New PMR patient with general concerns

Just joined the group after been diagnosed with PMR. I've been very healthy and active. Six years ago, I had a knee injury. For some reason, at the time I didn't know, my shoulders, neck, arms, wrists, hands, and feet were inflicted by pain I never experienced. I thought it was associated with a bad neck and went religiously to the chiropractor for a year. Eventually, the pain subsided. That was six years ago.

In February of this year, I had appendicitis and my appendix was removed. A few days following the surgery, i noticed a pain in very small muscles associated with both shoulders muscles in the upper back region. Pain soon took over my shoulders, hips, wrists, hands, and fingers. I was diagnosed with PMR a three weeks ago and put on 20 mg of predizone. I could feel the improvement in my hands, wrists, and shoulders within 6 hours after the first prednizone. However, the improvement rate has drastically dropped. Hands and wrists even feel worse at times.

I wonder if I've been misdiagnosed. Is it fairly common for PMR patients to experience wrist, hand, and finger pain? It is completely symmetrical. With the left hand slightly worse than the right hand. I thought it was carpal tunnel syndrom and put on this brace. OMG... don't do that. I couldn't move my hand for a whole day. It swelled to the size of a baseball glove. LOL...

FYI, I am a 52 year old male.

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Just another thing to add from above. The days before taking the prednizone was the worst pain I've ever had. It was almost crippling.... Had no idea auto immune system stuff could be soooo painful..

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Hi. Welcome. Certainly thus latest episode prior to dx sounds like typical pmr. The relief within hours is also indicative of pmr. It is usually bilateral but there can be carpal tunnel syndrome along with pmr. Sometimes people need 25mg and some have 30mg before they experience a sustained relief.

However, we always ask a question when someone does get worse again. Did you start doing your "normal" activities again as soon as you felt better? Many of us try and slip back into doing some strenuous or repetitive tasks just because we have pred euphoria and a lovely reduction in pain. This can lead to muscles complaining again. Over the counter pain killers may help this delayed onset muscle soreness (DOMS). So one day you do some household tasks, exercise, gardening or whatever. The next couple of days your muscles hurt because they don't have the blood flow to repair as usual.

As i said some people require more pred to start with so its worth asking your dr. Remember to say that you did get good relief within hours of pred. I hope you can get over this bump. I am sure others will be along soon to talk about other things you can do to manage pmr.

Yes. Auto immune conditions can be very painful. It is a shock that your body does this to itself!

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yes, i did probably over do it, now that you mention it. Thanks for your input. I've been competing in triathlons for years and went out with "my cycling buddies". They don't know my condition and I don't understand this condition. I stayed with them, but it really really stressed the body.... No more of that. I have found that swimming is the best so far. It's really difficult to push swimming too hard cause your not fighting gravity as much. Running seems to get the heart rate up too much and it seems difficult to recover from it too... Again, I am glad I found this support group. I have so many questions... and looking thru many of the previous posts, there are quite a few answers. So, this is awesome...

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We all fall prey to the initial effects in our own way. I actually can't believe you kept with them! It may take a while to recover as the inflammation is rampant. I am sure you will get some more input once tbe uk wakes up and joins me...suffering insomnia at the moment!. I couldn't have survived without the advice and knowledge of members of this forum. Reading older messages is a great way to glean some of that but ask questions too. Hope you get a bit of rest and relief.

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Hey Poop, rest easy.... Again, thanks for your input. I'm not sure how to control this beast. I'm learning though. Too much is definitely bad. Too little is not too good either.... Seems like you've got to find the sweet spot.

Does anybody really know what actually causes the pain? inflammation inside the blood vessels within the muscles close to the trunk? This whole concept of the body fighting itself is difficult to understand. Kinda weird.....

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It is indeed kinda weird. There's no certainty as to tbe cause i am afraid. This is a general overview...

arthritis.org/about-arthrit...

There is no one single cause. Such discussions are had regularly here. It might help you to scroll down to the pinned posts and look at the stories those of us pmr have provided about our experience. Have you been told about the signs and symptoms of giant cell arteritis (GCA) by your dr? You just need to be aware of them as people with PMR are more likely to suffer GCA than "healthy" people. It can cause a loss of sight in one or both eyes so we all have a but of a panic from time to time about headaches etc. I am nit trying to scare you...just make you aware. 🌻

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Hi cmarichard

Welcome to our Group, sorry you’ve had to join!

So my first thoughts are, yes it sounds like PMR & l’m afraid you’ve fallen into the belief you were ‘better’ once you’d taken the Pred, don’t worry you are not alone! 😉

PMR responds beautifully to Pred, some getting total relief, like a Miracle Cure & then fall into the trap of ‘Yay, I’m Better’ & promptly return to ‘Normal Life’ however the Pred only mops up the inflammation, there is no cure as such for PMR, it’s a self limiting disease, ie it’ll burn itself out in its own time.

I always feel sorry for very active/ sports orientated people, as for them it’s a total change of their lifestyle & they find it difficult to rest, especially at first.

I’m guessing your an American ⚾️ so l’m going to forward you a link from Friday in case you missed it & l think you’ll find interesting.

My advice in the meantime is Rest, Rest, Rest, let the Pred do its work & go from there.

You’ve found an Excellent Group & as we in the U.K. wake up, you’ll get more replies

Take it Easy

Kind Regards

MrsN

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The link as promised

healthunlocked.com/pmrgcauk...

[piglette]

The fact that pred seems to have relieved the pain initially does seem to point to PMR. The pred suppresses the pain by reducing the inflammation, but remember you are still ill! PMR has a nasty habit of turning round and biting you if you overdo things. I think we all learn from experience the idiosyncrasies of PMR. I think one rule is if you start to feel you are overdoing things STOP IMMEDIATELY or you will suffer later.

[PMRpro Ambassador]

"The improvement rate has drastically dropped"

What do you mean? Have you rushed back to normal activities and overdone it? Pred cures nothing - it manages the inflammation and that is all. The actual autoimmune disorder is untouched by the pred and it chugs away in the background leaving your muscles intolerant of acute activity meaning you will develop delayed onset muscle soreness of the sort athletes in poor training develop and which lasts a lot longer. Do too much and you will know about it.

Most of the sportspeople I know who aren't totally floored (and you weren't) are able to continue their sport albeit at a lower level. Nick does - I hope he sees this and replies.

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Hey, Yes.... Until Prednizone, I was pretty much crippled. Within a week after taking prednizone, I was able to function during the daytime hours at about 80% normal and hurt like crazy between 0200 and 0830 (when the prednizone stops/starts working). You're absolutely correct, I am over doing it and it takes a few days of pretty nasty pain, then feel better again.. and BAMMM... With some troubleshooting, it seems some exercises stress the body more than others. I post on my findings if I can verify my assumptions in a few days.

[PMRpro Ambassador in reply to Hidden]

At the very least at first have alternate days off from activity to see how much you can tolerate. By building up very slowly you will get to a highish level - just the training takes a LONG time in comparison.

[Dream21]

For me, diagnosed at 56 years old, I had immediate relief. As time wore on the more limiting the disease became- stiff, exhaustion from getting out of a chair, etc. I have had PMR/GCA/FIBRO for 3 years. The last month I have felt more energy and the brain fog has lessened. Everyone is different. Some people still do more intense exercise and others have barely energy to get off the couch. I hope you have a milder experience.