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TCP

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About TCP

  • Rank
    Advanced Member
  • Birthday September 12

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  • Gender
    Female
  • Location
    UK

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  1. It doesn't help me - makes my nervous system buzz
  2. 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.
  3. MVP seems to be a feature of Ehlers Danlos
  4. 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 type 3, Fibromyalgia, Mast Cell issues, the a pituitary tumour left me with Secondary Adrenal and Thyroid Deficiency. I've just been diagnosed with Diabetes and Non-Alcoholic Fatty Liver. I don't say I have ME/CFS or Fibro anymore as I think EDS and POTS were the underlying conditions that gave me pain and fatigue. Sometimes it's hard to differentiate between the different conditions, that is hard. I wish you well and I hope that you get some help.
  5. If I get up fast my vision goes black and I fall and sometimes I can walk a few metres and then I go dizzy and start to go. It really depends on many factors.
  6. I take a probiotic daily. I think it helps my gut. It took about 3 months to notice any difference.
  7. I am one of the oldies that checks into this forum. I have EDS 3, POTS, MCAD, scoliosis, cervical stenosis, neuropathy, secondary adrenal and thyroid deficiencies, IBS, gastroparesis and lots of other issues. I have increasing pain in and around my dowager's hump on my upper back. I am deteriorating fast, with worsening nausea and weakness (especially in my arms and hands), POTS worse/autonmic dysfunction, and my gut (bowel) is being affected, too. I am hoping to see my GP tomorrow to get re-referred to the rheumatologist. Has anyone else had similar issues? Thanks in advance
  8. She sounds like a complete a*******! I would have been livid with her dismissive attitude and tone. She doesn't know what to do to help so is fobbing you off. She's not helpful or the right person to have around you as she clearly is on another planet! I would put in a complaint if possible, but if not you are well shot of her.
  9. That is low and you need to tell your doctor. I went completely off my legs in 2007 when it got as low as 65/32 the hospital ignored it until I saw the neuro who said that should have raised alarm bells. Keeping hydrated helps
  10. I can't bend over as I get weak and lightheaded. I fall sometimes. I avoid it at all costs.
  11. I totally get this and understand your hurt, anger and frustration. Educate them the best way that you can and show them the test results and doctor reports. I print off things on the internet, too, if I want to explain certain things. I tell them about The Spoon Theory, too, as that may give people an idea of having to choose what you do and what you cannot do. Some people will remain blinkered and deaf to your words and that is their problem, as they cannot hack you being ill and their ignorance means they aren't interested to learn. They are doing a great disservice to you by speaking and behaving in an inappropriate way towards you and if it comes from a close friend or family member it can be very hurtful. I have had to give up on many people who did not get it because they chose not to. I got the whole, 'get out and meet people', 'some fresh air will do you good, 'take up sport', 'a positive attitude would help' etc. I told them that they lack medical knowledge and I questioned what they really thought of me if they chose to disbelieve the problems that I am facing on a daily basis. I find only a few family members get me and only friends with similar problems, too. I have numerous health problems and combined they can be very hard to live with and because I am overweight from steroids and immobility, and look robust (I'm not), people think that I am fine. I would be very upset if my mum said that to me and I would tell her that I am disgusted that she would think that. I got a wheelchair and I am glad that I did. Don't let her words stop you from getting one. I wish you well and don't let the dissenters get to you. PS I now have Secondary Adrenal Insufficiency and that can be life threatening and it's amazing that many people, including the medical profession, play that down as being nothing.
  12. I only take it in food or it makes me feel sick. I use pink Himalayan salt.
  13. I have really vivid dreams and nightmares and this has happened since I got Autonomic Dysfunction/POTS. I wake up clenched up, feeling dizzy and sweating.
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