First off, I want to say hello. I'm thankful that I found what seems to be a very caring and informative group.
I haven't even officially been diagnosed yet. I have an appointment with a rheumatologist in 4 weeks. That seems like an eternity since I never get more than about 3 hours of sleep because of pain. Muscle pain started about six weeks ago. Really intensified over these past two weeks. My shoulders, groin area, and thighs are in pain 24/7. When I get out of bed in the morning, I can't even raise my arms. I feel like my muscles all turn to stone. When I sit in my office chair at work for more than an hour, I walk like I'm 80 years old when I get up. (I'm 56).
I've never had any kind of health issues other than a hernia 25 years ago and a ruptured elbow tendon 10 years ago.. I've lifted weights for 35 years. Assuming my blood work confirms that I have PMR, and they put me on Prednisone, will I be able to continue weight lifting? Will I have to be on Prednisone the rest of my life? I've heard prednisone does a very rapid and wonderful job of alleviating symptoms. Would you say that it returned your life to close to normal?
Sorry for all the questions. I'm a bit scared.
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Scooter4645
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Quite understandably you’re scared - nothing to be ashamed about there.
Presumably your GP - do you call them Primary care doctor? has referred you to Rheumy - might have been better if he’d given you a couple of weeks trial to see if Pred helped, but as you are in the US, male and only in 50 perhaps he wasn’t sure of a diagnosis.
But it most certainly sounds like PMR to me.
Hopefully you will return to normal activities, but not immediately, and weight lifting is usually one we don’t recommend - too much repetitive movement for PMR affected muscles - but never say never! Just not too quickly, and other exercise, in moderation, is good for your wellbeing.
Good news is, males usually fair better, and you're still quite young and fit, but you do have an underlying illness which can’t be ignored. Can last anywhere between 2-6 years on average, but only for life in very rare cases.
And maybe have a read of this, so you’ll have some idea of what’s ahead - and there’s always someone on here who can help - healthunlocked.com/pmrgcauk...
Thank you so much for the reply. Those links look very informative. I will have to give them a read.
Actually, I made my appointment with my primary care physician about 10 days ago. In the meantime, a friend of mine who is also a physician said I would have better luck with a rheumatologist. So I called him and made my appointment but it is still four weeks away. So I kept the appointment with the PCP. I am hopeful that I can get him to prescribe me the prednisone. But I never had much with luck primary doctors doing things like that. He will most likely tell me to wait till my rheumatologist appointment.
In the US the primary care doctors do seem to refer patients to specialists a lot more than our GPs do.
Whether that’s protocol or lack of knowledge I don’t know, but let’s hope he listens and prescribes meds - if only for a trial period. It would help Rheumy- and more importantly, you.
So sorry to hear you are suffering so much. Is your doc not happy to prescribe a short course of Pred to help diagnosis not least to help put another human being out of misery? ? Some docs are terrified of Pred and some even think it’s addictive so don’t want to give it unless they are told to. Lots of GP’s diagnose and treat PMR without involving a Rheumatologist and a week or two of Pred is not a lot. In people with normal blood results (does happen) a Pred trial is often the only way to make the decision.
If you do have PMR and Pred does help, which it should at the right dose, you will feel so much better. However, you will need to adjust to a new normal because the role of Pred is to stop the inflammation of the condition causing havoc, not a cure. With PMR the body is attacking certain blood vessels supplying some muscle groups and will stop when it’s ready which is a long term thing. The Pred is taken to clear up the inflammation and then hold it at bay at the lowest possible dose and you find that by reducing slowly and carefully.
The blood work is not a specific test for PMR. All it is, is a check on the inflammatory markers which are not specific to PMR. If they are raised, it adds to the body of evidence along with the symptoms that it is this autoimmune vasculitis. Many have normal blood work but it doesn’t mean they don’t have it; symptoms rule. Boils down to educated guesswork.
Doing weights? For now if you have PMR, not as you are used to doing them. As the muscles are being compromised they will be less tolerant of stress and strain and prone to damage. You have to build up really slowly and I found repetitive strain is not good. At the outset, rest and gentle movement is key.
If the Pred relieves the inflammation and the pain melts away many people go a bit mad with doing lots of jobs, exercise, work etc. Only to hit a brick wall in a day or so. The Pred doesn’t help this illusion because it can give you false go juice.
So, it is life changing but it does get better and there is a lot to learn. Right now, your pit of pain and insomnia is not acceptable and you need, perhaps with an advocate, to put pressure for some action from your referring doctor. If it is PMR, painkillers don’t help much even hefty ones.
Thank you. Yeah, I have only been pain free enough to go to the gym twice in the last two weeks. And both times I used super-light weights just so I could use my muscles. Hopefully it's not doing more damage. It's hard to get out of the mindset that I've had for 35 years where everything is resolved by working harder.
I'm sorry you have to wait - certainly what you describe is typical of PMR but PMR isn't really the disease itself, it is the name given to account for a set of symptoms and thre are several possible underlying causes of them. I assume you are in the USA? In the UK it is quite common for GPs/PCPs to make the diagnosis and initiate treatment with steroids - and a good response to a moderate dose of 15-20mg combined with the appropriate symptoms tends to be taken as confirmation of PMR. I know US PCPs are a bit less keen to take the responsibility. I was in the UK but the GP had no idea what I had - it started when I was still 51, I was diagnosed not long before my 57th birthday. Even so, the diagnosis was still a bit of a pigs ear - I worked out what it probably was but the GP still couldn't accept someone with normal blood results could have it. The rheumy wasn't a lot better - but a different GP thought it was PMR and continued the short course of pred I'd been on that gave me a miracle in under 6 hours. Blood work DOESN'T confirm PMR - they add to the evidence but about 1 in 5 have blood markers that remain within what is called "normal range" - and if your normal is low, a raised value for you might still be in range. Mine were.
About 1 in 5 patients is off pred in under a year, by 2 years it is a good third of patients, half get off pred at some point in up to about 6 years. So no, you have a good chance of being off pred at some point although the other half need a low dose of pred for longer, sometimes much longer.
Whether you get back to your previous level of exercise will depend on a lot of factors - but it is unlikely you will be able to seamlessly take up weights where you left off. But you may well manage to get back to it by starting with low weights and training slowly to get to higher weights again. But the pred only combats the inflammation - it doesn't do anything to the actual underlying disease process and that continues in the background, attacking your muscles and leaving them intolerant of acute exercise. Overdoing it will leave you with DOMS (delayed onset muscle soreness) which is worse than you expect and lasts longer than usual. And over time muscles and tendons may become easier to injure so it really does pay to be on the conservative side.
Thanks PMRpro. Very informative reply. Yes I am going to plead with my primary care physician tomorrow night to prescribe some low-dose prednisone. just to end the suffering I'm going through until my rheumatologist appointment on August 5th. Not feeling very confident though.
The last 4 days I have also noticed a very strong smell in my urine. when I look that up, it says most likely dehydration. But I've certainly not changed my fluid intake recently. So it would indicate something going on with my kidneys. Could that be related to PMR? Or do you think that's totally unrelated?
4 weeks is too long to wait in that kind of pain. Would your GP be prepared to try you on a start dose of Pred for a week or so? That would soon let them know if you were suffering from PMR and give you relief in the meantime. You will feel miles better but not be cured or normal. Pred deals with the inflammation, pain and stiffness but does not cure PMR. You will still have to work around a demanding disease and pace your activities. Your muscles will be very sensitive to over use so you may have to design weight bearing exercise that is less demanding for the duration. Good luck!
If you have PMR prednisalone should work - watch what you eat as it makes you hungry and pace exercise - everyone seems to be different on how long they take it - good luck
Hi, PMR is a weird one!!! Before I PMR I broke my shoulder and had physio after, wanted to get back to using weights and this was encouraged even though I had pain. When I was diagnosed with PMR I assumed the same was true and no pain no gain. However, the pain now is caused by inflammation and rheumatologist told me I needed to take care and not to over do the weights. Am tapering down and at 8 can do weights (not too heavy) 3 times a week, at 7 too much pain. With rheumatologist guidance I am staying at 8 for 3 months before trying to move down again
Hi Scooter, I too am in the US. Was 51 when symptoms developed. My PCP didn’t have a clue. The rheumatologist diagnosed me in 5 minutes before any blood tests! Most has been said already in regards to the disease. If it is PMR you will also want to get to know Pred and its side effects well. Most can be managed with some adjustments to diet and supplements such as calcium and Vit K. Also good to know that Pred long term can weaken tendons so another reason to be careful with weights. This is the best site for good information and support. Come back as often as you need!
I’ll only address the weight lifting portion of your question and let others address the rest.
I am a 71 year old male who has been suffering with this disease for almost two years, and also like to lift weights. I think initially, until you get the proper dose sorted and start to feel better, you should lay off the weights. I found that after a few months on prednisone, I was able to return to the gym and re-start my training, but at a much more cautious level. I tended to use machines instead of free weights, and the weight was much lower to begin with. I also did more cardio on stationary bikes and walking. Now that I am stuck at home, I walk, ride a bike, and lift light weights to try to maintain muscle strength. Remember, pred is catanolic, meaning they work against muscle growth. However, I have found that lifting sensibility, I was able to maintain an approximate level of fitness.
Also, you will have to watch carbs, AND calories to maintain your weight. Above all, DON’T OVERDO IT, or your muscles will let you know with more pain that you do not want or need.
So, best of luck on your journey and “new normal” that you will have to get used to. It will get better eventually.
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