Is it PMR or something else?: I've had PMR for... - PMRGCAuk

PMRGCAuk

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Is it PMR or something else?

judyb100
judyb100

I've had PMR for about three years. Last year I was finally able to reduce down to 5 mg of prednisone. I've been on 5 mg for about 4 months, and I've been feeling pretty good until recently. Since I've been worried about my osteopenia, I signed up for a "Women on Weights" class at the YMCA. Big mistake. The weight exercises caused pain and stiffness in my left (replaced) hip and wondered if I'd done damage to my fake hip joint. My doctor said that I just had bursitis and sent me to physical therapy. The therapist said I had a weak gluteus medius muscle, not bursitis. So quit the weight class, and I've been doing PT exercises to strengthen this muscle on the outer part of the hip.

These exercises are quite strenuous. I've been doing them faithfully, but my hips have been stiff and sore ever since I started almost 2 months ago. So I keep asking myself--am I stiff because of exercises or is PMR rearing its ugly head again? The pain and stiffness seem like they're in a different spot from when I had the worst of my PMR. But it's been over 3 years since I had extreme PMR stiffness; I just don't remember that clearly.

I imagine it's hard to give advice, especially because I can't tell the difference between PMR and muscle pain/stiffness. For the past week, I quit doing my exercises to see if the stiffness would subside. I also tried taking 5 extra mg of prednisone one day. No matter what I do, the stiffness doesn't go away.

This is totally confusing to me. If anyone has any advice, I would certainly appreciate it. Thank you!!!

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PMRpro
PMRproAmbassador

During my massage session at physiotherapy this morning it was the gluteus medius (I think) that she said was particularly hard and spasmed. My physio - who, like most healthcare professionals here is very aware of PMR - identified it as part of the PMR plus myofascial pain syndrome combination.

If is is PMR stiffness in combo with too much exercise - it will take more than a week and more than one day of extra pred. I had a day of the PMR stiffness the other day - quite a revelation - but it was a combo of weather, a very insistent massage session and not quite enough pred. All resolving nicely now.

judyb100
judyb100 in reply to PMRpro

So interesting that you just talked about this with your physio! I have myofascial pain also. Do you think I should continue on 5 mg with no exercise or should I also increase pred for a while?

You mentioned the weather, which might be a factor also. I live in Seattle, with weather similar to the U.K. Rainy, gloomy, and cool all winter (although we have a beautiful sunny day today). I realize you are lucky enough to live in Italy!

PMRpro
PMRproAmbassador in reply to judyb100

Italy maybe - but disgusting weather for the last few weeks! Wet and soggy, only not soggy if it snowed!

Targetted trigger point mobilisation, Bowen therapy originally though not now and needling have been my go-tos. Steroid injections into the trigger points as part of the needling have also done wonders but it very much depends who is on the other end of the hypodermic! The current pain management doctor is coming round to realising I don't bleed, despite the anticoagulant therapy! Her predecessor and the rheumy are rather more gung-ho.

judyb100
judyb100 in reply to PMRpro

I have a lot to learn about other ways to treat my problems! I have never heard of trigger point mobilisation or needling. I need to find a different doctor. Because I was doing so well all year, I didn't bother to search for a new doctor. I imagined I'd just slide right down to 0 mg of pred and wouldn't need to find a new doctor. Wishful thinking.

PMRpro
PMRproAmbassador in reply to judyb100

By no means all doctors will be aware of myofascial pain syndrome, trigger points or manual therapies! I live in German-speaking central Europe where a lot of things are used in mainstream medicine that in the UK or USA might be regarded as "alternative" or "complementary". You will often find that sports medicine specialists or physiotherapy practices or pain management units offer such things. I have a friend who is seen at Addenbrookes and has a very complex medical history - she was sent for some of these approaches though and they helped a lot. You may have to look around.

During the year I was left undiagnosed and untreated I had what I thoughrt was muscle pain caused by exercise, which never went away. In the end it was obviously PMR, not a lactic acid build up in muscles.

judyb100
judyb100 in reply to HeronNS

Thanks. I hope I'm not having a PMR flare, but I have to face up to the fact that this stiffness may be PMR--even thought it feels somewhat different from my old PMR stiffness.

PMRpro
PMRproAmbassador in reply to judyb100

Mine varies too. The stiffness last week was quite strange - a throw back a LONG way. But I am careful not to let it get a hold. But I am very very lucky with my doctors. We don't know exactly what it is underlying it all - but we have worked out what gives me a good QOL. And as far as we are concerned that is what matters.

My Chronic Pain Physio would say you are doing too much in one go too soon.

He is very good at encouraging patients to start low , and work your way up at a repetition a time , and an exercise type a day.

Then you have more chance of finding out what your level is and not pushing it and causing Pain.

You can also see what exercise is a Pain Trigger for you and remove it from your suggested list.

He never encourages doing more than one extra when you feel like you can carry on because he says if you get used to that over a few days and still want to do another one then you can go on . You can gradually and healthily build up activity that you can manage every day rather than pushing on or pushing through then spending three days recovering and doing nothing. It's a more successful way to get back on your feet and not trigger your conditions.

In his view , any increase in Pain and Stiffness the day after exercise is not beneficial and proves that you are doing too much , if you feel it your muscles are showing they need extra stretching , warming and help before you do that much activity again.

He encourages taking rests , doing little and often ( not one big session) gently rotating joints to warm up and cool down before exercise , preferably in a warm shower to improve your muscle flexibility , drinking through exercise and taking rests or only doing part classes if you are just beginning or have Chronic Pain.

No weights and for him no Yoga ( especially held positions ) except for the most gentle beginners movements.

Telling your therapist which exercises cause the most Pain also helps them to get closer to the real cause of your Pain and find better ways to help you.

If you find that your Physio or Therapist don't have this flexible approach to your Therapy you might need to referred on to another with a Specialism in Chronic Pain and Injury not just Rheumatology . They do work very differently and don't always know the same about each Specialism.

judyb100
judyb100 in reply to Blearyeyed

You are fortunate to have such a knowledgeable therapist! My therapist means well, but she is not a specialist in chronic pain or rheumatology for that matter. I realize now that she's not taking PMR into account. And I didn't take PMR into account either when I signed up for my weight classes. It's discouraging, because I was doing so well until I started overdoing the exercise.

Thank you for describing what your physio does. It makes me realize how much I've been going in the wrong direction.

Blearyeyed
Blearyeyed in reply to judyb100

It certainly isn't your fault , it really is the luck of the drawer. I have had six other Physios over the last ten years , including two different Rheumy specialists , and this is the first one that has taken into account all of the various pain issues and past injuries I have had to get things right .

All the rest have listened, read the notes then given me the same lessons , the same exercises ( or tried to ) and often made my problem worse because of the lack of individual help.

That's why I'm trying to pass on what my physio recommends , at least with Pacing exercise as often as I can. I hope it helps and someone works out your other issues as well PMR soon.

judyb100
judyb100 in reply to Blearyeyed

I'm going to make a list of all the good recommendations I've gotten from you and others and see if I can find a better rheumatologist and also physical therapist. I can see that you also had to keep trying to finally find better medical help!

Noosat
Noosat in reply to judyb100

I am on 5mg, of prednisone. I meet with a trainer at the gym once a week. She takes into account my physical limitations, age, PMR.. in the workout. I go into gym twice a week and redo the programme by myself. I also go to chair yoga twice a week for an hour. I am always stiff in the early morning, but that wears off. Sometimes my hips ache, but that is from loss of bone, osteoporosis. I have learnt that I can "do" through some discomfit, but never attempt to try to continue when I feel pain.

judyb100
judyb100 in reply to Noosat

I've also gone to chair yoga for several years and I never had any problems until I tried the weight class. How do you know that your hip aches are from loss of bone? That could possibly be my problem also. I've never thoguht of that.

Noosat
Noosat in reply to judyb100

My doctor authorized a bone scan, long before my PMR diagnosis. One of the ways to ensure support for hips and knees is to strengthen the "glutes", bottom muscles. I have also strengthened my abs, stomach muscles. When I ache I pull the muscles tight and stand tall. :)

judyb100
judyb100 in reply to Noosat

I hope to get to the point where you are. I've been doing exercises to strengthen my gluts and abs, but it seemed that these exercises are what caused my recent hip pain. Or I should say maybe they caused my pain. I just talked to my doctor, who thinks it's probably PMR rather than muscle pain.

Problem is any group exercises rarely are individually tailored enough to be 'perfect' for everyone and if you have PMR it is as we know complicated to find just the 'right' amount and type. I am a gardener - quite physical when I go at it - TWO gardens - one a large domestic one on quite a slope - so up and down hills all the time - and the other a larger size long but flat - although it includes a big orchard with lots of heavily laden fruit trees at this time of year - and there is 'no rest for the wicked' !! I have also had PMR (and GCA) for about 3 years and still on 10.5 mg - which is just enough to ensure I am not always uncomfortable the day after I have worked in the gardens. But I notice even at this level the old problem of comfortably turning over in the night has reemerged and I am often stiff and sore the next morning. So I also ask myself is this a return of PMR at the lowest dose of Pred I am on or have I just been 'overdoing' it as usual. I have concluded it is a wee bit of 'both' - ie. everything I am doing and a very borderline (for me ) Pred dose. BUT I am not too bad either - by midday most days I am perfectly OK to do almost 'everything' (again) and so this cycle for now goes on.

As PMRpro says it's really about QOL and you need to find your own point with that -this is the complex part but you will get the balance back soon I am sure.

Best wishes

judyb100
judyb100 in reply to Rimmy

All your gardening work is impressive! I may have the same problem you mentioned--too much exercise plus a little bit of PMR. My QOL was very good up until a few months ago, and I do hope to get it back!

Nobody can give you anything other than a medically, educated guess at best, really. I would want to see my surgeon ( if your operation was recent) to ensure that all was well with the replacement hip joint. Or failing that, an X Ray or the appropriate scan. This pain is not really behaving like typical PMR is it? You need to return to your doctor and insist on an investigation. Don’t allow them to dismiss you! Good luck. 🍀

Thank you. You're right that I need to see my doctor. Actually I have an appointment for day after tomorrow. I will try to get to the bottom of this strange situation. I was doing well until recently, but I know it's not unusual to have these surprising ups and downs!

Hi Ruby. You’ve had some great feedback, the gist of it showing how individual we all are and how complex it can be to figure things out.

I’ve had PMR for almost six years and in the last two years I been having both bilateral myofascial pain and bursitis in my hips. About two years ago I could barely walk with the pain, which felt like spikes being driving into both hips. The doc kept telling my it was arthritis and to walk through the pain, but after doing my own studying and research I felt it was trochanteric bursitis. So, I followed the recommended treatment and stopped walking, used ice and anti-inflammatory medication, and did the suggested exercises. Within two weeks I was fine.

As to whether this was caused by PMR or not, I’m in a bit of a quandary because I’ve had other bouts of hip bursitis connected to flares since then. I treat it as bursitis and don’t increase prednisone unless my "own typical PMR pains" begin to surface and get worse.

PMRpro
PMRproAmbassador in reply to nuigini

Bursitis is a typical part of PMR - although it can be caused by overuse too. If it is being fed by the PMR inflammation AND by exercise it can get quite bad and be harder to manage than if it is just one contributor.

judyb100
judyb100 in reply to PMRpro

I'm going to see my rheumy tomorrow and maybe I can at least find out if I have bursitis. He has a small ultrasound machine in his office, which might help. From everyone's comments, it sounds like I might have a PMR flare, stiffness from exercise, and perhaps also bursitis.

All these helpful comments have given me a lot to think about!

judyb100
judyb100 in reply to PMRpro

Saw my rheumy today and he agreed with you. He said that bursitis is a typical part of PMR. He advised me to take more pred for a while and see if it reduces the pain and stiffness.

Thanks PMRpro!

Do NSAID (ibuprofen or Naproxen)pain relievers have any effect on your new pains? If they help, it isn’t PMR.

I tried some Tylenol and it didn't seem to help. Thanks for the suggestion.

Tylenol is NOT an anti-inflammatory (NSAID). It helps with fever and pain, but does nothing for inflammation. Aleve (naproxen) and Advil (ibuprofen) are, as is aspirin.

PMRpro
PMRproAmbassador in reply to OutdoorsyGal

Mixed opinions:

ncbi.nlm.nih.gov/pmc/articl...

"The results of this clinical trial agree with recent findings in animals studies which show paracetamol to be anti-inflammatory."

OutdoorsyGal
OutdoorsyGal in reply to PMRpro

Interesting, Pro.

It should be noted that Tylenol (acetaminophen) is hard on the liver and that it is easy to take too much of it as it is contained in many over the counter medicines for colds and flu, headache formulas (e.g. Excedrine), and in some nighttime sleep combination drugs.

On the other hand, some people have gastric issues with ibuprofen and naproxen.

PMRpro
PMRproAmbassador in reply to OutdoorsyGal

As we pointed out in a thread about flu a day or so ago.

Properly used paracetamol is OK - and for us, far preferable to NSAIDs such as ibuprofen and naproxen alongside pred. I don't find oral paracetamol is much help for me - but i.v. paracetamol was wonderful after surgery!!!!

Hi, just read through all the thread, some good advice here. Those who know me will recall I was a specialist exercise teacher before being taken down by PMR.

I cannot advise directly but as a general comment I would say that any new exercise program should be started gently and allowing yourself rest days. So for example if you went swimming on Monday, Tuesday rest, Wednesday do some muscle strengthening, Thursday rest, Friday do walking or some other weight bearing activity, Saturday rest, Sunday muscle strengthening. This is just an example. This gives your body time to heal between sessions. All muscle strengthening is achieved by "damaging" the muscle fibres (micro-trauma) and then the muscle heals making the fibres stronger. So you can understand why if you do too much in one go you get pain and stiffness and that PMR might be exacerbated by too much of the same type of exercise.

As you have had a hip replacement it doesn't surprise me that after exercise you become stiff as in order to fit the new joint muscle will have been manipulated plus your "bad" hip probably had muscle wastage from under use due to the arthritic pain before the joint was replaced.

I would however advise an xray and/or MRI to have a check on what's happening if the stiffness after exercise doesn't ease up.

Hope this helps xxx

judyb100
judyb100 in reply to S4ndy

Thanks! I was doing physical therapy exercises 3-4 days a week, and they were quite strenuous. I walk a lot, but still my hip muscles were quite weak when I did the PT exercises. My exercises weren't interspersed with swimming and walking as you suggested. After about a week, my hips started feeling stiff and somewhat painful all the time. I kept going for 6 weeks, but my stiffness and pain never let up. I stopped doing the exercises about a week ago, and I'm still stiff. I'm seeing my rheumatologist tomorrow. He's usually not very helpful, but I'll explain all this stuff to him and see what he says.

I do have recommendations for a couple of other rheumies, and I'll change doctors if my current one doesn't help.

Hidden
Hidden in reply to S4ndy

It has taken almost 2 years of increasing problems of mobility and pain issues to get to the stage of an mri on my spine. Finally having one next Tuesday. Once I finally managed to get referred it's been very quick but trying to get Dr to understand its new pain making old pain worse has been a nightmare.

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