Deperate newly diagnosed pots sufferer: Good evening I... - STARS


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Deperate newly diagnosed pots sufferer


Good evening I am new to the group recently diagnosed with pots after a 2 year battle. I have overlapping conditions gastroparisis, migraine, terrible balance and fatigue . I used to run 5k park runs and regular 10k's that has all had to stop so when on the management they say exercise that isn't even happening. I am beside myself I feel on my own my life has changed so dramatically and even now doctors look at me as if i'm crazy even after two positive tilt table tests. Is there anybody else out there feeling and going through the same issues I'm desperate with so much more to say. I am sorry for the gabbled message

10 Replies

Hi Catrun10 yes yes yes is the answer. I have been diagnosed with all of the above and sadly the doctors and consultants aren't equipped with knowing how to behave like an empathetic individual when it comes to rare disorders. Please don't feel alone though. I did for such a long time and it's not s nice place to be. My life also took a drastic turn after my diagnosis of autonomic neuropathy with is basically what causes all of the above symptoms. It took them a long time to find this out. I also have EDS despite this I still have to fight against the doctors every time I see them. I now have a rare coordinator through a voluntary group calked Same But Different. It may be worth looking them up. They basically help people with rare disorders with the whole kit and kaboodle... they have done more for me in a few months than the NHS has in 10 years. They have kicked everything into action and I have much better management over my condition.

All I can do to cope in all honesty is take to good with the bad and when im feeling ok enjoy it and when im feeling bad listen to my body. It really was a case of getting use to a new normal and accepting that as hard as it was. Once I did that I was able to find joy in new things. Swapping out wanting to be a counsellor to wanting to help animals as it's more likely with my condition. Swapping going to the gym to sewing and painting (on a good day ofc) on a bad day just speaking to friends or being with family. Its whatever you can find. First and foremost though you aren't alone. There's people here including me who will help you through this x

ZebrainFoxarmour, thankyou so so much for your reply I'm sure, with what you are going through you know what a complete and utter relief it is to know that someone is relating to what is going on and most definately going through. I'm starting to disbelieve myself even tho I have been medically diagnosed, why won't the powers that be listen. I was finally diagnosed at uchl been on the management course with them and had the basic neurological tests (because of the balance) done which were all fine but I could barely put one foot in front of the other when asked to do so which the consultant observed. They are seeing me in 1 year and I am now back at cardiology in my home town in March. I will look up Same but different I really need someone to listen I feel so unwell. Thankyou once again from the bottom of my heart I actually feel so much relief right now, thankyou 😊

No need to thank me at all, we are all in this together. It really is a shame that loacal drs aren't more helpful but unfortunately its not uncommon. They do gaslight us but stay strong xx

Where do you find the group Same But Different? Thank you.

I am from Flintshire in North wales and thankfully one of my friends told me about them

I had been going round in circles for years so it was a breath of fresh air to have them and meet others in the same boat xx

Thank you. I'll give it a try.

Hello Jellychijazz, are you ok, because you responded to my inistiall message

I'm about the same as everyone else on this site. 😄😁 Never know when I'm going to black out. Very discouraging. Some kind of syncope. Been through many tests and Dr's still don't have a clue. 😣

I am sorry to hear this. I'm very new to this site but just by having one person understand how you are feeling makes it just that little bit more bearable. Keep pushing for answers. And certainly contact SamebutDifferent I know I will be doing so. Let us know how you get on. Best of Luck x

Thank you! You as well.

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