Ehlers Danlos Syndrome (Hypermobility syndrome)

cally6008

Hypermobility + Pregnancy = not good to be honest

http://www.hypermobility.org/pregnancy.php

http://www.hypermobility.org/forum/index.php - Long thread in personal + sensitive issues forum but its restricted access

clarissa

I eventually went and had a look at what Hypermobility Syndrome was the other night. WOW, it was like some sort of revelation! I read through a forum and spent about 2 hours with my mouth open nodding.

I've always had bendy, cracking joints and periods of severe joint pain since my early teens (now 45). I did the Beighton Test and scored 7/9 (my right arm and leg bend the wrong way but not my left.) I regularly feel as though my joints partially dislocate or get 'stuck' and have to 'crack' them back into position, subluxation (new word!) I've never had full dislocation but have always felt some joints were more mobile than they should be.

My right hip has always moved about 2 inches further out to the side compared to my left, my fingers all bend to at least 90 degrees (used to be able to touch the back of my hand with some finger-tips, but I'm older and stiffer now!)

I spent about a year having horrendous right shoulder and neck pain, enough to seriously consider having to stop working. My GP eventually sent me for an MRI scan after I told him how many of the painkillers I was actually having to take to take the edge off the pain, he went pale! A week before the scan I had the most awful crack in my shoulder, pain went and nothing much showed on the scan. It's happened to a lesser extent hundreds of times since but I've learnt how to snap it back now. In recent surgery I woke up in ICU after 13.5 hours of abdo surgery screaming in pain from my shoulder not my tummy. In the following ops the anaethetist positioned my right arm palm down rather than palm up and there was no pain afterwards.

My elbows and knees have always 'locked' bent and given way. Over the past few months the pain has been awful from them and I have Golfer's Elbow (opposite side of joint to Tennis Elbow). My jaw seems to dislocate and something strange also happens in my neck. Everthing is more prominent on my right side.

It has got far worse since I had a succession of major operations and developed cardiomyopathy and have had to limit my activities to the minimum which has resulted in muscle wastage.

I'm also tall, was slim until past year with long fingers (I'm going to do more research on the other signs). My sister has similar problems.

Sorry the post is so long. I just can't get over that all the joint pains and oddities I've had for years and thought were linked (but thought I was a raving, whining, hyperchondriac) aren't normal. I was planning on mentioning all my pains to my GP next time I was in anyway but will definately now.

Thanks!!!

Mojisola

daska wrote: »

I've not been 'diagnosed' formally but we have similar problems - joint pain, ankles and knees twisting suddenly when walking etc. Is that hypermobility. F!!! All my pain has been put down to the ME/CFS but I've said all along that I've had the 'weird' sensations since I was a kid.

I don't know why doctors seem to think that if you have ME, all the symptoms you have must be down to ME! Don't they have any patients with arthritis and heart problems and diabetes and so on?

In addition there is some research that links hypermobility and ME -
https://www.chiropracticresearchreview.com/crr/article.php?id=144
"Results: Children with CFS were 3.5 times more likely to possess hyperflexible joints than otherwise healthy children with skin disorders. Additionally, 24% of the healthy subjects had joint hypermobility, compared to 60% of the CFS subjects."

http://news.softpedia.com/news/Hypermobility-of-the-Joints-May-Be-The-First-Sign-of-Chronic-Fatigue-Syndrome-34618.shtml
"A group of doctors from Johns Hopkins Children's Center state that uncommonly flexible joints may be one of the earliest predictors of Chronic Fatigue Syndrome."

daska

Yep, I remember the physio telling about my being double jointed (I'm guessing hypermobile is the 'official' way of describing that?) in my hips when I was about 13 - I started having back problems when I was 11 - I can bend and touch the floor with my palms despite being distinctly underfit and overweight! And I frequently think I've 'strained' my ankles while walking (well, to the extent I can walk) but it doesn't last, I'm guessing the pain is things moving out of place and then back in again - I'm flat footed as well and need prescription supports.

I like having an explanation for what I feel - they can't explain ME/CFS, it's almost a 'non-diagnosis'...

annaats

Hi Guys, My sister has EDS, Hypermobility, Fibro etc, it seems it always takes years to get a diagnosis, but several years later she's just got some great knee supports which have been great! I highly recommend the hypermobility forum and hmsa site, loads of people will actually understand you and believe you, unlike a lot of 'normal people' and doctors!

All the best to everyone with this!

cally6008

back from docs and got codeine tablets now

mouseymousey99

Hi Cally, Codeine is good p.killer but does have some 'side effects', you really need your 5 a day as they can help make you very bunged up (sure you know but may be worth a mention)....

cally6008

got stomach bug at moment so getting bunged up wont be a problem ... LOL

not in good way at moment, just attempted to get up from lying on sofa and crunched something in my back twice, hobbling gingerly around at the moment

MediSin

Mojisola wrote: »

I don't know why doctors seem to think that if you have ME, all the symptoms you have must be down to ME! Don't they have any patients with arthritis and heart problems and diabetes and so on?

Doctors always take the easy cop-out. I've got type 1 diabetes, so obviously everything that ever happens to me is diabetes related. If I got shot in the head in a drive-by shooting, they'd still claim it was diabetes related. Seriously.

Regarding the codeine - yes, it may make you constipated at first, as well as sleepy and less hungry but with weird sugar cravings, but that's just what you expect with any opiates. And as with all other opiates (tramadol, smack, etc.) eventually you develop a tolerance. So the side effects go away, but also the drug becomes a lot less effective at actually relieving the pain. So only take it when you really need it, or it'll become useless that much faster. And once the codeine stops working and they move you up to tramadol, you'll have problems as they doctors will think you're just drug-seeking. So be careful...:eek:

cally6008

more info about codeine here - http://www.hypermobility.org/forum/viewtopic.php?f=26&t=3346

very helpful stuff