No one likes to be pinched!

I saw the chiro on Wednesday at lunch. The massage and stretching I went through was v. painful, they were trying to loosen up the muscles in the trapezius and neck. Next day still in as much pain though. Went again yesterday at lunch. Went through the same beating up - it was like being on the rack. Still in agony. Icing every hour or more per chiro. Last night went to acupuncturist. He definitely thinks it's the muscles putting pressure on the nerves and my stenosis. He did a lot of needling and hit some majorly tender trigger points and released them. He said not to ice last night but can today. Also suggested Naproxen and as I magically had some lying around I took one last night and another this am. I am feeling very mildly better today but it still hurts a lot and walking is still one of the most unpleasant things I can think of at the moment. I am going back to the chiro in about an hour. The acupuncturist said it would be a good idea as he is hoping after loosening up the muscles last night, the chiro will be able to realign my spine and get the pressure off the nerves. Here's praying it works as it's Friday and I will be s.o.l. until Monday. Also on Monday a friend will be in town for her first visit here and I really don't want to be a misery when she's over. Fingers crossed I am greatly improved in the next few hours!

Continuing on that "never a dull moment" theme

(The return of the pinched nerve and cervical stenosis)

Last week my neck was starting to bother me again. Mildly, nothing major. I went to the acupuncturist on Thursday night and mentioned it, along w/ catching him up on all the other fun I've had. We were going to do the neck but the jaw and tmj and intestines and the fact that my circulation was off and I was grayish, distracted both of us and we forgot the neck thing. Friday my neck was less happy. By Saturday morning I could barely move my neck. The pain was horrible, stabbing sharp pain in my neck and right shoulder that travels down my arm and lower back. I tried stretching it to no avail. Then I tried the pool, just floating w/ a floatation belt to try to loosen up my spine. It was nice when I was in the water but unfortunately couldn't stay there all day. Then I even tried the sauna (I hate the sauna) to get some heat into the muscles to loosen them up. I was great until I started walking home again. Just my feet hitting the pavement sent stabbing pains throughout my body with my neck as the epicenter.

I spent all Sunday on the bed or the couch, resting my head and neck. I tried heat. That didn't work. I tried ice. No results there either. I tried more stretching. By Sunday at least I was able to move my neck down to the side. Pain definitely not gone though. In fact the pain is just as bad. I've been popping NSAIDS like they're candy - again no help. Never fails for a long weekend to be the time my body wants attention. It is quite spoiled and likes to throw tempertantrums at the worst times possible.

Yesterday I had to get out of the house for want of not going stir crazy. My parents came in and we went out for a bit. I was ok for part of it, but then too much walking and I was shot again. Rested and then went to dinner, where I barely made it sitting upright.

I tried to reach the acupuncturist today, hoping somehow he could see me, but when I did hear from him no appointments until Thursday night. I don't know if I'll make it till then. I caved and rang my chiropractor, whom I've not seen since November or December. Thankfully they were able to get me in tomorrow at noon. So now have to get through the next 19 hours. Wish me luck. I sure as hell am going to need it!

I've been avoiding writing

because I didn't want to just go on a whinge rampage. For the last two months my bottom right jaw has been killing me - aching, throbbing pain that gets so bad it keeps me up some nights.
I went to see my dentist and he took an x-ray but couldn't find anything. Surprise surprise. We tried a week of antibiotics to make sure it wasn't an infection, but no result there. It's amazing how you can WANT something specific to be wrong just so there is a way to fix it (well, hopefully). But when the pain can't be located, as such, it's like looking for a needle in an hay stack!

Next stop was to see the endodontist. I was referred by my parents neighbour - they had gone to dental school together. I find it helps to have some sort of background or introduction to new doctors so they don't look at your chart and listen to you and think you're just an hypochondriac. You'd be surprised how many daft doctors there are out there. Or perhaps you wouldn't be...

I went to the endodontist on Tuesday morning. He looked, banging, made me bite hard things, blew cold air, etc. And again, he couldn't figure it out. It wasn't a failed root canal, it wasn't another tooth needing a root canal. He thinks it's nerve-related, but not "that" nerve type of thing where he would know what to do to fix "that" nerve. He was very nice and not too patronising. He said he would talk to some colleagues to see if they came up with anything. It's Friday and I've still not heard from him, so I'm guessing no one was able to come up with an idea.

Yesterday I went for acupuncture though. I told my doctor what was going on with my jaw, as well as with my hip (it's been wonky and limpish for the last couple of weeks) and knees (they're swollen and not happy). I filled him in on the PT I had been doing and told him I thought my hips were unhappy b/c of the core exercises. He agreed that could be it, even though the PT lady (who was v. nice and good) didn't think it should be a result of that. But he's had two hip replacements and does all sorts of keep-fit things, and he said ever since his hip replacements he's not been able to do core work either as it irritates it. So, yes an answer, but still a new catch - 22 b/c how am I meant to strengthen my core if I can't do the exercises?

Regarding my jaw, he felt it and said - "it could be the muscle there". There's a muscle there, under my tongue, and no one else thought to mention that? This is why it's good to have all different types of people around you - everyone thinks differently. So he shows me his Trigger Point poster - I love this thing because it's like someone who didn't know me drew it and put big X's on all of the parts that hurt me, what a coincidence! :-) And sure enough, on the green part that is the disxxxxx whatever name I can't say muscle, there is a big X EXACTLY WHERE IT HURTS!!! Now mind, is this 100% the problem? Who knows. But at least it's some sort of start and we can try to fix it and see what happens. This time we did more needling on my legs and hips than my neck, but a little on my shoulder and in my tmj. He needled me under my jaw into that muscle and sure enough, there was a trigger point - and a slippery one at that, took a bit to get the needle in (not pleasant) but (touch wood) afterwards I did feel a bit better. He things the trigger point is from clenching my jaw, related to my tmj, which is related to stress, which I've been under because of the world and the pain I've been and not being able to sleep and there goes the never ending cycle. So, as with all acupuncture/dry needling, we will wait a bit and see what happens. I am trying to be hopeful but not overly so because, well, I know my body.
I did feel all over a lot better when I left his office last night though. A combination between him and the treatment me thinks!
So next appointment is 30 April, the day before I leave for England. Fingers crossed!!!

the last couple of weeks

I've been going to PT every Monday and Wednesday, swimming in between, and last night I had another acupuncture session.

PT is going slowly, but I believe forward. I've been working on strengthening my core, and doing a couple of stretches, but not too many. Originally the PT was icing my neck after but that seemed to make my muscles spasm a lot. We tried heat a couple of visits ago and that seemed to not irritate the muscles nearly as much.

The acupuncture hurt more than usual last night, not sure why. I am sore and a bit stiff today but not too bad. I am planning on going swimming after work, that usually helps a bit.

A couple of Saturdays ago I went out dancing. I know, I'm totally not supposed to do that. I was feeling pretty good, and we went to a place that was having an 80's dance night. That's my favourite kind of music, especially when they started playing all of the Brit 80's. I went a bit wild for about an hour or so and just let loose. It was a great feeling, though at a certain point my body told me that it was time to go home. I did pay for it pretty bad the next few days, and I know the long term effects are bad, but it was worth it. I can't see myself doing that on a frequent basis, but it was definitely good for the psyche!

PT starts

Tonight that is. We shall see, it's a new place and I don't know anything about them. A bit nervous as I get so many mixed reactions when I try to explain what is going on with my body. Thankfully the prescription Dr. Panagos wrote is very specific, so that should help, I think?!?

My neck is still doing this weird spraining thing when I turn it. Not 100% of the time but enough to drive me nuts. The trigger points do seem to feel a bit better though, so (touch wood) that lasts. I can't tell if my right hand is better from the acupuncture last week as this weekend I was playing with my nephew and whacked my right hand into a huge picture frame so now it's a funny yellow colour and very sore. Never a dull moment.

I've had a very stressful last two weekends and since this past Saturday a massive headache. I can't tell if it's tension, the return of a head cold or some combination. I just wish it would go away! And I wish it would get warmer, the ice is so scary. But at least we have a president with an high IQ and he's ready to get to work! So that makes it almost completely better!

I will let you know how the PT goes.

Acupuncture update

Last Thursday, the 8th, was my third appointment with Mark Seem. He said after the third to take a month off and see how I am doing. He does this with all patients but especially with those that have my issues, as your body needs to recover from the trauma of the needles.
The session was pretty intense, he did two smaller needles in my jaw on both sides, and the dry needles he did in my back and shoulder and neck hit the spot. I won't say it was very painful, but I won't say you didn't notice it straight away. It's a strange feeling when the needle hits exactly the trigger point, and your muscle starts spasming. After the treatment I felt sore immediately. He said to go home and use heat, so I did, which definitely helped a bit. I was still pretty sore the next day. He also did another needle in my right index finger which unfortunately seemed to undo the numbing affect from the previous week. Right now it's sort of numb and sort of not, it keeps flip flopping.
As for my neck it is feeling a bit better but when I just turn it sometimes it feels as if it's being sprained and is painful. Other times it is fine.
Since our benefits at work have changed and they finally (almost) sorted the new insurance completely, I was able to locate a PT facility on Dr. Panagos' list that is on the new insurance and make an appointment for next week. I know that will not fix the stenosis but it should help strengthen my neck and I am hoping it won't hurt when I turn it anymore. Trying to be optimistic here!
On the exercise front, I'm still trying to go swimming three times a week but my right knee is not enjoying it at all. It has been killing me after I do some laps and then when I walk home it feels all loose and wonky. I am going to see if there is anything I can do that will not hurt me but will strengthen my quads. Should be quite a challenge. I am also wondering if I could get some sort of knee brace to wear in the water? Don't know if that exists but will check it out.
It's snowing so that always makes me nervous as it's quite slippery outside. I am missing the warm weather today!

Slightly overdue

but it's been a v. busy few weeks.

I left off on my way to see Mark Seem. He was v. nice and patient and took the time to get my history, as well as review all the reports I brought with me. He has a lot of insight into hypermobility and told me some very interesting things about it. One being that the Dutch have a v. high rate because there was a lot of relationships with the Asians when they were a "superpower", and whilst the Asians hypermobility does not affect them in a negative way because they are shorter, when the genes were mixed with the taller Dutch, then it became a problem because size and proportions were all different. Perhaps I'm Dutch??? He also feels that my fibromyalgia is relatively mild and that the polyenthsopathy plays a much larger role. I was impressed he knew what enthosopathy was as most doctors ask me what it means. Poly=many and Enthesitis is an inflammation of the entheses, the location where a bone has an insertion to a tendon or a ligament. It is also called enthesopathy, or any pathologic condition involving the entheses. The entheses are any point of attachment of skeletal muscles to bone, where recurring stress or inflammatory autoimmune disease can cause inflammation or occasionally fibrosis and calcification. (Also see: http://medical-dictionary.thefreedictionary.com/enthesitis ) He suggested because of the hypermobility and fibromyalgia we would work relatively slowly and not leave the needles in for more that 10-15 minutes. The idea was to not trigger my fibro. He used a combination of TCM needles as well as slightly longer needles for the dry needling/trigger point release. Afterwards I was v. tired and thankfully just went home and to bed. I felt a bit worse the first few days but then the pain in the neck and shoulder/upper back area became more localized, which I was told was a good thing.

Unfortunately he had to cancel the next weeks appointment as he was ill, and then last week scheduling didn't work because it was a short week. I went this morning for my second appointment. This time I definitely felt more when the needles were going in. It's hard to describe, originally I wouldn't have used the word painful, more like pressure and a pulling on the muscle - you can kind of feel the muscle "grip" the needle. This time he really got into some trigger points directly which is good, but it definitely felt more intense. He also put some needles in my hand and one in my right index finger. I accidentally moved the finger and that woke me up! It was in a v. sensitive place and even hurt when he took it out. After we finished with my back, he released two trigger points in my TMJ as it's been killing me lately. It still feels like there is a needle in there about an hour later, though not as intense. I was told to not chew or talk a lot. If it brings relief it will be worth it.

Yesterday I went to see a physiatrist as I am meant to get PT to strengthen my neck, but didn't trust anything that daft neurologist said. I went to see Dr. Panagos as Weill/Cornell. He and his resident were very nice and knowledgeable about my various conditions. They told me a horror story about a woman with EDS that can barely function after giving birth, and suggested that I don't do that. Lovely. Although we knew that already, especially as EDS is a 50/50 chance for the kid. I would hate to give this crap to someone else. The doctor said he's sorry there isn't much he can do but the goal is to get me to learn how to help myself, so I don't have to constantly go to PT and such. He wrote out a very thorough and specific prescription for neck PT, saying that I need strengthening but no stretching. I have to say it's so nice to meet doctors that know what is going on, not daft ones like Fatimi who dismiss everything you say and think they know more, when, in reality, they do not have any experience whatsoever. Even Dr. Panagos' resident knew a lot, she said she was surprised I wasn't a doctor. I think I should be given an honorary doctor's degree after all I've been through! Unfortunately our insurance is changing in the New Year, so I will wait to start PT then, so it's less of a hassle.

I think that's about it for now. Happy New Years!

Acupuncture

I decided to try out Dr. Mark Seem, and my first appointment is tonight. I've put together some information about my medical past and I'm sure he'll think I'm a complete nutter with all of my issues, but what can you do? I think it's a good idea for the doctor to have a clue about this stuff, how else can he treat me? My appointment is at 18.30 and I wish it was sooner. My back is a bit better but my neck is still in a lot of pain, though the chiro did say I was much better than last week. I know I'm not supposed to put all my eggs in on basket but I am praying that this work will help, at least a bit. I am being optimistically cautious I guess. Other than that this weather bites. I so wish I was somewhere warm and dry.

Spaghetti joints

That's what I have. After I went to the chiro today, I was walking down the street to get lunch. As I took a step off the pavement into the street, my left ankle completely gave out, and the next thing I knew I was on my left knee facing the street. Thankfully no cars were coming, and a very nice woman gave me her hand to help me up. Roughed up my pants a bit a little knee damage, but more scared than anything. I was able to walk it off with my ankle. I have had weak ankles for as long as I can remember. Whenever I run my ankles give out and I go crashing to the floor. One time when I was about 15 I was running down the hallway at home and my ankle gave out, and my other leg was mid-air and since I couldn't put the other foot down, my foot crashed into the wall, hitting a beam of course, and smash went my little toe. I was on crutches for a few days. It's always fun being me! My ankle hasn't given out that blatantly in a while, so I was definitely caught off guard.

Other than that, my chiro/massage was nice, and I'm going back on Friday because my neck and back are still so tight. I heard back from Mark Seed ( http://www.tsca.edu/site/about/faculty/ ), the acupuncture college guy, and I have an appointment on Thursday, 11 December at 6.30pm. I didn't speak to him directly but he said on my VM that it is an hour for first visit, and $135. Subsequent appointments are $120. He is located on WEA and 79th Street so it should not be too difficult to get there unless traffic is v. bad, as there is a bus that goes along 57th Street.

I am still not sure which person to go to, him or the other lady I had spoken to yesterday. I think I will try him first and see how he is. He does sound like he knows what he's talking about since he runs an acupuncture college and has written text books and articles. I will keep you posted.

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.