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TCP

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About TCP

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    Advanced Member
  • Birthday September 12

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    Female
  • Location
    UK

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  1. Very interesting. I developed neuropathic pain all over 13 years ago as the dysautonomia and POTS progressed.
  2. Hi. Sorry you feel that this was all a waste of time, effort and money. I became ill with fatigue issues after Glandular Fever and surgery in 1984. Felt awful for 8 years until I got an diagnosis of ME/CFS. Symptoms waxed and waned over the years and improved when I started to eat more healthily. I got fitter and lost heaps of weight. Then in 2007 I had symptoms of whole body neuropathy, POTS and autonomic dysfunction. Put on Gabapentin and Nortriptyline. Then finally got diagnoses of Ehlers-Danlos and POTS. I didn't have ME it was always EDS and POTS. Many friends with ME/CFS and Fibromyalgia
  3. https://healinghistamine.com/histamine-intolerance-symptoms/
  4. The change in diet has been the best thing for me. Yasmina Ykelenstam with her Low Histamine diet was the best help. Google her to see her website.
  5. I've got more bulging veins now that I had a few years ago. I have them around my anus (TMI), hands, feet and arms. They can get very painful.
  6. Lying down levels everything out, no blood pooling.
  7. I've decided to go for some Osteopathy once I can leave my home.
  8. I was diagnosed late in life, five years ago. I saw a really good specialist for a few years and he was really interested in exploring everything about POTS. He left for a post overseas and his replacement was lovely, too, but only stayed about a year. Then another specialist came on the scene and he seemed less tuned into POTS. My breathing was getting worse and so he decided to send me for some tests. The only thing that showed up were things I already knew that I had. I had a follow-up telephone conversation with a nurse and she got back to me later and the doctor wanted to sign me off. The
  9. Thank you for your replies and I can identify completely with what you are saying. My neck isn't in great shape but years ago it was my lower back that was the biggest issue. I have a Dowager's hump and C5-C7 issues of stenosis. I have been receiving physio advice over the phone about gently exercising my neck. I have also looked into trying to treat the hump as that is uncomfortable, too. I am wearing a brace for 2 hours per day at present and using 2 balled socks to gently press onto the spiny hump when lying down/high-backed chair, and doing chin tucks at the same time. I am doing this very
  10. It doesn't help me - makes my nervous system buzz
  11. Yes, I get some problems when wearing (particularly tight) compression garments. I am guessing the pressure one end causes pressure at the other. This is the same way when I get constipated I get bad headaches and eye pain.
  12. MVP seems to be a feature of Ehlers Danlos
  13. Hi. Sorry to hear about your breathing. Mine got worse over this past year and the cardiologist sent me for an echocardiogram, xray, blood tests and spirometry test. All came back OK, I think, as I haven't seen the cardio yet to discuss the results. I started off with Epstein Barr Virus, which gave me Glandular Fever back in 1984. I never felt well after that as I had surgery around the same time and that didn't help. Eight years later the label ME/CFS was attached. Fast-forward to 2007 then POTS and neuropathy came on suddenly. Since then I have had the diagnoses of POTS, Ehlers-Danlos ty
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