mkoven

I think no. It's a problem with the genes that produce collagen, and there isn't yet a way to make your body produce healthy collagen. I think the current wisdom is to try to strengthen muscles to support weak joints and use proper body mechanics. I think doing enough exercise to challenge the tissues without so much that causes them to fail applies to us as to healthy people too. People with normal collagen also need enough regular input to keep bones, ligaments, and cartilage healthy-- so do we. It's just that our threshold of enough but not too much can be pretty low. So easy does it on increases in activity. Whenever I have a new pain that feels wrong, I back off till it settles down and I can figure out what's going on. I've personally found I can be a lot more active if I wear orthopedic braces. Myofascial release also helps muscle pain and joint problems-- since stretching on us can do more damage than good. But we still need to work out the kinks in our muscles-- just without overextending our joints. Having overly knotted up muscles can make it hard for muscles to fire normally. But that's just the musculoskeletal end. As the others have said, collagen is everywhere in the body.

I'm not the type to get on an informercial soapbox, but I could write an "ode to the my hipflexors"! They are major culprits in my chronic hip, pelvic, back pain. I roll them over a a styrofoam roller once a day, and do some very gentle stretching. I also use a theracane to get at some tough spots. My pt also works on them. It's no fun, but HUGE improvement in pain. I could go on. they don't get a lot of press, but they should!!!

Hi Nina, Sorry to hear about your back and reaction to meds. Any idea what you may have done to your back? I have different strategies, depending on what structure I think it's coming from. I can feel when it's my cranky discs, as it goes into my legs and feet, vs my sacroiliac joints (dimples in lower back). When my si joints are out, I"ve learned to put them back in, and I usually get instant relief-- till they slide out again! But as we've discussed, I"m also a member of the loosey-goosey spine club- complete with clicks, clunks, pokes, and stabs. In all instances what's helped my back immeasuarably is figuring out how to release my hip flexors-- the muscles that cross the front of your thigh, your abdomen, and then hook onto your lumbar spine. http://images.google.com/imgres?imgurl=htt...al%26sa%3DNWhen they are tight, my lower back feels really squished. When they're released, I feel three inches taller. It may not be something you'd want to address right in the middle of a flare, but it's one of my new discoveries. Hope your back settles down and you can get some rest. Michele

Given the cost of the chair, I'd probably make any trip under four hours! Our closes "relax-the-back" store in Chicago, 3 hours away. When I was up there to see doctors, we stopped there and I tried a bunch of zero-gravity chairs out. I'm on the short side, and wanted to make sure that the proportions fit me. and my back and neck are very sensitive. I"m like the princess and the pea. The one thing that was really challenging was finding one where the neck support wasn't excessive, forcing my neck into too much flexion-- which causes pain pretty fast. What I do on the perfect chair is take the top part that is the head/neck support and put it on backwards (!!!) to get the amount of support I need. It looks a little funny that way, but feels better. (I've always hated that airplane seats push your head forward-- same strange concept. Maybe that's comfortable for some???)

I was thinking migraines too. For the dizziness (spinning sensation), I take a tiny dose of klonopin. It apparently calms down the vestibular system. I only need .125. Meclizine completely knocks me out. My migraine doctor thinks that dysautonomia and migraines are definitely connected. And neck pain can also be a migraine. for me it feels like I have some stiffness in my neck muscles, but when it becomes a migraine, it's as if the migraine is using the neck muscles and then ramping the pain up to a whole other level. I can now tell when it's just my cranky neck and when it's a migraine--they feed off each other though. (A stiff neck that's purely musculoskeletal doesn't make me want to throw up, turn off the lights, and stop all noise.)

Yikes! I've also been told it's better to take the brandname version, proamatine. It's more expensive, but makes me less jittery.

My guess is you would barely notice 1.25. When I increase, it's by 1.25 mg increments. But sure, give it a try. You could even do.625, if you have a pill splitter. For me that's a quarter of a pill.

I'm very sensitive to meds, and I tolerate midodrine. I started at 2.5, and now take 5. I have to go up slowly. At first, the higher dose makes me feel jumpy. But now 5mgs helps. Only side effect is some tingling. but it doesn't eliminate my symptoms-- just improves them. I like that it's not a commitment. But it's short duration is also a drawback.

I'm really sorry to hear about the unfair treatment you've been given. Quick suggestion. If these are student loans, there is often some leeway, more so than regular loans. Can you call someone at the lender's and explain the situation? My sense is that student loan places are often more forgiving of extenuating circumstances. They know people will be more flush eventually when they finish their studies.

Thanks, you guys for your support and vicarious annoyance! It seems really hard to get doctors to talk to each other. In the US, we now have these patient privacy laws, hippa, which makes it REALLY hard to get doctors from different hospitals to talk--rather than actually protecting anything. I believe I've signed the proper releases, but my pcp's nurse said he didn't have the authorization to talk to the ans doc. so I have to call around to get the right forms signed to let them talk-- which I think they'd prefer not to do. I may still see this ans doc, given her expertise, but will have to come up with a polite way to tell her that I'm concerned about not being able to contact her in an acute situation. I'd rather not add on new docs, but I may go see this ep guy in Indiana, since he does do email, and comes recommended.

Hi everyone, As I posted last week, I ended up in the hospital last Friday-Saturday with exertion-related chest pain. They were able to rule out heart attack, but no one knows what to do with me locally. ANS stuff not in their repertoire. I continue to have chest pain whenever I'm up, worse when I walk, worst when I walk up any sort of incline. I've left THREE messages with my ans doc (who is in Chicago) asking for advice about what to do or how to advise my local doctors. No reply. Her secretary says she's relayed all the messages. I imagine the doctor is just very busy, but I really need to hear from her. Being busy doesn't strike me as a good excuse. The ten minutes is would take for her to speak to me could have saved me a two-days hospital stay and all accompanying financial, energy, and mental costs. I don't think it's too much to ask. She is definitely understaffed, but come on. The burden on her has got to be much smaller here than the toll on me. I really like her face-to-face, but it seems she is not someone I can ever communicate with outside of an office visit. (this is not the first time I tried to communicate with her outside of face-to face). And as she's three hours away, and booked weeks in advance, that means she's just not helpful in any sort of acute problem. What is reasonable for me to expect? I don't really want to fire her, but am really disappointed that she doesn't respond, for whatever reason, and my local doctors and I are left hanging without a plan, while I continue to have exertion-related chest pain. I need her to respond. My pcp is coming up with some strange treatment ideas, in the absence of any expert input. His office has said though that they will defer to her--IF SHE"D RESPOND! And I'm cautious enough to want to hold off on those odd suggestions, till I hear from her. If any of you have any "from the doctor's point of view" suggestions...I would really appreciate it. There was an ep cardiologist recommended to me 4 hours away who treats ncs in ehlers-danlos patients. I've had email exchanges with him, and he, sight unseen, answered them promptly. So he has the merit of being responsive, though he might be otherwise less of an ans specialist. I don't want to doctor-hop, and I like her personally, and respect her expertise, but accessibility matters to me. And it just ain't there. What would you guys do? Michele

I love my chair. Best money I've spent. I have my own office where I can close the door. It's cramped, but doable, and I'm the only one who the crampedness imposes on. I couldn't survive without the chance to lie down. My body quits on me harder and faster than my colleagues, but I still manage to work full-time. I searched on the net for the best price. I need an electric one, as the manual ones were impossible to get out of. (I sat in one at a relax-the back store.) I'd see if you can try the recliner out before you buy. Maybe find a store with several models and go hang out in several models for at least fifteen minutes. In the end I paid 1500 (ouch, I know), but that's better than the 2300 that Relax-the-back wanted to charge. Hope you can find a solution that helps! Michele

I have eds and didn't really consider myself flexible. The question is whether you feel stiff-- which is different froma ctually being stiff. I avoid using my full range of motion because it hurts-- but at the end ranges, my joints slip. and muscles spasm because they are working overtime to keep joints in place. It took me a long time to get a diagnosis. You should see someone familiar with eds, as it can be subtle unless someone has seen a range of cases. not all my joints are pretzel-like, but some are. And my skin is on the stretchy side, but not extremely so. Right now, my ans doc thinks eds is the reason for my autonomic symptoms. www.ednf.org is a great resource.

That looks like a pretty cool chair! My guess is that you wouldn't like my chair-- it's a zero gravity recliner --a "perfect chair" made by integrative health. I also have a desk chair. My point though is not to convince you that you'd like the same chair as me! But, I find having a recliner at work really helps me to last. I use it for lightheadedness and my bad back. There are many work-related tasks I can perform from this position. It was expensive, and I paid for it myself (probably could have gotten work to pay if I'd been willing to wait to jump through bureaucratic hoops), but I figured that anything that lets me keep my job will pay for itself in the long run. The only thing I don't do is work on the computer from it. I could use a laptop, but they strain my neck.

BTW, I've seen that marfan's and stickler syndrome can predispose one to apnea-- so eds is similar???? And I know a lot of folks here have some form of hypermobility. I think Francomano, an eds specialist, has written that she sees osa in ehlers-danlos patients, without other typical causes.

They let me continue my meds, I guess because those are the real conditions under which I sleep. I gotta say, as much as I dislike the mask, my headaches, muscle pain, and general mood are still improved. Wish this had been considered long ago. Still only ten days in, so fingers crossed!

I've posted this info elsewhere, but thought I'd leave a more general message here. I know a lot of folks here get migraines, and I've certainly posted a lot about my frustration treating and preventing mine. It may be premature to declare victory, but I'm FINALLY getting some relief. I was diagnosed with sleep apnea, and started cpap treatment a week ago. After two nights, Iw as able to tolerate the mask for most of the night. Since doing this, my late night/morning headaches (many of which are migraines or morph into migraines) are virtually GONE. I'm about to get my period, which will be the real challenge. But before, i had some type of headache on 90% of days. I haven't had one in almost a week, (except for the night I was in the hospital and got no sleep). And my apnea is considered mild. during my sleep study I range between 88 and 94% oxygen. With cpap, I stay in the upper 90s. I can't tell you how excited I am. I'm also a little less cranky in general. Getting air is a good thing! I didn't think I had apnea, and was surprised by the diagnosis. Most people have no memory of it. My other autonomic symptoms are horrendous now, so I don't know if it will help all of then, but to be headache free right now now is a blessing. My muscles are also generally less achey. (I would probably qualify for a fibromyalgia diagnosis, secondary to ehlers-danlos, but have not sought one out, as I think my muscle pain is an effect of other stuff.) I have no idea if this news would be useful for anyone else here. I don't really look like an apnea sufferer. I'm chunky, but not obese, but have a normal sized neck. And I'm a premenopausal woman. My migraine doc and pcp were surptised to hear that I have apnea, as they wouldn't have guessed it. It may be because my eds makes my throat tissues floppier. Just saying that this maybe something to look into for the headachey people here. Will keep you posted. and I hope this isn't premature! Michele

I still have chest pain and shortness of breath whenever I get up and try to do anything. Same symptoms that had me go to hospital. Definitely far worse than my baseline. I've called my ans doc and pcp. Not sure what to do.

thanks, you guys! It would be great if I could page my ans doc, but she's very hard to contact outside of an office visit. It would save me time, anguish and money! Most other docs, though, on hearing the symptoms, want me to go to the er. Not enough people know about ans problems. Just as an aside, they had me on a cardiac unit. When I ordered food, they wouldn't let me have any salt!!! I tried to explain that I need EXTRA salt not no salt, to no avail. Chest pain=avoid salt. Oy. I guess this makes as much sense to them as someone saying it's medically necessary for them to have extra bacon or ice cream.

I didn't black out, but my official diagnosis is ncs. that was the diagnosis I guess, because I get bp drops, not tachycardia when I stand. and I feel unwell--anything from chest pain, shortness of breath, head throbbing, to lightheaded/presyncopal. My ans doc prefers to just call it autonomic dysfunction, to cover the variety of ways things are malfunctioning. but other docs seem to recognize ncs as an entity better than dyautonomia/ autonomic dysfunction. I don't have a diagnosis of pots, because my hr doesn't go up much. Although it has on occasion. It feels like my body doesn't know how to adapt to the demand for more bp/hr. So actually, my hr didn't increase enough, nor does my bp. It improves some when I recline, but not doesn't completely resolve. So not sure I understand what the mechanism of the chest pain/pressure and breathing difficulty is in my case, as the hr stays pretty unremarkable-- so not too fast, as you describe. EKG was normal. Enzymes were normal. Only testing abnormality is swinging bp and decreased rate to rate variability (sp??)

Okay, I'm still getting used to the cpap, but let me say that the 3 nights that I've made it most of the way through with it on, I've woken up WITH NO TRACE OF A HEADACHE!!! This is huge for me, as I usually wake up with anything from a mild headache to a killer migraine. I guess I'm finally getting enough oxygen!!!

As a followup to my previous post, the doc at the hospital wanted me to have a 24hr ambulatory bp monitor, that measures bp throughout the day. I'd never heard of this and figured if it existed I would have read about it on dinet, or another doc would have suggested it. HAs anyone done this? It's hard to imagine how it would work, since most bp monitors require you to be still, or you get a misread. also, what happens if you are getting measured, and your arm is too low, i.e. not at heart level. and if it's squeezing your arm throughout the night, wouldn't that keep you from sleeping? Just seems like this would be a common test for people like us, but I'd never heard of it, so underused? ineffective? non-existent?

So I'm sad to stay I went to the ER Friday night, and they ended up admitting me. I usually feel bettter when I walk around, but Friday night after dinner, we went for a short walk, and chest pain/shortness of breath were definitely worsened by exertion. And it didn't go away that much while lying down. since this is relatively new for me, I thought it should be checked out. Of course, as soon as you say exertion-related chest pain, they admit you. and no one at the local hospital is that familiar with autonomic problems. So they had to check three sets of cardiac enzymes, telemetry, ekgs, chest xray-- all normal. so i was discharged. So here's what I'm thinking... if you're autonomically out of whack, could it be that my bp and hr weren't properly adjusting to exercise, and that's why I felt bad? if your're bp and hr don't increase as they should, can that be an ans problem-- like ncs???? I did try bp in the hospital (my suggestion-- no one else seems to get it or even the importance of measuring bp in more than one position!) before a brisk walk and right after a brisk walk down the halls. Indeed the first time we tried, I had NO increase in bp or hr. Before exercise-- 110/60 hr 71, after exercise, 110/59, hr 70. Could that explain my symptoms-- if my bp and hr can't increase appropriately, so I get sob, chest pain? Nurse didn't really know, except to say that bp and hr should go up some. We tried a second time, and I did get them to increase some (135/59, hr 90), but given that I was walking as fast as I can, the numbers, esp diastolic and hr seem kinda low. So it's inconsistent... and as soon as I sat down, like within seconds, it dropped to 94/43.

This is really interesting. I think I must have some form of this-- and always have. I'd never linked it to the ans.

Thanks again, you guys for all your support. I pretty much kept it on all last night, but really not great sleep. I went to bed around 930, and then was up roughly every 90 minutes after midnight. Who knows why. I do have to say, though, that the past two days, after nearly full nights with the cpap, I HAVE NOT WOKEN UP WITH A HEADACHE!!!! I usually have something between a mild,annoying headache to a migraine in the early morning. Too early to be sure, but this would make all the annoyance of the cpap worthwhile!!! And my migraine doc really thinks that I'll eliminate a lot of my "background headaches" with cpap-- since low oxygen is a big headache trigger for most people. So maybe some of my surge in headaches the past couple years is apnea-related??? The bridge of my nose is red and sore, so still some tinkering with the darn mask is in order.