mkoven

I don't like the tempurpedic. I have lumbar issues, and my lower back just sank in too much, waking me up with sciatica. I returned my tempurpedic and I sleep on a sealy inner spring-- it's "firm" with a topper so I don't get pressure points. This way my back is better supported. It's low-tech, but works for me. I sleep on my back with two pillows under my knees, and one under my feet. I have u-shaped neck pillow which supports my neck just so. just plain fiber-fill, but I took out some of the stuffing till it was the perfect height. I also sleep with a soft cervical collar, to stop my head from lolling to the side (it's really helped with neck and head pain.) Fortunately I barely move when I sleep, so I usually stay in this position. I sometimes have to move the pillows around a bit to support different parts of me. I also can't sleep on my side, without hips, shoulders, neck and back slipping.

I haven't taken cymbalta, but have heard that effexor works on a similar principle--on norepinephrine and seritonin. And I'm allergic to it. But maybe you could ask your doc about it? Michele

The theory is that it takes 4-6 weeks to see how much your tissue tightens up. Tyypically though, someone like me needs about ten rounds. Oy.But I"'ll tale any improvement I can get.

I did okay with the shots. After I took the pre-injection painkiller and ativan, I felt woozy, a little tachy (100 bpm sitting_, higher bp for me (135/90) and nautious, but it was manageable. I slept in the van on the way home. Today I'm just sore. But not so bad. He would have given me some more injections, but was concerned about lidocaine toxicity, and that that could worsen things. I go back in 5 weeks.

For me cracking usually goes along with my eds, loose joints. Normal people crack sometimes, and are usually told not to worry unless it's accompanied by pain. For me, I pay attention to increases in popping/cracking, as it usually means that joint is getting looser. I then need to rethink what I may be doing/have done to stress it out. For me, it can be very minor things. For example, after I injured my left ankle, the stress of limping made my rt ankle poppy. and because I didn't know better, it eventually gave out too. It then took 18 mons of bracing, rehab, and injections to restabilize. It doesn't give on me much anymore, but I managed to damage some of the cartialge from having it subluxate on me so often. Now I' m more proactive in protecting my joints, as I know they're all made of less than great collagen. I can't ask one to take up the slack for another without asking for trouble. However, if you don't have eds, and you've always popped painlessly, I wouldn't necessarily worry. I have a friend whose ankles crack a lot, left over from sprains many years ago. But she's stable. If you are concerned, you could get some physical therapy to stabilize them/ and/or a brace for when you're really active. At the very least, you could look at your footwear-- I need really good arch and metatarsal support. Some folks do well with orthotics. I wear birkenstocks and I love them. www.ednf.org has a lot of info on ankles on the message boards.

I'm about to hit the road for my injections. I'm pretty nervous. If I didn't feel my options were limited, I wouldn't do it. My left hip keeps popping out of place and it's very disconcerting. Don't know if this will help, but with eds, it's not like there's a good surgical fix, and I've done pt till I'm blue in the face. I'll bring my bp cuff with me and all allergy meds... not sure this doctor is used to people with my weird allergy/bp issues. I can't wait till it's over and all I have to report is some soreness.

I don't have experience with florinef, but got a yeast infection on prednisone...does florinef have any immune suppressing properties?

Because of my joints, I can't do a regular stress test. Instead, they do a chemically induced one--with dobutamine. It was strange, but I tolerated it okay. Would that work for you? Michele

The advice I've been given about how to talk to a doctor is to talk to them with the information they want-- your precise symptoms, what triggers them, what makes them better and worse. My electrophysiologist said ncs when I told him that I want to pass out - after standing -prolonged sitting -using the bathroom (vasovagal trigger) -premenstrually -after hard exercise -after quitting prednisone -when my allergies are bad -when I'm dehydrated I was very matter of fact and filtered out too much affect in the way I talked, to avoid the hysterical female diagnosis. The triggers were so consistent with ncs, he didn't even feel the need to order a ttt--which I can't do anyway because of joint pain. My event recorder showed many episodes of tachycardia, but all with a normal sinus rhythm.

So I've tried rubber gloves, bracing, and a stocking donner, and at this point, although each strategy on its own might help, my fingers just hurt and pop too much at this point. I'm afraid I'm going to have to put aside the stockings for a bit. I hope I can get my hands to settle down and go back tot he stockings in a little bit. My reasoning is that if I injure them any further, it won't be a choice. Sigh. I was hoping to avoid meds, but this might force the issue.

Hi, This Friday I'm having a procedure done that I haven't had done since becoming very symptomatic with ncs. I'm having prolotherapy to stimulate better healing of my ligaments in my pelvis. It involves numerous PAINFUL injections, lidocaine, and a combination of ativan and dilaudid before to make it tolerable. Before my ncs was bad, besides being painful, my only other problem with it was that the next day or two I would feel generally unwell--like I had the flu, but then I'd be okay again. Since the ncs reared its ugly head, I was wondering if there was anything in particular I should think about? My ncs is somewhat calmer than it's been, but still there. I've also scheduled the appointment so that it's after my period, so I'm not adding insult to injury... I guess the issue would be the drugs themselves (ativan does make me a little tachy), and the shock to my system. Of course the reason I'm doing this is that I'm at my wit's end with my unstable hips, pelvis, and lower back, and this beats surgery. (In the past it really helped my ankle and shoulders.)

My back is not good--no longer blameable on the surgery, though. My discs just continue to degenerate, bulge, leak, and press on nerves. I also have torn and stretched out ligaments in my pelvis and low back. I"m in pt again. I'm starting another round of prolotherapy on my pelvis next week. But it took me a good 18 mos to recover form the surgery. I have eds, but this was only diagnosed after all my other joints fell apart, probably from the deconditioning of back surgery recovery. My ncs really worsened this summer-- not sure why- stress, bad allergies...I was put on prednisone for the allergies, and the ncs got really bad as I tapered off. Things are more stable pots-wise, five months post-prednisone, but still not normal. So far, no ncs meds-- stockings, salt and fluids, position changes, and as much gentle exercise as I can handle

I've had lumbar surgery. Although the recovery was awful and worsened all my joint problems, I don't think it affected my autonomic symptoms. Although I had some minor presyncopal stuff before the spine surgery, it's really only this past spring (4yrs after surgery) that the ncs really hit me.

In another post , I talked about how I was training myself to stand for longer periods. I started out only able to stand 2-3 minutes before feeling sick, and in the end worked up to 15. It really helped to GRADUALLY increase the amount of time I was upright. Unfotunately, my hips can't take stationary standing without subluxating, so I had to stop. I can however walk for up to 15 minutes-- again right now the limiting factor appears to be my joints.

I think there is a lot that isn't understood about when hypermobility is a problem and when it isn't. As you say, there are some people out there who are hyperflexible who appear to be problem-free. I have two colleagues who are much more flexible than I am, but are marathon runner. My guess is that they would score relatively high on the Beighton scale--dut they don't dislocate and are pain-free in their mid to late 30s. It could also be that some people who are hyperflexible may run into problems down the road-whether it is called eds or not. Joint-wise, physical therapists know that loose joints are more injury-prone than tight joints. I never considered myself particularly flexible, though I guess I may be. I"m just very injury-prone and unstable. Constant subluxing. On the Beighton scale, depending who is looking, my elbows hyperextend. Some think my knees do, some don't--but they pop and slide on me. My hands are not that hyper mobile, except from the joints at the end of my fingers-- though I have pain and popping there. On the other hand, there are joints not on the Beighton scale where I am loose--hips, feet, jaw, shoulders... And my skin only seems loose in certain places--inside of forearm, calves, feet. and I appear to scar pretty normally.

Am gonna get a pair tomorrow. Thanks! I also ordered a stocking donner. I'll let you know if it works...

We're pretty sure I have eds. My joints are unstable (subluxate, get injured easily, etc.), and some are hyperflexible, but many are not. Dr. Lavallee said I was one of the least flexible eds people he'd ever seen. My fingers don't bend in the ways they look for to diagnose eds, but still subluxate all the time. So my collagen is stiff but weak??? It's best to think of it as a syndrome. I think there are probably lots of variations, and until the genetics are better understood, it's all clinical diagnosis.

thanks, Nina. Do you use any old type of rubber glove-- like the type one might use to clean the bathroom? Michele

hi, I'm having a terrible time putting on and taking off my compression stockings with my eds fingers. i've now sprained my left and right thumbs and tip of two fingers. any suggestions? I don't want to have to choose between stockings and fingers--I need both! The sock donners I've seen are too big/wide to fit the oh-so-tight stockings over. thanks! michele

My only issue with the exercises is that they really bothered my not-too-stable neck.

How about just walking in the water? BTW, I'll be seeing Dr. Francomano in March. I've heard great things about her. She's in Baltimore. Best, Michele

I may need a new pcp--even though he is perfectly fine when I see him face-to-face, the ability to communicate or relay messages to him over the phone is terrrible. Unfortunatley he's part of a clinic that has the same communication system, and that has a semi-monopoly in this town-- so no sure I'd get a better response with a different doc... But every now and then he acts a little clueless. When I told him that I maybe wanted to try lexpro for my ncs, he kept thinking it was for depression. And now every visit he asks about my depression. and I keep reminding him that lexapro was for pots. but does not compute. I dunno-- my attitude toward docs has become a bit cynical. It's hard when most of my medical problems (eds, pots, chronic joint instability, etc.) do not have easy fixes, so I rarely have the experience of feeling bad, going to the doctor, getting a diagnosis and treatment, and feeling better. Instead I usually get the dumbfounded "don't know what it it," "it's probably nothing," or "it's anxiety." And then having to endure feeling bad. Till I stop contacting them, for fear of being made to feel silly, hypochondriacal, or nuts. For a while I stopped mentioning my presyncope spells altogether, as every doc told me it was anxiety. And believe me, I know what anxiety is-- and that wasn't it. But when you feel you haven't been heard, over time, you stop asking, and then I start filling with self-doubt myself. Only when the ep said ncs do I feel like I can mention the faintness without the "hysterical female" diagnosis. (Why would anxiety cause me to faint while peeing???)

I think I must be starting my 10 day pms buildup, but the past two days I've felt really strange. I feel this strange weakness that migrates--upper rt extremeities, mouth, then upper left extremities, then left leg...a doc before has suggested hemiplegic migraines, as I've tested negative for anything stroke related, and these episodes always resolve. But I also a, feeling increasingly short of breath and heart racey. I woke up in the middle of the night, taking fast, shallow beraths, with my chest feeling weird and poundy. It took me a while to have it settle down, and then I got really cold (adrenaline rush?) This morning I just feel strange-wired and yet exhausted and weak, and occasionally like I might throw up. Does this sound like pots? I know something always goes awry as I approach my period. I'm so tired of calling my doc's office- and this is a strange combo of symptoms I've had before that have never looked serious on the standard tests. Just something to put up with? Oy!

Sounds great! As I'm sure you know, form is key, and not all instructors/trainers are equally attentive. My pilates people actually have better eyes for misalignment than pt's I've had. I ever so slightly hike up my right shoulder and hip, but on an eds body, every millimeter counts. So it's great to have someone there telling me when I'm asymmetrical, or rushing and losing control of a movement, or or losing my "scoop and squeeze." Nothing like having someone's hand on your tummy or rear and saying "suqeeze MORE!" to make you squeeze harder than you thought you could! (I"m always surprised that they can feel and see what the muscles under my "natural cusioning" are up to!)

I'm really sorry about all you are struggling with. As an edser whose symptoms hit me all at once and seem to come in waves (tidal!), I can understand. Not that I in any way have this under control, but I find I have to be the advocate for myself-- which is hard when I feel like ****. For my pain, I try to research what braces will help when I'm really flared up, and then get my doc to prescribe them. I also try to find out which muscles are in spasm that can pull joints out. (ALong the way, I've learned more about anatomy than I ever wanted to!). I've had a lot of luck calming down pain with trigger point release--either done by a pt, mt, and once I know where the problem is, myself. And as you suggested, sometimes you need a really good painkiller, and a doc who will prescribe one. I've developed allergies to so many, but till recently vicodin did the trick. Several years ago, before my diagnosis, I went to a chronic pain management program for a month (insurance paid). (Out patient, but whole day). Though it didn't fix me (as many more injuries were to come), I did learn useful tips for dealing that I still use. These programs are a mixed bag, with little uniformity. I went to the one associated with the Rehabilitation Institute of Chicago--helpful and well rated. They focus as much on the physical part of the pain (with pt, ot, meds, etc.) and with ways to manage it, as they have psychologists there who specialize in chronic pain.