A few weeks before Christmas 2019, 2 days on the run I had walked the stiff 5 miles from the local town to home though the second day I I felt far wearier then I should have done.
The next morning I couldn't bend to put on my socks so excruciating was the pain at the tops of my inside thighs both sides.
A week later, my first GP insisted it was a sports injury. I said 'I've been playing sport since I could walk; this is not a sports injury". "oh well I'll give you some anti-anti-inflammatories then" "no thanks".
A week later, fortunately, I saw a different GP who tested my hips and thought they were ok (I do have lovely hips) so she arranged blood tests. When I went back to discuss results she diagnosed "with 99% certainty" pmr, especially as my hips X-ray showed they were in good condition.
She gave me a prescription for normal pred 20 mg per day. As it was evening I took half a dose and blissfully the pain had subsided before bedtime.
I was ecstatic. I I had my life back, which has ever featured sport and exercise.
I am 76 male 6 ft 2 and when diagnosed 13 stone 9 lbs
I devoured loads of info from the internet so as to be both aware and prepared. I took the decision I wasn't going to lie down but I was going to maintain an exercise regime to or just beyond my tolerance boundary.
So I got into the habit of walking a mile and a half or 2 Into the woods, collecting a couple of logs for the open fire, hefting them home then doing 20 minutes on the water rower while I was warmed up.
3 weeks ago the woods took their revenge I leaned on a rotten branch about to saw a log, the branch broke I I pitched forward and tore muscle in my buttock.
I covered the mile home foot by foot. I recovered quicker than expected (maybe the steroids helped) and this weekend I bought a second-hand bike from a deserving local charity and for the last 3 days I've cycled 8 to 10 miles then water rowed 15 or 20 minutes. I'm definitely not what I used to be (I've had to get off and walk up some Hills I should have managed ) but for everyday tasks my energy levels are fine.
I'm down to 12.5 milligrams and this morning I'm 13 stone 4
I'm hoping this doesn't sound cocky or boastful - I'm just hoping 2 give you pause and cause for thought as i have been so lucky.
Thanks to everybody for all the helpful posts which have been a godsend to me. I think I'll give my first GP the website address!
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Legsy0714
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I think your regime for managing our condition is commendable. A good level of physical fitness as a background has to help everything. You will be avoiding muscular weakness that comes alongside steroid use. Self care does mean pacing yourself and listening to your body. If it ain’t broke, don’t fix it. We are unique in our response to autoimmune disease and what you do will be impossible for a number of us though.
Sorry to hear you have the old PMR please, please be mindful that Pred only dampens down the inflammatory symptoms but the real issues chug along in the background, so take it steady.
Wishing you all the best with your regime & it’s great you can maintain your fitness.
Yes, this is an amazing forum, I am blessed to have found it. I also have maintained an exercise habit, I walk 5 miles a day and lift a few weights. The first month I was diagnosed I ordered a book on eating and autoimmune. I have lost 10 pounds. I do think it has all helped but I still have to remember there is something flaming in me and stay chill with life.
Well it makes me feel exhausted reading about all your physical activity,well done for not giving in to PMR .The GP trying to pass your pain off as a sports injury is unfortunately just what a GPtold my husband when he had bad shoulder pain,a pulled muscle !He should have sent him to A&E,he struggled on pain killers for a week,went back again to GP,again he said it was a pulled muscle.,by that time my husband had suffered a major heart attack and still the GP did not realise ,by the time he finally went to A&E his heart was badly damaged.It is sometimes best to work things out ourselves,after all we are the ones who know exactly how we feel,especially when tapering the pred,it is not always much help when a GP tells us to lower the dose too quickly.l did ask my husband ,could it be your heart? but he believed the GP was right.I hope you continue to enjoy your outdoor activities,half an hour gardening is enough for me !
Thanks Grants. So sorry for your husband's probably avoidable heart attack and hope he's asfit as possible in your loving care. Thanks for kind comments. The best to you.
Walking into the woods, collecting logs and hefting them home for the fire. Sounds like you live on a Disney set. You are doing great and pmr seems to affect men differently to women. Don't be too tough on yourself though with the exercise. Pmr can rear up when you least expect it.
Pred makes us very vulnerable to tendon and muscular injury, and it can happen just making the bed, lifting a pitcher of water, or bending over to pick something up from the floor. Therefore, we should always be prepared to handle such events.
If you're hiking or biking alone, make sure you have a charged cell phone, and restrict yourself to areas where there is reliable service. Then you can call for help instead of trying to tromp through the woods with a torn butt muscle for miles and miles, potentially worsening the injury.
If you're going along with someone else, make sure you are the pace setter. This is no time for competitive events. You can challenge yourself, but don't rise to the challenge of someone else.
Pred makes us lose more magnesium (and other ions) through the kidneys and low magnesium can be the cause of cramps. Try magnesium supplements - but don't overdo it as they can have a laxative effect.
I have been struggling to maintain magnesium levels for ages and have had a variety of different sorts as they produce the side effects you mention. My Rheumatologist said to try Magnesium Glycerophosphate
mag 97.2mg 4 mmol Apparently that’s what the Gastroenterologists recommend. It works for me and I don’t have any side effects.🥂🥂
I get pure magnesium tablets from the Pharmacy. I originally bought them to help my migraine with aura. Did not realise their other effects. Thanks for that.
My daughter who is a nutritionist got me two products I mix with low sugar orange juice before I exercise. They are called MAGsmart and Natural Calm (magnesium citrate powder). So far so good!
Good advice from Good_Grief. Sometimes it’s hard not to over exert if you’re in a class such as Pilates as others are more flexible and stronger but if you’ve a good teacher who is aware of your condition, you should feel confident enough to go at your own pace. It’s important not to compete with others.
Well done ! I thought you’d like to hear that since I’ve had PMR (2.5 year) I’ve learned how to do front crawl and yesterday I did 40 mins swimming followed by a Pilates class then I cycled to my localtown centre. I’m on 3 mg of pred. I got to 2.5 mg before I was ready and had to go back up to 3.5 mg . I do have to be careful I don’t overuse my muscles which can be a challenge but feel so much better especially after swimming. Good luck with your progress!
I know what you mean! Since I was diagnosed 18 months ago I’ve been quite good at doing exercises (squats, planks, sit ups etc) every day. Cycle about 25 miles twice a week. Have taken up yoga, which helps. Some days are better than others and muscles just don’t want to play ball, but I’ve found pushing through worth it, slowing down, resting more and lots of stretching.
Still had a good season’S skiing, but can’t do all day every day like I used to (I’m 73).
Take it easy. There’s a temptation to think you’ve got it cracked and then get fed up when you realise you haven’t. Got down to 5mg per day about 2 months ago, but couldn’t cope. Doc put me back to 12.5 and I’m now on 7 but 6 it’s becoming a challenge.
When I look at what problems others seem to have I, like you, feel a fraud until I wake up and am reminded I’ve still got it as soon as I get out of bed.
My wife and children worry about me cycling and skiing alone, so I usually find a companion. I take a phone always and make sure my ICE details are up to date.
Inspirational approach thanks Pym. You are a flag bearer! You are so right. The body gives us messages. I will take notice of it and of your advice. Thank you.
I'm really glad your OK . I don't want to be a spoil sport but you should definitely listen to this carefully.
I'm very very similar to you ie a 6ft 2inch male. Another total indestructible Rambo as in professionally qualified mountaineering instructor, climbing rate above 1000 ft in 15 min and extreme rock climber. I have diced with dead more times than I can remember.
If you read some of my first posts you can even read the same feeling I had about PMR as you have.
I don t care if this sounds bossy. Be careful don't push it too far, back off a little bit your 76 years old.
I am 65 years old and my PMR went to GCA just be careful. I'm not saying what your doing will make this happen but easing off a little bit especially if you feel any pain anywhere will do no harm.
Thanks for this warning, im sure it applies to both Leggsy and me. These days I’m happy to walk up 1000’ an hour!! I’ll think of you next week when I’m skiing under the Eigernordwand. ⛷
I am busy but pretty lazy and have bad feet (extensor tendonitis) so first thing I walk like Frankenstein. Motion is lotion. Got to keep moving. Thanks and keep going.
Good on you. Have you thought about a pedal machine worked by your hands? Squeeze grips for hand strength? Low weights for round wrists or ankles (leg raises from sitting)? Cycle/rowing machines? Or simple things in house - step ups on bottom stair, using food cans (full!) As weights to raise and lower eg
First, I am 91 years old as of last January 17th. Have always been very active, competitive runner, tennis hiking etc. Diagnosed with PMR last December. I had thought symptoms earlier were due to age. Have gone from 20mg to 6mg. I set myself levels of improvement. Exercise is very important. I have finally touched my toes again while in hot shower. Yesterday walked for 35 minutes along river at good pace over grass, pebbles and uneven dirt. I celebrate each small achievement, glass of wine with dinner. I have a goal. I used to travel overseas at least once a year. To do that again, I want to be able to walk at least 3 miles without stopping. Your story encourages me.
Bloody hell. Your story gobsmacks me 😱so where will you go on hols? Wonderful walks on miles and miles of empty beaches on Portugal's Atlantic coast. I did the Camino along it. Fabulous.
Depends on you and your PMR - I've had it for 15 years and been on pred for 11 of them. I haven't fallen apart, have no identifiable adverse effects and live a reasonable life. But 1 year is enough for maybe 1 in 5 patients - is he going to leave everyone else in pain, disabled and unhappy?
Well, this is exactly my question, who knows how I will react, if not my Doctor, or I have to find out by trail and error ? Or look at all your people life’s with what dosis you manage, long-standing or short lived and back to the higher level of Prednisone and
hope to have the same success ( more or less) with good luck what you have.
A lot of positive wishes, and now to hear
more conflicting “opinions “by specialized Doctors, what is best, low
dosis or nothing, is more confusing.
Thanks for your site, at least, there are so many different outcomes, that I take the
courage to try myself another combination,
probably somebody tried this before??
It’s great to hear about successful outcomes,
In life’s with PMR, in whatever form, it’s a struggle in the unknown, we need a better medication, and a better support by the leading Rheumatologist association, maybe
Bear in mind your doctor is working on the theory he has learned at med school. And it is not often a fit to reality. There are good rheumies in the field - I suppose mine is one of them.
It is interesting that the few former GPs who have joined the forums when they developed PMR have without exception half apologised for how they had treated their patients with PMR!!
After 2 years of careful tapering, I am down to 2.5mg. Had hoped to go lower during the last 2 months, however, I am having my aortic heart valve repaired on Thursday, so am being cautious. I hope you are doing well. Listen to the Moderators on this site !
Thanks for posting your successes and challenges. So nice to hear that you’re getting along well and are able to continue physical activity. Others have written helpful responses regarding being mindful to pace activity and the risk of tearing tendons, etc. I’ve thrown in a few comments too.
I manage deep water exercises in the pool a couple times a week, but alas my walking is limited as I await knee replacement surgery, but with knee injections I’m afforded more mobility.
I also changed my diet and lost 30 pounds without totally eliminating any of the major food groups (low carbs, sugar, salt), and I remain a carnivore (bbq steak is my favourite).
Keep up the great work and wishing you a continued smooth ride!
When it becomes warmer I can exercise in the pool at my son, Leslie, and his wife, Emily Jade, home. Just 15 minute drive from my house. I am trying to be careful. To-day sun shining and warm, making it very tempting to go walking. Instead I have had my hair cut, bought a house warming gift and plan to do "stuff" around the house and prune some bushes. Thanks for the good wishes,
Legsy that is impressive and inspiring, as are the other stories above. It encourages me! I remember how despairing I was before I even knew I had PMR as I could barely climb anymore and that was so depressing as I am in heaven when I reach the top of a mountain in Maine/New Hampshire where I go every summer. I was in tears when I first couldn't do it. Last summer it took forever, but I still reached the summit and that was my goal. So yes, staying as physically active as possible is my drive too. I'm 67 and just rode the stationary bike (no resistance which felt wierd) the day after hip surgery (doctor's orders). Today my doctor said I need to continue to follow her protocol and NOT push it (my tendency) so my hip (gluteous medius repair and bursectomy) will heal. Slow go that!
Thanks Arty. Your obvious drive and determination will see you through. Delighted the thread has lifted people as inspiring stories have emerged, especially 91years young Noosat!
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