Polymyalgia

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Polymyalgia

Postby DizzyLizzie » Thu Mar 13, 2014 6:29 pm

At long last I've been diagnosed, it is fibromyalgia, but apparently I have polymyalgia too, as well as arthritis in my neck,hip & spine. I've just been given a steriod injection & wondering if they help & how long it will take to work/last & does anyone know anything about polymyalgia? Many thanks


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Re: Polymyalgia

Postby reptigirl12 » Thu Mar 13, 2014 6:54 pm

Its not one ive herd of but i will surely google it so i know all about it, theres myofacialalgia that's when you get pain in your whole face from your jaw upwards, i hope you are not suffering too much and you'll find way's for you to cope with it. :-D
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Re: Polymyalgia

Postby hazely » Thu Mar 13, 2014 7:02 pm

Hi I don't know nothing about polymyalgia, but did have steroid a injection and was then in worse pain, it was agony for about a week. It then felt a lot better but after 3 months it was back to normal pain. I would say steriod injection can last anything up to a year my rheumi said but suppose this its like meds depends on the person and the pain they have. hth
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Re: Polymyalgia

Postby fibrogirl90 » Thu Mar 13, 2014 7:05 pm

Hi my sister had polymyalgia. It is similar to fibromyalgia but with polymyalgia there is severe inflamation and it can get serious. My sister woke up one day and could not even move her whole body. When i seen her in hospital i was so scared as they had her in a giant harness thing. She couldnt even brush her hair. They put her on steroids and she did improve but she had a lot of side effects from long term use of them. She improved after a year. Hope you feel better soon. Its terrible having both illnesses. You will find lots of information online about polymyalgia
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Re: Polymyalgia

Postby Minniemum » Thu Mar 13, 2014 7:07 pm

I know very little about polymyalgia, except that it has similar symptoms to FMS but unlike FMS polymyalgia can be confirmed through blood test. So the medical professionals can prove it's a 'real' medical condition, unlike FMS which, sad to say is still outside the 'proof' zone, making some medical people still think FMS is in our mind. --Why would we do that to ourselves???
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Re: Polymyalgia

Postby Revjan » Thu Mar 13, 2014 7:43 pm

Polymyalgia is a autoimmune disease. This means that your immune system is attacking your large muscle groups, causing pain and inflammation. It is confirmed by a blood test usually and needs to be treated with steroids, either by injection or taken orally, but usually a fairly small dose. In addition you will need good painkillers. Unfortunately there is no cure so you will have it for life, but it can be managed well. My father is a sufferer. Good luck x
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Re: Polymyalgia

Postby crazycat36 » Thu Mar 13, 2014 11:37 pm

My dad (i was adopted so not my blood dad) had polymyalgia but a mild form and was put on steroid tablets for summit like 10yrs then they reduced the dose to c if the pain was still there which it was so was put bk to his normal dose which for the life of me i cant remember what it was then every few yrs they tried again until it was reduced wi no pain so held at that dose for few yrs and gradually reduced and he was fine without steroids but occasionally he would hav to go on a 6month maintanence course of steroids my dad has since passed away in 2012 at the grand old age of 84yrs old and lived his life to the fullest without it affecting him to much although he did hav to cut down how much golf he played eg not playing 2 rounds in 1 day.

anyway hope this info is of use to u for the polymyalgia detail not 100% due to bad dose of fibro fog and not able to ask him anymore lol xx
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Re: Polymyalgia

Postby Rhubarb » Fri Mar 14, 2014 5:02 pm

My main diagnosis was PMR - Polymyalgia Rheumatica - a good many years ago and Fibro trotted along after it.

Currently there is no known cause and no cure. Corticosteroids relieve the symptoms (which can be horrendous) but do not cure it. It goes into remission in its own time and that time, and the symptoms, vary wildly from person to person. There is no definitive test of any kind for it; blood tests may show inflammation but that can mean anything from PMR to a common cold so it is a diagnosis of exclusion i.e. when all other diagnoses have been ruled out then a diagnosis of PMR may be made. You can also have PMR without having raised inflammation markers - sero-negative PMR.

The side effects from the steroids also vary considerably but the risk of leaving PMR untreated (quite apart from having severe inflammation raging round the body) is that the risk of contracting GCA - Giant Cell Arteritis - is much higher than if you were already on steroids. This condition is the more serious of the two as it can lead to irreversible blindness, but both can be extremely painful.

I have all this at my fingertips as I run our local PMR support group. I'm the only one there who has gone on to be diagnosed with Fibromyalgia, although I'm in contact with several others with the same two conditions. All we can say is that it's a shame the steroids don't work for Fibro (not that anything does much) and today I am about to throw my legs into the rubbish bin!
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Re: Polymyalgia

Postby DizzyLizzie » Sun Mar 16, 2014 4:10 am

Thanks to you all for the information you've given, it's been really helpful, I had tried to google it but there was so much to read, I couldn't concentrate on more then a couple of lines, then I'd forget what I'd just read. Your posts on here are a nice size to keep me focused. The steroid jab hasn't started to work yet, but tomorrow is another day :)
Thanks again guys x


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Re: Polymyalgia

Postby DizzyLizzie » Sun Mar 16, 2014 4:21 am

Hope your legs are better today Rhubarb xxx


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