Through my struggles with Drs and tests, one neurologist did skin biopsy and I did test positive for small fiber neuropathy. however after additional testing, there still is no known cause. When I go into the support groups I find that alot of the people diagnosed with it suffer more with pain than they do all these other weird symptoms I do. I was always healthy until my late 30s and having typical hormone change symptoms. They say that many with SFN also have POTS which can cause many of the symptoms I see on the meno boards. And often it's women who suffer from POTS that are young teens, pregnant women and peri women. Some do improve after these hormonal transitions. I'm trying to learn and get as much support as possible from Drs etc but with limited energy, it's challenging and overwhelming. I.m glad I actually have a medical diagnosis for SFN in case I have to go on disability due to all these debilitating symptoms but it does nothing to really explain why I am experiencing what I am, the hormonal component and if I will get better after menopause. My GP has mentioned fibromyalgia since that is what they ultimately diagnose if you don't test positive for anything. Which ultimately like the SFN diagnosis is just a diagnosis of a group of symptoms not an actual disease. I honestly see people with MS diagnosis that have better quality of life than I do! :( Has anyone here came across any of this with Doctors? SFN, POTS is affiliated with dysautonimia which little is known about and no cure, only symptom management.
l too have POTS as well as other aliments im Uk based and basically ive been told just to get on with it heres your Iverline drink some salt water see you in 6 month. I’ve got more tips and advice via America sites than g.p / consultants etc. l joined this group as l thought l was going insane l had my overias out in 2012 if l knew back then what l know now l would never have had them out. wasnt told anything. 13 weeks ago l got so ill problems with hrt supplies here . Was put on numerous types etc ( now back on my old brand sheer luck my chemist found a six month supply its not working yet only started bk on it last week. ). sorry if im wittering on im still feeling very bad . l was goggling alsorts and found this group. As l was tremoring so much l cut all my teeth gums my whole body was the same plus none stop sweating oh way too much to list but the panic and anixtey l thought whats wrong with me. No answers off medical professionals etc . l actually thought l was dying honestly then l found this group and realised l wasn’t alone . l was so bad l wanted to end it all l told my g.p she just brushed it aside l had never felt like this. Sorry l am going on and lots of typos ( 13 weeks of no sleep is not good ). This past week managed to get a bit of sleep. straying off subject got a call from g.p last week apologising wholeheartedly no estergon progesterone at all in my system big mistake as obviously even after the change we still produce some but not when overias are removed. Also she had told me to cut out the salt ( like even l know that was wrong as its a big part of us poties). Again while giving me results she said so sorry no sodium at all in your body. Not sure if l made any sense at all here . l been using Micheal Hall panic and anixtey app on youtube its 22 mins long helped me so much and at night his 8 hour panic and anixtey sleep hypnosis one. If your anixous l found this as helped me nothing was working. Im a work in progress im so ill atm my g.p as cancelled all my urgent appointments at the hospital ( blood clot needing urgent attention but so ill they wont be able to do it hopefully we are crossing everything it can be done next week depending on if my hrt kicks in). Gosh sorry really am going on there. please put your foot down and get your g.p to run all blood checks l so hope this helps as honestly just knowing everything was all over as helped a little mind set wise. Wishing you all the best from another fellow poties. xxx This group is amazing saved my life. x
Feel free to p.m me. Im getting lost im following everyone. x