Does anyone have both Polymyalgia and Fibromyalgia?

[Pr0jection]

If so, how were you diagnosed, what medication are you on, and are you managing OK

Thank you

[suzy1959]

My Rheumy thinks I have both, mainly because of my insomnia, but I don't agree and anyway, I can't see any benefit in a Fibro diagnosis. Where does that take me?

I am treating the insomnia instead as that is a major issue for me.I have sleep apnoea too.

[Louisa1840 in reply to suzy1959]

I totally agree with you! The insomnia is more than likely caused by the pred. I take 2 Amytryptiline tabs to help me sleep and it works quite well. The rheumy who prescribed it says it should also help with pain.......? Even if you do have fibromylagia I don't think there is any treatment for that?

[suzy1959 in reply to Louisa1840]

Quite!

Amitriptyline worked for me for sleep for 8 years and then about 2 years ago, it stopped working. I think that must have been when I developed sleep apnoea.

It didn't help with pain at all.

[Bcol]

I don't have both but my OH has Fibro and doesn't really take anything for it. She does have Tramadol but takes it very rarely.

[Heron82]

I was told I may have both due to aching legs in the nigh, as a result was prescribed pregabalin which I took for over 22 months. It made no difference whatsoever. Fibromyalgia was ruled out.

Good luck

[PMRpro Ambassador in reply to Heron82]

Did they think to check blood flow to your legs when lying down?

[Blearyeyed]

I had GCA and Fibromyalgia. I still have Fibro. They both cause pain but from different pathways so it is important to get them both diagnosed and treated at the same time or you can end up in a bit of a vicious circle painwise. Inflammation flares from PMR trigger more Fibro nerve pain but equally a Fibro flare can cause more tension in the joints and trigger a PMR flare. Without treating the whole body and both conditions it becomes hard to manage or recover from either.

PMR needs treatment for inflammatory symptoms and pain and should hopefully be recovered from in a number of years .

Fibromyalgia does not have a cure but is a lifetime condition that can be managed to reduce daily pain and symptoms , it is classed as a Disability. It needs treatment for Nerve pain effecting the small fibre nerves which cause tender pain points in the muscle just beyond the joints , a nerve pain that can radiate through the body and make the joints feel worse.

PMR, on the whole , needs steroid treatment , sometimes it needs steroid sparers or a biologic therapy to improve the rate of recovery , often for those whom also have other health conditions as well.

Fibro needs either one, or a combination , of neurological approved medication , the avoidance of pain triggers , gentle regular exercise of both Mind and Body and often changes to a high nutrient diet with vitamin supplementation.

The autonomic symptoms , or things like sweating , temperature control , insomnia , dizziness , brain fog , digestion issues, Chronic Fatigue , headaches , trouble thinking , palpitations, circulation issues, mental health changes , skin sensitivity, low immunity , spasms and twitches, and feelings of Anxiety with no apparent cause which can happen at higher steroid doses , or at the lowest steroid doses when the Adrenals are still struggling to wake up with PMR or GCA , are suffered by people with Fibromyalgia all the time.

It is even harder to keep these symptoms managed if you have Fibro while you are being treated for PMR because these daily , and Fibro flare symptoms, are more severe than usual during steroid treatment.

It is rare for someone with Fibro to get relief from steroids . That's why , quite often if your pain is still intense even after starting steroid treatment for PMR , or increases in non PMR areas , it is important to be assessed for Fibromyalgia. Fibro is often triggered by having another pain illness like PMR as the nerves and nervous system finally react to the stress of dealing with flares and inflammation.

Fibromyalgia medications that can bring relief alongside Self Care are Garbepentin, Pregbalin, Duloxetine combined with Paracetamol. The most reliable treatment is a combination of low dose Pregbalin and Duloxetine as long as you can tolerate these, you start one drug at a time and take Paracetamol as required for non PMR inflammation. Complementary self care therapies are also part of the treatment .

Both conditions require acceptance and an adaption of your daily activity to reduce flares and still have a good , well paced , reduced stress , quality of life which is pain managed. Light exercise within your comfort zone , good diet and hydration and stress reduction are necessary to improve life with these conditions. With Fibro the aim is to be 85% pain free most of the time while having life quality , as with Fibro it is rare to be 100% pain free.

Hope that helps. Bee

[Griggser in reply to Blearyeyed]

I can relate with all you’ve said having been diagnosed with fibromyalgia over 10 years ago and PMR about 8 years ago. I’m taking 12mg of steroids currently and that seems to be controlling some of the PMR pain. I’m also taking Pregablin and Amitripyline for nerve damage following a bad case of shingles 2 years. Unfortunately the Pregablin and Amitripyline don’t seem to do anything for the fibromyalgia but do give some relief from the post herpetic neuralgia. Mornings are the worst for my hip and shoulder pain (PMR) but by the afternoon it’s a lot better. The nerve pain is at its worst around 5pm and drives me crazy for an hour or two. Fibromyalgia seems to pick random parts of the body to affect, feet and hands currently. I do take zapain occasionally, currently for a painful neck, and that helps with the general pain. I’m currently in Lanzarote and am feeling so much better, still have pain but just feel good. The warmth and longer daylight hours help and of course I’m getting a good dose of vitamin D.

[Blearyeyed in reply to Griggser]

Wish you'd taken me with you , it's just the right temperature there at the moment , not like cold , damp Wales! Have a lovely break , Bee

[Wallysma in reply to Blearyeyed]

What Bee said!!! Exactly. Thank you.

I was diagnosed with fibro in the 90's and tramadol kept me working. I am still on it 300 mg extended release. I tried lots of things over the years but it is the best. It also helps with some of the strange.symptoms on top of the pain. Not sure how to articulate. Do yes having the diagnosis and trying some meds is worth it.

[Pr0jection in reply to Blearyeyed]

Great info. Many thanks...

[DorsetLady PMRGCAuk volunteer]

Now you hzve written this, you’ll find related posts as well to look at…see either right of screen or scroll down page [below] current posts….

[Pixix]

Yes, I have. Sorry, but I’m not well atm, & my hands are very swollen this morning…somebody asked this question a few weeks ago & I responded in full…but I can’t find it. As DL says, if you search or look at related posts…but you may have done this before asking! There were quite a few replies, a lot of info…I’ve had fibro for 12-15 years, and PMR for 3 years.

[Songbird6]

I have Fibromyalgia and Polymyalgia, I used to take Amiltriptyline but that I stopped back in October, I am on Gabapentin, which I take at night, which does help to relax my muscles and eases nerve pain.