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steamship

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  1. I have tried below to post a link about fatigue and EDS be medicated by autonomic dysfunction. I found it quite interesting, an its spurred me on to get my dysfunction investigated as a possible way of dealing with the terrible fatigue. I have EDS III. http://www.cfids.org/archives/2004/summer-issue.pdf You need to open the pdf and look for the article by Alan Pocinki on 'joint hypermobility and the link with CFID's. You may find the bit on p12 about being woken up at night short of breath with heart racing and this being diagnosed as anxiety interesting.
  2. In the UK Prof Grahame is on of the rheumatologist who has the most expertise with benign joint hypermobility / EDS. His opinion would be that clinically you cant distinguish between EDS hypermobile type and BJHS. So he uses the terms interchangably. Certainly there seems to be a spectrum but there deos not appear to be a clear cut off where one become the other. So it may depend who you see and what camp they are in as to the diagnosis you get. Or what you want - when you wnat something from a medic you call it EDS when you want travel insurance you call it BJHS! As to the blue sclera. The eye is mostly made of collegen, however when you have defective collagen this is sometimes shown up as blue sclera. The collegen of the eye is thinner and so looks blue. It tends to indicate a connective tissue problem, but not always. It isnt only found in EDS but also in ostegensis imperfecta and Marfans. Of course these are all linked as they are heritable disoders of connective tissue and there is quite a bit of overlap with them. But also some people think it can indicate iron defiency and people on long term steroids can develop blue sclera. My daughter is 2 and so its still a bit tricky testing her for hypermobility but the genetist we saw felt she had EDS hypermobility type or BJHS. My other 2 kids dont have blue sclera and are old enough to understand taht mum is ill and the implications for them of being diagnosed. so we made the decision not to take them to the genetist, however they both seem to have hypermobilie joints but are both very health and happy at present The approach I take with them all is to try and help them understand that for them more than most its important to look after themselves and not to push their bodies. To ensure they dont get overweight and take part in excercise which they enjoy and for them to be very aware of the limits of their bodies and to work with this. Some have suggested that I shouldnt let our little one do gym or ballet since we know she is affected however I shall allow her to do all these things as she needs a life, and its better for her joints to be supple, toned and supported by strong muscles than to be weak and weighed down by excess weight. Sorry got a bit off topic there but I'm sure a a mum you'll understand! Steamship
  3. Hi there I'm 35 and ws diagnosed with EDS about 5 years ago. I'm a mum of 3 kids, the youngest (age 2) we know has EDS as she has Blue sclera. However she is quite well at present with no problems - apart from her behaviour!! I'm based in the East Midlands
  4. thanks for the welcome and the advise. It seems like I will have to see what the Prof says and then just be prepared to try things, as some of you seem to have had some improvement of fatigue with treatment ..and Morgan your joke really made me smile
  5. I have eds hypermobile type and have suspected autonomic dysfunction. I'm waiting to see Prof Mathias (UK specilist) about this should be seen in a few weeks. When I was first diagnosed my problem was pain, after painkillers, physio, OT aids etc the pain is 'do-able' What I find completely disabling is the fatigue I suffer. This is really starting to take a toll on work (which I may have to stop) and family life, not to mention my social life (limited to going to the book club cos I can sit down all evening there!) Before going down the treatment for chronic fatigue root, I wanted to explore whether the autonomic dysfunction was the cause of the fatigue. So I was wonderin whether any of you with autonomic dysfunction also have severe fatigue and when it was treated did the fatigue improve or did it not seem to be related? It isnt my blood presure that bothers me, I dont faint etc but its the other symptoms like intolerance of showers, poor heat regulation, eating late causes me to vomit as I have impaired gastric transit. Going upstairs is exhausting, headaches, blurred vision etc sure you know the type of stuff. All of it I cant put up with but the fatigue is crippling. Clearly I dont want to spend a year waiting to have the autonomic function diagnosed and treated if it makes no difference to the fatigue as I'd rather explore the other options sooner I have switched to decaff and have increased my salt and fluid intake and am wearing support tights - not noticed a huge difference I'm greatful for any help - especially since I'm funding my private healthcare myself!
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