I'm curious as to what your days with PMR look like. What have you discovered is reasonable to expect of yourself? Have you happened on an amount and type of exercise that helps with symptoms without aggravating them? What do you do when you feel depressed? What other things have you found that make coping with the disease a little easier? How is your family doing with regards to your situation? Are you managing to work outside the home with PMR?
My story: PMR was the diagnosis almost two years ago at age 49. 40mg of prednisone brought great relief within 12 hours. Once the temporal artery biopsy showed no signs of GCA I was allowed to discontinue prednisone, since I was desperate to stay off of it. A PMR acquaintance had strongly encouraged me to try to do without prednisone as a result of his very bad experiences. I succumbed to prednisone in order to attend a three day conference and it took four months to get off of it. In those four months I gained 15 pounds and developed osteopenia. Now, I manage pain with a combination of percocet, acetaminophen and naproxen sodium taken all taken at once. My pharmacist helped me figure this out and my doctor agreed. I also take a reasonable amount of nutritional supplements. krill oil and Zyflamend are the important, not so common components I settled on after trying lots of really expensive things. I also juice vegetables on a regular basis. My pain levels are usually in the 4-6 range, but can increase dramatically depending on the usual suspects—lack of sleep, weather, too many simple carbohydrates, stress, or for no apparent reason at all.
Thank you for taking the time to post. I am eager to learn.
Hello, I've new to this forum, although I found it about a week ago and have read a lot of the posts. I find everyone's comments so helpful - thank you all.
I was diagnosed in mid december 06 - the symptoms started in late November following a flu jab. I started on 40mg of pred, and had immediate improvement, and I'm now working my way down the dose. I'm currently on 9mg and due to go to 8mg tomorrow.
I'm 59, and I retired from full time work last April. I still do 2 part time jobs. I mark exam papers, which means concentrated effort to hit deadlines when I have a batch to do, but they have to be done at home so I can pace myself and choose my own time. I also tutor an Open University course (I'm in the UK), but the tutorials are in the evening and I can do the marking when I want. This being able to pick my time has been crucial over the last few weeks as my brain is like cotton wool in a morning. It has got a bit better as I've gone down the dose, but really I'm fit for nothing until lunchtime.
The same applies to physical stuff as well. If I try to do anything physical in the morning I wipe myself out for the day, and also bring on hot sweats which leave me dripping. So the housework gets left, and the dog only gets a short walk in the morning. By afternoon, I'm fine - brain fully in gear, and able to walk the dog 2/3 miles - so that is what I do most afternoons. My Dr said that walking is probably the best exercise as it's weightbearing, which will help prevent the osteoporosis. I'm fine in the evening as well. I do need a lot of sleep though -I'm usually asleep by 11pm and wake at about 8am.
I'm lucky that I retired as I don't think that I could have coped with getiing up at 6am and getting home at 6pm to put in a full day at work (I used to teach in a large secondary school).
A pain free day to you all
Margaret
Margaret, thanks for the post. It is validating to hear from others encountering similar things. Like you, I pay dearly the next day after doing too much. When symptoms first hit in February 2005, I resigned from my job in a non-profit organization because I was the essential staff and they had to have someone who could get around. Volunteer work allows me to do things at my own pace and when my body, brain and psyche are more willing to cooperate.
Do you actually sleep all through the night or do you find that you toss and turn from the pain? I have more energy and a little less pain since being put on a CPAP for sleep apnea. (I probably needed it decades ago due to constant ear, nose and throat infections in early childhood.) Pain meds keep me awake and so does pain, so that’s a challenge. Sleep meds have helped in the past, but then there are so many issues with those to consider. I’m really trying to have a body left once PMR has run its course.
Physical exercise is tough to figure out. I always overdo and if I don’t overdo, I’m certain I haven’t done enough. I’m in the U.S. Midwest and we’re experiencing an extended period of single digit temperatures, so I am relegated to the NordicTrack or the elliptical machine. When it’s warm enough I can manage a walk with our two little dogs. They are always so happy to be out and about that they keep me going…and help pull me along sometimes.
I’ve been battling PMR without support from others dealing
with the same disease for almost two years, so it is wonderful to have
this forum for much needed reality checks. My family struggles with the dramatic
change in my health. They want so much to be able to help me feel better. And I wish they didn't have to see me this way.
By the way, Sparky, is a nickname from when my husband and I were dating and now my granddaughter uses it.
Apologies for this post, turned epistle!
Hi Sparky
Thanks for the response.
I sleep through the night - it would take a bomb going off to wake me! I think I'm very fortunate as I gather from this forum that lots of people have difficulty sleeping. The pred is controlling the pain, so that doesn't keep me awake, unlike before diagnosis when I couldn't turn over in bed without being in acute pain. Before PMR I would usually wake at least once in the night, but not at the moment.
One thing I forgot in my first post - I've gone completely off alcohol. I used to have a whisky or a glass of wine in the evening, but I haven't had any since mid-december as it makes me feel awful the day after. has anyone else had this effect?
The cold temperatures certainly won't be helping you get out and walk. I'm in the north west of England. It's been quite warm until now, but it's snowed today further south and the whole country has ground to a halt, as we always do when we get a couple of inches of snow. I your dogs are anything like mine, they won't go out if they think it's too cold.
Keep well
Margaret