Poly & Fibromyalgias


I finally saw a rheumy privately yesterday. And very nice he was too. I have both poly and fibromyalgias. Now have a plan to cope and am very relieved after trying to battle on self-medicating and permanently anxious about the whole thing. Anyone else have these two together? And I also have an under active thyroid which I've known about for about 8 years.



14 Replies

  • So pleased you struck lucky with your rheumy.

    I don't have both (thank goodness, PMR on its own is enough!) but I think polkadotcom does.

    What's the rheumy's plan of action? I'm also intrigued to know what made him make that decision. I had a lot of overlaps and for a while couldn't decide which it might be. Pred got rid of almost everything very speedily. The leftovers that tended to recur have been ironed out by treating some myofascial pain syndrome stuff with manual mobilisation and Bowen therapy - so I have ruled out any thought of fibro.

    I wonder if the increase in the thyroid medication will help - when I first had PMR (undiagnosed) there was a lady at the same gym as me who had CFS/ME and she told me that her specialist treated his patients as if they were hypothyroid whether their bloods suggested it or not and it helped them a lot. There was some thought what I had was CFS/ME but no abnormal blood values for anything. I do wonder if they are all interlinked though.

  • Yes, I've got both PMR and Fibro and they are currently living happily together, both well managed. Fibro was my last dx and that was 4 years ago. I have other medical conditions to throw into the mix though and they tend to muddy the waters at times. If you've got any questions please do ask.

    I've also got OA and had a brilliant hip replacement earlier this year and am now on the list for a knee replacement. I can answer questions about that, too!

  • Hi

    Thanks for thoughts. Rheumy has increased my thyroxine by 25 to take it to 150. After preds yo yo ing bloods are showing little inflammation so a big push to get them down 0.5mg per 14 days. Blood tests once a month.

    Graduated aerobic exercise at health club with Pilates or yoga.which I was doing anyway but need to be more purposeful about attending frequently. Mindfulness and CBT if I want it which I don't. I'm an Anglican priest so praying etc happens anyway. Up to 6 tabs a day of Paracetamol or ibuprofen. Stomach is protected with Omeprazole.

    Tens machine been ordered for that. Hot and cold flannels on bits that are really bad ( like my lower legs).

    I have a far infra red sauna blanket thing and he thought that would be good. He said none of it will work all the time so ring the changes. I am creating a plan of some of this and some of that. Feel better today just for having a plan and some of the anxiety about what on earth was wrong.

  • A PPI isn't a guarantee that ibuprofen mixed with pred won't do damage so be careful with it. One lady who had been on omeprazole for a long time took 3 doses of ibuprofen, no pred, and it was enough to cause a gastric bleed. Just for info.

  • Hi Judie

    Glad you have a plan and hope it works

    I have a underactive thyroid diagnosed about 13 years ago at present GP has agreed a 25 mg increase in meds to see if that will help with fatigue, been a week now and I do appear to have more energy .

    For about 4 years I was told they suspected I also had CFS /ME but no GP was willing to say yes or no so I got nowhere thought I was just seen as a hypochondriac by GPs.

    Still now I don't know if I have it or not but I do know I have PMR diagnosed 24th August 15 and Thyroid disease.

    I personally found it helped having a diagnoses as I could understand why I felt so crap all the time and now I try to do what I can to help which is look after myself more .

    Sometimes it is hard to put yourself first but you really need to

    Hope you feel better as time goes on

    Take care

    Rose 54

  • Dear Rose

    Thanks for your encouragement. I have felt pretty ropey for 36 months on and off. There was a year before PMR diagnosis and then on 40mg of Pred I felt great but when I got to the lower levels it's been harder. My legs have been an awful problem and standing up for any length of time has been nasty.

    Now I have some strategies and we will see what happens next. I'm keeping a detailed diary to watch for patterns.

    Thanks again for sharing. J

  • It sucks I know but hope you have a good support network

    I like you have a job where I am supporting others all the time and then come home and deal with family problems. I realize now that was no help to me and am off sick 4 months now.But yes I feel more like myself I go to Tia Chi class once a week always ache to start with but by end of class aches have gone just need to rest the next day as sometimes feel aches not painful but enough to listen to them .

    It sound as if you know your body and soul well, just listen to what they are telling you ,


  • Hi Judigardener and PMR pals,

    Judi, thank you for asking the question about PMR and Fibromyalgia co-existing. I too, have PMR (diagnosed in June after a year of pain) and hypothyroidism. After a second visit with my rheumy this week, she suspects I may also have fibromyalgia due to the chronic pain, extreme fatigue, non-restorative sleep, tender spots and IBS symptoms. She did explain to me that these three issues often overlap and co-exist which makes it difficult to get a definitive diagnosis. But some of the meds we take cover several of these issues.

    I'm just starting to taper down and am on 25 mg prednisone. She also prescribed gabapentin for sleep and pain. But I'm only on the second night of that and the jury's out on whether it works for either. She's considering methotrexate, but I'm concerned about adding yet another med to my already complex pill organizer (for age 52). I'm feeling like a Guinea Pig for the pharma industry.

    My imaging tests also show OA and degenerative disk disease of the spine, plus two herniated disks in the lower back. My acute back pain is back this week. Not sure if it's the taper talking or if it's actually the core issue causing everything else. It's all very complex and can get overwhelming. Between my GP and rheumy, I pray we find more answers and at least relieve the sleep and pain issues so I can begin to leave the house and attend physical therapy.

    I just wanted you to know you're not alone in this. Please let us know how you do on your plan. It's posts like yours and all the great replies that are helping me get through this too.

    You're in my prayers!

    KittG, Gig Harbor, WA, USA

  • All those things you describe can be part of PMR - I had many tender spots that matched fibro, non-restorative sleep and fatigue are recognised parts of PMR and I had that too. I also had gut problems, nothing as bad as calling it IBS then but having identified an allergy to something in the structure of highly commercialised hard wheat which causes a weeping rash similar to dermatitis herpetiformis (symptom of coeliac disease) and removing wheat from my diet (not gluten, just that particular form of wheat) I now find that when I eat wheat I DO have symptoms that could be IBS. Another good reason NOT to eat wheat!

    I definitely don't have fibro, all has been sorted with pred, but the other things you have described have now been settled pretty well by treatment for myofascial pain syndrome (MPS) which included steroid and muscle relaxant injections to relax spasmed back muscles, manual mobilisation of the typical trigger spots (in pairs on either side of the spine in shoulders, rib level and in lower back) and sessions of Bowen therapy (works for me, may not for you but worth a trial). MPS is often found alongside PMR and will respond fairly well to higher doses of pred (the typical trigger spots have been found to be concentrations of inflammatory cytokines, the same substances that cause the recurring daily pain and stiffness of PMR) but then returns as the dose is reduced. Local more targeted treatment with injections works much better and for longer.

    I had been told before by an orthopaedic specialist that it was all wear and tear in the spine and I'd have to learn to live with it. At the time, not yet 60, I couldn't stand for more than 10 mins without pain, walking for more than 15 mins was even worse, the pain made me feel physically sick. I eventually ended up in hospital unable to move at all and dx'd as sacroiliacitis but the first-line approach led to a massive drug reaction so I was sent to the pain specialist for the slower and steady approach for a longer term solution. She and the physio were horrified at the orthopod's opinion - it was blatantly obvious that my entire back muscles were in spasm and as hard as boards and causing a lot of the pain. It turned out that was causing ALL of the pain. They did a lot, removal of a wisdom tooth that was affecting my bite and putting stress on my back muscles did the rest. I still occasionally have back pain - but a Bowen session or 2 usually sorts it.

  • Hi Judigardner, I also have bothe algia's which is not abundle of fun! I wish you well and hope you can get a regime that gives you some relief.

  • Thanks for these thoughts. I think the fact that I do respond with a decreased level of pain with common meds like Paracetamol and Ibuprofen with some of the pain would suggest that that bit is not Poly. I do have Poly because of the initial diagnosis 2 years ago and the high inflammatory markers, but with the markers well down now then something else is afoot, and the fibro would seem to be a likely culprit. The rheumy had a relative with fibro so he was not dismissing it as some Dr's do. (the if-in-doubt lets call it fibro and send her away brigade!!) I have real problems with my lower legs-- so much so that I could cry at times.

    Increasing the tyrosine by a little does seem to have had a positive effect.

    I've been to our super duper health club (premier one 2 mikes away -- been a member for years) and they are going to sort me out some very gentle aqua therapy too.

    My TENS machine has arrived and is being charged up. I have got my far infra-red blanket out of hibernation and so I am about to plan the regime!

    (But completely off this -- I saw Cumberbatch as Hamlet last night on a live streaming and if you can get to see it -- it's terrific).

    Hope you all have a comfortable weekend. J.

  • In the absence of any inclination on my part to look and see if I've said this before to you: if you have things going on that it is possible to confuse with/attribute to PMR or fibro, I really would encourage you to try 3 sessions of Bowen therapy. You would be surprised what it can improve in the way of pain.

    If I've already said it to you - sorry to bang on about it, but I still think you should try it ;-)

  • Not sure. Had pain since 1995 which was diagnosed as fibromyalgia in 2012. Pain changed in 2013. I have just been put on a course of steroids and the pain/ stiffness went within 24 hrs. Have had overactive thyroid in the past

  • Thanks for all these ideas. Increasing the thyroxine a tad has seemed to help. The TENS machine arrived yesterday and I had one session on it last night. I am going to take a far infrared sauna later. I think I will do these things for a bit and then maybe find a Bowen therapist later. The Rheumy said that you have to mix things up a bit. Have a restful w/e. J

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