there is a way out of this painful, stiff PMR!

Dear friends, I was DX with PMR in February this year. I refused taking the prednisone. I take Advil 2 in morning, 2 in evening. Along with this, I changed the diet, I follow the Anthony William protocol, did research on anti-inflammatory food, I juice and my last sed rate went down by 30 points. I continue that way, I discovered delicious healthy way of living. And I have to add that I go to the swimming pool 3-4 times/week and gently exercices. Yes, there is still pain, stiffness, weather like rain, cold does affect but I keep positive and I know that I will be pain free and mobile as before soon!! Blessings to all!

27 Replies

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  • Don't generalise - quite apart from finding early on that neither pain killers nor anti-inflammatories touched the pain of PMR, along with many others I found that a swimming pool was impossible. Every muscle I had went into spasm at the touch of the cold water.

    Happy you have found something to help you, but for the rest of us steroids are a necessity, not a choice.

  • the pool I go to is heated at 92F. it is a therapeutic pool, I do not swim, I do gentle exercices. Believe me, I am in pain 24/7 I take a lot of anti-inflammatory the natural way: turmeric, pineapple etc....best to you!

  • Anthony Williams is a medical medium ! Selling his books , not for me . If 4 Advil a day is all that's needed , do not think it's PMR

  • Yes- I was thinking the same thing. My local doc prescribed Voltaren a prescription anti inflammatory - which dId not help at all- prednisone was the only thing that touched the pain and immobility.

  • Interesting to hear you have found a way to 'manage' your PMR pains without Pred. But please be aware, that you are only a very short way into PMR, and left untreated it MAY, not necessarily will, but may get a lot worse.

    Plus left untreated you do not know what other damage is being done to your body.

    If you can get through PMR without Pred then good on you. Many have started the journey like you, but have found they had to succumb to Pred eventually to maintain a liveable life. And as others have said, some of us had no choice but go the Pred route.

    Please keep us informed of how your illness, and you, progress.

  • Thank you DorsetLady!

    I possible wrote in a way that many of you believe that I am having light pain! Believe me, it is 24/7 Someday, my legs feels like a have 2 concrete blocks instead of legs, I cannot bend my knees in bed until I warm up. I sleep now with an electric blanket. I still refuse to take Prednisone, I prefer to increase. the help for my body own defense mechanism. I also go to a swimming pool heated at 92F. Juicing, etc, all combined has helped me. Best to you!

  • Hi health51,

    Having read all your replies I can see you are very determined to carry on your regime.

    As I said, that's your choice and if you can get through without Pred then fair enough. I'm sure in the past many have done that when it's not been diagnosed.

    Like many on here, mine was undiagnosed for 18months, during that time I had severe fatigue and pains 24/7 and unfortunately it morphed into GCA (that's my worry for you). It was only diagnosed when I attended A&E (ER) having already irretrievably lost sight in one eye.

    It took another 2 weeks for it to be confirmed that my other eye was okay. That was a very scary time - not something I would like anyone else to go through.

    So please be very aware of any sight irregularities and seek advice immediately.

  • I don't think it was a matter of you making light of your pain at least that's not how I read it. I think it was more of your higher than Mighty attitude about it. I think it was more of a I doing it better than you kind of an attitude. And I can tell you right now that I had started this disease while I was already on opiates for lower back pain and my opiates didn't touch the PMR pain. So I find it really hard to believe that you're NSAIDs made any kind of difference on PMR pain and my opiates made no difference at all. So I think we would all appreciate it if you would consider your situation different than our situation. As each person's PMR disease presents itself individually different as each person is different.

  • Hi,

    As you say, everybody's illness is different, and so is everybody's approach to it!

    Hopefully on this forum we can all appreciate other people's view and opinions, whether we agree or not.

    I see it as giving advice when requested, but how that is received, and acted upon by the questioner is entirely up to them.

  • Like the other 2 - if that was all that was required I'd have been cured too. If ordinary painkillers worked - it wasn't the PMR discussed here in the first place.

    And I "managed" for 5 years like that - I had access to a warm pool and aquafit classes I could afford. I couldn't swim, still couldn't. But I wouldn't class it as having "cured" it - and have had 2 massive flares since.

  • Why on earth would you not take tablets if you still have pain and stiffness? All I can say is that it really can't be that bad. Keep dreaming

  • health51 I am so glad you have been able to help the pain, however if an NSAID such as Advil helps it is unlikely you have PMR, unless it is a very very mild version. Also if you are able to go swimming three or four times a week makes it seem it is very mild. I had to stop swimming before I was diagnosed or I would never have got out of the swimming pool! Even now on pred I can only go two times a week as it takes a day or so to get over the exercise. When diagnosed I became a nutrition nerd but I could not have survived without pred. I could not even get dressed and even had trouble eating as the pain in my arms was so great.

  • I meant to add I think I am slightly sceptical of Anthony Williams' credentials. He has no medical training and claims to be in contact with spirits to help his diagnosis. I think I would prefer to find someone with a bit more basic knowledge of health.

    On the other hand he is incredibly good at promoting himself and getting people to buy his books for which he deserves congratulations.

  • I have more faith in him than any doctors I met. I am a retired nurse!!!!!

  • Hi there Piglette,

    I do have PMR. I am in pain 24/7 . I have difficulty walking, getting in/out of low cars, getting off the toilet, turning in bed, unable to have a full night sleep, I walk like a Pinguin . I lost weight, I get spasms in the back muscles, sitting is not helping etc... This started mid January 2017. I decided to change my diet, the sed rate was 80. By changing the diet, juicing veggies and fruits, greens etc....and for a month now, I am going to a swimming pool heated at 92F. It is a therapeutic pool. This also changed the mobility. It helped. I walked baby step to get from the parking lot inside but do it. So far, I see only positive results since , the sed rate was repeated and was down to 56 last week. I keep fighting day by day. I do have good support, encouragement and research the internet and I feel that I will get out of this !!!! I wish the best to each and everyone!

  • I do hope things go well for you. Your sed rate is still quite high, but hopefully that will reduce too. Do remember that by not taking steroids to reduce the inflammation PMR can cause damage to your body and also you may be more susceptible to GCA. If you do have eye problems check with your doctor immediately.

  • Lucky you health51 if you have a version of PMR that is livable with without steroids....that is if it is, in fact, PMR! I was totally immobilised and in agony with undiagnosed PMR spending several months in bed and attending rheumatology appointments by ambulance and wheelchair. Paracetamol and Ibuprofen did nothing, except for the latter attacking my sole kidney and leaving me with chronic kidney disease. The undiagnosed, therefore untreated, inflammation put me at higher risk of the linked condition, GCA, with its risk to eyesight. Unfortunately I eventually succumbed to that as well but luckily kept my eyesight - some are sadly not so lucky. The steroids are certainly not sweeties but thank Heavens for whoever invented them - they gave me back my life and saved my vision.

    I am always extolling the virtues of anti-inflammatory food to help with the pain/stiffness of PMR or any other inflammatory condition come to that.....but note "to help with", not to cure. Also be careful with your juicing if you're juicing fruit as you are at risk of too much sugar in your diet. The fibre of fruit and veg is far healthier than the juiced versions.

    I wish you well and please come back and let us know how you progress.

  • Celtic,

    this winter I was unable to remove the blankets from my body, getting out of bed was like trying to get out of concrete,, I still walk like a " Pinguin" due to the pain. The weather make things worse. I need an electric blanket. But , even with all this, I knew that Prednisone, decrease your immune system, It is like putting a band aid on a headache..I refused. that and turned to natural way... I am feeling so much better, yes, still having pain, but I see a change. I keep positive. and continue the juicing and avoiding food unhealthy, food causing inflammation!

  • I started with a esr over 100. I very much wanted to avoid Pred, but watching those elevated numbers kept me worrying about all that inflammation in my body. The Pred had it down to normal in 3 weeks. I also have changed my diet and have cut out as much "inflammation" from my life as possible. I picked my poison I guess. Now I'm dealing with tapering off Pred.. and hoping that my rate of tapering coincides with the tapering of the PMR.

    I hope your PMR responds continues to respond to your regimen. But please be watchful. This condition can blindside you.

  • "Prednisone is like putting a band aid on a headache". You couldn't be more wrong. That "headache" could be a symptom of GCA and without Pred could have devastating consequences: loss of eyesight, stroke etc.

    Each to their own choice but I know which choice I would make, and did make.

    I can only repeat that I wish you well with the choice that you have made, but please be aware that if that untreated inflammation of PMR should reach your arteries, in your head for instance (as happened to me), resulting in head pain or any problems with your vision, you will need to seek emergency treatment to avoid the devastating possible consequences to which I have referred.

  • You sound like you are in a happy place, long may it continue and blessings back to you.

    This is a nasty disease, you are in the early stages of it, never be too proud to admit you need a bit more help in the future. I hope that day never comes. Keep us posted.

  • sheffieldjane,

    I wrote a long note to Piglette. I do not think that I am in the early stage but healing stage of it. I go to a swimming pool, I am not swimming, but doing gentle exercices to " unfreeze" my muscles....yes, pain is the name of the game, stiffness. The pool is 92F. I could not go otherwise, I need warm. I sleep with electric blanket. The sed rate went from 80 to 56.

    This winter, I was taking 6 Advil/day, now 4 a day. Anyway, life is not easy but I cannot allow myself to think that I will be like this for long! It is already 4 months but I see hope, I walk better, mood is positive, appetite is normal. Anyway, each body is different, and the attitude also. Best to you.

  • Dear Health51

    I would say two months into an average six year journey doesn't really count as being out of the starting blocks but like everyone else on here I wish you well. Pleas feel free to ask for support or advice at any stage along your journey which will challenge you in more ways than you can imagine. As someone already mentioned please take immediate action if you experience temporal headache or sight disturbances. You will not be able to play with GCA if it starts to develop. It can cause blindness within days or even hours. I hope it continues to go well for you.

    Best wishes

  • Dear health51, I was thinking!! Perhaps if you did a trial of steroids for say two or three days you could stop immediately if you wanted, but at least then you could see if they gave you good improvement in the pain. I just feel so sorry for you going through pain 24/7 when you might find that you could really improve your quality of life.

  • It definitely sounds like you are on the up and up. I must have mis- read that you were diagnosed in February. Maybe that was someone else. You've got a great attitude, that definitely helps.I find it a challenge to keep it up, a bit like " don't look down or you'll fall" situation.

  • Hi Health51

    I certainly commend you on your alternative methods of taking care of your PMR. After my wife tried so many pain medications that were prescribed to her prior to her DX a year ago, and nothing having worked except Prednisone, there was no choice for her. I need to support her anyway I can even though these steroids may ultimately haunt her.

    Wish you the best!

    Joe

  • Hi Health51

    Like many others here I think you are actually taking a serious risk - but clearly you think its 'worth' it. I also felt very conflicted reading about all the possible side effects of Pred - but realised many of these can be managed and not everybody gets all of these anyway. I have been taking Pred now for 3 months - and since my PMR was followed by some GCA symptoms I am now on an even higher dose than initially. But so far so good - and at least I am not worried that my eyesight could be damaged - as my own mother's was decades ago when she was never diagnosed and in the end became partially blind. What really tipped the balance for me was reading how insidious GCA can be - not everyone gets the major outstanding symptoms - so as others have also warned be very vigilant about anything unusual and best of luck ...

    Rimmy

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