Is it PMR, Old Age or what?

[Dinty123]

Hi, haven’t posted for a long time, but since I get no real answers from my Rheumatologist, thought I might get some guidance here. My problems started last August, 2016 - I had just gotten over a bad cold, when I woke up in middle of night with excruciating pain going down my left arm – thought I might be having a heart attack except that my pulse was regular and steady and no trouble breathing. Developed various symptoms after that, couldn’t turn over in bed without intense pain, morning stiffness fading during day, extreme fatigue, etc., etc.

I have 2 problems that delayed a diagnosis of PMR until October:

•No inflammatory markers - in September my CRP was .5 (Normal is 0 - 0.5mg). I finally had a moderate rise in my CRP to .9 in Oct. and my Rheumatologist felt it was enough to justify a trial on Pred. Never had an elevated ESR. He put me on 10 mg. Pred., Low dose – but it helped, especially with exhaustion. However, always had some remaining pain, although bearable.

•2nd problem – pain was always mostly in my hips (‘pelvic girdle’). Rheumatologist told me that most people with PMR have pain in their shoulders.

My Rheumatologist gradually decreased Pred. and last time I saw him in December I was on 7.5mg. But I was having increasing pain in my hips – again he reiterated that most people with PMR have pain in their shoulders and my hip pain could be just ‘old age’. I do have some osteoarthritis in my spine, but at 69y.o. – soon to be 70y.o. – I think many people have some osteoarthritis - however, I don’t think it causes this kind of pain. Maybe it does, please correct me if I’m wrong. At any rate, the Rheumatologist did order blood work and told me to call him the next day for the results.

When I called him for my results, my CRP was .3, so he decreased me to 5 mg. Pred./day. Since then, the pain in my hips has increased. At night, I again have pain turning over in bed, but the worst is getting up to go to the bathroom in the middle of the night – I can barely walk because of pain and stiffness, must hold on to furniture to support myself walking to B.R. (10 ft. away) and trying to sit down on toilet – YIKES! - also, can’t bend over or get dressed. This lasts until the morning, when after I get up the pain does begin to fade after about an hour. However, during the day, when I walk, the pain in my hips is exacerbated and is only relieved by sitting down. Aching and pain can also be bad in the evening (again not PMR-like). The hip pain is bilateral but worse in my Rt. hip – it starts in the center of my back (like a knot) and goes around the sides. Also, recently I’m getting a pain that extends from my Rt. Hip up my Rt. Back, almost to my shoulder.

I did go up to 7.5 mg Pred. on my own for about 1½ weeks without relief – went back down to 5mg. I am going to see the Rheumatologist again next week. My questions are:

•Is this PMR, Bursitis, old age or what? I think I was almost as old as I am now last August when this all started and yes, I had aches and pains, but nothing as constant or intense as this – I think I would remember.

•Did I ever have PMR? Do I have PMR now?

-Because I never had obvious inflammatory markers, I think my Rheumatologist is skeptical.

•I know if my Rheumatologist orders blood work on me, I won’t have any inflammatory markers, just because my body never reacted that way. He’ll think I’m doing fine and my hip pain is just ‘old age’. I sometimes think he doesn’t believe me and thinks I am a hypochondriac. What can I say to him to convince him that maybe something else is going on?

Sorry this is so long-winded, but I appreciate any help/advice anyone can give me.

[HeronNS]

Will just address your question about the osteoarthritis, as I have OA in my spine. I believe some compression of the discs has caused hip problems - sciatica type stuff, made walking painful, one sided. It was NOTHING like the pain and disability cause by PMR!

[Dinty123 in reply to HeronNS]

HeronNS - I guess OA can also causes hip discomfort which can add to PMR pain and may complicate diagnosis and treatment. OA seems to be another consideration in the complex management of PMR.

[HeronNS in reply to Dinty123]

The patient can also inadvertently confuse the issue. I'd been diagnosed with OA when about 40, and for the longest time assumed that the new pain I was feeling was just the OA developing worse symptoms after about twenty years. Presumably the doctor (new to me) just blindly accepted my assumption when I went in search of pain relief and referrals to physio. It was a second doctor who saw me in a state of complete collapse who diagnosed PMR very quickly. Now I know that the OA wasn't getting worse, it was a completely different disorder.

[Dinty123 in reply to HeronNS]

That is why it is important to get a rheumy who is an expert in PMR and can sort out all the various issues going on (but, unfortunately, it seems they are few and far between). PMR is a difficult diagnosis to make, especially if, like me, you do not have the inflammatory markers and don't present with the classic textbook symptoms. Also, the research I have seen seems somewhat skeptical of atypical presentations, which makes it harder to work with less-expert Docs.

[HeronNS in reply to Dinty123]

The problem is even knowing your disease merits referral to a specialist. I'd never heard of PMR before. Most of us haven't, I bet. And how many of us live in areas where we can access, in a timely manner, any rheumatologist, let alone one who actually knows what they are doing when it comes to PMR/GCA? I live in a city with a medical school and teaching hospital and I think there are only 2 rheumatologists in the community, one of whom is the "osteoporosis specialist" who puts everyone on AA and the other I don't know, but reading the reviews about her I wouldn't go near her if I could help it. I'm happy with my current doctor and PMR, but I was a bit taken aback when I took the dead slow tapering program for her to see, and when she saw GCA as part of the header she didn't immediately know what those initials meant. I had slightly raised markers, but these had been dismissed by the former inexperienced GP as of no significance, just normal "for my age", and would probably also have been dismissed by current doctor had my symptoms not been so drastic when she met me for the first time.

[Dinty123 in reply to HeronNS]

I'm still confused about PMR -my Rheumy thinks I'm doing fine because - no inflammation, i.e., no raised markers. I really think sometimes he thinks I'm making more of my hip pain than is warranted.

[HeronNS in reply to Dinty123]

As PMRpro said, something like 20% show no raised inflammatory markers. And once on pred inflammation should go down - that's what the pred is supposed to do for us! My physiotherapist sorted out a lot of incidental pains for me. I had very hard muscles in my back, of which I was completely unaware. She used some techniques to reset the muscle tone, and a lot of my hip problems resolved. Sometimes I get discomfort again, but usually when I am very tired or have walked too far, or in unaccustomed winter boots! Nothing like it used to be.

[PMRpro Ambassador]

Your rheumy is past his sell by date. Yes, hips and shoulders are typical - but not essential. And up to 20% of patients do not have raised markers - it is all over the literature. Time to find a better one.

However - my personal version of what you describe was very similar in terms of symptoms. I had bilateral trochanteric bursitis and myofascial pain syndrome (MPS) which caused spasmed muscles over most of my back which eventually put such stress on my pelvis that it caused sacroiliacitis - which was excruciating. ESR was never out of single figures, CRP has never budged. Even when it was "just" PMR that stopped me moving at all. But the bursitis is part of PMR and the MPS is often found alongside PMR, it is caused by local concentrations of the same inflammatory substances that cause PMR when they are systemic and that is what forms the trigger points.

MPS often manifests as hard knots in the major muscle groups which form trigger points in pairs on either side of the spine in the shoulders, about rib level and where the baby's dimples are in the lower back. These cause the surrounding muscle to spasm to try to relieve the pain. They can also irritate nearby nerves - leading to referred pain in the arms and hips/legs depending on what nerve is affected. If the sciatic nerve is involved the pain CAN go all the way down your leg.

I'd suspected it for years and managed it with the help of an osteopath and a Bowen therapist. Pilates and Iyengha yoga also helped. In the end it was the pain clinic here in Italy that identified the hard muscles and got to work on them. Here they used a technique called needling and also manual mobilisation of the trigger points - myofascial release techniques is another term. Years ago I had also had several months of massage from a sport masseur in Germany who had done something similar.

Originally when I eventually was put on pred (after 5 years of PMR) the bursitis went away after about 4 or 5 months on 15mg oral pred. The MPS wasn't too bad until after a whiplash injury - and then an orthopod told me it was wear and tear in the spine that stopped me walking after about 10 -15 mins. Rubbish - it was muscular and when treatment was aimed at relieving spasmed muscles it went away. The bursitis had returned - it responds beautifully to local steroid injections.

No sign of OA anywhere - and the first rheumy I saw told me I had OA in my knees and hands. She could feel it. Well good for her - no sign now some 13 years later! Pred must cure OA...

[Dinty123 in reply to PMRpro]

PMRpro - Thank you SO much! It's just nice to be validated and know it's NOT just 'old age' and I'm not a hypochondriac. Can you give me a reference as to where I can find literature about the 20% who don't have inflammatory markers - my Rheumy is stuck on that and maybe if I can site some literature, he'll reconsider his treatment approach. Plus, any references on trochanteric bursitis being part of PMR would also be helpful. Again, thank you.

[PMRpro Ambassador in reply to Dinty123]

I would have taken exception to it being "old age" at 51! Though one GP did try the "you aren't getting any younger" line! This to someone who was at the gym daily.

[Janll]

My first bout of PMR 13 years ago was ALL about hip pain. Terrible pain. Couldn't sit in one position for longer than 10 minutes. Markers were not very high. My 2nd bout of PMR has not affected my hips at all. Markers are quite high and my shoulders are hit with the pain. These doctors and Rheumys are in too much of a hurry to see you in and out of their office. Don't wish PMR on them but they certainly need some further education on this frustrating and painful condition.

[Dinty123 in reply to Janll]

JanII - Thank you and I agree - the Docs especially need more education on the many manifestations PMR can take. Just from my reading here, it seems no one case is exactly like another nor presents in the same way...plus, it can be complicated by other conditions, like MPS and bursitis (let alone problems an individual may have pre-PMR). Many don’t know how to respond to the fact that PMR does not always follow a predictable course and their initial treatment plan may need to be reconsidered and adjusted.

[PMRpro Ambassador in reply to Janll]

Oh I do for some of them! And really I'm quite a nice person...