mkoven

I didn't realize till relatively recently that being (too) flexible could be a bad thing. Everyone always pronounced the importance of STRETCHING, the more the better. And sometimes it is hard to know what "normal" is. I had no idea that everyone's elbows didn't bend backwards, till they started hurnting and pooping, and my doc told me that I had too much mobility. I now ask my various pt people to tell me what normal range of motion is in a given joint, so I know to try not to exceed it...easier said than done, of course. It's a good thing I was not graceful or coordinated enough to do ballet or gymnastics as a kid or I could have stretched stuff out even further.

just came home from the procedure. apart from being sleepy, clumsy, and forgetful, i seem to be okay. took the day off work and will now indulge in a little nap

That's great news, Nina! Keep us posted. I work twice a week with a pilates instructor. If nothing else it's really motivating to have someone else make you work and make sure you have good form.

I have to say though, I was disappointed by the amount of time they spent on the "freak show" aspect (the "oh gross! Do it again" aspect). As is being said on the ednf site, they spent more time on Gary's tricks and his three-legged dog than on the discussion of pain and fragility with Cyndy, Dylan, and Dr. McDonnell.

I didn't think I had the pooling until I saw those pics. My legs look vaguely sunburned.

Hi, I'm scheduled for an upper gi endoscopy this week. In addition to being nervous about my eds hips and shoulders dislocating if they put me on my side, I'm a little nervous about the versed. I've had it before, when my ncs was not a problem, but don't know how i'll react now. anyone's experiences? (My only meds are zyrtec, allegra, singulair, benadryl, and pepcid--nothing for pots specifically.)

Some of my worst presyncopal moments are while I pee or immediately after. I don't want to be found on the bathroom floor with my pants around my ankles!

I also have several varicose veins-- bigger than spide veins, a little like bulgey bluish ropes. the geneticist thought they were eds related. Not only are they not pretty, they can really ache. i did get a superficial clot in one after prolonged kneeling. this was my first introduction to compressions stockings.

I also get short of breath. I'm not sure I understand how it relates to pots/ncs, and neither do my docs. I don't know if my local docs just have limited experience, but i've been told sob is not typically a symptom...and it worries me every time, since they can't just tell me it's a piece of my ncs. i now get less freaked out when presyncopal, because i understand it--the sob i don't.

Hopefully this will settle down once you are back to your routine. I often have to remind myself that I don't have to be heroic-- that there's no medal for pushing myself until I'm just about to break. My new year's resolution is to balance my activities better so that I can better maintain this cranky body. My current source of misery is back and hips. I'm going to try to do more computer work in a recl;iner to give them a break. I've already had one spinal surgery and know that I absolutely don;t want to repeat that! My hips keep subluxating and it freaks me out. And most "normals" have no idea what I mean when I say I've popped a joint. Not some little click, but like a train coming off the track. Arrgh. And of course they do it at night too when I'm in bed. I'm then awakened with my hip bones stabbing me in the rear and groin. I wish I could staple or super glue everything into place!

I don't formally have a fibro diagnosis, but have a lot of muscle and joint pain from eds that i've been told are essentially secondary fibro-- muscle pain from trying to stabilize sloppy joints. When I'm having a bad flare, I have to first of all look at any triggers. Have I been on the computer more? Walking more? When I'm on the computer too long, I'm guaranteed hip, back, neck, shoulder, arm, and hand pain. I have to then take regular breaks, make sure everything is as ergonomic as can be, and see if there are several ways of completing the same tasks and alternating among them-- I alternate bw a sitting and standing position for computer work, for example. I've had great occupational therapy to help with that. I then need to find out which areas need massage-- either on my own with trigger point work, or with a massage person. Sometimes my period causes a huge pain flare. and when nothing calms stuff down, having rescue pain meds. Until I became allergic, vicodin was a godsend. I'd only need it once or twice a month, so I could fall asleep, but when I need it, I need it. Hope you feel better soon! Michele

My doc is strill trying to figure out how much of my breathlessness is asthma and how much ncs. Not sure how you tell...

Not sure this is the same thing, but I have rosacea. the vessels in my face dilate too easily and I turn flushed. And I stay pink with some broken blood vessels on my face. Perhaps related to pots, but rosacea is much more common.

It's a tricky balance, because when my allergies are out of control, my ncs is worse. My regimen allowed me to get off prednisone, but alas had its own problems. I'm trying to remember why my pcp thought zyrtec was more likely to cause tachy than allegra... I'm still on the zyrtec, just the lower dose.

I've been on very high doses of antihistamines since the summer-- double zyrtec, double allegra, and benadryl as needed. I saw my pcp and asked if any could be worsening my ncs, and after some thought, he thought zyrtec could increase my heartrate. We've since dropped me down to single zyrtec (10mgs). And interestingly, my heart rate has dropped about 15 bpm. I don't think this is the end of my pots/ncs, but at least an easily correctable factor. He thought allegra was less likely to cause tachycardia.

I've had to back off tilt training since hurting my hip. I subluxed it badly a couple times (eds) in the days after climbing some steep hills. i'm mostly okay walking (FLAT terrain), as that engages muscles, while standing requires more ligament strength and it starts to really hurt. I still am feeling better and think it helped, and have better tolerance for being upright. I hope I can maintain the benefits by just being upright more, even if it means upright and moving.

For the most part it is my understanding that treatment is symptomatic. For joints, it's important to keep supporting muscles strong. Vitamin C may help, but eds is not a nutritional deficiency. The problem is that we make faulty collagen. My own experience is that exercise does help as well as knowing my limits. When a joint starts to complain, I need to back off. There is a lot of good discussion on ednf about whether it gets worse over time. My own sense is thst aging affects the robustness of normal people's tissues as well--it's just often more pronounced with eds. And many report that hormonal fluctuations worsen it.

I teach courses that address the cultural dimensions of communication. For undergrads I teacj a couple different "intercultural communication" classes. One is very applied and helps to prepare students who are about to study abroad. My own interests are in the relationships between language and identity. I grew up bilingual and often felt like I was a different person in my two languages. And my research looks at the identity-creating dimensions of bilingualism. I feel fortunate that I get to teach and research stuff that really interests me. And in all, it's pretty flexible. No one really cares when I put in my time, as long as I cover my classes and publish research. But then the expectations for research are not so forgiving...but tenure relaxes that some. Thanks for the interest! It's a dangerous thing to get me started though!!! I'm lucky in that my health problems didn't really start until after graduate school, and after I'd started my job here for a couple years. But the past 4-5 years have been quite challenging.

Yes, I have eds, ncs, and I take huge amounts of antihistamines (zyrtec, allegra, benadryl) and singulair. I've only been doing the tilt training every other day or so to not stress out my joints too much, which seems to be enough to maintain. Right now my si joints and pubis symphysis are driving me nuts--like getting stabbed in the rear and crotch repeatedly

There are roughly ten types of eds. One is officially called vascular eds, but it is somewhat rarer thsn hypermobile. Thst said, many with hypermobilr hsve vascular issues. ednf.org is an excellent site with much info.

I'm now up to 15 minutes! I still have problems, but I'm able to stand and walk for much longer now. I still weart my stockings, get weird rushes, breathless, etc... but it helps my general confidence. The presyncopal spells are much more minor and infrequent. Basically, I feel slightly worse after a minute or two of standing anf my heart rate increases some, but then it seems to stabilize at around 96 or so. It's my joints that really start to hurt. I still allow myself some squirming to make sure hips are properly in socket...

I took neurontin for several months after back surgery for sciatica. IT helped a lot, but I had too many side effects--blurry vision, clumsiness.

I'm a bit of a mutt. I'm in a communication department, but my training is in a combo of anthropology, sociolinguistics, and psychology. Whew-- what a relief. Alll that, and today I turned 40. Feels like a milestone! Michele

Persephone, On an unrelated note, I just wanted to say that I love your dancing/boxing/jogging "tiger with earphones"! Michele

Fabulous news! I still get a little anxious before I teach, esp the first several meetings. But once you get to know the students, it passes.