PMR. Fibromyalgia

[moskin]

I have had PMR for 4 yrs,with 3 attempts to get off Prednisilone,getting down to 1 mgms ,but always being in great discomfort doing it,and having to go back to 10 mgms.

Most of the time my crp and viscosity have been normal,or slightly raised.

I have been seeing a consultant,but always had the feeling I was wasting his time,a 74 yr old with PMR!

Last Oct I had test to see if Adrenal s were working,the reading was 474 I believe,enough for them to function okay,at the time I was on 3 mgms.

By Dec I was off prednisilone, but going to USA to see son .I was unable to walk,lift arms etc.Consutant put me back on again for the month I was away,it gave me some quality of life,but I was to stop on my return as he wanted some scans to hand as these are swollen,and wanted to see if anything else going on.

All bloods are normal.

Since last June I have been not as well,fatigue which is extreme,pain in groins,hips,knees,elbows,terrible stiffness.

Saw Rheumatologist on Feb 1 st ,who says I no longer have PMR,but have Fibromyalgia and referring me to pain clinic.

Is he going on my symptoms,normal bloods,fatigue.

Hence my previous question about Rhematolgist in Devon,thinking further advice might be advisable.

I was working up until last June when everything got too much.

I am also covered in itchy rash for months now,but not sure if this can be connected.

I have a pituitary adenoma ,under care of endocrinologist no treatment at the moment.

Any advice will be welcome,as spending 20 hrs day on the bed ,not good I know .

Thanks

[venezia1]

Hello - sorry you are in so much pain. May I ask- did your Rheumy do the pressure point test to diagnose fibromyalgia? I was recently diagnosed with it (on top of RA and GCA) but what took me to the doc was what you might call skin pain - burning and tingling all over my skin, as well as the dreadful fatigue. For a long time I had thought it was an RA flare so am glad to have a diagnosis. Do say what meds your doc has put you on.

[moskin in reply to venezia1]

Hi,he wants me to take Duloxetin ,I think it’s called,it’s an antidepressant not sure I want to take it.

Yes all those pressure points are sore,painful

[Hidden in reply to moskin]

It is an antidepressant but is used to alter your brains perception of the signals it gets that there is pain. Fibro is basically setting your pain alarm off even though there is no inflammation etc. The use of drugs like amitriptyline and ssri very common and everyone needs to decide what they want to take. I would be tempted to discuss doing a week or two of pred at 10mg+ to see if pain goes. Pred doesn't work for fibro pain. The same rules apply to fibro and pmr.. .pacing good diet exercise. Unlike pnr exercise does not dAmage muscles but fatigue means it's a slow process building stamina up. I got a free community exercise pass 10 years ago and spent time in swimming pool during the time when some have warmer water so you can exercise by walking or aqua class.

I was referred to pain clinic and there psychologist and physio kept me going for 5 years. Good luck. Pain clinic has best pain drs.

[PMRpro Ambassador]

Yes - think you need a sensible rheumy or alternatively the Pain Clinic. Has no-one considered the rash may be a vasculitic rash? Or even rheumatoid vasculitis?

If your symptoms are better on pred - it isn't fibromyalgia.It isn't inflammatory so doesn't raise inflammatory markers either. I had fibro pain points but only about 8 or 9, not enough for fibro but when I tried pred - they all went away. Myofascial pain syndrome often occurs alongside PMR and it has several pain/trigger points that coincide with the so-called fibro ones - my physio helps with that.

[moskin in reply to PMRpro]

Thanks.

He put me on Prednisone for month whilst in U SA 20/15/10/5 then stop,I felt so much better but he still says you can get relief if it’s Fibromyalgia.

I am confused,and in the meantime am suffering,which was my reason for another referral.

I will try and speak to GP ne t week.

This consultant wanted me off prednisone at all costs,are the long term side effects not worth a quality of life?

Thanks for advice

[PMRpro Ambassador in reply to moskin]

medpagetoday.com/rheumatolo...

At PMR doses there appear to be insignificant long term effects. After all, immobility due to pain and stiffness becomes a high risk for weight gain leading to potential raised BS and cholesterol etc, osteoporosis, depression on top of depressive mood, and a host of other problems which are blamed on pred. Too many doctors will get the labels mixed - there are many overlaps between PMR and fibro, response to pred though is not one of them.

A rheumy did that to me, 2 weeks each 15/10/5 and stop. Miracle in 6 hours - back to hell in 6 hours after missing the first 5mg tablet. A GP believed me - the rheumy didn't. After well over 8 years on pred - I'm not falling apart yet. Much more of the state I had been in for 5 years previously would have tipped me over the edge or at least turned me into a little old lady in my early 60s. No I'm not...

[moskin]

Thank you,I will discuss with GP this week.I am much improved on 10 mgms .

If as you say it should have no effect on Fibromyalgia why did it with me last month ,although at a high dose

[PMRpro Ambassador in reply to moskin]

Because your doctor is probably wrong - it isn't fibro.

[Hidden]

Pred definitely doesn't help my fibro issues and the pain killers etc I use for fibro don't help pmr.

I knew the new pain I was experiencing pre diagnosis wasn't my old fibro because pain killers made no difference at all. Fortunately I think my Dr must have read something on pmr because within 5 mins she said could well be PMR and put me on steroids. Overnight there was big difference. Etc etc.