My story so far

Hello Everone,

Thank you so much for all the helpful advice and the insight you have all given me into PMR. My story started with aches in my pelvis Dec 2014. Felt stiffness moving from sitting to standing. Over then next few weeks muscles in the groin and at the back of the knees started to get my attention! Trouble lifting my legs, difficulty climbing steps. Turning in bed and getting out of bed became challenging. Then stiffness across my upper back by mid Jan followed my stiff shoulders. No pain at all unlike most people it seems. Immediate diagnosis by Doctor followed by blood tests end Jan ESR 54 & CRP 25 confirmed what she suspected. Tiredness accompanied all of the above. I was reluctant to go on steroids. The Doctor supported me with the understanding that any signs of headaches or sore scalp would have me return to the clinic immediately.

I researched anti- inflammatory foods, visited a herbalist and started a series of acupuncture treatments. Over Feb March and April I continued with theses treatments. The herbalist prescribed 4 herbs She advised no tomatoes, cut back on potatoes, only fruits recommended were blueberries,kiwis, melons and bananas. she advised I see either an amatsu practitioner or a cranial osteopath to clear and blockages in the body and check alignment. The acupuncturist sees PMR as dampness in the body and advised warming foods, cut back on dairy, drink hot water, keep warm, wear a scarf, use a hot water bottle. In the early months of PMR I was cold all the time. I lost a lot of weight because of the changes to my diet but also because of the PMR. I looked at stress in my life looked at how " busy I was" and have tried to rebalance all of that. I was lucky in that I was able to cut back on work hours however my job is in management so there is a lot of responsibility and I have tended to have poor boundaries in place between work and home. I also am a volunteer tai chi instructor and sit on a number of committees. I had been very "busy" on that front too.

My ESR And CRP had risen somewhat end Feb but my end March they had started to fall. By April my family began to see an improvement in my mobility. Stiffness and tiredness were the two hallmarks with the stiffness being much worse on my left side. Left arm had a very minimal range of movement. Left knee also much stiffer than right knee.Regular Epsom salts baths helped. I took the month of May of work and went to spain for three weeks. I think the rest really helped but it also became apparent to me how low my energy levels were and how much rest I needed. By mid June things were disimproving. Arms were getting weaker. Walking was slower. Standing up more exhausting. Blood tests end June showed inflammation had increased substantially ESR now 120 and CRP 63. Also my haemoglobin count was dropping.

The doctor was alarmed. I started on steroids immediately. Because of the increase in the inflammation She wanted to start me on 40mg to zap the inflammation. I took her advice. 6 hours after taking the medication all stiffness was gone. The tendons and muscles of left side of my body had tightened due to the stiffness and I have been working steadily with the acupuncturist and through my tai chi practice to loosen this tightness. It is now back to normal. Blood test end July showed ESR 13 and CRP 1. I am now on 20 mg and all is going well. I am continuing with my complementary path. It is so much easier to tackle diet etc when not exhausted and stiff.

The main side effect from the steroids so far have been interrupted sleep and over the past couple of weeks this seems to have regulated itself. My movement is completely normal. I know the fatigue is underlying all the time and I am not overdoing things. So far so good.

Just wanted to say hello and share my story as I have spent quite a lot of time over the past months reading yours. I would encourage anyone newly diagnosed not to be afraid of steroids. I think they are a necessary part of the journey. However it is also important to look at what caused the immune system to go out of control and that means a holistic approach where lifestyle,diet, rest etc all form part of the treatment package. Thanks everyone for helping me along this path. I turned 60 this year. PMR has been a wake up call for me - my body literally trying to slow me down. I got my attention. I am listening and as a result have started to change habits that neede changing. I am now permanently happy as I can move again after being stiff for so long, I know there is a long journey ahead and I intend to be a tortoise on that path as I drop down to lower doses. . Wishing you all the best. Geraldine

3 Replies

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  • Iridino, you beat me, I took just over fifteen hours for a miracle to happen when I first took the steroids. I beat you on ESR (127) and CRP (123) though! I don't think I could have carried on as you did before steroids. I could hardly move when I started them. I know two homeopaths with PMR who would have been horrified at taking steroids, but both are now on them. They are a wonder drug. It is just unfortunate that they have some nasty side effects. As you say one advantage of PMR is that it does make you slow down and look at life differently. I have also become a lot more interested in food types and learnt to relax more, so there is a silver lining.

  • I found your post very helpful. As I read the first half, with all the changes you were prepared to make to your lifestyle and diet, I was dreading that you might have been cured and I was just lazy to take steroids! Thanks for being so honest and I am full of admiration for your dedication to changing your behaviour in pursuit of health.

    But steroids are the solution to this illness and life-saving/sight-saving in GCA.

    I have pursued the psychological route,wondering whether this might have been caused by unforgiveness/self-hatred/lack of spirituality etc and can report that despite a thorough house-cleaning and a year of therapy I still have GCA so steroids are still the answer!

    We are so lucky to have them. I would be dead without them I feel certain.

  • I am so pleased that your GP was so alarmed, left untreated PMR, its big sister GCA cna and does come along.

    The risk of trying to avoid pred is one I would not recommend to anyone diagnosed with PMR.

    Yes, the Tortoise won the Race.

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