I wondered what people thought of acupuncture. I ask because I have been in the most dreadful place with pain from muscles to the point last week where I literally couldn't walk after getting up with the muscle spasms and the pain shot to the top. I have been under a physio on the NHS and could not do one of his suggestions as it just made everything worse. A friend suggested a place to go for acupuncture and I thought I had nothing to lose. She was very nice and certainly went to town on me, now covered in burst blood vessels! I went home and maybe a tiny bit of improvement, the next day it was worse and the following day the worse I have ever experienced. But Day 4, I woke up and nothing, well other than my usual hip/back issues I have had for 20 years. But no muscle spasms, pain minimal and can do all of the exercises I was given by the physio. Coincidence? Was it the acupuncture. And now I'm wondering if I should go back? I would love to know what others think.
Thoughts on Acupuncture: I wondered what people... - PMRGCAuk
Thoughts on Acupuncture
Acupuncture did nothing for me despite a number of visits whereas physiotherapy worked wonders. Our experiences are all different but I would say that if acupuncture is working for you then certainly carry on with that and also the exercises. The latter should be graded carefully so that you move forward sensibly. I saw a physio privately and she literally got me back on my feet with her supervised exercises. I gained confidence and ability particularly in terms of balance. Good luck.
sounds like you found a good physio
I was fortunate that she understood PMR.
Yes, that is important
I have used acupuncture (following gentle massage) in the past (but not for GCA no need) and found it helped.
As stated, it it works for you then why not…try it again and see what happens, then you know if it really is working or as you say just coincidence.
Yes, my sister is cynical, but maybe I should give it another go
You won’t really know from just one session….try it again, then you'll have a better idea.
I will, thank you
You won't lose anything by trying and you may indeed gain.
Absolutely
Not unusual for things to get worse before they get better. What/where were the symptoms?
Oh OK. It actually started in February with muscle problems on the right hip/side and down the front of my right leg but after falling in the forest in March while walking my dog it went to another level. Have been under the physio since Feb and was doing OK until the fall but since then it has got progressively worse. I seem to be OK walking in a straight line usually, but any turning movement sends spasms in my back/hip and literally can't move until it has subsided. Sleeping has been really hard particularly when I move. Carrying anything is tricky too so haven't been able to do any of the clearing out I had planned. I have always had a weaker right leg as that is my longer one and I am a little bit twisted with mild scoliosis so I think this seems to have just made the whole thing a lot worse. I did read that you can get muscle issues with Toc as well as Pred, so maybe I have a double whammy. I am waiting for an MRI as they suspected a hip fracture, but now I am so confused I don't know what to do.
If it were me, I'd want a good physio or orthopod (we do have some very good ones here) to consider greater trochanteric pain syndrome
physio-pedia.com/Greater_Tr...
Long read - but enlightening I think, I have found the clam shell exercise as described here:
yourphysio.org.uk/condition...
has improved things a lot - the exercises in the first link are in my dreams at my age and with PMR!!!!
I could tick off quite a few of those interestingly. So am I right to assume that the drugs have caused this. I also think I was wired at the start of taking pred after the three days of 1000mg infusion and then high doses of the tablets and think I overdid the exercise. It sounds like I am into exercise, I'm not at all, just walked everywhere, did pilates, stretches and walked a dog, but was all over the place in the initial stages and did stuff every morning. Clearly, now I have learnt, it should be at least every other day to give your muscles a chance. I need to strengthen my right leg as it is noticeably weaker. This club is a full time job managing all the symptoms! I still can't get the taper right with my dose, let alone this!
🙄
Thought you might - as can I!
No, not the drugs I don't think - mine has been there for a very long time and was an integral part of the PMR before pred. Pred helps me at higher doses but I can get lower when I get targeted treatment from pain clinic and physio, 800mg ibuprofen PLUS a hot water bottle is great - except in the current weather. HWBs don't go with 30+C temps!
I think this shows the PMR link
jrheum.org/content/jrheum/4...
though not as well as the seminar I attended years ago in Innsbruck by a German orthopod who had done work on the trigger points found in myofascial pain syndrome and showed they are concerntrations of IL-6, the same stuff as in PMR except they are systemic. Unfortunately I don't think it was published. MPS and GTPS and PMR are all very closely interlinked and need to be considered and managed together - which without Covid I had had, now it is all up in the air ...
Interesting, as I have not been diagnosed with PMR, just LVV, and I had never had this before, but as you say, these things can just come and leave with no logic.You'd have thought my toc would have helped me then!
But there is a physical element too, putting strain onto muscles and back muscles are very critically balanced anyway as they were never designed for standing upright. Like me, you have the leg length discrepancy and a scoliosis - and then you tripped. The finely balanced tension of your back muscles that was keeping it all in place was pushed sideways and they tightened to try to prevent further damage/pain. In doing so, they actually cause pain. It would happen to me just catching my head getting in the car! It was a similar case to you that ended up with me in hospital because I couldn't move at all - a couple of weeks after tripping and falling full length. It may not happen instantly.
Oh yes! That catching your neck thing, just hideous!!!What did they do for you in hospital?
I'm so nervous of falling due to my rubbish boned.
A really brilliant approach: an infusion in the morning of a high dose NSAID and corticosteroid and at night an infusion of diazepam as a muscle relaxant. Worked like a dream by next day. They do it for 3 days though - and after the second evening I went into a/fib which lasted about 4 or 5 hours and got to a HR of 230, They assumed it was the high dose steroid - but it happened the next night too and OH had already googled and discovered it is a known adverse effect of i.v. diazepam, However - I was already able to move and I was switched to the second line old-fashioned manual approach in the pain clinic. That keeps it in reasonable control though Covid and no pain clinic hasn't helped.
It did do me a favour though because the a/fib was thoroughly investigated and managed and I realised I'd had it as long as I'd had PMR so it was nothing to do with pred. Cardiologist says it is most likely due to the autoimmune part of PMR damaging the electrical cells in the heart and it is definitely worse if I flare.
Blimey, that was worrying. I am given diazepam when my back goes. But I am such a wimp with any medication stronger than an Ibuprofen that I take a quarter or occasionally a half. But any more and I can't cope with the palpitations and feeling so out of it the next day.
It's only i.v. apparently! Not sure I'd fancy it - that is the joy of having a really good physio department who will work to release the spasmed muscles by hand - very few side effects from medications!!
yes, I just need to find 'that' physio! I have spent a fortune on ones that are mediocre
Sports physios are often good
yes, good idea
"800mg ibuprofen PLUS a hot water bottle is great". I understood we should only use Paracetamol if on Prednisolone.
"Don't take anti-inflammatory painkillers (NSAIDs) like aspirin, ibuprofen or naproxen while you're taking prednisolone, unless they've been prescribed by your doctor. This type of painkiller may increase the risk of side effects on the gut, such as stomach ulceration and bleeding."10 Nov 2016
Prednisolone: interactions with other medicines - NetDoctor
Although......
"Paracetamol is a good painkiller, and is less likely to cause side-effects. Although paracetamol does not reduce inflammation, it is often the preferred painkiller for muscle and joint conditions that cause pain but have little inflammation. For example, osteoarthritis."9 Mar 2018
NSAIDs | Non-Steroidal Anti-Inflammatory Painkillers | Patient
It is approved by various rheumies for occasional use and many will use NSAIDs more than that providing the patient is taking stomach protection. I actually had a week of high dose i.v. NSAIDs for the same problem - which suggests to me that a single dose taken with food that lasts a good 24 hours and often resolves the problem entirely is OK.
I would use paracetamol - if it made the slightest difference, Which it doesn't. Unless it is administered by infusion. I did actually discuss it with the pharmacist recently - and they are told that single doses are acceptable. I wouldn't use it regularly.
Many thanks. I am on Omezaprole 20mg daily (with my Prednisolone). Apparently that is for stomach protection. I have also found that taking Paracetamol provides no relief to PMR aches and pain. I may pop out for a sackful of Ibuprofen and try your 800mg flood as much, much cheaper than acupuncture,
Very careful use should be OK ...
Best leave it 'til Monday as the leaflets recommend speaking to GP or Pharmacist before mixing Ibuprofen with Corticosteroids...booohoooo. Back to alcohol. ...and enormous 'thank yous' for all your help.
I'd try once - as I say, one lot and the HWB leaves me pain free for days!
I am back to using my hot water bottle for shoulders, lower back, and hips.....sigh. Must get a new hwb- or a few- to apply to all these aching zones.
The forecast for Sunday here is disgusting - cool and rain. May break out the HWB and ibuprofen 
LOL...how the other half lives! What joy. I hope to climb a small hill and eat some beef and blaeberries for Lammas. 
That takes me back!! Lammas Fair at St A's - and more recently in Inverkeithing ...
Acupuncture had no effect on my PMR whatsoever. I must admit if I were in your shoes I would just pack it in, but that is just me. Most people would probably give it another go.
I hear you!
Accupuncture worked for some problems for me . My Dr. always checks to make sure if it can help the problem. He also only continues if it is working.
Interesting, do you mean a medical doctor, or acupuncturist. I only ask as my GP gave me acupuncture in my neck when my husband was in hospital as I was spending every day for weeks hanging over his bed which was a bit like a cot due to his constant thrashing around. I was just permanently hunched for weeks and ended up in a bit of a state with my neck. I thought that really helped, hence my thinking going last week was worth a try.
Accupuncturist who was a MD in China
Nice
I tried a course of 6 treatments and I did feel better but… was I on the road to recovery anyway or did it just help to take some control?? Worth a try I think x
I will definitely make a second appt and then make a judgment call after that.
I had an nhs acupuncturist who helped my hip bursitis enormously. When the sessions ended went to another and he made it worse and tried to commit me to 6 expensive sessions. Depends on how good they are and where they put the needles.
This is exactly it isn't it. You need to go to the right person. Such a tricky choice.
Hi I had acupuncture a few years ago before my knee replacements and it DID work - it eased the pain enormously so reducing the pain killers I had to take . I used to go once a week for the first couple of months and then down to once a month. It certainly worked .
I am seriously thinking about it again as I have bursitis/ greater trochanteric pain syndrome in my left hip - I fell on it last May and it has been agony . I also fell on my right hip in April this year which put me in hospital for six days after tearing the hamstrings from the pelvis ( excruciatingly painful ) ; had to attend physio . Unfortunately the physio exercises aggravated the left hip & physio admitted she had not considered the PMR / bursitis problem in that hip whilst doing the exercises on my right leg !!!!! . Have had two steroid injections in left hip - the first one worked but the second one was not really effective at all . The good news is my right hip is now fully recovered.
Certainly carry on with any treatment that works for you and eases pain so giving a better quality of life . I think that PMR makes you realise that you do not know what tomorrow is bringing so make the most of today and if you can get a few days / weeks /months pain free ENJOY
😃
I have been having weekly acupuncture for the last 6 weeks with an acupuncturist who has been working with TCM for the last 30 years and teaches the subject. What I like about this modality (and these days it is quite painful - thinning skin) is that it works on the physical, emotional, mental and spiritual levels in the hands of a good practitioner. Pulse diagnosis is good measure of how the different organ systems are doing energetically which can be very useful and encouraging. Something is coming together in my system - there is more coherence - which is the bottom line for healing IMH. I write here as a now (thanks to PMR) retired Shiatsu and CST practitioner. The fact that the TCM approach has endured for several thousand years and indeed that the 5000 year old body of Otzi Man (found frozen in the Alps) had tattoos on his body that linked into points to heal his digestive and other issues, indicate that our ancestors were rather more intelligent than we give credit for and that there is a body of knowledge we should respect and give credit to. livescience.com/63682-otzi-...
Of course you are right - one needs a good practitioner. And rest afterwards to allow the healing/rebalancing to do its work.
Oh that is so interesting. I shall look up TCM right now, thank you
Good morning to you.
Yes I would,give it time to work and relax you.
I get on very well with having it,I am currently looking into having it done again,as I ve moved away from where I used to have it done.
It doesn’t work for everyone,I m one of the lucky ones.
Take care
R
Thank you. It definitely seems to be thing that works or doesn't for people. Nothing in the middle
Hi, I have tried a lot of different things for PMR over my 6 years. I personaly prefer Remedial Massage. I also don't eat most night shade foods or sauces that are tomato based.
I shall look that up in my area. Thank you.
Again - sports orientated practices may be useful
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