Fibro with Polimaligia

hi the docs have now said i have polymalger (inclination in the muscles) as well as Fibro. they have decided this as i have large quantities of inflammation in the blood (17-19) and I had some relief when i took steroids. however i had a bad reaction to them where they had caused weakness in my legs, breathlessness as well. now i am off the and back on pregablin but still in a lot of pain and finding it difficult to twist round. besides this my thyroid is packing up and i am going through the change of life so i am on hrts. what else can i do for the pain

15 Replies

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  • Self massage is a good idea with a good moisture cream

  • I was diagnosed with PMR last July , started on 15 mg steroids . The relief of pain was like a miracle , went from unable to get out of bed mornings to jumping out of bed Never saw rheumatologist until November , only to be told I had Fibromyalgia and not PMR. Now on the countdown to get off the steriods.. I was happy to know i dont have the PMR but not happy that I have been putting steroids in my system all this time for nothing.. This Fibro pain is just awful...............Im on the pregabalin and amytriniline for pain.. plus a slow release dihydrocodeine 2 x day for arthritis ( spine )

  • the steroids where great but caused me to be breathless

  • Could you ask your GP to help with your pain levels....I am sure there will be some med that will help give you at least some relief.....Gentle Hug xx

  • thanks all i wish i could be able to massage myself but can't reach it's mainly neck, sides and back. nothing seems to ease this pain i am also on coden and paracetamol but that does nothing. all i want to do is stop in bed but even that is painful. the other problem is i can't take ibroprofin as i have an reaction to it. any way i will let him know when i see him. the headaches are bad. i know steroids where great for the pain but not good for me in other ways lol

  • There are many tricks you can use to self massage. Balls in socks and lean against a door/back of sofa/bed/floor rolling your body over the balls where your pain is. A ball held in your hand and rolled over your shoulder or knotted into the center of a stocking so that you can pull from each end.

    If I remember there are videos either on youtube or health sites.

    Good luck :-)

  • good idea with the stockings hopefully my dog won't see them as her toys as then they won't last a mintue lol

  • Hi Hun I have suffered the same for years, 2 very good doctors diagnosed me with polimyalgia rheumatica as the inflammation in my blood tests were sky high. But the rheumatologist said no way you are too young (I was 36 at the time) so I was never put on anything for that, just pain killers & Endep & Valium for the combination of sky high pain everywhere & shocking headaches & anxiety. 8 years later I still have the horrific shoulder & neck pain when it flares there are lumps (knots?) between my neck & shoulders & the headaches got so bad they became migraines which only a sumatriptan will relieve, if not a migraine the pain will cause a severe tension headache, all easily triggered by something as simple as sitting in the wrong head forward position while reading or on Internet on phone or iPad too long. She also said I had multiple polyarthralgias & multiple joint arthritis. Going to see her again in a few months with a worsening of everything & many new symptoms. I highly recommend you put wheat heat packs on your neck & shoulders, & also run in as best you can a pain relief cream (sometimes I use a no heat 1 as I have to rub right into back of scalp as the pain is awful there too. You can get special heat pads that fit the neck & shoulders. Sometimes a wet face washer over the eyes & forehead & total quiet helps with either a cold pack or the heat pack on neck. These have been the only way I have been able to get any relief over the years as even a combination of codeine & endone won't take the edge off. Hope this helps 💜

  • * rub in the cream not run in sigh lol, so foggy today, I also have a plush battery operated massager that goes around the neck, it helps if used before the headache hits, also a heating pad or wheat pack for where you can't reach on your back. I spray my heat packs with lavender (essential lavender oil diluted in a small spray bottle of water) sometimes it will help calm the tension. Also getting the shower head onto these not easy to reach places helps. 💗

  • thank you i already do all that but the pain is is unbearable at times

  • Endep 10 or 5 mg is good for pain and headaches/migrains. Helps with sleep as well. Takes 4-6 weeks for you to adjust to taking it. Ive also heard Lexapro is used for pain as well.

  • Hi Gemmy

    I really am so genuinely sorry to read this my friend and I tend to use a TENS Machine. This can be used to help self massage as well. I want to sincerely wish you all the best of luck, and please take care of yourself.

    All my hopes and dreams for you

    Ken

  • thank you. the tense machine dies not help me unfortunately.

  • I am so gneuinely sorry to read that my friend and I want to sincerely wish you all the best of luck with finding some answers to this. Please take care of yourself.

    All my hopes and dreams for you

    Ken

  • Hi I am new here, have been really sore and ill for a couple of months, started with pain in shoulders, then piercing headache. Had blood test a month ago, they came back clear.

    For the past month the pain has spread right around my neck, With the pain going down my arms from my shoulder joint. I could not even touch my arms as they were so sore. Trying to get comfy in bed was a NO NO, as my hips were now joining in. I have had Fibro since the 80s. Got diagnosed with that after going to the doctor with same pain for years. Had all sorts of blood tests always came back clear, then one came back showing antibodies or something in my blood. So I was taken seriously after that. And was referred to Rheumatologist. Who diagnosed Fibro.

    I have had pain in my shoulders before, also my hands & arms, But this was different. WORSE. Even the meds I take for the Fibro does not touch this pain. So I made an appointment this morning, to see if there was anything they could do to ease this, as I need to sleep.

    Different doctor from last time. But she at least took the time to try things with me. Asking me to stand up without using my hands or stick to get up. I could not do that. My hips would not allow me too. She felt all round my neck into my shoulder blades and it Hurt...

    Then she said I am pretty sure you have Polimyalgia. So I want to run the bloods again. IF I get a result I shall call you. But either way, I want to see you a week today. As I may start you on steroids anyway, just to see if they help, as they should if you have this condition.

    I have had steroids periodically over the years as I have chronic Asthma. So am pretty used to how they can behave. But I found this sight after doing a search for this condition, & just wonder how you all got diagnosed and how quickly you felt relief. I just want to get some sleep. I am 68yrs of age.

    Thank you

    Kate

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