Ouch!

I haven't taken the anti-inflammatory in a couple of weeks b/c my acid reflux has been so bad, and now my hip, the right one, the post-op one, is not happy with me at all. I went to the pool yesterday, but it was hurting before that. I guess I need to start taking them again, but then what am I going to do about my stomach? The pain is getting bad there and I'm thinking I probably have some damage, so I've been taking the Protonix 2x/day. Why is everything always a catch 22? Frustration!!!

At least I have received a happy surprise. My sister in law is bringing in my nephews tonight and we will hopefully get to see the balloons being blown up and then go to the parade tomorrow. Any time with them is the best!

Oh, and I heard back from two of the people I emailed yesterday so will contact them on Monday after the holiday for further information and decide who I want to see. That is definitely good news! They said they both do the dry needling! YAY!

Knackered

I just can't seem to feel good since I've been back from Holland. It's now been 3 weeks.
I saw the chiro again on Friday, and that was good. I still am so tight around my neck, shoulders and upper back though. The pins and needles have been v. minimal, but this morning I woke up and it happened very strongly for a few minutes. Thankfully it stopped again. I went to the pool on Saturday and it was lovely, nice and quiet and I had a WHOLE lane to myself. Heaven! I was going to go again on Sunday but I got quiet ill on Saturday night and was up most of v. early Sunday being sick. I finally got a little sleep, but not nearly as much as I needed, and I was wiped out. Thought I would crash hard on Sunday night but no such luck, just tossed and turned and couldn't sleep for the life of me. And so the viscous cycle of no sleep = pain = no sleep, etc, etc, etc... begins.
Yesterday I thought I would go to the pool but between the exhaustion and back spasms I passed. I did take a long hot bath to help with the back. I also had a little wine and a clonazapam which usually does the trick, but I still didn't sleep all that well, back and forth from one side to the other. It's all v. frustrating. I am praying I can get a good nights rest tonight so I won't be a total wreck for the long weekend. I have a lot of things I am hoping to do.
In the interim of waiting for my appointment at the end of December, I have been reading a bunch of new articles on treatments for FMS and CMP, not sure what I think I'll find, but perhaps I will be lucky and find some sort of magic solution for me. Ok, I know, but a girls got to dream.
I am on the phone waiting to see if I could get in sooner to see him, but no luck. :-(
Happy turkey day!

PS - reading anything and everything may pay off - I found a website for the Tri-State College of Acupuncture (never knew it existed) and from there found what I believe is the same thing as dry needling - APM - Acupuncture Physical Medicine. From that I did a search in NYC and have come across some people who might be doing exactly what I want, or so it sounds from their websites. You have to love the web, well, they probably won't since I've bombarded them all with emails. We shall see if I reap any rewards with this. Fingers crossed!!!

coincidence?

I was going through some old medical files that I had accumulated from when I was trying to figure out what was wrong with my hip. It was a very interesting list - I wrote down some things that might fit:

?Myofascial pain syndrome (neuromuscular disease; affects fascia; trigger points)
treated with PT, massage therapy, trigger point injection
?RA (inflammation of joint and tissue around joints; auto immune disease
?polyenthosopathy
-pinched nerve in cervical spine? feels like pinching/pressure in neck and shoots down right side of body
-Ehlers Danlos Syndrome -unstable joints; dislocating shoulder

What I find most interesting about this list is that I a)had this pain in my neck and arm longer than I can remember, it just wasn't as constant, and b) I think I am more qualified than most doctors. No doctor had mentioned anything about Myofascial pain until quite recently, and that was only because it was a physio in Holland. I knew I didn't have RA as I've never tested positive for it, but I guess I wanted to cover all bases. I was diagnosed w/ EDS after this, by a genetic doctor. And now I have been diagnosed with herniated, bulging discs and stenosis. I really should be a doctor.

Yes, I'm going to rant. And then rant some more. My major problem with the medical system in this country, well, one of them, is that all doctors are trained in parts. There is no doctor that I have found - if you know of one please tell me - that treats a body as a WHOLE. You have to go to a million different types of doctors that specialise in very specific things, and whilst that is good on one level, it is bad when they forget that that part of the body they focus on is actually CONNECTED to the rest of your body!

Where is this all going you ask? Well I had my appointment on Monday with the neurologist, Dr. Fatimi. Please don't go to her, she is dafter than a plank of wood. Perhaps she is just too young and clueless but she really doesn't have any idea what she's doing. My mother came with me to this appointment as I was to have the EMG test. Once we finally got into her office, she said - I thought you were going to have the EMG already? I couldn't believe it. I explained to her how I had had a whole long conversation with her assistants and we rescheduled the visit and the test to that day, from the 3rd. She said yes, I saw you were scheduled and you didn't come. I had to explain that I received a call from her office whilst I was away, and as I didn't return until midnight on the 2nd, I could not ring her office until the morning of the 3rd, and then tell the office that the appointment had been cancelled and rescheduled, which they said oh yeah, we have you for the 17th, for some reason it was still on the 3rd as well. This has to be one of the most disorganised offices ever. It drives me barmy. She didn't apologise or anything. Finally she arranged for the test to be done then, after she kept us waiting in the test room for ever. She didn't really explain what was going to happen, thankfully I had done my research, and did the electrode part first. They write on you for the measurements and then stick electrodes on you and zap you with electricity. This is not fun. I was trying to stay calm. It was extremely painful. Then it got worse, she did the needles. It was like medieval torture but with electricity. At one point she stuck a needle in my hand, in a v. sensitive post-surgery area of my hand that is extremely sensitive, and I lost it. She didn't warn me when she was going to do it or where, and just randomly kept stabbing and zapping. I hope whomever is reading this never has to have this test, but I won't lie. It was horrific.
After she was done, she said - wow you're so sensitive. Gee, a normal person would be in pain, but factor in the fact that I have fibromyalgia and my brain processes pain differently, then of course I was sensitive! That's what I mean about her - completely daft.
We then reviewed my MRI where she didn't even mention half of what the report said, until I brought it up. She then said she thought PT would work and gave me a prescription for that. I had brought along copies of some articles I had read about myofascial pain and dry needling, and gave them to her and explained that I believe (as my chiro does) that I have myofascial trigger points and that they need to be worked out before any PT can be done, because you can't strengthen a muscle that has a trigger point in it. I swear this went in one ear and out the other, then she seemed bothered that I was talking, wrote down the name a physiatrist, and said that I would need to talk to that person about treatment as she doesn't know anything else. What kind of doctor is that? Definitely not the kind that is concerned about a patient. I understand that with the way insurance is set up it is not to benefit the dr or the patient and they all have their numbers to do so they can make money, but if you don't want to treat patients then you shouldn't be a doctor. Period, case closed, regardless of the money. I have been to too many doctors to put up with this kind of crap. I am so fortunate that my primary, Dr. Rosen, takes the time out to talk to me, answer my calls, look into things when I need her to if it's something I can't do myself. And yes, I'm spoiled, but that is what a doctor should be like.
Ok, well, enough about that, sorry, I am just so frustrated.
After the lovely EMG I was in a lot of pain, stabbing, stinging pain. We had some wine and I thought I would be fine by the morning. But I was wrong. I woke up and could barely move my hand and everything was hyper-reactive in my body. The test inflamed everything and set me off down another spiral of bad pain all over my right side. I couldn't even go to work. Yesterday I was still pretty bad, and then I went to the chiro at lunch. He couldn't believe how tight my neck/shoulder area was and said there was a lot of Myofascial stuff going on. So I'm going to see him again tomorrow.
I did make an appointment with a physiatrist, Andre Panagos, at NY Pres who does dry needling, but it's not until the 29th. I heard back from Norman Marcus' office and will see about possibly going there. He doesn't take insurance and the first visit is $465, which I guess is better than $1200. I still can't get over that one!
So, onwards and upwards. My head is spinning from all of this and throbbing as well.

Calling for help

I've been busy researching dry needling in NYC and writing letters to any organisation that might have a clue as to what direction to point me, since none of my doctors are familiar with it. I just sent this email to the International Myopain Society:

"Hi. I was recently in Holland visiting a friend and she took me to her physio as I was in a lot of pain. Recently I had an MRI that showed disc bulging, herniated discs and stenosis in my cervical spine. I was sent to a neurologist who sent me for the MRI because I had constant pins and needles shooting down my right arm.
I also have EDS - hypermobility, fibromyalgia, TMJ, mild scoliosis and more things I probably can't remember at this moment. I have also had 4 reconstructive hand surgeries, and hip surgery to deal with a torn labrum, psoas release and FAI.
Anyway, I went to see this brilliant physio, Remco, in Den Haag and he did some traction on my neck, adjusted C2 for the TMJ and also adjusted my lower back and did dry needling in my trapezius muscle. It was the first time since the constant pins and needles started that I had relief. I didn't have them for 4 days, and it is still much less than it was.
The thing is, I really need to find someone who can work on me here. I have a chiro, but he's not allowed to do much else other than electric stim and massage and stretching. That helps, but only mildly. I was hoping that you would be able to recommend someone in Manhattan that works with my kind of mess of a body and does dry needling.
If you would I'd so appreciate it.
Thank you very much for your time."

Yes I am desperate! I am hoping someone will respond from one of my cries for help and tell me they know someone in the area. I did find this Dutch-trained physio who would be perfect, but of course he A) is in Bethesda, MD and B) doesn't take insurance. Part of me wants to go down to see him anyway, and he lives close to my aunt and uncle, so...I may just have to. I think I will send him an email as well. His name is Jan Dommerholt and he sounds brilliant.

I go for the EMG test on Monday, my mother is coming with me. Yes, I'm a baby, but I don't fancy someone sticking needles into me and then electrocuting me. We shall see what the darling neurologist has to say about my reports then as well. I have no faith in her at this point, but will bring my research and show her, after she says her opinion.

At present, the neck and back hurt, plus the usual "it's high humidity and low pressure" fibro crap, so going to go to the PT pool after work and hopefully it will be quiet and empty and I can just relax in there for a while.

post Holland

The flight to Holland was pretty uncomfortable. I used my neck pillow to keep my head up so I wouldn't lean it in any funky position if I fell asleep. It was quite a bumpy flight over there as well. Thank goodness I had the wheelchair pick me up when we landed. There was no way after that long flight I would have been able to walk to miles to the bus transfer for the other terminal. I'm not exaggerating, if you've never been to Heathrow - it is HUGE and it can take you ages to get from one part to another, and that's just in one terminal. They have 5 now, so there's a whole system of transferring and buses and walking down endless corridors.
Terminal 5 is the newest though and quite nice actually.

When I arrived at AMS thankfully my friend picked me up - saved me a lot of pain. The next few days I was a bit of a pretzel and T suggested I see her physio. Thankfully he was able to squeeze me in, and I went on Tuesday afternoon. His name is Remco and I am madly in love with him. He made me feel better than any other person has since I can remember. No miraculous healing or cure, but after what he did, I didn't have pins and needles down my arm for 4 days, and now it's only just starting to get constant again. After having a lengthy discussion with me about my various bodily messes and asking me lots of v. good questions, he examined me. He made some v. interesting insights, like EDS and the neck disc issues are closely related, my C2 is super tight because it's over-compensating for my TMJ on my right side (said that looseness in tmj on right side affects tightness around c2/c3), which is beyond loose and constantly clicky. He asked if my neck cracks when I wake up in the morning, which was funny because it's usually the first thing I have to do before I can get moving. He also said to stay away from surgery and do pt/chiro and keep swimming.

This is what he did:
*adjusted c2/c3
*used manual traction on neck
*adjusted middle back
*three dry acupuncture treatments in right shoulder muscle -said needles would take 2-3 days to really have an affect

He didn't want to do too much work as everything was so irritated already. He also said he wished I lived over there - and I said of course, you want me for your guinea pig - to which he laughed and admitted it. He said that my case was so interesting and I wish the doctors over here looked at it like that. He seemed to really want to help, not fob me off on someone else, which seems mostly the case over here, with a few exceptions.

Since I've been back I spoke to Dr. Rosen and she thinks I should look into the dry needling, although she cautioned nothing is a cure-all, which I know, but heck - I'll take any relief I can get, especially if it's not drug related. I also spoke to my rheumatologist, Dr. Meng and whilst she does basic acupuncture, she's not familiar with dry needling, but also agreed that it was something interesting to look into.

I am going to my chiro shortly and will tell him what the physio said and see what he thinks as well. I did come across a name of a doctor at NY Presbyterian that does dry needling in one of the articles I printed out, so may ring him later and see what his office says.

I definitely am back to bad pain in my neck now and the pins and needles are not 24/7 yet but they are getting back to that level. My TMJ is a mess, and I get my night guard next weekend. I really hope that helps.