I’m new, hello everyone
I will try to be as brief as possible. I was diagnosed with endometriosis in 2004. In 2007 I started a strong hormonal treatment that works on the pituitary gland - I stayed on it two years which is much longer than it’s licensed for. Around that drone I developed severe fatigue and was diagnosed with MEz I had constant pelvic pain and started getting other pain too (knee, hip and tailbone). I struggled to grip things especially wide shallow things like kids and would constantly drop things. In 2011 I had to stop working due to the fatigue and general pain.
i had twins last year and since then my pain has become far more extensive. Based on my other symptoms I suspected thyroid issue but tests were normal (I’m still concerned about the possibility of central hypothyroidism and am trying to get more tests). I started getting terrible pain and stiffness in my feet and other joints, especially when getting up at night - I can barely walk at all for some time. The worst pain is in my back and I have a large section across my back which has altered sensation (numbness / tingling in a band across my shoulder blades). I started getting the sensation I had a spider or bug on my foot but there’s nothing there. I saw my GP and he said I have pain because I have fibromyalgia but I’ve never been diagnosed with that. I thought he was probably right and asked to see a rheumatologist but they wrote back refusing to see me as the gp said I already had a fibro diagnosis.
A couple of weeks ago I got a terrible burning sensation in my right knee which spread into my calf and foot and also I cured in the other foot. The next day it was gone. Yesterday it came back with a vengeance and is now also in my right elbow. I wouldn’t necessarily call it pain, it’s somewhere between burning and pins and needles. I was worried about a blood clot but no other symptoms.
looking things up today since my GP is not really interested unless it’s an acute problem and came across altered sensation as an MS symptom. Is it possible that they’ve just gotten it wrong for a long time and I need to ask for tests for this? I don’t want to be that person self diagnosing on the internet but I don’t know what else to do since I’ve basically just been left to get on with it.
am I barking up the wrong tree yet again? Does this sound familiar to anyone? I just want to feel better and be a better mum to my boys - right now I can barely lift them.