PMR -what helps

Hi, I'm a 60 year old woman who's just been diagnosed with PMR. What can I do to help myself? Does Acupuncture help?

Does physio help?

Are there any supplements I should take?

I've been prescribed 15mg Prednisolone by my GP.

Any advice would be great.

Also I have very sore feet that are swollen by the Achilles Tendon and the ankle -is this normal?

Regards

Maria

33 Replies

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  • Hi and welcome - you have already got the one thing that really helps PMR: prednisolone. Have you already taken your first dose or are you waiting for tomorrow morning? You should notice a big difference quite quickly - but don't rush off to do all the things you haven't been able to do since the PMR started. If you do the PMR will turn round a bite back.

    Whatever you read on the internet, there are no supplements that will make much difference although your doctor should have also given you a prescription for calcium and vit d supplements (Calceos or AdCal are usual). Adding calcium to the diet of people on pred has been shown to reduce the likelihood of developing osteoporosis - although your GP should also send you for a dexascan in the next few months to see your bone density status. If it is fairly good you don't need more than calcium and vit D unless your bone density deteriorates over the next 2 years when you need a repeat scan to check.

    A couple of people have said acupuncture helped them - more have said it didn't. Physio doesn't - unless done VERY carefully by a physio experienced in working with PMR as the repetitive exercises/actions often used are poison in PMR. The underlying autoimmune disorder that is the cause of the symptoms we call PMR leaves your muscles intolerant of acute exercise and they tire more easily and recover more slowly than normal. What is important is pacing yourself and resting appropriately - and by doing that you will probably achieve more. walk further if you do 3x 10 mins than 30 mins straight off for example.

    The sore and swollen feet are often part of PMR and should improve with the pred although it may take a few months.

    patient.info/forums/discuss...

    This link takes you to a PMRGCA forum on another website and in the post you will find links to a whole range of "further reading" including the parent charity for this site and for the other PMRGCAUK charities sites which also have lots of info on them. It saves me writing them all out! Have a look round that and this forum and then come and ask more questions. Someone will always try to answer.

  • Dear PMRpro,

    Thank you so much for all your help -it makes me feel like I'm not alone. I'll definitely ask for the Calcium and Vitamin D tablets. Thanks for the link.

    Regards

    Maria

  • Maria, I am sorry you have got PMR. When I was diagnosed I gave up gluten and simple carbs as I had read that would stop me getting a moon face from the steroids. It did work, but it may just have been flook. I have tried acupuncture and cupping which were a total waste of time in my case, in fact the cupping made the PMR worse. I do have physio for sciatica, the physio I have has had several people with PMR over the years, so knows not to overdo things. The one thing that I find helps is a warm shower on my shoulders. I also go swimming and use the jacuzzi and hot tubs. I bought one of those things you put in the microwave and then can put around your shoulders, which also helped. It really depends how bad your shoulders are. The other thing I have is leg and foot massage which I love. The only trouble is the spa I go to has had a fire, so is shut for the time being, but opens again in a couple of weeks thank goodness. As PMRPro says pred and vit D with calcium is all you really need and then pamper yourself.

  • Dear Piglette -i'll definitely try and avoid gluten. (Boo hoo -no bread!!!)

    I really appreciate you taking the time and trouble to respond.

    Regards

    Maria

  • You can always buy gluten free bread, it is everywhere nowadays. Personally I think it tastes disgusting. My cleaning lady tells me there are some very good Italian rolls around too.

  • Hi Maria,

    welcome - and good advice from PMRpro, as always.

    The best thing YOU can do, is gather as much info as possible, rest as much as possible, come to terms with what you've got, and get your friends and family educated about PMR - that last one might be the most difficult!

    Take care, and come back with any questions, or just if you're feeling a bit down - there's always someone who has been what you're going through, and hopefully can help you.

    Last, but not least, retain a sense of humour - some days you're surely gonna need it!

  • Dear Dorsetlady,

    Thank you for your support- I've taken on board all your advice.

    Regards

    Maria

  • Maria, hello and welcome! The others have already given you great advice. There is also a book available both direct from PMRGCAuk and on Amazon that many people, especially those newly diagnosed, find very helpful. 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide' by Kate Gilbert. Copies are available by emailing pmrgcauk.com, and all royalties from the sale are donated to the Charity.

  • Thanks -I'll order the book right away!

  • If you have difficulty explaining PMR to the family the northeast of England website has a DVD called "You are not alone" which is designed to explain and stars patients, physios and doctors. They also have a booklet.

  • Hi

    Everyone has given good advice

    It is really taking time to yourself and taking care of yourself

    Put yourself first and let others do more

    As the more you do the worse you will feel.

    I find Arnica bath soak helps with some of the aches ,and use lashings of arnica gel again to help with slight aches and pains when trying to reduce preds .

    When reducing don't hurry it take your time

    just love yourself a bit more

    Rose

  • The only way I can rest at night is to rub Voltral cream wherever needed, place a V pillow between knees & ankles & drape my right arm over another pillow.

  • I have regular acupuncture which has always helped for my other ailments but didn't work for PMR although I know as part of my regular treatment my acupuncturist treats my liver in case steroids affect it.

    However what worked amazingly even after just one session was Bowen Therapy. Fatigue and muscle weakness dramatically improved and that horrible anger I felt at no longer being able to do the energetic pastimes I love has gone, helping me to accept the situation and get on with this new way of life. I now have a session every three weeks and who cares if it's a placebo if it works! Even my scientific sceptical husband accepts it's had a dramatic effect. If it hasn't helped in three sessions it's not going to work. Good luck.

  • Hello Maria, it's a bewildering world when first diagnosed with PMR, isn't it... hopefully the pred will work its magic quickly and you'll feel a lot better physically.

    As a former rusher-arounder I found it difficult mentally to adjust my pace, however six months down the road I realise that taking control of how you deal with PMR is important for avoiding depression and the 'why me' thoughts. I, too, found Bowen therapy a real benefit, I've had 3 sessions and will go back for top-ups every now and then - it isn't only the physical treatment but the sense of taking the decision to do something positive for yourself that is powerful. I also go swimming twice a week with a session in the steam room .. wonderful in these grey days!

    it doesn't have to be all pills and blood tests, that's the framework to manage the condition - I hope you find some enjoyable things to do that make life more fun and comfortable both mentally and physically :-)

  • Hi Maria,

    I'm not going to comment on pmr- you already have excellent advice from those who know better than I.

    However, on gluten free, we have lots of experience with breads. Yes, as someone said, some of it tastes yucky; the best of the supermarket breads, in our opinion, is Genius, which is generally available, but, if you're happy to bake your own, do try Provena's Gluten free oat bread mix, as to me this tastes almost better than " normal" bread! You can buy it online from Holland & Barrett. It comes from Finland.

    Do hope your pmr journey is not too bad. I have survived a year of it now, and am down to 8mg daily. Patience is the key!

    Good luck.

  • Hi, I have found a glass of fresh orange juice occasionally helps also an alkiline diet , little red meat

    I found a bread recipe called "The Life-Changing Loaf of Bread. / My New Roots. mynewroots.org I haven't bought a shop loaf of bread since and only have about 2 slices a day as it is so filling. -- nut seeds and rolled oats.. My family love it too.

    Have lots of rest and no stress! I have had PMR for 20 mths down to 3 sometimes 4 mg pred. Life is slowly getting back to normal. I found walking swinging my arms helped too. All the best.

  • I looked at "The Life-Changing Loaf of Bread. This recipe is flourless!, and

    sounds delicious. I am going to have to try the recipe. Thanks for sharing this site,

  • What I have learned from this forum

    Be kind to yourself--you did nothing to get PMR

    Accept that it is life changing

    Be kind to yourself and rest as you need to

    Understand the pay it forward deal, if you overdo it you pay the next day

    Be positive life changing not life threatening and carry on living life

    Teach others about it including your GP and Rheumy!

    Learn to love steroids and don't rush to get off them, dead slow nearly stop method

    Share with others your tips for surviving

    Remember it will end!

  • All good advice.

    I personally find that a near to total abstainance of all simple Carbs helps.

    I also take (as well as the obligatory calcium and vit D) cQ10, extract of green lipped muscle, zink, magnesium and taurine. So far I have experienced no increase in BP and very minor weight gain. The only time I have noticed weight increase is eating cheese. I now make my own low fat yogurt (then I know exactly what is in it) pastry, bread, pasta, rice & potatoes are all on the banned list now. I also try to avoid, where possible, the nightshade fruits and vegetables. If you are unsure what these are, Google will help.

    Good luck.

    Brian.

  • Dear Brian -thanks for the tips. I'm overwhelmed by the support from fellow sufferers.

    Regards

    Maria

  • Hi Maria,

    The people in this forum afr just the best. Another self care and relaxing activity when you are hurting is an Epsom salt bath. Add 1-2 cups of Epsom salts to your bath water. Add 20 drops of lavender or peppermint essential oil to the water.

    Relax in this warmth for 20-30 minutes. Enjoy! I wish you the best.

  • I like that kind of soak, too. Have everything ready to just fall into bed afterwards and go to sleep!

  • Ask your GP to refer you to a Rheumatologist!

  • Try 1 tablespoon Organic Cyder vinegar once a day, dilute with water, It might help you. It has me/ Don't stop taking your prednisolone and come off it very very very slowly.

    Good luck

  • Sounds horrible, but I'll give it a go!

    Regards

    Maria

  • I did experience very sore Achilles tendon's in both legs for months, then it finally cleared up. My rheumatologist of course said it didn't have anything to do with PMR, chalked it up to arthritis, also blamed arthritis for the sore hands and wrists ... all cleared up in time...all seem to be shared symptoms with other who suffer with PMR. I would ask the Dr. if it is arthritis why does it come out of the blue and go away suddenly also. No answers. To help my Achilles I would use ice packs on them at least twice a day. Best wishes to you...glad you found this forum without it a sufferer could feel very alone.

  • Merck -thanks for the advice -i'll definitely try ice on my Achilles tendons.

    Regards

    Maria

  • I find massage, swimming and jacuzzi helps. Supplements -I take vital d and calcium

  • Thanks Elaine -I'm on a massive learning curve.

    Regards

    Maria

  • Hi, just wanted to pop in to say it doesn't need to be all gloom and doom. I was diagnosed 13months ago after three monthis in which I felt about 100. Couldn't work out why I'd aged in a week! However, Pred worked its magic in hours and I have continued exactly as before. I run my own very busy business so couldn't slow down, I also have a lively dog who needs a minimum of three miles brisk walking a day. I haven't changed what I do at all, just worked through it. Gone down to 2mg Pred in text book style. ,month by month, and while I have the odd twinge, it basically hasn't affected what I do. I had the Achilled tendon problem, but ignored it and it went away.

    I am well aware that many of this forum have had a very different experience from me and I count my blessings that I've been very lucky, but, honestly, PMR isn't always the massive life-changer that it sometimes appears. Of course, for some it is and I think maybe they post more because they suffer much more.

    Please don't shout at me! I'm just passing on my own experience in case it helps.

  • SHOUT AT YOU? lol ... never.

    I think if someone has PMR and GCA then there is a greater chance of relapses because if we get GCR symptoms again then the Pred is increased because of the dangers to eyesight. Also, with both ailments, we are started off on very large doses from 40 to 60mg sometimes more, so there are more side effects and reduction takes longer.

    But I am glad you have done so well, keep up the good recovery.

  • Yes, I count myself very lucky - PMR alone is a very different beast from the PMR / GCA combination. Just wanted to share that sometimes things aren't quite as disastrous as they seem at first!

  • Dear Lyn - thanks for the uplift - you've given me hope!

    Regards

    Maria

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