15 yrs of PMR , now it’s fibromyalgia

[Avadip12]

After many years of up and down with PMR and steroids at 20 mg down to 3 mg , and up and down on them due to flair ups . Last year when I have felt the dreaded continued fatigue and soreness into both my hips I had tests on my adrenal glands , all neg.

so when I saw my rheumatologist after over a year ,she has deemed that this is definitely fibromyalgia and I must ween myself off steroids . I have attempted this so many times 8 ? . And have a flair up ? without positive blood tests when I reach 3 mgs .

I have spoken before on here about my reluctance to except that I have to continue the rest off my life feeling this dreadful fatigue and cloudy head .

[piglette]

Do painkillers help? If not it is highly unlikely to be fibromyalgia. Steroids do not work on fibromyalgia either.

[Avadip12 in reply to piglette]

Thank you , no paracetamol has no effect .

[piglette in reply to Avadip12]

Mention it to your doctor perhaps. Perhaps she might realise she could be wrong about the fibro.

[PMRpro Ambassador]

You can have both of course. And what happens to the ESR and CRP markers in a flare?

But if steroids improve the pain and symptoms it AIN'T fibro, it isn't inflammatory.

[Longtimer]

I was told its possible I have it to. Had scan after 11 years, showed no inflammation, so the fatigue and other symptoms were put down to possible fibromyalgia. I am more convinced it adrenals and maybe something else going on. Fatigue balance dizziness weakness are my main symptoms, a battle whatever is going on!

[Avadip12 in reply to Longtimer]

Yes exactly how I get , I was also convinced it was adrenal fatigue, but synatchen test proved it wasn’t. Yes it’s just battle on . Waiting for Monday to see effects of 15 mgs then will discuss with Dr . I have an anima dr call back booked for 26 th

[Longtimer in reply to Avadip12]

Had Synatchen test 3 weeks ago it was just under 300....Such a puzzle all round. I remember going on 15 mg pred when first diagnosed with PMR....husband said when we were doing lots of walking I was like a car with a new engine.....oh I would love to now be that engine!

[SnazzyD]

It isn’t necessarily one or the other and I don’t know why some doctors seem to think it has to be that to the exclusion of all else, especially if they spy a chance to stop steroids. I had both GCA and long standing Fibro. Fibro sometimes came on during Pred withdrawal or if I had more than 2 nights of poor sleep. Low adrenal function (even with ok tests) felt similar with the brain fog, fatigue and nothing in the tank. Low adrenals however, gave me vague aches and pains and not the Fibro focus points which was my dual go to for diagnosis. Any specific large muscle pains were due to an issue that needed a therapist of some sort like a physio or Bowen therapy, but I didn’t have PMR. Sometimes, I had no idea what was going on. Fibro responded to Paracetamol and steroids made not a scrap of difference.

[Avadip12 in reply to SnazzyD]

Yes it’s a mind field trying to work out what’s going on with your body. I believe the Dr has also run out of ideas and is reluctant to suggest continuing steroids. I feel he sees it as a failure of his practices

[Pixix]

I have both…fibro first for past 12-14 years, then PMR joined in nearly 4 years ago. Fatigue & cloudy head are symptoms of fibro, too! I suffered with them long before PMR arrived!

[Avadip12 in reply to Pixix]

Hoping you find relief from your symptoms

[Pixix in reply to Avadip12]

You, too. There are medications you can get to help fibromyalgia. Sadly, I could not take them (I have other medical issues). I’m down to 1mg steroids now, & hoping to be zero soon.