mkoven

I personally find it helpful to know that there's an underlying connection that explains all my weird symptoms--otherwise I was beginning to feel a little nuts. Dr. McDonell is finding connections between pots, eds, weird allergic sensitivities--it's nice to have a little validation that it's all of a piece. I'm less loose than many, but I also remember having really bad leg pain when I was little that would keep me up at night-- my parents chalked it up to "growing pains." But my joints only started being a problem slowly in my late 20s, and then suddenly and intensely in my late 30s. I'm 40 now. Had I known, I might have dome some things differently. I used to carry ridiculously heavy loads which I"m sure did not help my now very sloppy back. So maybe you can avoid some of the joint stuff with this bit of knowledge?

I think the guy in Washington (state) must be Dr. Byers-- he does most of the biopsies. Dr. McDonnell is in Baltimore, I think. It's great that you have some more understanding of what's causing your symptoms-- though I'm sorry it's eds. Good though that your joints are quiet.

I have a wheelchair, a scooter, and a walked with a fold-down seat. I've gotten most for my joints, but they help when I'm otherwise feeling bad. I find I'm not strong enough to wheel myself with a manual wheelchair-- I have to be pushed. I can use the scooter--it was a bit pricey. and the walker is great as I can take a break whenever I need to.

I'd been less aware of the racing heart till today-- I'm into serious pms which majorly flares everything. Everytime I stand, I feel tired and shakey-- and lo and behold I'm between 110 and 120, when I'd gotten my standing hr down to mid-eighties recently. When I sit, it goes down to 75-85. I feel tired, shakey, and if I focus on my ears, I feel the racing there.

That's wonderful news, Persephone!!!!! Congratulations!!! Michele

I've now had it for over 24 hours. Turning my head makes it worse, and I've been told that my neck is part of the issue. I'm also premenstrual. Yesterday I wore my neck brace -- which only helps some. I took some darvocet, which helps, but when it wore off the headache was still there. Ice didn't really help. and lying down is bad because it hurts to have anything even touch my head. This is getting very old. I may have to take more darvocet to get through the day, but it eventually messes up my stomach. ugh.

anyone else get killer headaches? I've had one for the past 12hrs. My pcp thinks they might be migraines, since I get nausea with them, but they also feel connected to my neck, as head movement worsens them.

I've posted before about my hand problems putting them on. I do seem able to get them over the heel allright-- it's the rest of the way that's the problem. I always get open toe, and then you can get these little satin footies. Put the footies on first, and then the stockings just slide right over your whole foot. You then pull the footies out.

I posted b4 about training myself to stand still under "tilt training." I got to where I could stand for 15 minutes, but only by adding 30 seconds every several days. At first I made it a minute. It may or may not help to try to start with a much briefer time??? three minutes may not sound like much, but may be too much to start with? I had to quit the tilt training because my hips can't stand static standing. But I still feel better than before I started the stand practices--so it has lasted.

Just a thought, but aren't chills sometimes a reaction to your own adrenaline? When I'm having a weird faint spell, it's often followed by chills, which I thought was the release of adrenaline to try to right things? I also get chills during my period. The only thing that works for me is drinking really hot fluids.

thanks to everybody for input here. I am still trying to make due without meds-- just stockings, salt, and fluids, and am trying to see if I can feel okay. My doc and I were speculating that these dips in bp are probably behind some strange neurological problems I've had-- transient one-sided weakness that looked like a tia, but where nothing showed up on brain mri, mra, ct scan, and reoslved. and if i'm about to pass out, I get very itchy--previously diagnosed as anaphylaxis, but I think the itchiness was my body's reaction to bp drop, not bp drop as reaction to allergic reaction. and when i get to 80/50, and sometimes lower, it's true that i don't feel so hot. but i don't think it's sustained--just dips.

Hi, As my fingers are killing me putting on and taking off the stockings-- even when braced and wearing rubber gloves, my doc said I should get some with zippers. HAs anyone tried these? I'm afraid that the zippers are only for knee highs...

since the testing for aortic dilation is not a big deal (not very invasive, dangerous, painful)--echo cardiogram and/or ultrasound, I think many docs feel it's worth it. If heds has 25% rate of dilation and ceds 33%, that's not trivial. Again, dilation or aneurysm is not the same as rupture-- it just raises the risk, as the walls are stressed/stretched. I think monitoring is not a bad idea, if you have a connective tissue disorder, to make sure there is no dilation, or if there is, that it is not getting worse. I believe most docs will let patients go to a certain size dilation before they intervene surgically. If you are dilating, typically the recommendations are to avoid hypertension or spikes in blood pressure that stress the weakened wall further-- so no lifting of heavy weights, etc. I have no dilation, but will continue with annual screening. And from what I understand, aortic dissection is not something to be messed with. Once the aorta ruptures (actually rips, not just stretches), the outcomes are often not good at all. That is what John Ritter died of (without connective tissue disorder). Older folks with hypertension can rupture--my boss died of this in his early 60s. One of my best friend's mother had this happen, and she did survive though.

Hi. I just saw my doc who was very concerned when I told him that my bp can easily drop to 80/50. He said that my organs won't be sufficiently perfused and I could have damage to kidneys, for example. It doesn't stay that low, but when I'm feeling bad, it can hover there for a bit. When I'm feeling okay, it's just low normal-- 110/65 or so... Can hypotension really be so harmful?

I think that now they are finding more crossover between the different types. On the ednf website, they are saying that 25% of those with type 3 and 33% of those with classical have some aortic dilation--which should be monitored, because it may put someone at risk of rupture. I've been told to have yearly echocardiograms, even though I'm either hypermobile or classical, not vascular. It makes sense, as we're talking about tissue fragility from faulty collagen.

Hi Persephone, I have very loose feet and often feel like something is out of place. Indeed it does sound like your metatarsals-- a place where I have long time issues. It's quieter now, but in the past lots of popping and crunching, esp. when I first stand. Ouch. Footwear is key for me. I wear metatarsal pads in my shoes--just little blue gel inserts that cost 6 USD. I got them at an athletic shoe store. There are different brands with different heights. I like spenco and have ordered a back supply online. I then tape them to the insoles of my shoes. It supports the metatarsal heads just right. I also need shoes with a wide toe box. I wear birkenstock's--they now make them in styles that look a little more presentable, so my favorite is a simple Black leather clog. The Footprints line has some cuter styles. I also roll the sole of my foot over a rubber ball on the floor. Exercise wise, you can stretch and strengthen the area --I do a GENTLE achilles stretch, and then also stretch my toes, by keeping my heel on the floor and gently pressing my toes against the wall. I also find it helpful to alternate pointing my foot and then spreading my toes. Spreading my toes helps to uncramp the area. Good luck. I've learned the hard way that if something hurts, I need to back off and do it differently, and nip it in the bud, or I end up with longterm issues.

I've worked with a pt and massage therapist on identifying my trigger points. But there is a great book by Clair DAvies that describes where you may have them, depending on the site of your pain. I use a foamroller, thercane, and hard rubber ball to roll over and release them. I don't know that xrays would necessarily help. It's somewhat individual whether a bike will hurt your knees. You could try, and if it increased your pain, then stop immediately. I can't do the elliptical...it really varies. A physiatrist might help... Good luck!

Hi Persephone, Are you on an anti-inflammatory, like ibuprofen or celebrex? These can be associated with ringing in the ears and ear damage. At high doses, I have problems. Michele

My favorite knee exercise is the following: Terminal knee extension. Loop a theraband or tubing behind and above your knee. Secure it also to something sturdy, like a railing. Stand back from the railing till there is mild tension on the band. Keeping your glutes tight, ever so gently straighten and bend your knee ever so slightly. Start with a very small bend and very low resistance. As you get stronger you can increase the bend and tension. I like it because it's "closed chain," meaning your foot is on the ground, making everything more stable. This exercise really stopped the constant popping, clicking , and grinding of my kneecaps. But it's key to start slow and gentle to see how your body is responding.

Starting very slowly with few reps in a small range of motion might be the way to go. Do you know which part of the knee has arthritis? The exercises may differ. I have eds with arthritis in both kneecaps, and loose ligaments. I wear heavyduty braces that look cumbersome, but really allow me to get around much better. Which ultimately stops my muscles from getting too weak. I've had pts try to convince me to shed the braces, but I'm then in so much pain I can't do anything. I figure I'm better off in braces that let me be more active generally. Good pt, releasing those muscles which are tight with trigger point release, braces, and backing off when I flare have helped me a lot. My kneecaps used to be too painful to even walk. Not they are only a little bothersome, and not all the time.\ Hip strength is important for keeping knees aligned. Your shoes are also important. I cannot have sudden increases in activity-- a recipe for pain. But I can add 1 minute to the bike or to walking every 2-3 days. I got a rx for the braces and they were covered. They are custom and an orthotist fitted me. I really have to listen to my body. There are days (like today), when I just can't do the stationary bike, 'cause my knees are too sore. I try to go for a BRIEF walk then instead.

This may not be relevant at all, so pls disregard if you need to. I've had my fair share of bladder issues-infections, irritation, feeling like I need to pee all the time. However, a ;piece pf the story I'm just now realizing-- I have eds, and my pelvic joints are frequently out of whack. Before I was diagnosed, I would get intense pain that felt urological or gynecological, but the urologist and gynecologist couldn't find anything. Now I know that when my pubic joint (the bone in the front of your pelvis) is out this triggers the sensations, as the joint pinches all those nerves. If I can get back in joint, it immiediately resolves-- except for the fact that the joint remains loose.

It could be your back. I have numbness on the top of me foot and big toe from a bulging disc at L4-L5. It's worse with prolonged sitting.

I had a clinical diagnosis from a geneticist-- they can only biopsy for vascular , 50% of classical, and perhaps some of the rarer types. I did have a negative biopsy, but that only ruled out vascular and one other mutation. They don't yet know much about all the types of collagen mutations. But a geneticist should still be able to diagnose.

Knee cracking for most people usually just means the knee cap moves into the groove. A lot of people have somewhat tight/short lateral thigh muscles that pull on the kneecap a bit. It's really only a problem if you have pain associated with it. Though, before I was diagnosed with eds I had clicky knees that hurt intermittently--till the day they started REALLY sliding out of the groove and subluxing with sharp pain, where I had to squirm my leg around to get them back in. So it's a matter of degree Normal tissue won't usually let you sublux/dislocate without serious trauma. Though a lot of normal people get arthritis under their kneecaps, in part because the kneecaps don't track/ride quite right. My knees stopped cracking so much when we discovered pt exercises that lengthened the outer quad and strengthened the inner part of the quad. So even with pretty advanced arthritis, when my kneecaps ride right, the pain is minimal and the noises stop.

I've been getting this gnawing anxious feeling of dread in the pit of my stomach and chest like something bad is going to happen. I don't know how much of it is stress, but I don't really think there's anything unusual going on to make me stressed. Could this be autonomic stuff? I've been feeling more faint and heart racey of late. It's very unpleasant. I feel quite wound up.