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!

[Pixix in reply to random901]

Have you not tried Pregabalin or gabapentin? They were sometimes offered, if you are in England! I found them to be evil drugs, they make steroids look beautiful. I think they should be used in caution…& perhaps they are now! I tried both, & was so so ill I had to stop both. Perhaps they are no longer using them, this was about 16 years ago now. They aren’t a cure at all, sadly. If you are coping with your fibro, OK. Perhaps you are on other medication that doesn’t work with it? Have you ever asked your Dr for help with fibro? I already had some other medical issues by the time I got fibro, so it may not be something routinely used for fibro. Suggest you google, & if in trouble with your fibro, see your Dr. I assume you’re on the fibro forum, perhaps ask there & see if others take one or the other? Good luck, S x

[random901 in reply to Pixix]

Thanks, Pixix. GP distinctly unenthusiastic re my trying the meds you mention. And I'd also read about some nightmare experiences. Various fibro forums give good practical advice, and like this one, put me in touch with others' ideas and experiences. Some famous names with the condition inspire me, and I think there's less scepticism about it than 15 years' ago. Currently managing with painkillers on bad days, plus recommended exercises.

[Pixix in reply to random901]

That’s probably better for you, if you can manage without the meds, tbh, on the other hand, it’s sad, as these drugs obviously help many people, they are still being prescribed, I believe!! Interesting that your G P isn’t keen, perhaps you should ask him why!!!

[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.

[tangocharlie]

I too have noticed a great reluctance of any GP to actually examine my body. They just seem to have a crystal ball or x-ray eyes and reckon they know what's wrong within a minute of you walking in the room or more likely a phone call. That's how they missed diagnosing my spinal fractures. Backs are a very common cause of ill health, if the nhs invested in back diagnosis and GPs got clued up about backs instead of just prescribing painkillers (which they then get grumpy about giving out because you might get addicted to them) they'd save £ millions. Like you, I want to get to the root cause of my pains not just throw the cheapest drugs at it and hope it works. Pain clinics can be useful, I know of one case where they picked up PMR that had been missed by doctors.

[PMRpro Ambassador in reply to tangocharlie]

GPs have a woeful success rate at diagnosing PMR - it is claimed as many as 75% may be incorrect, either PMR that isn't or PMR that they miss. One consultant who ran a PMR fast track clinic reckoned half she saw weren't PMR at all - though I assume a lot were something rheumatological.

[Waverley63 in reply to PMRpro]

I agree with that people are getting diagnosed, I asked that question why are they so sure it’s fibromyalgia they said we’ve ruled out everything else.

[PMRpro Ambassador in reply to Waverley63]

Except half the time GPs at least are unable to tell the difference between fibro and a polymyalgic presentation of an inflammatory arthritis or PMR. And are so sure it isn't PMR they won't try pred at a high enough dose. Inflammatory markers don't HAVE to be raised for PMR but they are so terrified of using it.

[Missus835]

I do have PMR and fibro (maybe) as well. On my way to a Sports Med Specialist tomorrow, because GP thinks it's bursitis. I think it's a PMR flare, which she always fobs me off about. It's so difficult to differentiate what is causing what pain. I also have osteoporosis, which brings a whole other set of pains. LOL. I'm hoping the Sports Med guy will let me try transdermal pain patches instead of a cortisone injection. I need something that covers pain 24/7 and Tylenol 3 (with codeine) no longer works, but to take the edge off. I agree with PMRpro. I'm very skeptical about the fibro diagnoses.

[PMRpro Ambassador in reply to Missus835]

Well, since PMR can cause bursitis ...

[Missus835 in reply to PMRpro]

Yes. Fingers crossed for bursitis and not AFF.