Hi, before I start I'll just make clear I'm not looking for a diagnosis - just asking for some clarity!
I have a long-awaited rheumatologist's appt in a couple of weeks. I've been waiting since Sept 2019, almost a year, and now it's a stupid telephone appt, thanks to Covid. And I'm not good on phones - they make me anxious!
When the appt was made back last year I was suffering from persistent facial rashes plus increasing muscle pain and breathing difficulties. I was very tired and sore, full stop. This year I have been spared the rashes, although the facial itching (round my eyes) still persists. However, the muscular pains are as bad as ever.
I have them predominantly in my back, mid to upper, with a 'tender point' in my sacroiliac area, which is VERY old. I used to have problems there in my 20's and I'm in my 60's now. How this translates in real life is I feel as if my skeleton can't hold me up. If I stand for any length of time, particularly bending my head, like for washing up or cooking, it becomes unmanageably painful.
I also find exercise difficult. I persist with it because I need to, and I used to love to walk - walked miles all my life - but it has become hugely exhausting. I now get very little pleasure out it, often none, and only do it for the sake of my health and mental well-being.
I get pain in my hips sometimes, and my thighs, have tendonitis in both ankles, and rheumatic pain (so I was informed) in my RH toes. This doesn't help walking any.
In 2019 I suspected all this might have been dermatomyositis, and recently I wondered if it might be the even rarer Glycogen Storage Disorder, but I felt I didn't quite fit the latter and went to look at fibromyalgia (I'd dismissed it last year because of the rashes) and on looking a the NHS site's symptom list discovered I have them all, even rarer ones like Restless Leg Syndrome.
I have bad sleep disorders that really impact on my life and struggle constantly with anxiety and depression. I feel like I'm stuck in a vicious cycle because I try to get fit to get more out of life, but feel so sore and tired I can barely function so feel the whole thing is pointless, which makes me (more) depressed.
My question is how should I approach this appt with the rheumatologist? What do I tell him? I have so many symptoms, from itching through to sleep problems as well as the muscular pain, and breathing issues (I feel my back pain influences these - I have greater difficulty climbing uphill and being able to breathe the sorer my back is) I can't possibly tell him all that. Do I suggest to him I think I might have fibromyalgia? Does it sound as if I might? Or should I stick to a handful of symptoms and let him decide? I do find it very frustrating, trying to get doctors to take the fact that I have a LOT of symptoms seriously. They want me to have just one thing wrong with me, but I don't. I've been trying to get docs to look at the bigger picture since my fifties, without success.
Just as a little more background info (like I need to give you more, sorry!) I have had persistently high ferritin (a sign of inflammation) for over a year and I have subclinical hypothyroidism. No doctor ever suggests treating that though, despite it being very high last Xmas. I also had elevated LDH, I think it's called, a sign of "cell death" - very cheering.
I'd be grateful for any insights on whether this looks like it could be fibromyalgia, and what I should tell the consultant in my, doubtless only 15 minute, phone consultation. Many thanks!