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Everything posted by Rgaff

  1. Thank you all. I do feel alone. I know you are all on here but in my day to day life the truth is I am alone. Thats ok. I dont like to talk about it too much either. There is nothing I find more boring than listening to someone go on and on about their health issues, as bad it may sound. So , I am very aware of not burdening others around me. But, just popping in here from time to time my hope is that I can learn a little, pick up some tips and feel a little soothed in knowing, like you all said, that we are not indeed alone. Thank you all Rachel
  2. Hello Womble. I knew immediately you had to be in the UK when I saw Womble ! I just got back from there visiting my sister. I am just turned 47 on Sept 27 so am close to you in age. I too have developed the same. I am someone who sleeps all night and never goes to the toilet. I can drive for hours etc and not feel the need to pee. Until lately. I too have found that I go, then stand up and start again. Just the other day, I went, then got in the shower and it started streaming down my leg. I have a good friend who is also a cardiac surgeon and he has explained that the ANS (Autonomic Nervous System) controls heart rate, blinking, bladder control, digestion etc I am going for extensive testing in November to the Cleveland Clinic as everything in my world is changing and I hate it. I will report any accurate facts I discover once my visit is over. Give my best to uncle Bulgaria !!!
  3. I too am a new member since Sept 21 although not listed above. Totally fine, apology accepted ! I was diagnosed with POTS last year, July 2015. I am developing new symptoms and had no idea that they might even have been related. Thought I was going mad to be honest. Since April this year, I can't seem to eat without having severe bloating. The fatigue is awful at the moment. I am 47 years old and feel like I'm 90. This morning, I walked to the kitchen and made something to eat and I feel exhausted. I do have a question for you all. I checked my heart rate and it seemed totally fine. It was actually 78 when sitting. My resting hr has been 125 and varies . Tilt Table test last year confirmed diagnosis when it shot to 152. My question is this: Even when the monitor shows a relatively low hr, do any of you feel exhausted? I feel like a complete hypochondriac lately. No one can see it as I'm told all the time "But you look great"... so I isolate. I feel like I'm digging deep for air, like I'm not getting enough. Really trying to learn as much as possible about my condition as I have discovered that just because you are a doctor does not mean you are a good doctor !
  4. Thank you. Read all about it. I dont recognize any of the hypermobility issues.
  5. I am brand new here. Today is my 1st day after some time of looking around the web. Never thought I'd be online looking for a support group until I admitted I need support. I was an avid and active athlete until I broke my ankle in 2008. Tennis, skiing, you name it. In 2009 I was diagnosed with RSD (Regional Sympathetic Dystrophy). In July of last year, 2015 I was diagnosed with POTS. I am a 46 year old female and I simply feel like my body is a crock. I am so utterly sick of dealing with it alone. when trying to explain, people just dont get it. Why should they? I barely do ! Last year I had a skin cancer removed from my nose. Skin graft failed. Then had skin flap with massive reaction. I react to most medications. I dont seem to recover from routine surgeries, including my shoulder one, which 1 year layer doc said I had zero healing from 1st surgery due to no blood flow for healing ( I told them I was in pain all along) Now, since April this year, I thought maybe I had now joined the ranks of gluten intolerance. it seems as though there isnt any real pattern to what I'm eating, it just seems to be food. I look about 8 months pregnant when I eat. My knuckles on my fingers hurt every morning. My joints hurt. I am headed to the Cleveland Clinic in November for 3 days of testing. I feel like a hypochondriac. I hate this. My solution is to now isolate. I really do look forward to hearing any advice or hearing that maybe, just maybe this is not just in my head. Kind Regards Rachel
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