I'm ten weeks into pmr...started with 20 with good relief but never pain free...every time I try to reduce to 17.5 I can't take the increase in pain...have tried alternate days and that doesn't work either..blood work also shows rheumatoid arthritis and osteoporosis in both hips diagnosed from recent bone density scan...also damage to lower back and upper neck with narrowing of spine in both areas...neurologist says surgery is too risky and might not even help...my back pain is unbearable at times...so my dilemma is I can't figure out what pain is from which medical problem..all my rheumatoid dr does is give me prendisone and Vicodin...I'm feeling like im just fighting a losing battle...pain management has offered steroid injections for back but I've shyed away due to a bad experience years ago...have lots of bone spurs in back and groin area and when they hit the Spurs I nearly jumped off the table...I'm so tired of all this pain in so many areas of my body...im going to try planet fitness tomorrow but don't know what to expect..all I can do is try...I don't really have much of a plan but I need to do something before I am totally disabled and end up in a wheelchair...I have almost no pain when I'm sitting but who wants to sit all the time..not me..I know this is long...please give me what advice u can...thank you
For a start you need to find a competent rheumatologist. If you probably have RA then you should be started with a DMARD to help with the RA pain since you can't tell which pain is the PMR and which is the RA. Methotrexate and other DMARDs don't work well in PMR - except for patients who also have RA. At present your doctor is treating just symptoms - inadequately. The pred will help the RA at higher doses but not in the same way as PMR.
In order to reduce try the slow reduction that is described in posts 4 and 5 (or thereabouts) of this thread on this forum:
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
You will find links to other useful sites in the first post - including to 2 medical reviews on PMR which may shed some light on your problems.
I dont know what planet fitness is - but if you have PMR do be very gentle and careful with exercise. Your muscles have become intolerant of acute exercise, they won't tell you if you are overdoing it and they will take a lot longer to recover - and what was a moderate amount of exercise for you before will make you feel as if you have run a marathon, or at least the 10km without training.
I would suggest trying Bowen therapy to see if any of the back pain is due to spasmed muscles - I was told I had untreatable low back pain by an orthopod, the pain clinic and cortisone injections plus using a technique called needling has dealt with that. Since you are unwilling to try the injections, try Bowen. Or discuss with the pain clinic where they are intending using the steroid injections - if it is into muscle they shouldn't be near the spurs which are on bone - because that is something that made a massive difference to my PMR and associated pain. PMR is often found alongside something called myofascial pain syndrome - and it responds well to steroid injections in muscle. However, for several years before PMR was diagnosed I used Bowen therapy very successfully and quite a few others on the forums also find it has a very positive effect in PMR and associated problems.
I know planet fitness. I wouldn't do that. find a physical therapist. they'll help you with gentle exercise that works with your body and doesn't overwork you. it really helped me. the exercises seem really silly at first. my 10 year old laughed at them, but they really built muscle on my body without excessive pain and they were gentle.
then you can go to a gym.
Having looked it up in the meantime - Lisa is absolutely right. The only thing in a gym that is really suitable for someone with PMR is aqua aerobics at YOUR level - not the usual level done at a gym, which probably means finding a class for seniors and starting very gently even at that. If you overdo it you risk spending days feeling sore and can even do real damage.
Or a Powerplate - if you can find a gym with one. I liked that and a friend with PMR also uses one a lot. They have been shown in medical studies to build muscle even in residents in carehomes who can't exercise.
You have identified your primary problem- you don't know which condition is causing each pain. As Eileen says, solving this is the priority, since the treatments are different.
You have also identified your other main problem- severe pain that is limiting your activity which is, in turn, making things worse. Another approach to pain, similar to Eileen's suggestion, would be a massage therapist. People certified with this specific title (in the US) are trained and certified and can detect and work on the trigger points associated with spasmed muscles. If the body is out of alignment (as mine is because of crooked and shortened limbs after an accident) or because you are compensating for other pain, the muscles can be stressed by the atypical demands on them.
The massage is NOT for the muscle and tendons affected by the PMR (though I found it helped secondarily stressed areas farther down my arms). It sounds like you have muscle pain in other places that may be helped.
Therapeutic massage is not a pleasant backrub! Pressure applied to the trigger points hurts but is very effective at breaking the cycle of pain that causes your body to react in a way that causes more pain. The pressure should be adjusted to the sensitivity so that it should not hurt too much. It may take several treatments.
You have the right attitude! You do not want to give in to using drugs and becoming inactive to avoid the pain. You need a proper diagnosis (or several), some non-drug pain relief (if possible), and a good physical therapist to halp you keep active. PTs often have much more practical knowledge about the body than MDs.
Best of luck.
Careful with massage when you have PMR though - I used it even with PMR but I was used to it and knew what to expect. You can very easily feel far worse rather than better - probably because it releases cytokines from the trigger spots and improves them but the release of the cytokines into the circulation causes a massive flare of PMR which can take a long time to get over. Some massage therapists won't touch someone with PMR, neither will many physiotherapists.
Personally - like snapperblue I love a good sports masage, sore muscles as a result or not but it is not for everyone, especially if they have PMR and have never had therapeutic massage before.
Sounds like my story ---- stuck on 20 prednisone ---- if I go lower, I am in trouble and I hurt --- upper shoulders and girdle back pain. It's tough!!! You got very good advice from everybody, as I can see ---- and I am following it also.
Physical Therapy has been helpful with certain expercises for my back, but NOT for my shoulders. They always hurt afterwards. I think, I will print out the valuable repsonses and show them to my therapist. They simply do not know PMR well enough although...... they say they have heard of it........ but don't fully understand what is involved in treating a person with PMR. The muscles should not be over trained with rubber bands and such.
I am a massage therapist, and also have PMR. It was devestating to my line of work. However, knowing that I should go to get massage was my salvation. I found in my case it helped the muscles involved with PMR as well as the other ones that got sucked into discomfort from other effects such as inactivity. As far as several treatments, I have found that the weekly massage, as well as weekly accupuncture has definately helped me manage my symptoms, and helped keep my spirits up. Of course I was accustomed to massage and it's effects. The important thing about that is to communicate to your massage therapist to lighten up if needed. I find that a medium amount of pressure is best for me, but even that was too much for my neck area, so she lightens up when working on my neck.