow to the muscles with fatigue and decreased strength the end results.

4 More recent research points to two key chemicals of the Central Nervous System that facilitate the regulation of pain messages transmitted to our brain. These two chemicals are substance P and serotonin. Substance P begins the pain–signal process following tissue injury. Serotonin reduces the intensity of pain signals in the transmission of pain and is very important in sleep regulation. Low levels of serotonin and elevated levels of substance P have been found in individuals with Fibromyalgia. These findings support the theories that individuals with Fibromyalgia have unusually high pain intensity messages transmitted to their brain as well as deficiencies in the inhibition of pain.

5 One clear fact remains: more research is needed on Fibromyalgia. Despite not being able to identify the exact cause of Fibromyalgia, individuals present with similar signs and symptoms.

Signs and Symptoms

Probably the most frustrating aspect of having Fibromyalgia syndrome, as in EDS, is that you “look healthy.” Compounded by the fact that test results are “normal,” it is difficult to convince others that something is wrong with you. Every X–ray and blood test your physician ordered has come back within normal limits. You embark down the path of self–doubt and frustration – is this pain real, or is it all in my head? Why is it so difficult to put a label to the signs and symptoms of Fibromyalgia?

Fibromyalgia is frequently misunderstood and confusing because the symptoms seen in this syndrome are also found in other conditions such as rheumatoid arthritis and lupus. Women are affected more than men and the symptoms usually occur first when an individual is between 20 and 40 years old.1 However, it must be noted that Fibromyalgia can sometimes affect children and the elderly.4 Recent research studies have established guidelines for diagnosing Fibromyalgia based on the presence of certain signs and symptoms.

Pain

The most common complaint from patients with Fibromyalgia is that they have diffuse “pain all over” – almost like the flu. Although in rarer cases, the pain is quite severe and disabling. More often, the symptoms often begin insidiously and may wax and wane in severity. In almost all cases, individuals complain of some degree of pain continuously. The pain is most often worse at “tender points” specifically located on the body. Fibromyalgia type pain generally is worse in the morning and late evening and often is associated with stiffness. Muscle groups that are used repetitively result in an increase in the level of pain you experience.

Fatigue and Sleep Disturbances

Have you ever awaked after sleeping and felt refreshed and rejuvenated? Most likely your answer would be “no.” Immense fatigue is frequently the debilitating aspect of Fibromyalgia. The fatigue may be exhibited as an overall tiredness and lack of energy, or as muscular fatigue and a lack of endurance. In either case, it can be difficult to perform activities of daily living such as caring for self or others, performing household chores, going shopping, or to function effectively at work. Keep in mind that it takes a tremendous amount of energy to deal with having chronic pain and this too can contribute to an individual’s fatigue.

Approximately 90% of individuals with Fibromyalgia complain of moderate to severe fatigue coupled with a lack of energy or the type of exhaustion that is found with a lack of sleep. In most cases, individuals wake up feeling tired even after sleeping all night. While their minds may be rested, their bodies feel as if they never went to sleep. Many are aware that their sleep has become lighter with frequent awakenings throughout the night. Scientific studies reveal that individuals with Fibromyalgia have abnormal sleep patterns and are deficient in Stage 4 sleep – the deepest stage.1,3,5 It is important to note that a secondary Fibromyalgia syndrome can occur with any connective tissue disease (EDS included) and may not necessarily be related to sleep disturbances.6

Central Nervous System Symptoms

As in other chronic illnesses, mood and mental changes can occur in individuals with Fibromyalgia. Many individuals feel “blue” or “down,” although only about 25% are clinically depressed. In most cases, depression and/or anxiety tends to follow the onset of Fibromyalgia symptoms and may be the result of Fibromyalgia and not the cause of it.3

People with Fibromyalgia may also experience numbness and tingling in their hands, arms, face, feet and legs. These symptoms can also be found in other disorders and usually require numerous tests before the diagnosis of Fibromyalgia is reached by a physician.

Other Problems

Muscular as well as migraine headaches are common in Fibromyalgia. Abdominal bloating, pain, alternating diarrhea and constipation are also commonly seen. They resemble irritable bowel syndrome or “spastic colon” in nature. Similar bladder spasms and irritability results in urinary urgency and frequency. The skin and circulatory system are sensitive to moisture and temperature changes resulting in temporary changes in skin color.2,3

Clinical Diagnosis

Currently, no definitive laboratory tests exist to make the diagnosis of Fibromyalgia. Rather, the diagnosis is made by a physician after obtaining the individual’s medical history and performing a complete physical examination.

A hallmark of Fibromyalgia syndrome is reduced pain thresholds at designated tender points, demonstrated upon palpation.2 According to the American College of Rheumatology, the diagnostic criteria for Fibromyalgia includes: a). widespread diffuse pain that has been present for at least three months and b). pain that is present in 11 of the 18 bilateral tender point sites (see figure 1) when 4 kg of force is applied by digital palpation.1,2,7 Recall your response the first time your physician palpated these 18 “tender points.” Did you say “ouch,” flinch, make a facial grimace, and attempt to withdraw away from your doctor or even jump? These are the usual responses elicited by an individual with Fibromyalgia. Frequently, patients are shocked by the level of pain they experience when these areas are palpated. Now that you know how Fibromyalgia is diagnosed, let’s look at the common triggering factors of Fibromyalgia.

Common Triggers of Fibromyalgia

Three common factors seem to trigger a flare in Fibromyalgia symptoms, physical factors, emotional factors and environmental factors. Keep in mind that your Fibromyalgia can become aggravated by these factors alone or any combination of these factors.

Physical Factors

Several physical factors can aggravate your Fibromyalgia. Infections are one type of physical factor that can produce the most profound exacerbation of Fibromyalgia symptoms. The second type of physical factors deal with ergonomics. The positions we maintain our bodies in has a direct correlation to the pain associated in Fibromyalgia. For instance, do you have a job that requires you use repetitive movements all day? Are you required to work in one spot with your arms elevated above your work surface? Do you need to remain in one position (i.e., standing, sitting or driving) for prolonged amounts time? If you answered “yes” to any of the above questions, you will be able to relate to the pain that results from maintaining your muscles in a sustained isometric position for any length of time. Ergonomics also plays an important role at home. It’s often difficult for someone with Fibromyalgia to push a vacuum cleaner, wash walls, paint or prepare meals. These tasks require the use of shoulder muscles to maintain arms in extension at some level in front of our body. What generally happens is that an ache begins in the neck, shoulders and upper back. The ache rapidly turns into pain that elevates in intensity as it slowly radiates up and down the back. You feel as if you can’t maintain your arms in this position any longer, and you quickly return your arms to your sides as you wait for the pain to slowly ebb away. Most, if not all of you, can relate to this all too familiar type of pain.

Emotional Factors

Stress is something that each of us has to deal with on a daily basis. Unfortunately, emotional stress is a prominent factor aggravating Fibromyalgia. We are faced with stressful situations at home, work, school, driving your car on the highway etc. It isn’t difficult to identify situations that aggravate your Fibromyalgia symptoms – that’s the easy part of the equation. The trick is to avoid or attempt to modify any stressful situation.

It is extremely difficult to deal with those situations in which any stressor is unrelenting. These types of situations can present themselves in the home with family members or in the workplace with coworkers or supervisors. In these situations, one must look at not only the circumstance, but how you react to the stressor. Ultimately, it comes down to dividing these stressful situations into two categories: those that you have control over and those you have absolutely no control over. In circumstances that you have no control over, it is imperative that you learn to alter your response to those particular situations. Save your energy for those battles that you can emerge victorious.

Environmental Factors

How many times have you been able to predict the approaching weather without having looked at a weather map? Probably too numerous to count. You feel like you are a human barometer with the ability to predict weather changes before they occur. Most likely you have found that when the barometric pressure drops, it is followed by rain, cold, snow, and fog – all of which aggravate your symptoms.

Many individuals with Fibromyalgia report that certain types of artificial lighting, cold drafts or irritating noises often result in a flare of their muscle pain. When was the last time that you were able to enter a pool that wasn’t heated? Just a guess, but it was probably many years ago. Most individuals with Fibromyalgia do not tolerate swimming in cold or cool water. We are usually found in the heated pools that others say are “too hot to swim in” or in hot tubs. The goal is to determine what factors aggravate your Fibromyalgia and either eliminate them if possible or at least modify them. Now that you know what factors can trigger your Fibromyalgia, let’s look at how it is treated and managed.

Treatment and Management

Since Fibromyalgia’s definitive cause is not known, current treatments are focused on relieving painful symptoms, not necessarily curing them. Additionally, the treatment program prescribed by your physician will be individualized to address your specific needs.

Numerous treatments have been employed over the years for Fibromyalgia. No one method has been entirely successful, but several methods will be prescribed by your physician in an attempt to control your symptoms. A sense of overwhelming relief comes with the validation of your symptoms and a diagnosis. Just knowing the name of your condition will not be enough though. Your physician and healthcare team will educate you and your family about Fibromyalgia. Specifically, you’ll be informed about your prognosis, possible causative factors, the aspects of treatment and specific body mechanics techniques. This education will prove invaluable to you. If you are taught about what to expect and how to deal with flare–ups, you will be able to control your Fibromyalgia. The goal of education is to moderate the effects of Fibromyalgia on your life. Only then will Fibromyalgia not become your entire life.

Medications may be prescribed by your physician to control pain and improve deep Stage 4 sleep. If pain is prominent, your doctor may prescribe a low dose of an analgesic or nonsteroidal anti–inflammatory drug, although most nonsteroidal anti–inflammatory drugs are marginally beneficial and carry the risk of side–effects that outweigh their benefits. Therefore, you will be most likely instructed to use over the counter medications such as acetaminophen, aspirin or ibuprofen to relieve pain and reduce stiffness. If you are currently on a nonsteroidal anti–inflammatory drug to help manage your EDS, your physician will likely instruct you to take acetaminophen, not ibuprofen or aspirin, to control your pain.

To improve Stage 4 sleep, your physician may prescribe low doses of tricyclic antidepressants (Elavil, Sinequan) or the muscle relaxant cyclobenzaprine (Flexeril). These drugs are structurally similar and they block the re–uptake of the neurotransmitters that regulate deep Stage 4 sleep.3,8. These medications carry the risk of potential side–effects which include: drowsiness, weight gain, dry mouth and constipation to name a few. Do not be discouraged if you do not respond to the first medication(s) prescribed. Your doctor may need to adjust dosages or change drugs to achieve an improvement.

Individuals with Fibromyalgia should practice good sleep hygiene to promote sleep. Bedtime rituals can relax you in preparation of sleep. These bedtime rituals can include: taking a warm bath or shower, reading a novel, watching a relaxing television program or listening to soothing music which can promote sleep. Attempt to follow a regular sleep schedule and go to bed at the same time each day. Sleep eight hours nightly if possible. Avoid alcohol, caffeine and tobacco before retiring – they will disturb your sleep. Also abstain from taking midday naps.

Exercise is a key element in Fibromyalgia management. Your physician will recommend that you slowly increase your aerobic fitness with structured, low impact activities such as swimming, water aerobics, walking, or riding a stationary bicycle.2,3,7,8 Research has indicated that aerobic exercise improves sleep, enhances endorphin release and has antidepressant effects.2 It is important to check with your physician to ensure that the exercise program you have chosen is not contraindicated in your specific type of EDS. Remember to always stretch your muscles before engaging in any aerobic activity. Increase your exercise program gradually to reduce the chance of injury. As you continue to exercise, you’ll notice that you feel better, have more endurance and experience a reduction in Fibromyalgia symptoms. It’s worth the possible pain and fatigue felt initially to achieve these end–results.

Always practice proper body mechanics and apply ergonomic principles at home, work and at rest. These techniques will prevent injury and reduce flare–ups of Fibromyalgia symptoms.

Your doctor may prescribe various physical therapy treatments. Possible treatments include: massage, heat or ice applications, ultrasound or whirlpool therapy and microvoltage electrical stimulation. These are all passive physical therapy techniques with varying results from individual to individual. These treatments are usually prescribed for flare–ups and are employed for short periods of time.3,8

Taking Control of Fibromyalgia

You can engage in several actions that will help you gain control of your Fibromyalgia. First and foremost, listen to your body. Identify those triggers that aggravate your symptoms and then avoid or at least minimize them. Get your stress level under control by practicing relaxation techniques. Relaxation techniques are primarily effective for chronic pain and have many benefits. Relaxation techniques enable you to reduce anxiety, pain and stress, reduce muscle tension pain and relieve the helplessness and depression associated with chronic pain. Despite having chronic pain and fatigue, learn to develop a positive attitude. Remember that if you have a constant negative attitude, your Fibromyalgia symptoms will exacerbate. Look for the good in every situation – it’s there, but you may need to look closely.

Eat healthy and avoid fat in your diet. Excess weight is detrimental to your body and can aggravate your symptoms. Eating properly also maintains your health and avoids illness. Keep in mind that an illness (i.e., cold, flu, bacterial infection etc.) can be a triggering factor for your symptoms.

Educate yourself, family and healthcare providers about Fibromyalgia syndrome. Remember that knowledge is a powerful weapon in coping with any chronic illness. Knowledge also helps you to take control of your Fibromyalgia and reduce the exacerbation of its symptoms.

Lastly, seek support from others with Fibromyalgia. Check with your physician, healthcare institution, and within your local community for a Fibromyalgia support group. It is extremely beneficial to receive support and understanding from others who have the same type of problems from Fibromyalgia as you do. Connecting with a support group also helps you and your family to cope with having a chronic illness. And who knows, maybe someday you will have the opportunity to offer support to someone else just diagnosed with Fibromyalgia. I guarantee it will be one of the most gratifying and fulfilling experiences of your life.

Conclusion

Receiving a diagnosis of Fibromyalgia syndrome is an important first step in managing this condition. It is not the last step though! It is imperative that you have a clear understanding of Fibromyalgia, its signs and symptoms, triggering factors and treatments. Learning to effectively cope with this disorder is essential to one’s emotional and physical health. It is only then that you will be able to manage your Fibromyalgia and prevent it from becoming your whole life. While there isn’t a cure for Fibromyalgia, there are treatments that are effective in managing its symptoms. There is life after finding out you have Fibromyalgia. Tomorrow will be better and holds the possibility of a cure!

References
1 Fan, P.T., & Blanton, M.E. (1992). Clinical features and diagnosis of Fibromyalgia. Journal of Musculoskeletal Medicine, 9(4), 24–42.

2 Wilke, W.S. (1996). Fibromyalgia: Recognizing and addressing the multiple interrelated factors. Postgraduate Medicine, 100(1), 153–170.

3 Arthritis Foundation, Inc. (1995) Fibromyalgia Syndromes, 1–12.

4 Dunkin, M.A. (1993, September–October). Fibromyalgia: Out of the Closet. Arthritis Today, pp. 24–28.

5 Dunkin, M.A. (1997, September–October). Fibromyalgia: Syndrome of the ’90s. Arthritis Today, pp. 41–47.

6 Ignatavicius, D.D., Workman, M.L., & Mishler, M.A. (1995). Medical–Surgical Nursing (2nd ed.). Philadelphia: W.B. Saunders Company.

7 Goldberg, D.L. (1990) Fibromyalgia and chronic fatigue syndrome: Are they the same? Journal of Musculoskeletal Medicine, 7(5), 19–28.

8 Sherman, C. (1992) Managing fibromyalgia with exercise. The Physician and Sports Medicine, 20(10), 166–172.

Just finished reading this interesting article

Pain & the Hypermobility Syndrome by Prof R Grahame CBE, MD, FRCP, FACP University College Hospital, LONDON.

When the Hypermobility Syndrome was first put on the medical map in 1967, it was defined as the presence of musculoskeletal symptoms (predominantly pain) occurring in otherwise healthy individuals. Thirty years down the line we now think that there are probably two types of hypermobility.

The first is a milder type occurring in people whose joints are just like everyone else's but which have the capacity to move more than most people's joints. The other, a more marked form, has features that suggest that it may be part of an inherited connective tissue disorder similar to the hypermobile form of the Ehlers-Danlos Syndrome, formerly called EDS III. It probably is EDS. At the present time we simply do not know for certain whether or not HMS is merely a less severe type of EDS III. Pain can occur in other forms. For the rest of this article, in order to avoid confusion, I will refer to it as one condition, the HMS/EDS. There are many people with joint hypermobility in the community who experience no (or very little) pain. Most of them probably do not even know that they are hypermobile at all. Then something happens, and they start getting pains for the first time in their lives. Usually unexpected exercise or a change of job or lifestyle provokes the onset of pain. When ever symptoms commence, and irrespective of the cause of the hypermobility, the term 'Hypermobility Syndrome' is used to describe the condition. Hypermobile people without pain are just called hypermobile people.

A little known fact is that hypermobility occurs in many individuals in a few joints only. It does not necessarily have to affect all one's joints. Even hypermobility in a single joint can cause pain and/or instability in that joint; the diagnosis is still Hypermobility Syndrome (HMS/EDS).

People are born hypermobile. It is in their genes. It is the way they are made. So how is it that people with hypermobility can be literally fine for decades, only to be laid low from widespread pain, often out of the blue, which may make its unwelcome appearance during childhood, adolescence, or adult life? To explain these curious and seemingly inexplicable happenings, we postulate that the affected person, in this case the hypermobile person, had an inbuilt weakness of her (it is usually a 'her' but not always) strength-providing collagen or similar protein. This weakness renders body tissues less robust and hence less able to stand up to the physical strains of everyday life. We can explain a lot of the pain that arises on the basis of a series of (often quite minor) injuries that occur whenever there is a mismatch between the physical demands on one hand, and the strength of the parts being asked to perform them on the other. There is a whole host of painful injuries that can result, ranging from dislocations to fractures, disc prolapse, ligament sprains, muscle strains, pulled tendons (like tennis elbow or plantar fasciitis), etc.- conditions that can happen to anyone, but which occur more easily in those with the HMS/EDS. If one only knew one's strength (or lack of it), one should be able, in theory at least, to stay within the safety margin and thereby protect oneself from injury. Up to a point this is so. Many people with the HMS/EDS are able to modify their lifestyle and do just that. Others find it more difficult.

A joint that is beginning to wear starts to lose its cartilage or gristle, which is essential for the smooth movement between the adjoining bones. This wear heralds the onset of osteoarthritis, a condition painful in its own right. It is a very common form of arthritis in middle and old age, and one to which hypermobile people seem to be prone, in many cases at an early age. It is important to establish as far as possible to what extent the pain is due to trauma/overuse or to early onset osteoarthritis, as the treatment is very different. The emphasis with the former is on prevention, while with the latter it is on treatment by one form or another.

However, neither susceptibility to injury or overuse (repetitive injury), nor osteoarthritis, explains all the pain that is felt in the HMS/EDS. There is more to it than that. And here we get into a rather grey area, where there is more speculation than fact.

Let us try to piece the jigsaw together. Pain is something we feel. Even if it has a physical cause, as it undoubtedly has in the HMS/EDS, it is still a subjective experience. It is often accompanied by an intense sense of exhaustion. the severity of the pain we feel is greatly influenced by our state of mind. If we are upset or agitated it tends to increase. If we are content, relaxed or just happy it tends to diminish. The HMS/EDS people are often in the former category, and for good reason! Lack of understanding of the condition is widespread, and this, coupled with failure to receive adequate treatment for relief of symptoms, leads to frustration, resentment, anger (and lots more emotions which I could list but readers know them all only too well!) and, ultimately depression. These emotional influences can amplify pain, but they do not cause it.

Another piece of the jigsaw is a mysterious condition called fibromyalgia. This condition causes widespread chronic pain in muscles and is identified by the finding of multiple 'tender points' at specific sites in the body. For years the debate has raged as to whether it is a physical disease affecting the muscles, or whether it is an emotional disorder. The prevailing view is that it is probably some form of distress signal that can arise in people with a number of different and unrelated conditions. How this relates to hypermobility is that it has been shown that hypermobility and fibromyalgia occur together in the same person more often than one would expect on the basis of a chance happening. It does not mean that they are part of the same condition. It would, indeed be very unlikely that what is clearly an acquired disorder (fibromyalgia) could be an integral part of what is clearly a genetic one (HMS/EDS). More likely, the fibromyalgia should be regarded as a signal emanating from a distressed HMS/EDS person. But fibromyalgia occurs only uncommonly in the HMS/EDS. We must look further afield.

It seems quite likely that there may be a totally different explanation for the burden of pain borne by people with the HMS/EDS.

Here are two clues:

The first clue relates to the sense called proprioception, which means knowing where parts of one's body are in space. If you close your eyes and somebody bends your finger for you or picks your arm up, you know immediately how far your finger is bent or where your arm now is. That is because you have good proprioception. Scientists have shown that people with the HMS/EDS are not quite as good as other people in knowing exactly where their fingers or arms etc are in space. This could lead to a further increase in the risk of injury.

The second clue is the discovery that patients with the HMS/EDS for some
reason do not appear to experience the full anaesthetic affect of lignocaine injections when these are given for dental purposes, minor surgery or for epidural anaesthesia (I wonder how many readers are nodding their heads as they read this!).

At the present time we do not know quite what either of these clues means or whether they relate to one another. But they do suggest that people with the HMS/EDS, in addition to their proneness to injury, dislocation and osteoarthritis, may also have a fault in the way their pain signals are picked up for onward transmission to the brain, where they reach consciousness. Research work is in progress to try to sort out this enigma. Much more needs to be done. Watch this space!

Readers will know that many conventional methods of treatment, of the kind offered for rheumatic complaints in general, are not particularly helpful in the HMS/EDS. Physiotherapy still carries the best prospect for pain relief, and it is encouraging that more physiotherapists are training in methods that are helpful in this condition. Another noteworthy development is the network of units throughout the country that are offering pain management programmes, an approach which has been shown to be beneficial in the HMS/EDS where intractable pain is present.

Source: http://www.hypermobility.org/

11 October, 2007

Again with the lack of sleep

Yesterday I had another PT appointment. I was pretty knackered before I even got there. I sit mostly at work but was told to move around every 45 minutes, which I am sure has stretched out to longer. I just don't have the energy as the crutches are wiping me out and killing my hands. When I left for PT, the timing was bad as all the cabs were "off duty". I was ready to cry until finally a nice cabbie that was off duty stopped to ask where I was going and he was kind enough to give me a lift. The walk to PT from my office is about two long blocks and four short blocks, but there is NO WAY I could have made that on crutches. I am so tired from the crutches, I think you really expend a lot more energy with them than just walking normally.

Pain and torture was excruciating yesterday. I did the bike for 15 minutes, and then some internal rotation and kneeling on the table. When K, one of my PT's, came over, I told him that my psoas has been REALLY tight and driving me nuts. His response was that we have to keep it tight per the Dr. I said yes I know that but the Dr also said that he wants it to move smoothly, not just get stuck with extremely limited ROM. I understand it's a fine line, but I can't have this feeling forever because it will drive me nuts, but I also don't want the laxity to get to where it was before the surgery. I'm losing my mind. So K massaged the psoas and then all of the scars, and started stretching me A LOT more than has been done. It was uncomfortable but bearable, until all of a sudden I had a shooting pain down the outside of my hip. I don't know what triggered it but it lasted about 5-10 minutes as was horrible. After that and some manual resistance exercises with K I did the electrical stim for about 10 minutes and then iced. I am spending about 2 hours from start to finish there.

After I finally changed and got all of my things together, I went down to go home. I didn't even entertain the thought of a cab as it was rush hour so was beyond pleasantly surprised when I reached the corner and saw an available one. He was so nice he even got out to open the door for me. It was such a relief to not have to take the bus home. I was a zombie by the time I got back to my flat so ordered some (not very healthy) dinner but I didn't care. I spent the evening on the couch and then decided to take a muscle relaxer for my psoas. I must have been in more pain all over than I thought because that didn't even knock me out. My fibro is flaring up something awful with this crappy weather and my whole body is aching, which is why I didn't sleep. When the alarm went off this morning and could barely move. I can't say "when I woke up" because I had been up for ages. It took me an hour or so to just get up to get to the loo. Thankfully my friend T is staying with me this week and was able to help get me sorted and then we took a cab down to work.

So I am sitting here taking a break and have ice on both my hips, but wish I had more ice packs for my hands and shoulders. I wish I could have just stayed in bed today but will go home straight after to rest and will try my "magic pill" tonight so hopefully some sleep will be in order.

Next week I start PT twice a week, G-d give me strength!

09 October, 2007

Snail

Today was my first day back at work. I am not even done with the day but am pretty wiped out. NYC buses really need to get their act together. Why do they all have to hang out for a coffee klatch and then at the same time all arrive? I waited for almost half an hour for the 5th ave bus today. During that time my left hip started to kill and my back hurt from my bag, which has turned into an intense neck pain now. So frustrating. At least it didn't rain on me, though it looks like the heavens are going to open up at any time. But I still feel like a snail going at this pace. I am normally a very quick walker, so it is so frustrating!

My office is being amazingly understanding and letting me come in a little late this week, which helps to take the pressure off. And most of the bus drivers, whilst they can't tell time, are very patient with me boarding the bus. I am hoping each day just get a bit easier.

Pain in the right hip has been tolerable, and I haven't (touch wood) had the need to take a pain pill in a few days. I did take a muscle relaxer last night because my psoas has been so tight for the last few days. I notice it especially when I walk.

As for PT, they couldn't get me a late appointment for this week, so I rang yesterday to see if they could squeeze me in, but no luck. I rang back asking if there was anything all week, and they said possibly on Wednesday but they'd get back to me. I still haven't heard so will ring them shortly. I don't really want to miss PT at the fourth week out. I did have my appointments booked for the next four weeks so at least I don't have to worry about that.

PS - just heard from the PT dude and thankfully they can get me in tomorrow at 4pm, so am relieved about that.

07 October, 2007

The Surgical Record

The HSS Operative Record

Patient Name: Me Date: 17 September 2007

Attending Surgeon: Dr. Kelly
Operating Surgeon: Dr. Kelly

Preliminary Diagnosis: Right hip labral tear with snapping psoas, Synovitis, Combines Cam and Pincer Impingement

Postoperative Diagnosis: Same

Name of Operation: Right hip arthroscopy, Labral tear, debridement, synovectomy, partial psoas and acetabular rim decompression with labral re-fixation and a cam decompression.

Anesthesia: spinal
Estimated blood loss: less than 20cc
Inoperative fluids: one liter of ringer's lactate
Drains: none

Indications: The patient is a 37 year-old female with progressive right hip pain, right worse than left. The patient had combined Cam and Pincer impingement with snapping psoas and inflammation. The patient had persistent symptoms despite non-operative measures and given these persistent symptoms, the patient was indicated for right-hip arthroscopy and associated procedures.

Procedure:
The patient was correctly identified in the Holding Area and the patient was brought to the Operating Room. The spinal anesthesia was administered. The patient was placed in supine position and approximately 10mm of distraction was achieved from the acetabular joint. The right hip was prepped and draped in the standard surgical fashion.

The lateral portal was established under fluoroscopic guidance using the Seldinger technique. A distal lateral accessory portal and a posterior portal were both established under direct visualization. The arthroscopic examination of the central compartment demonstrated a labral tear anteriorly with a significant synovitis with areas of early delamination of the anterior and superior cartilage consistent with Cam impingment and crushing of the synovium and labrum anterior, superiorly consistent with Pincer impingement. There was also extensive tension on the psoas anteriorly consistent with psoas impingement.

The cartilage on the femoral head was otherwise in good condition. The ligamentum teres was in good condition. The patient had a (looks like a word was whited out) injury posteriorly. At this point, a wide synovectomy was performed using the Tac-radio frequency probe starting posteriorly and working our way anteriorly. The labrum in the front where it was torn was debrided gently preserving the majority of the labrum. A capsular cut was then made connecting the anterior and anterolateral portals for elevation of the capsular tissue off the acetabular rim lesion.

The acetabular rim lesion was identified and then a 5.5 mm high speed bur was used to recontour the acetabular rim. The fluroscopy confirmed the appropriate resection. At the completion of the acetabular rim decompression, the psoas was partially released over the front of the joint where it appeared to be compressing the labrum anteriorly. The labrum after it was debrided was stabilized through the transition zone cartilage using the radio frequency probe but no suture anchors were required.

All cartilaginous loose debris was evacuated from the central compartment at the completion of the synovectomy. A partial psoas release, acetabular rim decompression and labral debridement. The scope was placed in the peripheral compartment as the traction was released. The hemi hip joint was placed back in the socket. A Cam lesion was identified and then a Cam decompression was performed using fluoroscopic guidance to confirm the appropriate resection.

The dynamic arthroscopy was performed demonstrating the absence of any residual impingement. At the completion of the Cam decompression, no further pathology was identified. The instruments were removed from the joint and the arthroscopic portals were closed with 3-0 nylon sutures and a marcaine cocktail was placed into the joint. The wounds were cleaned, dried. Sterile dressings were applied. The patient was awakened from anesthesia and brought to the Post Anesthesia Care Unit having tolerated the procedures well.

One step forward, two steps back

At least that is what it feels like at times. I have slept the last two nights but only because I've taken my "magic" pills. I am trying to get as much sleep as possible to get ready for next week.

My mother and I did a 'test run' to the office on Friday. I was originally going to do it during rush hour, but since I hadn't slept that night and was so sick from the pain killers, it was delayed for a few hours. We ended up leaving about 12.10 pm from the flat. I had to walk one block to the crosstown bus, take that to 6 long blocks to the Park, and then switch to a downtown bus. There was a lot of traffic from road works. We finally reached my stop, got off and walked a block and a half to the office. The whole trip took over an hour. I was pretty wiped out when we got to the office, but at least I made it. I waited there for a bit to see one of my coworkers who was out to lunch, and also thought to ring Dr. Kelly's office to see if they had the surgical report yet. After a couple of calls they finally faxed it to me. I will see if I can post it as the PDF or will have to retype it all. I was also extremely relieved to find out that my bosses will be out on Monday and that M arranged for me to work from home. It felt like a stay of execution - not that work is horrid, just getting there at present is quite a workout.

After we left the office we stopped to get something to eat, I had just a little as I was still queasy from the pain meds, and then we took the bus up Madison. It was not even rush hour but the bus, when it finally did show up, was absolutely packed. No matter when I take this bus line it seems to always be delayed and always be packed like a sardine can. I had to ask a not very happy looking girl to get up so I could sit down. Unfortunately my mother had to stand and I felt so bad, she was getting jostled all about. Some woman decided to step on my right foot with all of her weight for a minute or so, she seriously wouldn't move, put all of her weight on it, till I finally let out with an expletive! My toe throbbed for over an hour. It's like constantly getting beat up, no matter how hard you try.

Yesterday was a bit of a late start, but we didn't have any place to go so it was ok. I had some pictures from my Gran's flat that we needed to hang so we did that. A friend was meant to come by but never heard from her so we went across the street to Starbucks and sat outside for a couple of hours, then I tried to walk around a little bit. I am still wearing my brace as I feel much more secure with it and the doctor told me that I should wear it as long as I feel so. We ended up going to a German restaurant near me, and even though it was early the place was very crowded as it is Oktoberfest. It was pretty good but very expensive. And it also delayed my return to my flat. I normally love my flat but am so tired of it.

Think I will go eat some breaky and do my PT. I have to go shopping later to get lunch supplies for the week also. My mother is going home today and I am stressed about that. She has been a life saver these last few weeks. I wish I had some dosh so I could send her on a well deserved and earned holiday, this year has been rough for her, not even including my surgery. I should start playing the lottery! My friend T is meant to stay with me tonight and for at least part of the week, so I won't be completely alone which is good. I am getting around better in the house but I still feel better if someone is around for the time being. It's all so stressful.

On one other note, this has been a very difficult recovery, not just the hip itself, but all of my other body issues (hands, shoulders, etc). I would like to thank those people who spent time with me. Even a brief visit was such a welcome break from the monotony of this slow recovery - so just wanted to say thank you.

05 October, 2007

Learning the limits

Yesterday was my third PT appointment. We didn't seem to do as much as the last two, which was okay with me since various parts of my body, sans the right hip, were killing me. One of the PT guys showed me how to wrap my wrists for extra support because my hands are killing me with the crutches. I know it seems all I do is whinge, but this process is getting the better of me. Dr. Kelly was meant to talk to the PT guys about how he wants me to proceed, but it seemed no one had spoken to him so I had to ask them to contact him so we're all on the same page. One of the PT guys did not seem to think it was such a good idea to return to work on Monday, but I really don't have a choice. Mostly I am going mad just sitting here. He is afraid I will do too much and flare up with the various multitudes of bodily issues I have. I guess we'll have to just see how it goes and I will just have to do what I can.

I had it in my head since earlier this week that after PT I would take my mother out for a well deserved lunch at a favourite little bistro that was not too far from the PT office. Unfortunately once I get something into my head that's it. And that was where it all went wrong.

After PT we went to my bank on the corner and then walked a few blocks to the restaurant. Looking back we really should have taken a taxi, but I am so frustrated from not going anywhere that I decided I was going to do it all by myself. I admit it, I am an idiot.

Thankfully there was a table free when we got there, and we had a lovely lunch with a little wine. My right hip started hurting then. After lunch we were going to try to take the bus back but I was too tired and we were very lucky that a cab was free, as most were off duty at that time.

I was so knackered from this trip that I ended up passing out for a while when we got home. I did the Game Ready for my right hip and that helped for a little bit but my psoas was really hurting as well as my right knee and left hip. This kept me up for a while and I ended up taking a pain killer so I could hopefully get some sleep. I eventually did fall asleep for a little bit, but have now been up since around 5 am. I took another pain killer around 6 am and am very loopy and queasy from it. I haven't been this out of it from them for a while, I guess I had started to get used to them but now that I've been not taking them regularly I am more affected.

I was hoping to do a test run to the office during rush hour this morning with my mother, but I am definitely not up for it now. Hopefully later on we will be able to do it.

01 October, 2007

Catch 22

I am going off of my mind! I am so bloody bored I could scream. The problem is anytime I try to move around more, my hands and hips and shoulders get very upset with me and start to complain in intense anger. There is no winning in this situation. I did cave and take another pain pill today, though it was the first time since Friday.

I had to go back to the dentist today for some work and he shot me up with three injections in my mouth! I am the queen of torture at this point. After we went to get my new specs and then I was dreading coming home so much I rang one of my close friends who happily had just gotten home, so we popped over there for a nice visit.

I took another magic pill last night and slept fairly decently. I have been having the most bizarre nightmares for the last few weeks, it must be all the stress and drugs. But at least I got some sleep so I won't complain.

My mother and I have been trying to suss out how I can do all sorts of 'little' things that you take for granted by myself, as next week I have to return to work and will not have her around to help. You don't realise how much it truly is the small basic things. For example, getting a sock on my right foot is a nightmare. Thankfully my mother found this sock aid pull on she had bought for my dad when he had hip replacement surgery and it seems to work. Washing and drying my lower legs is another difficult task. I finally sussed out how to get lotion on my lower right leg - with my left foot! I'm getting quite creative. Quite a learning experience for sure! I keep trying to do more and more myself without overdoing it at the same time. Opening doors though is one thing that is very difficult, so not sure how that is going to work. Oh well, onward and upward as they say.

30 September, 2007

Just can't get the hang of it

Sleeping that is. I took one of my "magic pills" on Friday night and I actually slept through the night. Well, sort of. At least when I would wake up and shift positions I passed out straight away. Unfortunately that magic didn't work quite as well last night.

Yesterday was a big one. There was an Oktoberfest around the corner from my flat, just one block mind, so I thought it would be nice to go out and test the walking. I was okay getting to the end of the block, but after stopping for a slice, I was wiped out and getting back home was beyond a challenge. The hip wasn't too bad, but the left hip was hurting like hell and I thought my hands were going to fall off. I iced all four when I got home for a bit before we left for the island. I must have been exhausted because I slept most of the ride out there and then for another hour or so when I got home. Perhaps that is why I didn't sleep too well last night.

My mother just got back so I suppose I must get myself sorted with a shower, PT, etc. so I am signing off for now.

pics of the machines

My nephew hanging out with me whilst I am on the Game Ready machine. This one freezes and applies pressure to the hip. The millennium crutches are in the back.

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The CPM Machine - Constant Passive Motion

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It is much more attractive with an adorable nephew posing in it...

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The CPM in action. It moves your leg back and forth from a 0' to 90' angle. It also weighs a hell of a lot!

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I just had to add this one of my nephew!

28 September, 2007

L O N G recovery ahead

Yesterday I had a lovely outing sitting outside across the street at Starbuck's. It was the first time I've really gone out for anything other than to and from a place. We sat out there for a little over two hours which was huge for me as I have not been able to sit in a chair that long since surgery. Unfortunately the fresh air didn't help me sleep any better though. I would kill for a good 8 hours in-a-row of sleep. Again, not so much for the pain, which is getting better on the operated side (unlike the rest of my body which is getting worse), but lack of comfort. I was even desperate enough to try to sleep on my stomach, which didn't last very long.

Today I went for my post-op today and the sutures were removed. They told me that I couldn't shower for a day or two as when they remove the sutures they put a tape with some sort of sticky glue stuff on top and want that to stay put for a while. I wish I had known that as I had thought I would be able to take a shower after the visit, so neglected getting up early to take one before. Oh well.

Dr. Kelly came in afterwards and asked how I was doing and moved my right leg around. He said that I could cut the CPM down to one hour a day, but I asked if I needed to keep it because I would have to pay another $350 for two additional weeks. Thankfully he said that was fine to return it and I've seen the last of that machine - they are coming to pick it up today! He then showed me the pictures they took when they were doing the surgery. I cannot believe how red it was inside, really bright, bright red! He showed where I had a bone spur and where they shaved that off and the other bone that was shaved down as well, and also my psoas before and as they were cutting it. All very amazing to look at. Unfortunately the post op report was not typed up yet, but I was told I could ring them next week and they would fax it over. We went over my PT and he said he actually wants me to go very slow, and that my recovery would take about six months. I was not too surprised from this, but it was still not thrilled about it. The key thing is he wants my psoas to stay slightly tight since I have the laxity issue, but at the same time not scar up completely. It is a very fine line and my rehab is going to be very specific because of my multiple issues. He already told me to change one of the exercises I was told to do as he does not want me to externally rotate the leg too much. He said internal rotation is fine for now. I asked if he could reaffirm this with the PT guys as they were having a hard time believing me about having to do only two hours on the CPM and four. I also asked him why he had to make four incisions and he said that was because they had to get to the other side of the bone to cut it down. Fair enough I suppose. He said also to use the brace as long as I want because he doesn't want me to hurt at all. I am to try to put more weight on the leg but only as I can tolerate, it's very important to not inflame the hip. Regarding the crutches I will most likely be on them for a few more weeks. I kept laughing in my head when everyone kept saying I'd be on them only two to three weeks. I knew this was going to take a long time to be able to walk again without pain. But I don't want to mess up everything that was done so I will do exactly as I am told. The last thing I could deal with is having to go through this all again (poo poo, touch wood, etc.).

After I had been home for a couple of hours I noticed that one of the incision site tapes had liquidy stuff seeping through it. I just rang the office and spoke to Arianna. She said that sometimes the incisions open up after the sutures are taken up and that is should heal by itself, and to keep and eye on it and make sure it stays dry. Hopefully it will do this quickly.

I think that's it for now. I'm tired so going to have a bit of a kip if possible.