What suggetions do you have for Polymyalgia rheumatica. Should I be exercising?
Hi judy, Stay logged into this forum and loads of us will give you very good advice and hopefully get you thru PMR but the simple answer to exercising is NO, only do what you feel you can do. Welcome to our club and good luck. Dave (tavidu)
Thanks!!
Hi Judy, you are just at the beginning of your journey. Please hang on in and you will get loads of support, advice and information, more so than you would from your gp and rheumatologist. Excercise at present, definitely a no no. You haven't said that you are taking steroids, or the dosage. Good luck and let us know how you are getting on. Regards Pat
Yes pat been taking steroids. Started out taking 10mg, now taking 5 mg. Can still feel the stiffness in the morning the most. More I move the better it gets. Then try to do thing and just don't have the energy. Hope this goes away soon.
Hi Judy, I am no expert on PMR I was diagnosed November '14 and was started on 20mg of pred (steroid) I am at present on 15mg and will be going down to 12.5mg on Monday. You're 10mg seems very low to start with I am sure the experts on the forum will agree. When I was taking the 20mg it was like a magic pill, after a few hours and then finally after a few days, the pain and stiffness was nearly gone. I just couldn't believe that these tiny wee pills could do so much. On a level of pain 0 to 10 10 being most painful I would definitely said 15 and I could never go back to that type of pain ever again. Couldn't get into bed, out of bed, couldn't turn in bed, It took me two and a half hours to shower and get dressed for a 8 minute car journey to my drs. My 33 year old son still lives at home, he doesn't drive, and I could never ever ask for help of a personal nature, I would pay for care. Please don't run away with yourself - because I was more or less pain free and felt better, I started to do wee things about the house. Well I paid the price, weak, dizzy, very sick, so you need to take it very easy and try and pace yourself. It does get better but only with rest and time and right dose of steroids. Keep hanging in there Judy. Pat
Hello judy. how long have you been on steroids 10mg then 5mg sounds a bit strange to me?? or am i not reading your post correct. Dave
Hi Judy.
I too was recently diagnosed with PMR in March. Fortunately I realized something was "really wrong" and I was able to get referred to a rheumatologist within a week.
Some background - I am 59 1/2. Very healthy and active, but somewhat sedentary at work. This PMR hit me like a train after 5 years of very non-stop high stress related to both work and family matters.
I I had blood work taken and my ESR was only 37 and the rest of my blood work normal. The doc wanted to start me on a high dose of prednisone and I refused due to a bad experience in my 20's where I was given pred for severe allergies and became horribly depressed. (I'm a very happy person by nature).
Howvever on March 3 I became unbelievably ill with pain and begged rheumy to give me anything that would help. She gave me a long-lasting steroid injection in both my left shoulder and right knee. There was enough systemic delivery to my system that all my severe shoulder/hip/knee pain went 90% away within 48 hours.
As the injections have begun wearing off I agreed to try 5MG oral pred daily. It was not "quite enough" to manage my pain/stiffness so I am now at 6MG daily, along with Tylenol as needed. I usually take 1000MG twice daily. This seems to be holding me in a good place for now.
I realize that I am extremely blessed to be managing on such a low dose, and I have no idea when the long-last injections completely wear off if I will be able to stay at this level. I do know that gentle exercise has been very important to my well being. Most days I am driving 10 minutes to the local gym at 05:30 am, I walk one hour or 3 miles on the treadmill. Then come home, shower, and go to work at a very stressful job. By about 3:00 PM I begin to "fade" but I do that with or without exercise. I do allow myself to skip a day here and there, but for the most part, I feel better on the days when I have had that gentle exercise than on the days that I have not.
I know everyone is different so you will need to find what works best for you. When this first hit me, I could barely walk or lift my arms, so exercise was out of the question.
I I hope you find relief soon. This is a horrible disease, and the remedy (pred) for some of us is nearly as horrid. I shudder to think of myself back on a high dose of the stuff.
Prayers and peace to you all that wellness comes soon.
Hi MaggiGrace, I, too, was diagnosed recently with PMR. Also very active. Initially, in mid-Dec. starting having serious pain in both shoulders. Had MRIs done which confirmed tears in both rotator cuffs plus other tendonoses and tendonites. Had shots in both shoulders, but only lasted about 2+ weeks. Eventually pain and sstiffness started in neck and hip gurdle. Thanks to my primary care doc, he did blood work which confirmed PMR. Been on 20mg of pred for past week which seems to help a lot. I have found that taking pred at 2am, which someone suggested seems to take morning pain and stiffness away. I have always been an avid runner and biker and have been using treadmill and my mounted bike inside 2-3 times/week. (Slower than usual, but I've heard that exeercise is good.) Feel good mentally and physically after I do it. Have first visit with rheumatologist on Apr. 29th. Will see where I go from there. This forum has armed me with much useful info to share with him. Sounds like you are doing well. Good luck!
Hi Judy,
I just started my journey with PMR. 20mg of pred has kept pain under control. I am trying to run and bike at least a few times a week. It has always been part of my life and I think because I've always been in good shape I can get away with it. Makes me feel like I have some control. I'll be seeing a Rheumatologist for the first time at end of month. Curious to see what his thaughts are. Good luck.
Hi Judy, I was just diagnosed with PMR I also am on 10 mg pred but I started of on the six day pred 20>10>10>5,5 and 5.I think this just reduced the inflamation a great deal and the 10 has kept it in check so far. It's just await and see sort of thing everyone reacts differently. This is a great site everyone is very supportive.
Ingo, this might be long journey for you. My symptoms started like yours, roatator cuff and tendonites. I got shots....did physical therapy for a frozen shoulder --- which did not help. Actually prednisone helped for pain and movement. Later on I started to have extreme back pain (girdle area), and I could not get out of bed because of severe muscle and nerve infammation. My GP put me on 40 mg of prednisone for 3 days and then a slow taper for a week until I reach 20. From then on ----to avoid another extremly painful flare ---I will reduce ONE mg of prednisone for a month. I am back to be able to go on bike for 10 minutes daily.....maybe tomorrow for 15. There is hope! I wish you good luck and no pain!
Right now taking 5 mg of steroids. 10mg cyclobenzaprine. Still experiencing stiffness in the morning. Gets somewhat better at night.
Yes David I did go from 10mg to 5mg. Still experiencing stiffness.
Erika, thanks for the encouragement. I'll know more when I meet with a rheumatologist at end of April. In the meantime I am managing with not too much pain. Only when I do certain movements. Get stiff at night and am. Not too bad by about 10am.
Thanks for the info. Hope all goes well with you. I have been taking the 5mg of steroids. I also take the extra strength Tylenol. I know I don't like the steroids, but what do you do. Can't live with the pain. Keep moving!!
Rheumys usually like to encourage fast reducing......which did not work for me until I found this wonderul and informative forum of fellow sufferers.
I made my mistakes, but now I have more knowledge about PMR which can be so painful. Prednisone does help, but we need to deal with the side effects which appear with longer intake of the steroids. It takes time to find the right dose to make you comfortable. All the best to you!
The other thing I forgot to mention - I am getting a massage once a week. I know this is expensive but it really does seem to help tremendously. I have the therapist focus on my back/shoulders/neck where my pain so the worst.
PMR causes the muscles to be acutely intolerant of exercise - they won't tell you that you have done too much and take much longer to recover afterwards. The other day I likened it to us looking at an olympic cyclist aiming to win - for us now just doing the cleaning is that sort of effort for our muscles. Movement is good yes but overdo it and you'll suffer the next day. Men, by the way, seem to experience PMR differently and many of them are able to continue exercising, albeit at a lower intensity, and also they tend to recover from PMR faster.
5mg is a very low dose and it will be grat if it lasts - but when I was first diagnosed I was given 15mg for 2 weeks, 10mg for 2 weeks and then 5mg for 2 weeks - brilliant at 15, good at 10 and I could have managed well at 5mg. Then. The 15mg seemed to clear out the existing inflammation - but who knows how long I could have managed at 5mg before it built up again. The rheumy stopped them after the 6 weeks and within 48 hours I was worse than before. It has taken 5 years to get to 5mg again - although in that time I have had a major flare.
I also found massage useful but others found it made them worse - I suspect because it released cytokines in trigger points inmuscles into the system - cytokines are the inflammatory substances that cause the pain and stiffness in the morning and are released about 4.30am. If you are having regular massage I think it is likely that these trigger spots are less likely to form as they are bieng "emptied" regularly.
Is 5mg giving you the same sort of effect as the 10mg did? You are looking for the lowest dose that manages to achieve the best result you have seen - otherwise there isn't a lot of point taking it at all.
Judy - I'm guessing you are based in the US? There seems to be a culture of getting off of preds as quick as possible - this may not be a good thing. It's worth remembering the preds cover the symptoms they do not 'cure' the PMR. If the dosage starts too low and then reduces quickly you will be back to where you started in no time, or possible worse. The under lining 'problem' is with the autoimmune system and this can take , at minimum, one year! In most cases 2 years and some a lot longer. Best of luck and welcome to the 'club'
Exercise - take it easy and don't think just because you feel better you can go back at the same level - you won't!