May have posted my comments in the wrong place initially – so I am reposting, hopefully, correctly.
Hi – haven’t written for a while, but I had read a post by Brenmel and it struck a chord. I have had PMR ‘officially’ since Oct. 2015 (14 mos.) – but I’m sure I had it for at least 3 – 4 months prior to my diagnosis. I have NEVER had an elevated ESR and the only reason I was diagnosed with PMR was a CRP of 9 (still a low score for PMR). My CRP has only risen above normal one other time – in June of this year, for some reason, it went up to 7. Otherwise, normal bloods.
Since I went down to 5mg Pred. and lower (now on 2.5), I have had excruciating lower back/hip pain (especially in morning and during the night – can’t roll over in bed. But also, often comes back in the evening). I have also had bouts of that debilitating fatigue. Because my blood markers have always been normal, my Rheumy has told me the back pain is due to old age and my lumbar OA.
Like Brenmel, prior to PMR, I had occasional aches and pains, but I was an active, energetic 68-69-year-old (I’m now 70), who never took a nap. I have asked, more than once, how could I have become so incapacitated in a year. No answer. But, I have given up trying to convince my Rheumy of my constant (every day – no relief) agonizing pain. He feels because of my normal bloods, I have no inflammation and therefore can’t have pain, except for what is caused by my old age.
Although, we can say in this forum, one’s symptoms should be the key to treatment, I live in the US and I don’t think our Doctors are as sophisticated (or interested) in PMR as they are in the UK. So, I put up with the pain and try to do what I can to live as normal a life as possible. I have tried many things, PT, NSAIDS, without relief.
However, in my desperation to find respite, I decided to try acupuncture. I have gone twice now. The first treatment seemed to make the pain worse, but the second treatment has given me cause for hope. I was able to turn over in bed at night, and although I still have morning pain, it has lessened. I go for a third treatment today and the acupuncturist is also going to work on the fatigue. Has anyone else tried acupuncture for PMR? If so, I would be very interested in hearing about your experience.
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Dinty123
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I did have acupuncture many years ago for slipped discs, and although it did nothing for the condition or pain, I slept like a baby for hours afterwards, which in itself is healing. So it would be something I would consider for PMR......depending on people's experiences.
Your rheumy is a bit of a pain isn't he - up to 20% of patients with PMR/GCA never have raised blood markers. Some GCA patients have no signs or symptoms at all until one morning they wake up blind. And how did he manage to diagnose you in the first place? Where the bloods don't help, the symptoms remain king.
I'd say you need to be back at least at 5mg and probably 6mg. But OTOH, if acupuncture works, hey ho.
It does occur to me that it COULD be myofascial pain syndrome as well - and the local pain clinic here in Italy uses needling techniques that resemble intramuscular stimulation or acupuncture which help me a lot. But the needling is done differently from acupuncture - it doesn't use meridians but looks for the trigger points and spasmed muscles.
So, no, haven't had acupuncture as such but needles do figure in my pain management!
Interesting what you have written about the above treatments, I have just returned from seeing a physio......requested by my doctor, because of more pain about a month ago.......I have since upped the pred, so it is masking it more now.......when I asked about Bursitis, Myofascial pain ect, she said, wait for it........they are temporary treatments that help on the day only.........we do not offer that here, only a sheet of exercises to follow, but my advice to you with PMR.....is to get an exercise bike!! Nothing surprises me anymore. 😕
I have been forbidden to use a bike - unless it is a reclining one - BECAUSE of my back problems.
Yet another reason not to return to the UK and its disapproval of complementary therapies. Luckily, it works for me for quite some time so I'll keep using it!
Honestly, too many doctors have no idea how drained people become when on cortisone therapy, no idea of the fatigue. Or of the danger when you push yourself too hard. I was long a gym-bunny, but after starting PMR and cortisone found I could barely walk out of there after a short, not intense period on the recumbent bike. The trainer told me to get a letter from my doctor telling them of my diagnosis and treatment and the gym would be give me a 3 month credit from from subscriptions, which could be renewed for another 3 months if I remained the same. The doctor tersely refused and told me "No! You should go to the gym every day and really push yourself." Despite my protestations he refused to listen. The answer is, do only what you know you are capable of doing. Never tried acupuncture.
Me too......but there are many I could wish that on........I told her with PMR fatigue is a main symptom......she said do what you can, we all get tired!!. . .....
I almost go to appointments now expecting ignorance, how sad is that.....
The only reason he diagnosed me with PMR was at that time I had a mildly elevated CRP (9) - Since then, no elevated anything (except for this June - my CRP went up to 7). Otherwise normal blood markers. My Rheumy says that people who have PMR but no raised markers are very rare. I don't think he wants to consider it or deal with it - maybe it requires more documentation (Docs over in the USA have to justify, in writing, any thing that goes outside the standard protocol - or else they lose points or something). He minimizes my symptoms. So yes, he's a bit of a pain.
Not sure what myofascial pain syndrome is - but thanks, I'll look into it.
Just to say that my GP didn't want to accept I had PMR because my CRP and ESR were 'normal'. When pushed he did admit he had another lady in his care who also had no raised markers. He sent me to a rheumatologist as 'atypical', who quite simply stated, it happens sometimes, she does not know why.
Could be that DOCTORS ACCEPTING that people have PMR with no raised markers are 'very rare'. The same argument could be put forward for people under 50. If it looks like a duck and quacks like a duck........lets pretend it's a goose because you don't fit the criteria!
i in 5 very rare? If he says so. But once you are on pred your markers SHOULD be normal: the pred wipes up the inflammation, no inflammation means the liver doesn't produce the proteins in response to raise the levels.
Yes, but when you have no inflammation time after time, and the Doc keeps decreasing the pred. down to 2.5mg - and still no raised markers, I think the Rheumy figures, 'why raise the pred? - it's doing its job'. Therefore, I think, he thinks, the pain is old age and has nothing to do with the decreased prednisone.
My point is - if you don't have raised markers at any point, even pre-pred, it is the symptoms you have to go by. If they come back, it is possibly PMR. If they go away with a bit more pred - it is PMR. If they don't - it's probably old age. Or something else.
Just had normal blood work so the Dr. is putting pressure on me to taper. It took 25mg to initially quiet down symptoms this past June and I have recently struggled to get to 14. Back at 16 and staying put for a month. Pain still comes and goes. Why does her pressure influence me? I really know better.
My rheumy very quickly diagnosed that the PMR had gone into remission but I now have mild fibromyalgia, this was based on good blood results and symptoms of lower back pain, he prescribed a low dose of amytriptaline. Some months on, the fibromyalgia is not really a problem and have stopped taking amytriptaline. The only apparent symptoms are a slight numbness/tingling in the right foot. The amytriptaline is supposed to prevent sleepnessness which is another symptom of FM. The best outcome has been since stopping steroids have lost 4 stone in weight and back to circuit training etc. the answer was cutting out carbs completely out of my diet and I feel very lucky.
I did have a few acupuncture treatments when I slipped a disc or two. It was part of gp to practice at that time. I only had about 4 treatments on back and left leg. The first 3 really helped but the fourth coincided with a massive back spasm. Fortunately I had surgery the following week. I have lifelong fear of needles so getting half a dozen stuck in me was hard first time but didn't feel much of anything when they put them in. I
was in so much pain I couldn't care less at the time. Sods law that a needle phobic person ends up injecting insulin twice a day.
I must admit acupuncture had absolutely no effect on me at all. Apart from the fact that they banged the table down on my leg by mistake and I had a nasty bruise. I had two goes at it.
I have found acupuncture really helpful. It loosens things up. It's not a quick fix though as you do need to commit to a series of treatments. Also find a good acupuncturist
I think alternative treatments along side of the prednisone are the way to go. The medication takes care of the inflammation but there are more symptoms to deal with. I used CranioSacral Therapy for the depression/malaise. Helped the fatigue a little but in general just made me feel more like myself. I use massage by a gal with training in releasing those myofacial knots. I really think I'd be on a higher dose if I didn't. I was originally diagnosed by a physiatrist who is trained in osteopathic manipulation so she was ok with the CranioSacral Therapy which is controversial. I don't believe it can do everything it claims but it made me feel better so I go with it. I'm also a bit phobic about needles so I haven't tried acupuncture. Has anyone tried Reiki?
I have only recently been provisionally diagnosed with PMR because of symptoms (mainly neck) and ESR 116 with CRP 185!! I'm now stabilised at 15mg prednisolone (down from 30mg originally, three weeks ago). Whilst waiting for a GP apppointment I had accupuncture (5 elements accupuncture not Traditional Chinese Medicine). The two are different.
Although my career was in conventional medicine I am a firm believer in things meta-physical and holistic. I found the treatments helpful and felt "balanced" and more "in harmony" afterwards and wonder if this is why my journey so far hasn't been too bad? I also practice yoga and meditation. My accupuncturist did say one of my channels was blocked and would require another release. Interestingly the block is at the level of grief and letting go of the past (one of the things which I believe caused this problem for me.)
Likewise, Reiki is also an energy based system of healing so might be worth a try.
I realise all this sounds a bit New Age and many readers will immediately shy away from such an idea, but I can only pass on my personal experience. Listen to your body, try to understand what it is trying to tell you. If it works for you, do it. Anything which reduces our reliance on drugs has got to be worth a try.
I tried acupuncture years ago for a pain in my bottom! The procedure was a strange sensation across my lower back but not painful or unpleasant; but not effective for me. A McTiminoney Chiropractor was. I see one now, and find her technique gentle, not aggressive and effective, seeing her every 5 weeks about. She also treats dogs and horses!!
I was a nurse but like you believe in a holistic approach. Paid for counselling as non medical and refreshing as she, Margaret offered us to work as a team. Well worth 2 years though friends thought me silly. We finished our work together in November this year.
Also was amazingly offered and had 15 sessions of one to one CBT. Very fortunate with my therapist. Different approach again, requiring serious challenging of validity of low mood and finding really evidence or not to support validity or not. good theory, not easy to practice when I was very low.
Decided years and years on anti depressants could actually be working against me, so did a withdrawal month long programme. GP had a new one lined up and prescribed but I didn't start and have not needed to.
GP heard me say how stiff and painful I was becoming and did blood tests - CPR 75 initially, so Pred 15mg. daily and then CPR down to 24. At 5 Pred reduced to 13mg. daily. Next blood test Tuesday.
Everything has turned on its head with all these changes, and Pred. The desert is in bloom after a long long drought! Admitting to myself just what a bomb had blitzed my life when my partner died, and the resulting crater left for me to deal with on my own, whatever other peoples' perceptions are has helped enormously. I know even craters grow grass over them in time! It has given me permission to realise just how devastating loss and bereavement of all kinds is; how individual , real and alright to find hugely difficult to live through but do it anyway.
I have done accupunture in Canada with a really skilled and experienced practitioner. It helps me! It is not a cure but it helps with the stiffness and the side effects of tve prednisone. If I don't go regularly I notice a negative difference!
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