Fibromyalgia?

[moskin]

Hello.

I have had PMR for 4 yrs.

Reducing prednisone ,now on 3 Mgms,this is what Rhematologist wants me to do,my crp and viscosity have been normal ,and have been for a long time.

He has put me on methotrexate also,but my condition is worse,my mobility is dreadful,all muscles painful.

When I looked at my symptoms they all look possibly as if I have Fibromyalgia my GP agrees ,and has started me on pregabalin,so we shall see.

Has anyone similar symptoms and history.

Is there a forum for Fibromyalgia.

Thanks for your thoughts,in anticipation

[DorsetLady PMRGCAuk volunteer]

Hi,

Can't give any advice, but yes there is a forum - as its HU as well just keep your name and follow/join it -

healthunlocked.com/fibromya...

[moskin in reply to DorsetLady]

Thanks

[SheffieldJane]

I was told by my first Rheumatologist that I had Fibromyalgia, it has never been mentioned again by my subsequent Rheumatologist or anyone else. I got the feeling that it was a place where any symptom that didn't quite fit got swept. I have learned to be clear and brief about symptoms now otherwise I'd be dangling with diagnosis like a Christmas tree.

[PMRpro Ambassador]

On the other hand - have they tried a bit more pred? You can have symptoms without the blood tests being raised. That differentiates between PMR and fibromyalgia where there are some symptoms that cross over and confuse the issue.

Methotrexate isn't the magic bullet some rheumies would have you believe. It is quite possible that all the methotrexate is doing is providinf a smoke screen - there is little evidence that it really helps reduce the pred dose in many patients.

[moskin in reply to PMRpro]

Hello PMR pro,thanks.

Originally on 60 mgms when GCA suspected,but eventually 20,been up and down since then ,mostly with neg blood tests.

Rheumatologist wants me off pred,I stopped meth on my own,but he has persuaded me to continue,but on half dose,he also tried something else first

,forgotten what its called,but I felt depressed on that.

This brain fog!!!

My mobility is dreadful,muscle pain,fatigue,sleep problems etc,all points to Fibromyalgia .

Will see how Pregabalin helps but only on small dose.

Thanks for advice

[PMRpro Ambassador in reply to moskin]

"My mobility is dreadful,muscle pain,fatigue,sleep problems etc,all points to Fibromyalgia"

Who says that? They are all equally indicative of PMR that isn't being well managed. Bet 90% of people on the forums would agree.

Why does he want you off pred? If you have PMR you need pred, nothing else works that is available on the NHS. And you need enough - being on too low a dose is pointless because it doesn't do anything.

[Hindags in reply to PMRpro]

I thought that tocilizumab has just been approved in the UK for GCA (as it has in the USA) . If moskin has been diagnosed with GCA, could that give her access to the TZMB? (have to find some abbreviation for that).

[PMRpro Ambassador in reply to Hindags]

GCA possibly - but not for PMR.

[moskin in reply to PMRpro]

Thanks,

It's all very confusing.I have widespread muscle pain,fatigue,sleep problems,headache,which have always had,that's ho w they found out I had Pituatry adenoma following scan,feeling low,and the increase in pain when areas of body touched.

Will see how pregabalin works.

My synacthen test proved adrenals working,level was454,so just above level of 440.

[Nap1]

Have you thought of steroid myopathy. I have severe muscle weakness and fatigue. Been on steroids 3/12 years forGCA. HAVE ENZYMES CHECKED before assuming Fibromyalgia. I'm hoping as I lower the steroids, muscles will come back. If not I will look further.

[Stroppymoo]

Can have a cross over with both pmr and fibro, I believe. Steroids not all bad. If they help then good.