"Feeling dismissed"

After being referred to Rheumatology in August 2023 by Orthopaedic department because of my hand symptoms.

Was seen by Rheumatology in January 2024 where I was misdiagnosed with Fibromyalgia, a condition I don’t have as I have never had widespread pain or tender points, told to take amitriptyline and get a good night sleep and was shown the door!

Was referred to Rheumatology again and was seen by another consultant in March 2024.

Clinically suspect arthralgia was the diagnosis at this point as my mother has rheumatoid arthritis and my father has spondylitis, therefore a watch and wait to see if my symptoms would develop.

My symptoms did develop-

Joint swelling and pain. Stiffness especially in the morning. Especially in PIP + DIP joints. Swollen fingertips since January 2024 and loss of sensation in them. Joint swelling in hands, toes, knees and elbows.

Muscle pain and swelling.

Bruises on my body especially the legs and have no idea where they have come from.

Skin issues- including thickening, change in colour, skin tightening especially around joints in fingers and toes. erythema patches and changes to my nails.

Blood vessels- development of a rare condition of Erythromelalgia in my feet but especially my right hand but now has started in left hand and both hands are getting worse.

Other symptoms include-

Dry eyes, dry mouth, fatigue, mouth ulcers + dry lips, night sweats, weight loss. Depression, lack of energy + for life, I don’t feel like me anymore it get irritated easily, angry and I’m not a happy person anymore.

Clinical diagnosis at the time I have-

Clinically suspect arthralgia, Positive ANA speckled pattern 1:80, 

equivocal cn-1a antibodies which the consultant will not re test. As of March 2024 and have never been repeated. persistently low c4 complement with borderline low c3 complement. Occasionally Neutropenia with 3 time this year. 

After seeing a private rheumatologist their advice was that it was EM and Palindromic Rheumatism. Their suggestion was to start a trial of hydroxchloroquine. My GP agreed with this, but as it was a private recommendation they needed the approval of NHS Fife rheumatology department to write the prescription for this. My GP personally wrote to the consultant in NHS fife to do this as part of a shared care arrangement, but they never replied. 

Private rheumatologist also wrote to the consultant at NHS fife with their recommendation and advice, but that was dismissed too.

Been under Rheumatology care since March 2024 with referrals to dermatology department where I feel they have completely dismissed me and a MRI on my hands in September 2024 when my hands weren’t flaring.

I feel I have yet again been dismissed by Rheumatology Department and put back to my GP care to manage a rare condition of Erythromelalgia - where no investigation into seeing the cause of this condition where it has been linked to autoimmune condition.

Was supposed to have an upcoming 4-month follow-up appointment where I was hoping to discuss my symptoms getting worse and now affecting me at work, but don’t have that opportunity to do this as I was dismissed and discharged without knowing, only to find this out when I phoned the rheumatology department appointments line to make my appointment that I am no longer a patient in the rheumatology service.

So yet again, no one is listening, and What I am supposed to do now?