Rgaff
-
Posts
5 -
Joined
-
Last visited
Content Type
Profiles
Forums
Events
Resources
Physicians
Member Stories
Information Resources
Links
Posts posted by Rgaff
-
-
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 !!!
-
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 !
-
Thank you. Read all about it. I dont recognize any of the hypermobility issues.
-
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
Does Anyone here with POTS also have RSD/CRPS ?
in Dysautonomia Discussion
Posted
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