I've been diagnosed for about 6 weeks now and am relatively okay and pain free on current dose of 15mg Pred. I am trying to carry on as normal - my GP is convinced that patients do better if they make the effort to continue their usual activities. Today, though, I did just 1.5 hours of light gardening using a kneeler and hand fork and I ended up barely able to walk. I kept thinking my legs would crumple any minute. They have to some extent recovered a bit but is this normal? Do I expect this every time I do anything physical? What should I do - just sit around? I do find this a puzzling disease. My inflammatory markers are as low as they could be and I know my GP is not convinced I even have this disease but I have seen a rheumatologist who did not question the diagnosis. Does the fact that I had this weakness after gardening confirm in any way that this is definitely pmr? I feel very confused about the whole thing and would really like to be sure.
Can this really be pmr?: I've been diagnosed for... - PMRGCAuk
Can this really be pmr?
Wait for the really experienced people to come in with a comment but yes..your experience is really typical. Fatigue after exercise with PMR is so common. . I would love your doctor to be right, but I think his take on PMR is not one that most sufferers would identify with.
Thanks Mary63. What I find so hard to cope with is not knowing. All those 'might be' and 'could be' rather than being able to say 'yep, the symptoms match so it's such and such'. Why do a percentage not have the markers? Why are the blood tests not reliable? It doesn't seem very scientific to me.
Sorry a bit more from me... My Esr and cvp were low levels but my pain symptoms are so much betteron steroids ..far
Fatigue is a different matter. ...and most of gratis down to pacing myself.
sorry 'gratis' should have read 'that is '
PMR limits our activities, especially in the beginning. It takes time to regain ability to do any activity. The best way is not to give up, but to pace yourself and do little at the time. Instead of 1.5 hours all at once, try 15-20 minutes of gardening a day and then gradually increase it. Same goes for any activity. After 10 months I can say that I am back at pre-PMR level of activity. It takes time.
PMR changes your life whether your GP accepts this or not. As you continue you will learn one of the the biggest problems is having a good day and doing too much so that for the next few you are totally knocked out. You have to pace yourself or pay the next day as you are sadly discovering. Read KAte's book and then give the GP a copy!
Before I knew of the limitations I would test it all the time. Ride my bike for less than a mile ok on day one but after 2 more days the 4th morning I needed my stick to walk. It sounds pretty typical to me what is happening to you. One other thing is the pacing of projects and instead of getting it all done you break ip your garden into plots n work only as many plots as you can without disabling yourself.
Today I vacuumed my small studio and did the laundry. Yah!
Once I started my attitude change... living with PMR and GCA has gotten a whole lot easier. The change started when I found this forum.
When my family and friends don't understand I am so grateful to have this forum to come n share., whine, cry then get onto my new life.
Graditude attitude.😜
it has been working for me...
God Bless
Thank you for your inspiration I myself diagnosed over a year ago struggle at different points, but family and friends do not necessarily understand and now that I found this forum it is helping me mentally!!!
Thank you Thank You Thank You!!!
Im diagnosed 2 half months or so now... 15mg beginning, it was like a miracle drug, went from unable to get out of bed for excruciating pain to pain free... Have had to learn the hard way also .. Had a flood in kitchen , im alone so cleared up mess, pain next morning trying to get up was bad... Am learning from the page.. This morning pain bad again, so guess i done too much cleaning yesterday.. Need to do a bit less Im learning from page .. hope you feel a bit better today..
I believe it does mean you have PMR . My blood test markers have come down except my ESR has always been around 30 . So I am trying to ween myself of these preds as my doctor and I do not believe I have this disease now .
Time will tell . Was diagnosed 2years ago . But only because of blood levels and shoulder pain which I have had for many years . It is weird this illness but you have to take things steady and slowly and do not over do it .
Good luck
Did you have a lot of pain, inhibiting your movements and then when you were given 15mg Prednisolone did the pain just lift over a period of 3 - 48 hours? Some people take a bit longer. And was the improvement 70% + ? Then yes, you have PMR.
Regardless if what your GP says, you do have to rest, you do have to pace yourself. You are not the person you were. Life as you knew it has changed and you gradually learn to accept it. If not you will have flares, a lot of pain and a lot of disappointment.
At the stage you are at you need to give the Prednisolone time to clear out the inflammation then you can slowly begin to reduce. Giving each new dose a month or longer to do its job.
The blood test result are merely a guide. After all your ESR can be raised when you have a cold! Your symptoms are key!
Good Luck! Read as much as you can. Come on here regularly, you will learn so much that will help you.
PS Personally I would believe the Rheumatologist. Your GP doesn't understand this complex condition.
My GP and rheumatologist said Pred is a pragmatic test, if they work miraculously it probably is PMR. ESR and CRP are not accurate guides. There is no definitive test for PMR.
I am finally off prednisone only after 18 months. I still have some pain, but bearable. I'd rather be off prednisone because it's caused a whole lot of other problems (high sugar, high blood pressure, weight gain), things I didn't have before PMR. My dr now says I have steroidal myopathy. My muscles are so weak that any long activity causes pain. I'm starting a physical therapy program tomorrow to try to gain back some muscle strength. I've always been very active (as most of us on here have), and I'm trying to accept the "new normal!"
Hi Carrot1,
Certainly sounds like PMR to me. You don't need to have raised blood markers, lots on here never had. Symptoms are the key, as others have said, and if your Rheumy says you have it, then he's the expert, so why question his expertise.
Your GP may want you to continue as normal, most of us wish we could, but unfortunately you can't! Your muscles take much longer to recuperate than pre PMR and Pred. So, as others have already said, do things, whether exercising or gardening or whatever in smaller chunks, and give yourself time to rest afterwards. That doesn't mean not doing things, but plan your activities better. And don't think, I just do another 10 minutes it won't make any difference - it will!
Good luck.
Hi, adding my 2 cents here. What u describe about legs giving out...well, that's been my experience also. After nearly collapsing in the market, I became one of those ladies who find the nearest shopping cart in the parking lot, and use it to get into the store. The shopping excursion generally was my big event of the day.
I refused the "walks" after dinner with friends, and their "short hikes" we're out of the question for me. The few times I went walking, I found I needed to sit down along the way, and then found myself in bed for two days after! Pain in hips and everywhere else.
I have always been the avid gardener, but with PMR, my gardening became a few baskets and pots on the patio. I don't mean to discourage you, things absolutely do get better....however for the immediate future, you will find your physical stamina and ability "pruned" severely!
My "markers" we're never raised, my diagnosis was based on my pain pattern and response to prednisone.
I read Kate Gilbert's book, and got plenty of answers about this quirky disorder.
To reassure you....., as others have said, this disorder is
life changing..... But not life threatening .
Your quick diagnosis may have prevented the horror of GCA potential vision loss.
All that being said, you will learn to say no to friends and family who don't understand what's happening with you. You will learn to pace yourself, and probably won't get excited about big shopping excursions (if that was your interest) your gardening will happen in short bursts, and the heavy projects will just have to wait! Even house cleaning will be in quick sessions.
My golden rule became A NAP. Every day, same time, no exceptions.
My lessons in the 3 years I've danced with my dragon:
The doctors are not experts on PMR, they just read about this disorder in a book; The real experts are on this forum, read back through past years, there are nuggets of brilliance all along the way;
You are going to get better;
Prednisone is your friend, but wields a mighty whip; take lots of time with tapers, your body needs slow but steady treatment;
Be patient with yourself, and don't feel guilty when well-meaning others are judgmental;
Take a nap! ...Everyday!
Kind regards, Jerri
Just my experience. Don't just sit around. You have to continue your your usual activities, if you don't, you'll get stiff but you must pace yourself with any activity. Start slowly and increase the amount of time as your body adjusts. It is very easy to overdo it. I didn't know when to quit and then I ended up in pain. Basically, my PT said: if it hurts don't do it, yet. Eventually, you'll be able to do more and more but everyone is different, so listen to your body.
Thank you all very much for your replies. Your responses make a lot of sense and I will bear in mind what you say. Little and not too often may have to become my mantra regarding physical activity. It's all too easy to think - I'll just finish this bit and then half an hour later you're still there. No, people often don't understand - my friends say that they are tired after gardening - it's our age they say. (The implication being that there is nothing wrong with me!) However, I didn't feel that way before pmr. I do find it quite frightening that a condition such as this can alter your life completely. When we are younger we are used to being indefatigable and expect it to continue ad infinitum.
You have all been very helpful and I'm so grateful.
You have me thinking now as this sounds EXACTLY like me - only I have fibromyalgia - or do I?????
"my GP is convinced that patients do better if they make the effort to continue their usual activities"
He is, is he? Bet he's never had PMR!
All the pred does is manage the inflammation that the underlying autoimmune cause of PMR causes - it does nothing about the tissue damage that autoimmune disorder is causing and your muscles remain intolerant of acute exercise. Abuse them, overdo it - and they will protest. You have to pace yourself, break up any activities into bite-sized pieces and rest in between - sometimes even for a day, not just an hour or two.
You have a new normal - and within that new normal you will be able to carry on doing things. Just at a much lower intensity and for shorter periods. I don't care WHAT your GP says...
I wish I understood the condition better but thanks for your comments. My GP was still hoping that the rheumatologist would come up with a different diagnosis when I saw him (the GP) last week but of course no letter re my appointment with the rheumatologist has yet come through. Obviously the typing pool is behind! The rheumatologist was going to suggest another couple of blood tests but I have no idea what they would be for. Interestingly, she asked me if anyone in my family had psoriasis. I presume there must be some connection - my father had it actually. Does anyone have any info on that?
People with one autoimmune disease very often have another as well. I've had skin allergies all my life and non-symptomatic sarcoidosis at least since my 30s. But the psoriasis in another family member doesn't mean you may have it, just that there's a family history of this type of disease.
One of the alternative possible diagnoses with PMR symptoms is psoriatric arthritis - and it can appear even without you yourself yet having a history of psoriasis so they are interested to know if it runs in the family. I had a rheumatologist who was determined I had anything but PMR - in the end we agreed to differ and a GP who WAS convinced enough of the diagnosis provided the pred but one of his options was PsA - you don't use pred to manage it, you use DMARDs so I suspect it has something to do with their terror of pred.
I imagine the rheumatologist might like to have a few of the more specialised blood tests done to shed a bit more light on the differential diagnosis without having to see you, order the tests and then see you again.
I found I could do everything I wanted when I started pred. My husband says I was like the Energizer bunny. I felt I was just catching up after over a year of pain. Mind you, my doctor hadn't told me I would be in this for the long haul; I thought three months after this miraculous cure and I'll be off pred and home free. But I did catch a cold, the first one I'd had in years (this was late June last year) and when I got a mosquito bite or something similar it developed into a strange painful lump, and generally my body wasn't behaving quite as I'd expected. The fatigue didn't hit me until months later as I tapered to a much lower dose, and although I've adapted to it, and it doesn't stop me from activity, I'm definitely no energetic anything nowadays. So as you can see, in this as in everything else, we all seem to be different.
I am tempted so often to have a few glasses of wine to help me feel better in the evening. Maybe this is not a good idea? It seems easier to ask for some help than soldier on alone.
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