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cmep37

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  1. There are 13 different types of EDS - most of us with POTS have hypermobile EDS and hEDS is far and away the most common form. The different types of EDS and what criteria you need to meet for a diagnosis can be found at EDS Types | The Ehlers Danlos Society : The Ehlers Danlos Society (ehlers-danlos.com) I saw 3 different rheumatologists before being diagnosed with hEDS - the first 2 seemed to think you couldn't have it unless there was a family history of it but that's not the case. Thankfully I don't fully dislocate joints often but I do partially dislocate a few times a month. If you don
  2. If the flare is bad enough then yes I do experience muscle weakness as well as fatigue - it feels like I am stuck in treacle and I am forcing myself to move though it. The first couple of weeks with this Covid flare I was extremely weak as well as tired. All my muscles seemed to be much weaker - there were days I could barely lift a glass of water without massive effort , the glass felt twice as heavy as it actually was. I wonder if it's a case of not enough oxygenated blood circulating to supply muscles with what they need to work properly. For me it does fade away as the flare subsides
  3. Short answer nope, no-one seems to care! Mine isn't quite as bad as yours, but it's never more than 20 when I'm standing and the lowest I've seen it is 12. I do know someone else on another forum with POTS who had a pulse pressure of 6 - recorded in hospital, they couldn't believe she was still conscious. I've spoken to my GP and my cardiologist about it and both just say it's a sign of how much my heart is struggling to pump blood round my body when I'm upright and how little blood is circulating in my system. Neither of them are concerned as my pulse pressure when lying down is normal (
  4. I know some people aren't keen on Driclor etc as they believe strong chemical deodorants can increase your risk of breast cancer. Personally I was ready to give anything a shot as I was too embarrassed to go out with wet patches!
  5. This is a typical symptom for me with POTS - my GP prescribed me Driclor (a really strong antiperspirant deodorant) as like you I was soaking the armpits and back and underboob area of my clothes if I stood up for more than a few minutes. It has worked a treat - I used it every day for about 3 months and now I only need to use it a couple of times a week. You can buy it on Amazon if you don't want to go through your GP. It doesn't stop the feeling of being hot and sick but it does stop the rivers of sweat!
  6. I'll have a look out for those thanks Pistol - my GP gave me these high-calorie protein drinks which are utterly vile so any alternative to those would be good. I'm not great with thick drinks (I'm the only person I know who eats Hot chocolate with a spoon like soup otherwise I choke on it!) and these taste so synthetic and sweet that I just couldn't get them down.
  7. I have the opposite problem - I really struggle to keep weight on. I lost 5 pounds with Covid and my BMI is now 19 again. I retch and vomit most days - I have tried eating smaller meals more often , it makes no difference, I just feel sick more often. My HR is 140+ just standing still and easily hits 160+ when I exercise which burns loads of calories so although I seem to eat a reasonable amount of food I find it really hard to gain weight. The only way I can put weight on is to eat rubbish (chocolate, ice cream, sweets) which I don't like doing as I try to limit my sugar intake.
  8. I spoke to my GP about it and she said that as long as I could prove the person I was seeing was an expert in POTS (she is, she has written books and speaks at conferences on dysautonomia which my GP said would more than qualify as an expert) then she could prescribe anything suggested that was a drug recognised in the UK ie it couldn't just be experimental. She was happy to prescribe drugs even if UK consultants wouldn't usually prescribe them for POTS on a trial basis and if they helped me then she would carry on prescribing them. We talked about IV saline which given Pistol's experiences I
  9. I get that pain you are experiencing too Merkat - usually when I'm in a flare and haven't been able to do enough exercise. I've had it every night this week as I haven't walked further than bed to loo to sofa in about a month although I am still doing stretches and physio exercises. I always thought it was coming from hEDS rather than dysautonomia but maybe I'm wrong. I feel like you do with consultants and doctors in the UK - if you are hard to manage they tell you to learn to live with it - I'd like to see them deal with what we do every day for a week and then still tell us that! That i
  10. Thank you - I am extremely grateful that none of my family needed to go to hospital and am convinced that the Vitamin D supplements my Granny has taken since the start of the pandemic helped her. My Dad's friend died of it last week (there are loads of cases in our area - we don't think we infected anyone thankfully) he was in his early 70s and still working fulltime with no major health issues. His wife who also tested positive has COPD, yet she had barely any symptoms. I keep telling myself that this flare will pass - my blood pressure around 8pm last night though was 65/42 - a new l
  11. So I tested positive for Covid the weekend after New Year. I thought it might be useful to explain what it was like to have POTS and Covid. FIrst, to start off with it is very hard to tell that you have Covid! For the first 10 days, I had no cough or loss of smell or taste and although I did have a temperature it was only at night and no different to my usual dysautonomia night sweats which I generally get a few times a month, more often if I'm in a flare. As no-one else in the family was ill apart from my 85 year old grandmother who a few days earlier complained of being very tired, f
  12. I live in the UK and take Domperidone too @KiminOrlando. I've not been formally diagnosed with gastroparesis but I have all the signs of it when I'm in a bad POTS flare so my GP is happy to prescribe it so long as I'm only taking it for short periods a few times a year. Domperidone works brilliantly to speed up my digestion - I usually only need to take it for a few days (less than a week) at a time. There is some concern about long-term use causing cardiac complications like long-QT syndrome so even in the UK it's not as popular as it used to be but my GP hasn't found anything else as effe
  13. My cardiologist was extremely positive about it - he told me it would reduce my standing HR without lowering my BP like beta blockers did. Apparently a colleague had had great success with it! I had read about it and knew it was contraindicated if you have bradycardia - at that point my HR would be high 40s/low 50s a few times a month but my cardiologist though it was still worth a try. Within a fortnight of starting at half a normal dose (so 2.5mg a day) my HR had dropped into the high 30s/low 40s in the afternoons and evenings so I had to stop. To be honest it was after this my bradycard
  14. Just wanted to wish you all a very merry Christmas and a happy (and hopefully healthy) 2021! Thank you for all the advice and support this year - it makes it so much less frightening and lonely when you have a "tribe" to belong to!
  15. What weight did you get Merkat? The price seems to have dropped a lot since the last time I looked at them - happy days!
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