Just thought id reach out for some advice as to where to go from here. Im a 22 year old female and im a dancer. Il cover some background:
Had symptoms since i was 13 (now 22). Symptoms consist of: Extreme fatigue, Mouth ulcers, Joint pain and joint swelling, Raynaurds, Rashes on body, Change in skin pigmentation/rash on face (across bridge of nose and cheeks), Bowel and bladder issues, Gastro issues (stomach ache ect), Chronic migraines and headaches. All these symptoms also effect my cognitive well being.
I have been to the Rhume clinic at my local hospital around 6/7 times now. On the first instance i was told they were 80% sure it was Bechets and started me on cholchine straight away, which doesnt work for any of my symptoms. As time went on and they did more blood tests which were coming back as normal it was clear i would have trouble getting any answers. I had taken images of my swollen joints and ulcers ect so they could see what it was like when i was having a bad day however i always seemed to be questioned about the photo, as it wasnt clear my joints were badly swollen or red in colour ect on these pics.
I have now just come back from the hospital with the DR putting my joint pain down to "wear and tear" or "mechanical joint pain" as i have no inflammation markers. Which i think is beyond a joke as i deal with painful and swollen joints over 50% of my life! being told it is down to dancing when im currently now not dancing due to this issue i feel is stupid. Im only 22, and havent danced properly in the last two years. I wouldnt expect a 22 year old to have "bad joints" due to dancing at such a young age.
I questioned him about all my other symptoms and he admitted i do have the symptoms of many different auto - immune conditions however because my blood work doesnt show anything i cannot be diagnosed with a condition nor can they put me on any other medication. However in the same breath told me the main thing here is to manage my symptoms, which they arnt doing as my current medication doesnt touch me?!
I was left with a referral to a physio ( which i find pointless as iv seen many physios over my life who havent really helped me) and also a referral to a podiatrist as i have "flat feet".
As you can tell at this point i feel completely defeated and have no idea where to go next. I have had my life on hold for two years and i cannot go on with being tired and in pain every day watching my life go by. I dont know if i posted on here for a mere rant (lol) or for advice. But anyone's input would be greatly appreciated as i dont believe any of this is due to mechanical issues and feel my symptoms also say the same.
thankyou for reading,
Hugs. Lexx xx