Question

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What are the differences between fibromyalgia and PMR ?

Thanks.... 

1 like, 51 replies

51 Replies

  • Posted

    Not a medical professional but my understand is that Fibro is

    nerve related and Poly is muscle related.   That's the simple

    explanation maybe someone can give you more info....

  • Posted

    The fundamental difference is the reason for the pain.

    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.

    • Posted

      If you palpate certain areas of the body  ie  upper back, shoulders, hips it will be tender/ painful but wth PMR palpation does not cause tenderness or pain .... yes? 
    • Posted

      another question...  every so often my left eye becomes bloodshot... thoughts? 
    • Posted

      I have very tender muscles, especially the shoulders (trapesius) - and I don't have fibro. You can also have very tender muscles due to myofascial pain syndrome - and it frequently appears with PMR. It is due to the same cytokines except they are concentrated in trigger points not systemically.

      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.

    • Posted

      Yes, you are right again on all accounts Eileen!.  I have had ME/Fibro since 1989, but 3 years ago, I knew there was a difference in pain stiffness etc....my doctor recognised it also.  I can only say that fibro pain is more nerve /burning pain, and the PMR well, we all know what that is like....the both together...no words can I print here!!  My Rheumy said the difference was, one comes from the brain, the other from the spine? ........don`t care where it comes from, pain is pain.  Needless to say, I was overjoyed at first to actually be able to be treated!.....now struggling ( with strict Rheumy) to come down on Pred.....I always say to people, pain can mostly be eased with meds, but fatigue...it`s bonecrushing...nothing for it....sad
    • Posted

      Eileen, I have spent some time this morning reading through your knowlegable comments and wanted to explain that, in our last correspondence, I tried to send you my email address to talk more about Italy outside of the forum, but it got thrown out by the site administrator, Fine, because you and I both seem to have busy lives, and the additional chatter would have been disconcerting to everyone.  I did look up sites on your home town there and got a nice week or so of flashback memories of my youth!  Thanks for that! 

       

    • Posted

      You can send me your email by using the pm facility - click on the silver envelope below my atavar and it will bring up a messages bit to send a post that only I can see. Such personal details aren't allowed as this is a public form.

      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.

  • Posted

    As Eileen says, it is a real pain to have both - and I do.  But to me the pain of the conditions is very different.

    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!

    • Posted

      I'm sure I don't have fibro - but I get tender skin. The same sort of feeling you get with flu - brush your fingers (or anything) over your skin and it shrieks. Not necessarily all over, just areas of it...
  • Posted

    At 47 I suffered from RSI (writers cramp in hands) and had to take time off work. Six months later my  whole health deteriorated and I was diagnosed with Fibromyalgia. I have suffered the pain of both RSI and Fibromyalgia for 18 years.Two months ago life changed dramatically for me in the middle of the night and I have now  been diagnosed with Polymyalgia. If I have been diagnosed correctly then I would say that both myalgias  started in a similar manner. With Fibro, any muscles I used would not relax and had to be massaged and treated. I had sweats, felt nauseous, lethargy, brain fog, chronic bowel problems, never ending sinus, and all fibro points were tender. This did not really change much in 18 years. It mainly affected my upper body in the beginning, but spread throughout my lower body over the years. I always felt pain when anything touched me. I thought Poly had virtually hit me over night, but in hindsight I had been deteriorating over a few months. My first obvious sign that something was different, was waking in the middle of the night and feeling excruciating pain in my neck/upper shoulders, and in my legs between my hips and knees. Pain was much more excruciating and sharp than Fibro and in just two bands of my body. In previous weeks I had more brain fog etc, sweats, blurry eyes, lethargy, and a frontal headache which I had never suffered from before. I thought I had over done it and I was suffering from a Fibro meltdown, but possibly it was the onset of Poly. Blood tests indicated it was Poly, and I improved incredibly within 24 hrs of taking Prednisone. They started similarly, but I have experienced different kinds of pain. Since taking Predisone, my Fibro points have settled down, and for the 1st time in 18 years I have no RSI pain in my hands. I also do not hurt when someone touches me.(Fibro). Massage, stretches, excercises always helped Fibro stiffness. Nothing helped my Poly stiffness except Prenisone. I think there is still a lot of research to be done to understand both of these problems. 
    • Posted

      I agree with everything you have written here...I don`t know what dosage of pred you are on, but I started on 15mg  3 years ago, and for the first time in many years, i had energy!!  I could walk with my family and go out, when and wherever I wanted....for a while....and I realised what I had been missing all those years....I think you can get so used to a restircted lifestyle, which is sad, but with out choice.  I now have the fibro pain, and nerve tenderness, fatigue, foggy head....and so on....and some dull pain in my shoulders/cramp sometimes in feet/hands...but I am lowering pred every 6 weeks only by,  .5mg.....be careful, as I have had terrible relapses, and very blurred vision, which has kept me housebound!....Research I think is a long way off, my doctor told me years ago.....you don`t die from it, so they won`t put money into it....and nothing has changed I`m afraid!!..good luck and try to keep well....we have a double battle on our hands!!...
    • Posted

      That's interesting - for most of the 5 years before pred I had what was assumed to be RSI in both hands, right was noticeably worse than left but of course when you are typing it is different than when writing. I gave up trying to write any more than a few words, it simply caused too much pain. The pain went from the outside of my elbow diagonally to the inside of my wrist and I had sharp pains in my fingers when I tried to bend them that came and went. 

      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.

    • Posted

      It`s heartening to know that we are being taken "seriously" by those that matter in research, hope on the horizon

      ....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......

    • Posted

      Is that your state or your company pension? I had to wait over 2 years for my state pension because of the sliding change to 65 for women - but was pleasantly surprised at the amount i got above the "base rate" because of SERPS I didn't know I'd paid! I spent most of my working life moving around or freelance so no comfy company pension of any size for me. Get enough of my piddly private one to say there is some though.

      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 lol

    • Posted

      Yes, I was pleasantly surprised what I got.and had to wait like you (I`m 63)..and so was himself....couldn`t understand why I got more than him!, but like you serps...contracted in or out, all beyond me.....have got small private pension.(.UEA)  Well, if it`s german/Italian it`s all money in the end...good job it`s not greek!  What does annoy me (easily done with this gov) is they say it`s a benefit, it`s a pension.... which we`ve paid in for!..and at least now I don`t have to pay for my Pred....smile.
    • Posted

      Quite - I wouldn't get owt if I hadn't paid in in the first place. Someone got iffy at me a couple of weeks ago because I said I would probably return to the UK if we ever got ill: "Oh, so you'd come back for MEDICAL CARE?" Well, not by choice because the medical care here is outstanding still. But if you need your offspring to do the needful (one's trained as a nurse and one a paramedic) it's the obvious thing to do isn't it? And I am still paying tax in the UK as well as here...
    • Posted

      I started on 20mg a few weeks ago. In the second week I had 3 amazing surreal days of no pain or stiffness - Fibro, Poly or RSI

      .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 ?

    • Posted

      I was very surprised my initial dose of 20mg gave me relief from Fibro and RSI as well(for 3 days),as I was told it would not help. My Dr now says that the initial dose may have put me in a state of euphoria. Is that possible ? Or have I had inflammation for 18 years ?
    • Posted

      I started on 15mg 3 years ago (standard) got down to 7mg, and struggled with symptoms returning.....stayed on that for a while and droppped to about 5mg, about November last year I got real bad blurred vision...I was sent to the emergency eye clinic to check for GCA....it wasn`t that....I was put up again to 15mg anyway....but I am struggling with some stiffness and fatigue....I have been splitting my dose...My Rheumy (not very pleasant) said "you must be down to 10mg when I next see you in August or I will give you medication to get you off pred" that is Methotrexate, which has recently hospitalised my sister after only 2 doses!!  I will lie to the Rheumy if I have to in August, I`m doing it my slow way!  I am on 12mg at the moment.......I can only tolerate 1 Paracetamol before bed for pain, can`t take anything really because of fibro....makes my vision worse, and balance...just like noise/light is intolerable.....have the burning ankle pain so far this morning...but will try to bear it.....yes, it becomes part of life...and many people over the years have asked me how I put up with it....but what is the choice!!  How do you deal with both problems dare I ask?.....
    • Posted

      He could be right about the euphoria bit but I think it is more likely that at least some of your "fibro" for the last 18 years has been due to PMR or something similar. I am quite sure that there are many younger PMR patients who are merely dismissed with "imagination", "depression" or "psychosomatic" diagnoses or "fibromyalgia". The RSI I would lay odds is part of the PMR - it was for me, it was tendonitis due to the PMR, that and synovitis are part of PMR. When I got to the end of the initial 6 week course of pred the return of the pain seemed worse than it had been before - I assume because of the contrast of 6 weeks of almost no pain.

      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.

    • Posted

      You need a new rheumy - he apparently doesn't understand PMR or the role of methotrexate. It does NOT replace pred, if you are very lucky it may reduce the dose of pred you need but it has the potential for some very unpleasant side effects of its own. I do know a few people for whom it has worked quite well but I also know people for whom it didn't, allowing them to reduce to a very low dose at first but then a major flare came a long and they were back to the top dose again.
    • Posted

      I have seen close hand and still am with my sister (abnormal liver reading/severe pain etc) what MTX can do....and not tolerating meds well myself with fibro there is no way I will take that drug...where is my Rheumy coming from!!  I asked my doctor to see another Rheumy and she said, welll you`re in the system with her now!.....I am sure you are right about maybe it was PMR, with some past symptoms...I know to doctors we are "heartsinkers" and it`s fribro when they rule out other  things. 

      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....rolleyes

       

    • Posted

      For years I have dealt (as best i can) with Fibro, by doing at least half hour of stretches every morning before I can get moving. I use heat bags. I have a hand held massage machine. But my absolutely favourite friend is an Elaine Petrone excercise ball, which I got on the net from America. At both ends of the day I lay on this along my spine and butt muscles. You will know when you put it under a sore spot - I lay there till the pain subsides somewhat. Its perfect for taking on holidays as you can relieve some stiffness. I treat myself to health massages when I can, and I go to an Osteo and previously a Chiro who also helped the stiffness. This is all time consuming and is made possible for me, as I was able to give up work. My daughter had her 1st baby just as I left work and it was decided that I do the childcare and she go out to work. I now have 3 Grandchildren and I spent 15 years looking after them. I could sleep when the babies slept, nap during kindergarten, etc and I believe that the 'distraction' was a wonderful help (probably the best).Hot baths and painkillers were necessary sometimes. I had small ups and downs , paced myself, but never improved much. I did do the ntidepressant Loxamine eventually.

      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 ?

    • Posted

      I agree with you.There does seem to be quite a bit of evidence now that it is possible to have it earlier than they say.  Fibromyalgia is still taught under the Mental Health section  in NZ(daughter was doing Nursing studies at the time) My Dr and Chemist have now  both decided that dropping by 5mg was too big a step. After reading all your advice  about taking it slow, I had decided I would stand my ground about that, so I am going down by 1mg evey 2 weeks.
    • Posted

      I used to live in the NE of England and there was a specialist ME/CFS clinic there. I asked for a referral before the PMR but the GP said they only wanted "new" patients to teach them how to manage it and as I'd had what was probably CFS for a long time I'd already learnt. However, a lady who went to the clinic came to the same gym as me and she said that one of the specialists there used to treat his ME/CFS patients as if they were hypothyroid whether their blood tests showed it or not - and they did much better.

      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.)

    • Posted

      It`s interesting because I was on HRT for 10 years (patches, couldn`t tolerate the tablets!) and felt somewhat better...I came off because they gave me fibroids...hence a hysterectomy....then came PMR....

      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....

       

    • Posted

      Be careful, if you don`t mind me saying....1mg every 2 weeks is far too quick for me......0.5mg every 6 weeks, is the only slow drop for me withour relapasing .....
    • Posted

      Yes - I'd agree that 1mg every 2 weeks is too fast - it isn't long enough to know if you are still stable. Every 4 weeks maybe. Some people can't manage 1/2mg reductions without a lot of discomfort which is often mistaken for a flare/relapse or whatever word you want to use.
    • Posted

      You might ask your rheumatologist about tocilizumab (Actemra) instead of methotrexate.  It is specifically a blocker of interleukin-6, which is the active cytokine in PMR.  It is used in rheumatoid arthritis and other autoimmune disorders.  Recent research indicates that it is better than methotrexate in PMR.

      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!

    • Posted

      Just to add to snapperblue's comment - toxcilizumab is currently being trialed in PMR and there are centres doing it in the UK so it might be worth asking your rheumy if he is in a good mood. The indications are good according to pilot work - but then, so were the indications in a small pilot study for leflunomide. The people I know who were on leflunomide ended up stopping it for various reasons. 
    • Posted

      Since you are obviously "in" to alternative therapies - have you tried Bowen? It kept me upright for the 5 years of PMR and no pred - in combination with aqua aerobics, Pilates and a spot of Iyengha yogo. The earlier in the day I could do an aqua class the better day I had and it let me manage pilates and the yoga - like you I could fix my own timetable as I was freelance. Working strange hours is an advantage when the client needs that translation done yesterday because they got their time management wrong...
    • Posted

      Thank you for that, I have written it down and will go armed with the info or may prepare her fist with email...my Rheumy dosen`t like me to speak, or have an opinion.  Last time I went she said, stop speaking and listen to me!!...when I was just telling her that I had split my dose...to help with the blurred vision....
    • Posted

      Does toxcilizumab come under what are called "biologics" which I have read about in Rheumatology?....

      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...

    • Posted

      Even more reason to find another. It is hopeless trying to deal with a chronic condition on its own if your doctor is too arrogant to listen to the patient's side of things - and when there are other considerations it is even more important. 

      Perhaps the fist was a Freudian slip! Where are you in the UK?

    • Posted

      Yes, it is a monoclonal antibody, hence the mab bit of the name. 

      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!

    • Posted

      Hmm - N&N I assume then? Is Southend maybe a bit far?

      Anyone know a good communicative person at Cambridge? 

    • Posted

      Yes, N&N.....Other half dosen`t like driving!.....
    • Posted

      I really don`t feel well enough most of the time, and can`t rely on not having blurred vison!.....Will try and see if I can change to someone else....next appointment is August, so will get moving on it soon....Thank You. 
    • Posted

      Darn - yes, had forgotten the blurred vision. It is relatively easy here - as a member of the White Cross we get 6 hospital transfers included in our membership as well as a medical repatriation flight per year. 

      Good luck!

    • Posted

      Very grateful for you 'saying' as I had no idea at all what is considered slow., and as Eileen agrees with you I will take heed, and take your advice. Those who suffer the same, usually do have more knowledge and understanding. Thankyou so much - I need guidance at this stage. I really do hope you find a Rhumy you are comfortable with - out with the stressfull !
    • Posted

      I8 years ago we had no alternative here, but to look for self help and alternatives. Focus here was on 'who is going to pay', so for my own sanity I had to cut that stress and find my own relief. I have a close friend who has achieved amazing, mind blowing results  for cancer, with diet initially when she was considered too far gone by "Medical" to help.. She is my living proof that alternatives help. I haven't tried Bowen, but like Specialists, you have to find a good one - don't waste time with those who don't listen. I was amused by the Freudian slip.confused
    • Posted

      ...I am going to try a Bowen Therapist myself in a few days....I would prefer alternatives any day if possible.  I am a great believer in that we know our bodies, and what will be receptive to or not.  I know some things that I don`t think will help me, and because of not having that belief, it invariably won`t work, if you know what I mean.  Glad you liked the Freudian slipwink
    • Posted

      I had a session of Bowen last week and another yesterday - sort of prophylactic really but the things that have improved in the last week are very interesting! I'd been at bit  "bunged up" (I know, TMI) - not any more! Never thought about it helping with THAT!

      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.

    • Posted

      I don`t mind not "doing"  I have done the Perrin technique in the past, but stopped short of Reiki...just knew if I thought it wouldn`t work for me,  if you get my jist....my husband says, it`s you "doing" it then....so what.... if my mind needs a helping hand, I don`t care what helps me....different things help different people.....will try three sessions of Bowen to begin with....

      Sometimes you do realise something has eased, without having gone to the therapist for it....(more for your money)cheesygrin

    • Posted

      I have found some Bowen Therapists nearby so I think I will treat myself this week. Any chance for an hour of relaxation sounds good. Have a lovely day Linda and Eileen.I am off to watch 2 Brit shows for relaxation.
    • Posted

      Linda how did your Bowen therapy go ? I went in to enquire about Bowen , but ladies thought that Kinesiology would be more helpful. I know nothing about it, but will give 3 sessions a try. They address why I got the problem in the first place. Sounds good - we shall see. 
    • Posted

      Sorry, I haven`t started yet...had a few days break first...(feel a lot better away from all the stress of family etc!) but will tell you as soon as I do...good luck with kinesiology...and keep me posted please....may try that as well, or in stead of...

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