Hi, this is my first post so hope you all bear with me!
To go back to the beginning, in late 2021 I was eventually given a diagnosis of “it’s probably polymyalgia.” This was after my gp getting in touch with a rheumatologist to get some advice as my blood results all came back normal. My symptoms were typical of pmr and having spoken to my two sisters who were diagnosed with pmr ( eleven and eight years ago) they were pretty sure that I also had it. My gp wasn’t convinced to start with but eventually started me on 15mg of prednisone and within a couple of days almost all pain and stiffness had disappeared.
Fast forward to April 2023 (I’m on 4 mg by now) and I was asked my gp practice to come in for an assessment which I duly did but with a different gp this time. I was given a quick examination to test for muscle movement and was promptly told it was more likely Fibromyalgia I was suffering from but was told to stay on the 4mg of prednisone until I could get an appointment with a rheumatologist. After waiting 6 months I eventually saw a rheumatologist who asked me some questions and gave me a quick examination to be told it was more than likely to be fibro than pmr and requested that I gradually tapered off the steroids over the next few months as they don’t help with fibromyalgia. Fast forward to the middle of February this year and I am off steroids. I did notice when I got down to 2 mgs all my symptoms started re appearing and now that I have been off them completely for about 5 weeks now I am in total agony. I went to get my bloods checked a couple of weeks ago and went back to the gp who I saw initially back in 2021 to check the results. As I suspected they all came back normal (as I now know can happen in about 20% of people who can still have pmr). My gp gave me a very quick examination for muscle movement ( which I have to say was very painful at the time). Due to the fact my bloods were normal and the fact I was diagnosed with fibro from the rheumatologist he insisted on getting in touch with them to yet again get their opinion. Needless to say the reply didn’t go in my favour and I was refused steroids. What he did do was offer me amatriptalyne or tramadol which helps with fibromyalgia pain apparently but I told him in no uncertain terms I would not be taking them as I know the side effects of both and they can become addictive.
I cannot believe, given the amount of pain I am in (he knew this as he commented when he saw me struggling to walk into his surgery) that I came out of there feeling worse than when I went in.
I have another appointment to see him in 10 days and my husband is coming with me this time so shall wait and see what the outcome will be.
Sorry for the long winded post but felt it necessary in order to get the full picture.
ps I have since discovered that you can have pmr and fibro at the same time. Does anyone have any experience of this?
Thanks for reading my post.
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