I'm newly diagnosed fibromyalgia (long-standing diagnosed autoimmune thyroid, ctd Sjogrens)
I am currently paying for private psychologist because I struggle with the symptoms and the fact I don't appear to get heard by local service medics.
At New Year, I finally got diagnosed with a staph infection I had visited GP 3 times, A/E once and practice nurse twice. I had bought a self test kit confirming the infection; yet, I was still passed from pillar to post. I even had one A/E nurse tell me Serena Williams has the right attitude with managing sjogrens (this unwarranted comment, was in reply to my answering the nurse assessment question, "any medical history" ...).
One of the worst symptoms I had during that time, and periodically since, was/is very heavy, like lead filled, lower legs.
Does anyone else suffer this horrible symptom? If so, what diagnosis, if any, were you given. More importantly, what helps alleviate the symptom?
I have found psychology to be a real help in discussing how I feel but I can't change other people; the medics I expect more from.
At times, I feel such despair. I know NHS is struggling however, I don't seem to be given any follow ups whereby I believe referrals would benefit. Thus, I go around and round the revolving door of GP where the main focus appears to be of gate-keeping.
Try as I might, I tell myself don't go to the GP they either don't want to help, don't understand the implications of autoimmune disease or they seriously believe I am no more than a hypochondriac. If I could buy antibiotics I would.
In actual truth and all honesty, I don't want to be ill. Nor have symptoms. Furthermore, I don't want to spend my retirement sitting in GP surgery, waiting rooms, spending my hard-earned pension on private care (psychologist, endocrinologist, ENT consultant, vitamins, minerals, yoga, research...).
I want to go on holiday, mix with friends and family without being in pain, discomfort, fatigued.....
If you have heavy lead legs and or have felt like me, I would love to hear your views. Sometimes, I just do not know where to turn.
My GP tells me all the staff at the practice say how well I look, how well I manage (all well and good), though, how do I tell him I'm not there for compliments, I just want to know what is wrong and how I can sort the symptom.
Thank you for reading. I'm sorry I can't be full of joy right now.
Wishing everyone wellness. Xx