This will be long but I’ll try to be brief.
Was diagnosed with endometriosis in 2004, age 22. A few years later I was put on a drug that put me into temporary menopause for two years. Since that point, my health has gone down the toilet.
Started with loss of libido and terrible fatigue. Shortly after started with joint and muscle pain. Diagnosed with ME, ended up having to stop work a couple of years later. Been on high doses of opiates for the endo ever since.
Since my twins were born 18 months ago, my health has worsened significantly. Constant upper back pain with altered sensation across my back. Joint pain and weakness. Pain all over really. GP said it’s fibromyalgia. Rheumatologist won’t see me since I’ve been diagnosed with fibro already by the GP.
Six months ago I had a weird burning sensation by my knee. Over time it’s spread to both legs and to my feet. It comes and goes. A couple of months ago, my right foot became incredibly painful on and off, especially in the mornings. Right now the pain is so bad I’m in tears. It feels like all the bones in my foot are shattered but there’s no swelling or bruising.
Have had bloods taken many times for the regular things - Thyroid, ferritin etc etc. All come back normal. Have been fairly convinced for years that it’s my thyroid and I know it’s hard to diagnose but it doesn’t seem to be that (Tsh levels are fine but sometimes my FT4 levels are at the bottom of normal range). There are lots more symptoms but would be here all night (disproportionate weight gain, hair thinning, lack of concentration, forgetfulness etc etc).
GP is uninterested - anything I go in with is attributed to my existing diagnoses but this pain feels totally different. The same pain in my foot is now starting in my elbow / hands. I can’t just sit here and let my body disintegrate any more, it’s been 10 years since this started and I’m scared of how things will be in a year or two.
I don’t know what to investigate, where to go, what to ask for. Sometimes I honestly just want to die - I am not depressed or suicidal but it feels impossible to live like this. I’m already at the best practice by far in my area and the GP is well meaning but he doesn’t know what to do either.
If anyone recognises any of this, please let me know.