Same pain but always went away.

[3daysinjuly]

I have always wondered why in my past ( 10 years ago up until 6 months ago) I would get what I can only call systemic inflammation at least every 6 months. Same body parts as my recently diagnosed PMR. It would never be even close to PMR pain but I could feel it all over. And it Always went away. The longest was a few months, the shortest a few days. I would see my gp and he did not know what to make of it. All my bloods were normal, and it never lasted. And it never really interfered with my life too much. BUT, it was there. And it was inflammation. Now I wonder if it was all building all these years to PMR. I wonder if anyone else has experienced this in their past.

[Constance13]

Yes, I did! Not for 10 years though, about 4 years! I sometimes got pain in my upper arms, or my hips weren’t right. I never went to the doctor about it as it always went away after a while. Then, one day, 6 1/2 years ago, I couldn’t comb my hair, found it difficult to get out of bed. Oh dear, I thought, old age is coming in fast. However, 3 weeks later I was in agony so went to the doctor. He took blood, talked about my pain & stiffness, then said “I know what’s wrong with you, but we will wait for the blood results”.

The following day, at 7.30 a.m he rang me up and told me to come into the surgery. When I saw him I said “it’s arthritis, isn’t it”. No, said he, it’s Polymyalgia Rheumatica. I laughed and said it’s WHAT? “You’ll not laugh long” he said (he’d been my doctor for over 20 years)! Still not laughing!😏

[pmrgcavictim]

Me too, but on length of time, I might be the winner, so far. Back in my late 20's I started having arthritic type pain, shoulders, hips, neck, back and knees. Upper arm muscles also, but put that down to my manual job. Many visits to GP's over the decades, with the occasional trips to the "experts" at hospital. After many tests over the years, I always ended up with the same kind of answer, YOU DON'T HAVE ARTHRITIS, then the polite version of GO AWAY. NEVER a, "we'll find out what it is though". Then in June 2018, just 2 months before my 70th birthday, I had the answer to my almost 45 years of intermittent, "three quaters of the time" pain, which ranged from annoying to very painful. I had been having one of my usual worse month or so of pain, waiting for it to ease up a little. I woke up the next morning to what only a PMR sufferer can understand. The level of pain scale 1 out of 10 didn't even register on the PMR scale. PMR starts at about 25 ish I think. I couldn't move or be touched without even more pain, it felt like I had been smashed to bits, all the places that had hurt for so many years, and a couple more,even my skin. I didn't think it was possible to have such a level of pain, and survive. After a second GP visit in 2 days, I was diagnosed with PMR with an ESR of 174. Prednisolone worked its MIRACLE for me in 6 hours. Then, a month later GCA decided to come along just for fun. Trevor.

[PMRpro Ambassador]

There is a form of inflammatory arthritis called palindromic rheumatism - it appears briefly, anything from hours to days, in various joints all over the body, moving from joint to joint. Sometimes it disappears altogether for years - only to return in force as a "proper" inflammatory arthritis, RA or PsA perhaps. I have said for some years that there are at least 4 different sorts of PMR, maybe this is a fifth?

I'd had what was probably ME in my late 20s but it went away leaving just minor fatigue - unti my mid-30s when the fatigue just got so bad I could barely function. That responded well to HRT - tried at my amazing gynaecologist. PMR appeared shortly after I stopped it in response to yet another cancer scare. I think they were all autoimmune problems, just manifesting a bit differently.

[Marijo1951]

Like PMRpro I think I had ME in my late 20s, though at that time (1981) the doctors certainly weren't admitting that such a thing existed. I was a mature university student and a single mother of 3 with an ex-husband who avoided his responsibilities, and I was still grieving the early death of my mother a couple of years before. I had a bout of flu and then crashed out for some months with overwhelming fatigue. I often wonder how I managed day to day and how I came out with a decent degree, especially as my GPs were so dismissive and made me feel I was wasting their time (I soon gave up on them) I think my children were okay by and large, but the house certainly suffered severe neglect.

When I went down with the extreme fatigue of GCA/PMR I was reminded of that earlier experience. I'm pretty convinced that somehow the two conditions are connected, although well over 30 years apart.

[PMRpro Ambassador in reply to Marijo1951]

Mine was late 70s but I was referred - they couldn't deny there was something wrong as I lost about 2st in weight! - but it was a 6 month wait even then for a medical appointment and by then it had started to improve. I had had raised liver values and the specialist did take it seriously but admitted he had no idea what it might have been.

[Marijo1951 in reply to PMRpro]

You were lucky in that at least you were taken seriously even if they couldn't do very much. I lost a lot of weight too, but that didn't ring any alarm bells. All the GPs in my practice made it clear that they considered me a hypochondriac. Things were so much more 'hit and miss' then when many conditions had been recognised and described, but not all doctors had caught up.

I know two contemporaries who have a son with Asperger's syndrome (both born mid-seventies). One was diagnosed very early and received the best support available, but AS was never even mentioned as a possibility to the parents of the other one. It was only when he reached adulthood and somebody mentioned it casually that they learned about it and realised what his condition was. I also know a similar story about two people, also born in the 70s, one who had coeliac disease diagnosed in infancy while the other was grown up before she found out what was wrong. One reason to be grateful for the worldwide web.

[Mks9558]

I too had pain in the same areas over the last 4 years that seemed to come and go, hips, in the morning only; ankles - after spending a lot of time on my feet I could hardly walk; I chalked the hips up to the fact I need two knee replacements/ I am bone on bone after 3 ACL reconstructions (replacements on hold now); and wrists which I was tested for and diagnosed with carpal tunnel which disappeared as mysteriously as it appeared.

Now as I try to taper down from 80 mg I feel twinges of pain in all these areas.

[PMRpro Ambassador in reply to Mks9558]

I saw something recently about how a/i disease seems to target areas that have been inflamed in the past. No idea where it was now - but I did comment that that fits with something a lot of us have said about how PMR seems to go for past weak spots.

[kulina]

Yes, I did too for years! I constantly had muscle pain in my neck and shoulders and I always thought it was from bad posture from using the computer so I never went to the doctor for it. Stretched and did Yoga and it went away in a few days. When PMR hit, I couldn't even get out of bed. It was pain all over and stiffness. The rheumy says that the pain in elbows, wrists and knees are not PMR but through this forum we know differently.