For most of my adult life if have suffered with poor sleep, chronic fatigue and severe physical exhaustion after what might be considered normal exercise. I go mountain biking with friends who the next day would be feeling amazing but i am totally debilitated, limbs shaking/buzzing, can barely stand and head dizzy for 3 days to one week after. I'm 45 now, and since my mid 30's it's been getting worse. 50% of my days i feel un-rested and destroyed (i mark days as RED or GREEN on my wall planner!) Up until now, nothing wrong with me according to docs. 'Just' CFS. CFS, but why? Last week i had physio for the first time on my shoulder, and the therapist said 'oh, you're hypermobile, did you know that?' No i said. I check it out online and realise that i could always put my thumbs back to my wrist, make a backwards scoop with my fingers, thumbs go 90° the wrong way, shoulders go back much further than a normal shoulder. I always told people how i can not only touch my toes but put both hands flat on the ground. Then i see an EDS link on the NHS website. Then i am blown away! I usually have dizzyness when i stand up, and even have sleep apnea symptoms. Always.. It all matches EXACTLY, hypermobile EDS.
Would anyone agree that i almost definitely have hEDS?
There doesn't seem any point telling a GP as they will usually just tell me to take ibuprofen and i'm almost sure they won't acknowledge EDS or even know what it is.
Many thanks for your thoughts/comments on this.
Terry
Written by
TranceW1974
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my daughter has been through the minefield that is hEDS. She is 18, has had half a dozen stays in hospital due to other side conditions. The NHS simply does not recognise this new science. You have to calmly BUT FIRMLY insist on further investigation. NO TWO PEOPLE ARE THE SAME. yes we will all share individual experience on this forum and I am new so still enthused by the forum to (probably over) "share". I hate social media because you get the moaners and groaners, this however is different. In a World where, as you say, no one seems to listen, we can take comfort (weirdly) that others suffer in similar ways. From what brief details you give I believe it is very reasonable to seek further diagnostic investigations.
However, whether you get the label or not, you feel exhausted so perhaps spend some energy into what other sufferers have done to make their life more comfortable day to day. I AM NOT an expert but it seems to me that diet is very important where suffers talk of improvements in energy, stomach discomfort etc. My daughter is now trying a low histamine diet (she may have a condition called MCAS) which means her body over produces histamine so she develops "adverse reactions to food/medications that the previous day did not affect her!). She has more energy and the good days are better. The bad days are less worse.
It's all in the small detail, small wins certainly help! There is no magic wand I'm afraid but help is there and the science is improving.
I tend to waffle, sorry. Hope some of that strikes a chord and helps.
Thanks for the reply. I’m glad your daughter is seeing some improvements. You’re right, I should study and learn about ways that others manage their condition. A diagnosis for me won’t seem to change the fact that even with a diagnosis, all I can do is learn to manage it myself really. All the best. Terry
I agree with Micky’s advice. I’d just add a couple of websites by medical doctors who have EDS themselves, as well as Jan Groh’s site as she’s done a lot of research and evidence gathering. Naysayers need to read the truth in black and white - so here it is for you.
Dr Jaime Bravo Silva, rheumatologist from Santiago Chile. He’s had 4500 EDS patients and research has found that 40% of the Chilean population have it. His website is in both English and Spanish.
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