Could I have something else apart from PMR,GCA and Fibromyalgia?

My symptoms began in May 2011 with small painful lumps under the skin on my forehead, which quickly spread to the rest of my head, then down my neck and into my body, I could actually feel what I thought a 'virus' spreading through my body. After several trips to the doctor I was finally referred to a rheumatologist who I saw in the September, I was diagnosed with all of the above and given steroids. My ESR levels were 130. Every time the steroids are reduced below 5 my ESR begins to rise. I managed to stop taking steroids for 3 weeks but my ESR went up to 58 so i'm back on 10mg, but I still feel really ill, some days I can't even lift a cup, I have no energy, no strength, the easiest task is an effort to perform. But I don't have the 'Hip Pain, Shoulder Pain' that everyone talks about, what I do have is an all over 'Burning' especially in the muscles at the tops of my arms and my legs, it seems to target the different muscle groups. But it's the overall 'feeling really ill' like having the worst flu ever invented that is getting to me, I can't even have a hot drink because I break into a sweat and my head feels as though it's on fire if I do. The lumps on my head went down with the higher doses of steroids, but I still have tender areas at the back of my head and one lump that comes up again if I drop the steroids below 5mg. Could anyone shed any light on what could be causing all this please.

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  • DazedAndConfused (what a perfect username) I feel that you should make an appointment to see your rheumatologist. I also have PMR, GCA and Fibro and the symptoms you are having remind me of my early days with Fibro - which is now reasonably well managed - with a few PMR symptoms thrown in for good measure. You don't say if you are on any other medications apart from steroids, but I think something needs to be added or perhaps just tweaked a bit.

    I don't now get the stiffness and pain around the shoulders and pelvic girdle which are often down to PMR, but I do have many sore and aching muscles and it can be difficult to say what's causing what, although I'm sure the upper arm and thigh pain is due to PMR.

    The general feeling of malaise could be down to any and all, including any meds you may be on. Perhaps in the short term seeing your GP might help and if you do that, print off or copy your question and take it with you. So much easier and quicker than struggling to describe it all and doctor gets a better overall idea of what's wrong.

    Best wishes - I hope you start feeling better soon.

  • Hi :) thanks for your reply, I'm seeing my rheumatologist next week, but I don't feel as though he's listening to me, HE tells ME what my symptoms are and I don't have the ones he's telling me I have! I am having more blood tests done this week to check my ESR and vitamin D levels in time for when I go back to the hospital. In the meantime I don't feel as though I have got very far with my doctors either, I try to stick to the same doctor but it's difficult at times because it's a busy practice. I had one doctor say she thought I had raised ESR levels (130 at the time) because I had an abscess the size of a pin head and that she wasn't a dentist. Another doctor asked ME what I thought I had, I had a terrible cough at the time and I was worried in case I might have TB, he asked me if there was a possibility I might have HIV! yet dismissed the TB! This was all before I was finally referred to the rheumatologist, It took three months of constantly going back and forth to the doctor before I got a referral I feel as though I'm wading through mud at times as far as progress is concerned, once the referral was made all my doctor kept saying was wait to see what the rheumatologist says,( he had as much interest as a eunuch in a brothel ) sorry letting a bit of frustration out there. I have found one doctor in the practice that seems to know what he's talking about, but it's difficult seeing him every time because they're busy, it's when I have been unable to see him that I hit a brick wall with the other doctors, I had one complain that I had more than three things wrong with me and I would have to make separate appointments for each problem :( I have Co-Codamol for a pre existing condition but I don't like taking anything long term and only take it when I've totally seized up, although I was eating them like sweets before I finally was seen at the hospital. I was so relieved at the hospital that someone was finally going to DO something I just broke down in tears, I was told that what I had would burn itself out in two years, it's been 28 months and i'm STILL burning. Sorry this has been long winded, feel soooo frustrated about things, just want it to go away and have my life back.

  • I can feel your frustration, DAC, and believe me, I have been there. You could try asking for a double appointment at your surgery? I had more than two years of dragging myself to the doctor without any positive results until I found a female doctor who listened to what I was saying rather than the male doctors writing me off as a neurotic middle-aged woman before they'd even seen me.

    You could apply the same remedy to your Rheumy, though. Take it in all written down and sit there till he reads it. I do take notes in for my Rheumy as, like you, I've more than one thing going on and I know he appreciates the time saved as I struggle to voice my problems (there's so much going on in my head at appointments that I stutter and stumble about in an attempt to get it all out).

    If your Rheumy told you that PMR would burn itself out in 2 years, then he has a bit of homework to do. It does happen; about 25% of patients diagnosed will have textbook responses and will be off steroids in the 2 years. The rest of us are either here or sitting at home and wondering what went wrong!

  • Thanks for the encouragement and suggestions :) I will write a list of my symptoms in bullet point to keep it simple for him lol, hopefully it will sink in :D

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