So I’ve had a lot of health issues for many years. Already had endometriosis and was then diagnosed with ME and fibromyalgia but it really doesn’t fit. I’ve gone down the route of paying for private blood tests on multiple occasions to try and figure it out, but aside from vitamin D deficiency there’s nothing clear cut. Thyroid levels at the high end of normal, vit B12 low end of normal, nothing my doctors will act on.
18 months ago I had a strange patch inside my right knee with a strange burning sensation - a bit like when the blood rushes back after sitting strangely on your leg. Over time it has spread very gradually to both legs, knees to toes and is literally constant now. I’m starting to get the same in my right hand. I have carpal tunnel that comes and goes in both arms. A 3-4” wide altered sensation strip across my upper back that has been there for two years but sometimes spreads higher and lower. I can’t grip anything really wide (like a big jar) or thin (like peeling the film off a packet).
Right now I’ve got a similar burning tingling sensation in the middle of my face, which is new.
This isn’t even mentioning the hair loss, weight gain, complete absence of sex drive, heart palpitations, spells of vertigo etc etc
My GP isn’t listening to me - saw her a month ago and she put me on antidepressants and told me to come back in six weeks. I am not depressed, just low because I feel so unwell. I only agreed because maybe if I do as they ask they’ll agree to try something else.
I had a load of blood tests done in August by the GP - aside from low vitamin D and folate (now supplementing both) nothing showed up. My calcium is right at the bottom of the range, MCH slightly above range, B12 low in range (254) and I know some people are symptomatic at that level but getting the GP to listen is another story.
What can I do? What can I ask for next? My doctor thinks that doing private blood tests is making me anxious - no, I’m anxious because I don’t know what’s wrong with me and no one seems to know or care to help me figure it out.
Does anyone have any ideas on what I should be asking the doctor for next? They did try to refer me to a rheumatologist but the refused to see me because the GP already diagnosed fibro - I just don’t believe that’s what this is as it doesn’t explain most of my symptoms, and I wouldn’t really describe what I’m experiencing as pain.