Fibromyalgia

[Waverley63]

I was diagnosed with PMR back in Nov 23, I am now on 8mg of Pred. For about 10 months now I have had a pain in my left thigh like someone pulling an elastic band and back pains. Recently I’ve had pain all over my body legs, arms feet and hands, I have now been diagnosed with chronic pain and fibromyalgia. I will now be sent to the pain management team to try and deal with my levels of pain. I am going to stay on 8mg at the moment and then start to taper again but slowly. At least I now have a diagnoses and it’s not in my head. It is a very isolating condition as people don’t see your pain. Thanks for the support from this forum.

[PMRpro Ambassador]

I am always very sceptical about fibro diagnoses in someone with PMR!!!

Have they looked for a cause - because my very similar pain is due to myofasical pain syndrome and greater trochanteric pain syndrome and both can be sorted by appropriate targeted treatments.

[Waverley63 in reply to PMRpro]

I think they diagnosed fibro as they did an MRI scan and x-rays and no inflammation markers but my symptoms are getting worse everyday. I’ll look into both symptoms to see if they could be a fit. Thanks it’s hard when you’r trying to taper.

[PMRpro Ambassador in reply to Waverley63]

Well none of those would show PMR!! And you don't HAVE to have inflammatory markers in a flare, they often lag well behind, The real test is to try a much higher dose of pred to see if that helps. Fibro does NOT respond to pred.

[Longtimer in reply to PMRpro]

Once again... "No inflammation, so must be Fibro!" just an easy way out of trying to say, its not PMR anymore but don't know what is causing your pain. I have been quite ill lately, the other day was able to go into a shop with OH , walking along it swept over me(whatever it is!) so quick, my legs almost buckled under me,

balance bad, felt very dizzy and weak. We had to go to a pharmacy on the way home, I spoke to the pharmacist, she suggested B12 shortage....especially when I told her I have for months had a very dry sore mouth and burning tongue...she urged me to get a blood test...I told her if its borderline or low my GP won't prescribe! Any suggestions...feel far worse than when it was PMR.....I am still on 5 mg.....

[CocoaChanel in reply to Longtimer]

OH ???

[DorsetLady PMRGCAuk volunteer in reply to CocoaChanel]

Other Half… 😊

[CocoaChanel in reply to DorsetLady]

Thanks - thought it was a medical condition 🥴. I do find the frequent use of initialisms here often stops me in my tracks.

[DorsetLady PMRGCAuk volunteer in reply to CocoaChanel]

Yes I guessed that…. we did have a list of medical abbreviations in the FAQs but it seems to have disappeared .. but it wouldn’t have had OH in it…😳

[PMRpro Ambassador in reply to Longtimer]

Try the B12 approach with oral formulations that are absorbed in the mouth - that avoids any gut absorption problem and 2000 mcg of those does the same as 1000 mcg injections.

"For increasing vitamin B12 levels, oral supplementation at 2,000 mcg per day is more effective than intramuscular supplementation at 1,000 mcg per day"

aafp.org/pubs/afp/issues/20...

All you have to lose is the cost of the pastilles. You might need a folate supplement too.

[Longtimer in reply to PMRpro]

Thank you for that, very interesting. So many odd symptoms, when I wake up, shaking all over, then if anyone comes near me, feel so nervous, it’s just not me!

How are you and Italy?

[PMRpro Ambassador in reply to Longtimer]

Good though the weather is a bit strange!!! For the end of January it feels more like mid-March!! A load of rain/snow last week after nearly 2 weeks of perfect winter weather and lots of sun - but very cold overnight, The rain made things a bit dodgy!! Now it doesn't know what it wants to do - foggy, cloudy, less sun.

I have visitors, cousins who were skiing last week and always stay with me for a few days before going home. Today they are visiting Oetzi the Iceman but I couldn't go with them as I had a halfhour zoom PMR Priorities meeting, one of 4 and I could have missed it but very glad I didn't as I suspect it achieved a lot!!

[Longtimer in reply to PMRpro]

Norfolk has been lucky compared with most over last couple of months, but extremely grey and depressing. Glad this long month is over today.

Thank you for what you do involving PMR, if anyone is going to find the answers it’s you!

Roll on summer 🌞

[Waverley63]

I did go back up to 15 but the pains where still there so I came back down to 8mg and will stay there for a while.

[Pixix]

just want to say that I have PMR & fibromyalgia…& it’s a ‘pain’ (literally & figuratively speaking)! But your hip could be trochanteric bursitis , perhaps (I’ve had it for 3 years now). People tell me how well I look (I also have hypermobility & it keeps your skin looking younger), & I often think that if they knew how much pain I’m in they may not say it!! But fibro does have drugs that can help you. There are pain points on the body & they should have checked yours (you know if you’d had it done, they poke you quite hard in many different places on your body!) I still think it’s the best test for fibromyalgia.

[Waverley63 in reply to Pixix]

I was checked by Neurology a few months ago but it’s amazing that no one seems to want to touch your body to do a pain check, they put me on amtripaline at night but I don’t think that’ll work when I go back to work again in a weeks time as it makes me slow.

[Pixix in reply to Waverley63]

I take amitryptylline, too. But it was making me drowsy in the mornings. I was taking it at bedtime. But then I started taking it as early as 7pm (which is my regular time now), & find it works as well, & I’m not drowsy first thing in the morning. I take it as a muscle relaxant for other medical issues I suffer from, & it works somewhat. A consultant told me to double the doses it would work better, but I couldn’t get up until about 10am, & was sluggish until lunchtime…so went back to original dose!

[random901 in reply to Pixix]

Hi Pixix! What drugs can help my FM? I've been told for 15 years there aren't any!

[Waverley63]

I started to take mine at 7 as well but I wake during the night so feel bad in the morning. I’ve just started so maybe it takes time to get used to it.