I’ve been living with the condition for approx 18 months now, and from what I read here my experience is pretty standard; in fact, I’m probably getting off lightly compared to some. I almost managed to taper to no pred, but had a (possible) mild flare a couple of months ago which has responded well to a temporary increase in dose. I’m also on lansoprazole, and I take vit D. I had a bone scan when first diagnosed and my bone density was good. I’m 71, and I keep myself active despite some osteoarthritis; I’m also a bit overweight and under long term treatment for mild hypertension.
I’m keen to find natural/non-pharmaceutical ways to manage my health, and I wondered whether others had any advice on diet or lifestyle? I notice quite a lot of reference to magnesium supplements.
Thank you
Written by
calibriel
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Magnesium supplements are really only needed if you suffer cramps or your diet is deficient to prevent cramps developing.
There isn't really anything I would say except cutting simple and processed carbs and added sugar as much as you can. Sugar is proinflammatory and quite a few people find that a few days "treating" themselves to carbs - Christmas for example - can leave them feeling quite uncomfortable, even unwell. But pred also leads to weight gain - cutting carbs seems to help a lot there. And it also helps avoid developing steroid-induced diabetes.
I’m interested in what you say about cramps, and wondering whether that is actually something I occasionally suffer from. I didn’t pick up on it at first because I think of them as spasms, but I suppose that’s the same thing. Is it something that happens with PMR, and is there more about it somewhere on the site? Thank you
It can happen with PMR even without pred - it did to me, But it also happens due to pred depleting magnesium or other ions like calcium or potassium, Magnesium is common and easy to test - that's why doctors here start with that,
There is quite a range of approaches one could adopt, from small interventions to major lifestyle changes. It's probably best to focus on one thing at a time not least so that one can gauge how helpful it is. I would recommend starting with sleep hygiene and healthy eating (which in our case starts with a low carb diet). Moderate exercise, such as simple joint rotations and daily walks, would be next and then one can look at adding other things such as supplements, cold showers, intermittent fasting, meditation, Pilates, Nordic Walking, Tai Chi etc. There is no shortage of ideas from different members on this forum, but ultimately, you need to find something that suits your personality and circumstances.
Actually, I’m not too far off doing the cold showers: the thing I’ve really missed over the pandemic has been swimming regularly. Of course no-one went to the pool during the first UK lockdown, and since then I’ve taken it up again a couple of times for a few months, and then stopped again when there was a new variant and figures were high: just getting back to swimming again now. Although I try to replace it with other exercises, I do feel I stiffen up when I’m not swimming. I’m not sure whether it’s significant that my first PMR crisis came when I’d not been swimming for several months in 2020.
I couldn't cope with temps in the pool under about 28C after PMR developed - I just seized up entirely! And that was doing a VERY active aquafit programme. Even now, wearing a kneelength padded coat and long legged underpants my thigh muscles just go solid in the cold if there is a bit of wind and I can barely walk.
I am actually doing them and have been since September 2020. It is just for a minute or two at the end of my normal shower. It started with only a few seconds and I had to use my imagination a lot to get through it. Now it's a lot easier, though it is harder in winter when the cold water is colder and psychologically we crave warmth. 🥶
Hi calabria.Lots of excellent advice on diet & exercise already offered. Just wanted to say don't forget to take care of your skin, hair and nails also. Skin can become much more fragile when on steroids and tends to bruise more easily and takes longer to heal when wounded. It also can become very dry so try to use gentle bath & shower gels and moisturise daily with something that also nourishes the skin too. (Several brands on offer in that well known High Street pharmacy!)
I regularly use nail oil to prevent my nails becoming brittle and weak and use gentle shampoo & conditioner with natural ingredients to nourish my hair. Little things can make a big difference.
Also check out Bob and Brad the most famous physiotherapists on the internet. You tube. They deal with all sorts of problems in a gentle way highly recommended
Hello calibriel, I was very fearful when PMR came into my life thatI would have to give up my passion which is driving my pony in a carriage and caring for him and my dogs, but physical activity has kept me going throughout the five years and has been good for my mental and physical health. And weight bearing exercise is better for bone health than swimming I’m afraid, so keep up the walking.As for diet I gave up meat after reading that intensively reared grain fed meat is high in inflammatory Omega 6, but I can’t say it made any difference to my pain or energy. Caffeine has an almost instant effect on my pain, which is a nuisance because it is also a useful pick-me-up when energy levels are low. I take kefir with my morning pred, again I haven’t noticed any significant difference.
And I’m still enjoying some refined carbs but have lost all self control and dare not have any in the house. Cold showers, not for me thanks.
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