Question
Posted , 9 users are following.
What are the differences between fibromyalgia and PMR ?
Thanks....
1 like, 51 replies
Posted , 9 users are following.
What are the differences between fibromyalgia and PMR ?
Thanks....
1 like, 51 replies
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faye______00403 judytal
Posted
nerve related and Poly is muscle related. That's the simple
explanation maybe someone can give you more info....
EileenH judytal
Posted
Fibromyalgia is now thought to be a neurological problem in the processing of pain signals by the brain:
"Researchers believe repeated nerve stimulation causes the brains of people with fibromyalgia to change. This change involves an abnormal increase in levels of certain chemicals in the brain that signal pain (neurotransmitters). In addition, the brain's pain receptors seem to develop a sort of memory of the pain and become more sensitive, meaning they can overreact to pain signals."
There is now evidence that there are "real" reasons for the pain in fibro - it has been put down to all sorts of things in the past, not least hysteria, but it now seems to be a mechanical problem in some ways.
PMR is almost certainly an autoimmune condition: something (or a series of somethings) upsets the immune system so that it no longer recognises your body as self and it turns on your own tissues and attacks them in the same way as it would an invading viral or bacterial infection. This damages the tissues and results in inflammation which, in turn, leads to swelling and pain. There are a whole load of autoimmune disorders, damaging various tissues and leading to varying symptoms and different names depending on what happens.
Since they don't know the mechanism that causes the symptoms in either case it makes it difficult to treat - all they can really do is find ways to manage the symptoms. In PMR pred reduces the inflammation and manages most of the symptoms until the underlying autoimmune disorder burns out and goes into remission. There are a few drugs that are claimed to help in fibromyalgia.
The similarity is in the symptoms - both cause muscle pain, fatigue and stiffness. Fibromyalgia is said to have pain in 18 specified trigger points and if you have pain in 11 (or something like that) it is fibro - but PMR can cause pain in some of those trigger points too.
The difference is in the response to a moderate dose of pred. In PMR a dose of 15-20mg of pred should achieve a 70% global improvement in symptoms within a few days. Pred rarely improves symptoms due to fibro.
And the real pain? It is possible to have both.
judytal EileenH
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judytal EileenH
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EileenH judytal
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Bloodshot eyes - people develop them when on pred. I never have. OTOH - my husband has them every so often - and he's NOT on pred.
linda17563 EileenH
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pelham29972 EileenH
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EileenH pelham29972
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When I reply there is a similar envelope with the word messages at the top right hand corner 0f this page which will signal there is an unanswered message for you, you should also get an email notification like any other post.
Nefret judytal
Posted
PMR is a deeper muscle pain while the Fibro is a touch sensitive pain - as if all the nerve endings in the skin are screaming at something which just brushes them or touches them and a heavier touch can be enough for me to shout/scream/yell.
Both pain conditions can be 'managed' and I am currently using this forum as a distraction technique. If I stop and think about it, I realise that I hurt all over - so I do something else as a distraction; it mostly works!
EileenH Nefret
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Flutterbie57 judytal
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linda17563 Flutterbie57
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EileenH Flutterbie57
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And yes Linda - when my PMR got so much worse 6 years ago I was stopped from driving for another reason (a consultant who didn't listen to me about a historical event that had been clarified) and for nearly 6 months I had no licence because the NHS made something of a mess of an EEG and reporting it as totally normal, taking months not weeks. That was when I realised just how much I had adapted my lifestyle because of the unrecognised and untreated PMR: if I could drive there I could go, if I couldn't I didn't. We moved house at the same time - and I got a kitchen that wasn't PMR-friendly. It was sheer unadulterated hell.
If I hadn't been left for nearly 6 years without any treatment would I have recovered faster? Would I be able to get off pred now?
Research isn't as far off as you think - there are very active groups in several countries and I am involved with one in the UK. A paper was publlished just a few months ago by another UK group comprising interviews with patients about how PMR affected their day to day life - and it has been an absolute revelation to the doctors who did the work. They are beginning to take us seriously - and things will get better as more younger people are diagnosed as having PMR not some other vague problem and as the retirement age rises. Until relatively recently it was perceived as only in ladies over 60 so we were retired and of no financial interest. It will be a different matter when our children have to work to 70.
linda17563 EileenH
Posted
....but how worrying that our grandchildren will be working till 70....why would anyone pay into a pension.....I had for nearly 40 years (ill health forced me to finish at 55) and I loved my job (RSi through typing suspected as well at first)...and will not get the amount next April that others will, who have`nt done the same.......shocking. If I had the energy, I would march on parliament which I think some going to do next year!! oooooh, once I get started......
EileenH linda17563
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It is only state pension that will be at 70 or whatever - company/service pension will be available earlier and it is up to them to think about in advance as we did. OH is still totally ignorant of how much he will get - the entire thing for the new pension rules is in such a mess they can't provide forecasts at the moment. He took early retirement on the grounds he'd done well above the 30 years in the UK you needed for full state pension and then they moved the goalposts! More by luck than judgement he does JUST have the 35 years under the new rules - but no add-on bits as he was in the NHS so he is almost certainly one of the people who will lose out through the changes. Nothing new there then! But he will get a smidgeon of Italian pension as well as a bit of German pension - but if you get any German pension at all you are not allowed to continue in employment and can only do what is called a "450 euro job". Fine if you get a full pension as they are very generous but not so fine if it is just a bit. Ah well - it's enough to take us for dinner
linda17563 EileenH
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EileenH linda17563
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Flutterbie57 linda17563
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.After 18 years of pain I had to stifle my emotions - I thought I had died and gone to heaven. As soon as I was dropped to 15mg, fibro pains, Poly headache, sweats and all those you mention returned. I had no idea how bad I had been so you can get used to pain. My favourite part - my head cleared - I could focus. Two weeks later my hand pains have not returned, but now have spasms. What dose are you down to now after 3 years ? What do you do for Fibro pains ?
Flutterbie57 EileenH
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linda17563 Flutterbie57
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EileenH Flutterbie57
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I would also suspect that the return of the pains etc was partly due to the 5mg drop in dose - far too big a step for someone with PMR and it would induce steroid withdrawal pain and symptoms which are often almost identical to the problem for which you are taking the pred.
EileenH linda17563
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linda17563 EileenH
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I have alwys had the suspicion though that it`s to do with thyroid as well....
Many patients in the past have been misdiagnosed, because of being in the "normal" range in this country, but would be prescribed meds for Thyroid in other countries....no deep TSH is tested here either....so may try to go down that road for testing....any suggested clinics most welcome if you know of any in the uk!.......I will never give up trying to make myself as well as possible.
Why wouldn`t you come back if you were ill to be with your family, it`s people`s ignorance that amazes me sometimes....
Flutterbie57 linda17563
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I am fairly new to Poly, and I am still on 15mg, so I have some different problems, but other than THE headache, I am not much worse at this point in time. How are you coping with both ?
Flutterbie57 EileenH
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EileenH linda17563
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My gynaecologist in Germany had a similar idea for using HRT - he said that it didn't really matter what the blood tests showed, what mattered was whether the receptors were working properly, you could have normal levels of any hormone but if there was a receptor problem you could have symptoms of deficiency. I had a lot of symptoms of thyroid problems but - like everything else - normal bloods. I felt so much better on HRT - and the PMR developed in all its glory about a year after I stopped the HRT. It would be so nice to know if there is a connection.
(For non-scientists: many drugs can't have an effect without "plugging in" to a sort of connection on the surface of the cell, a bit like the electric is there in the wires, your iron needs the electric to work, so you stick the plug into the electric socket and the iron heats up - the socket is like the receptor on the cell.)
linda17563 EileenH
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My sisters are both Hypothyroid, but can`t get my doctor to try me on the meds for it....not even the lowest dose....so may try for advice from TPAUK....(.a very intersting ladies story on there!).....
Like you say, it would be nice to know if there is a connection....
linda17563 Flutterbie57
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EileenH linda17563
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snapperblue linda17563
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If you think that your "not very pleasant" rheumatologist will respond defensively or dismissively to this, you might write a letter or email BEFORE your appointment, so he is not taken by surprise on the spot. If he is not willing to look this up, you should find another doctor!
EileenH linda17563
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EileenH Flutterbie57
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linda17563 snapperblue
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linda17563 snapperblue
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linda17563 EileenH
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Also Eileen could I ask you, I think I have read on here previously, that cramp in hands/feet can be helped with Magnesium...if this is so, what dosage is needed please...
EileenH linda17563
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Perhaps the fist was a Freudian slip! Where are you in the UK?
EileenH linda17563
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Here in mainland Europe magnesium is the first suggestion by GPs for cramp - my husband uses 1 per day soluble ones that are 200mg/tablet. They sell them in every supermarket here - I've bought them from chemists in the UK but I don't know what dose they do. I know Boots had them as ordinary tablets but that wasn't last week!
linda17563 EileenH
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EileenH linda17563
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Anyone know a good communicative person at Cambridge?
linda17563 EileenH
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EileenH linda17563
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linda17563 EileenH
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EileenH linda17563
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Good luck!
Flutterbie57 linda17563
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Flutterbie57 EileenH
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linda17563 Flutterbie57
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EileenH linda17563
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We were chatting about how different people perceive/experience Bowen. You lie still for at least an hour altogether and I find it wonderfully relaxing. Monika was telling me she often has new clients who are all on edge and impatient to "do" something who say it is "too boring". They don't do well with Bowen more often than not. What I have found refreshing is that it is sort-of alternative but they don't have a fit about you using mainstream medicine. I have mentioned this before - a trial is been done in the NHS in northeast of England using Bowen for people with back pain who the pain clinic are struggling with to see if it can help at all. It will be interesting to find out what else they find it helps with.
linda17563 EileenH
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Sometimes you do realise something has eased, without having gone to the therapist for it....(more for your money)
Flutterbie57 linda17563
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Flutterbie57 linda17563
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linda17563 Flutterbie57
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