I was diagnosed with PMR in 2013 after taking several trips to doctors and finally a Rheumatologist and put on a high dose of steroids. Like nearly everyone else on this site my sumptoms seemed to disappear overnight. Have had about 4 or 5 flare ups and trips back to doctor to increase steroids again then slowly reduce which has always worked.
However since 2 Jan this year my flare up has not been managed by the steroids, increased pain and stiffness in my shoulders, neck and arms. After seeing another Rheumatologist (had to go private) otherwise would have had a 3 month wait to even see one on NHS he did loads of blood tests, x.rays and Mri. Results have come back with ACPA reading of over 300 and another one very high can't remember the name of blood test but it's been confirmed I have Rheumatoid Arthiritis not PMR. Now been prescribed methotrexate and folic acid with several blood tests and chest X-ray again in a few months.
I have only taken the methotrexate twice (take it once a week) so it's early days but the pain in my shoulders and neck just never goes away. Not just stiff but real intense pain, can't get dressed easily or move around very well. I have tried all the painkillers including tramadol and they all make me feel sick and even more unwell.
Can anyone advise if they have used acupuncture? To manage pain at all. I am wondering if it is available on NHS if all the normal painkilling remedies just don't suit a patient as living with this chronic pain and the fatigue is getting me down. I am going to speak to my gp as soon as possible but thought I would ask this forum first.
For the first time in 3 years I have had to take this week off work sick (thankfully only work 25 hrs) due to this dreadful pain which also affects my hands and feet but can cope with that better.
I would welcome any comments at all, many thanks.
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caz3333
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About in in 6 patients who are given a diagnosis of PMR at first later have the diagnosis revised, most often to LORA (late onset RA) as you have done. The presentations are very similar so it isn't entirely surprising but they don't know if maybe PMR can morph into full blown RA. RA is another autoimmune disorder and once you have one you are more likely to develop another.
Have you been taken off the pred? You can have BOTH PMR and RA - and the RA drugs don't appear to do a lot for PMR. Did it help the shoulders at all? Unfortunately MTX tends to take a few months to kick in and often you are put on pred in the meantime to try to reduce the inflammation.
Acupuncture is/was available on the NHS for pain management - whether it still is is another question though. Some Trusts have cut back drastically on alternative options to save money. I haven't used acupuncture, a few people have mentioned it for PMR and the results were mixed - as I remember mostly negative.
In your place I would start by investigating if your local hospital has a pain clinic - I know Durham in the northeast of England does - and get referred. Secondly, I would look for a local Bowen therapist - because that is one of the things that Durham has trialled and found very successful in pain management. There are quite a few people on the PMR forums who have found it helps - me included. You usually know within 3 sessions if it is going to help your problem - it doesn't always - and so it isn't an open-ended procedure that keeps swallowing money. It certainly helped my shoulder and neck problems, they didn't go away but at least they didn't hurt as much! My problem was spasmed muscles - and boy, do they hurt!
Hi PMRPro thank you for your reply. I asked my rheumatologist if I could have both PMR and RA and he said it wasn't likely and that all the recent tests confirmed RA plus the fact that my feet and hands are painful a lot of the time. He advised me to stay on the steroids for now gradually tapering them down, I am on 5mg at the moment and think I will stay on this dose for at least another 2 weeks then drop to 4.5mg. I am also on gabberpentin to help with nerve pain/damage in my shoulder and neck and he also advised I stay on this until the methotrexate kicks in. Like you say, this could take several months if it's going to work.
Unfortunately, the RA seems to have been undiagnosed for probably a year and I just hope that any damage caused to my joints will at least slow down. I had thought about the Bowen therapy and will look into this to see if it at least relieves me of some pain.
I have spoken to my gp today who is referring me to see a physio on the 19 May to see if I am a suitable patient for the acupuncture and whether my condition would suit this type of pain relief. I am desperate so will try anything to be honest. It's managing the fatigue and work that is proving difficult especially taking any pain relieving drugs which make you drowsy and a bit out of it!
Thank you for taking the time to reply, much appreciated.
Ah well - my feet used to hurt like h*££ because of PMR! I definitely don't have RA though! PMR does get feet too...
Interesting though - I wonder if the previous rheumy got it totally wrong. Is there visible joint damage already? I do hope the MTX starts helping soon and that you don't have problems - it gets wearing when you are in pain and trying to find what works.
I have a couple of internet friends with RA - both have blogs that are very helpful, have a look for Rheumablog by Wren and she also has a Facebook page now, and PolyannaPenguinsRABlog is from someone in the UK. There are other links from RheumaBlog to sites that are interesting too.
Thank you PMRpro I will certainly look up those 2 blogs and fb you have mentioned. I have had an X-ray of my neck which shows joint damage but not had X-rays on any other part of the body. The Mri was also of my neck. I think I possibly had PMR to start with which had then become RA? Hopefully the RA drugs can start doing something soon but it's early days. Perhaps the acupuncture is not such a good idea but can always see what the physio thinks and take it from there.
The NHS has drastically cut back on acupuncture as I believe has happened in Germany too. I had it privately for PMR and it was a total waste of time and money. I also had cupping which caused the PMR to become more painful. I then read a book on complementary medicines based on various research studies, Trick or Treatment. Acupuncture did not come out brilliantly and seemed to be similar to the placebo effect. Apparently it works well for nausea, particularly in pregnancy.
Hi piglette thank you for your reply, perhaps the acupuncture is not such a good idea but I am desperate for some pain relief so will try anything. I am hoping the rheumy nurse specialist contacts me soon so I can speak to her about pain relief (not tablets) and how to manage this fatigue! Surprisingly our gp can refer patients to have acupuncture under nhs so may as well see what they say. Thanks for your input.
Hi I have had regular acupuncture since the onset of PMR especially in the six months before I started steroids. I found it very helpful and non invasive. I didn't have any pain with PMR so can't advise re pain relief. My symptoms were primarily stiffness. Best wishes Geraldine
Thank you Irldino for your reply. I am pleased the acupuncture helped your PMR stiffness. I too have the stiffness but it's the pain relief I am really wanting to address as the really strong painkillers like tramadol and codeine just do not agree with me or even control the pain. I am going to see the physio on 19 May to discuss if she thinks it may work!
I have just started getting cranial sacral therapy. I have found the total relaxation to be helpful. It doesn't solve the true inflammation issue but it made me feel better overall. Helped with the fatigue and general blah feeling.
Hi TooSore thank you for your reply. I have never heard of sacral therapy so will look that up and educate myself. Glad it helps you and will check it out as I am willing to try anything at all for the pain.
I noticed in the thread that someone mentioned Bowen therapy. Not knowing what that was, I looked it up. Cranial Sacral Therapy and Bowen are apparently very similar with the CS being a bit gentler. I have mine done by a trained licensed massage therapist but you can also have it done by an osteopath. They seem to want you in for three visits, a week apart to start. I'm headed for my third tomorrow. I found I felt so relaxed the night of the appointment and not much different the next day. However, the day after and onward, I felt good - more comfortable in my skin, so to speak. By the end of the week, I'm looking forward to going again. I'm hoping the results last longer over time.
Hi TooSore thanks for your feedback re CS. I am going to look into this and Bowen therapy as soon as I get back from my holidays at the end of April so that I can concentrate on having regular sessions. It's always good to hear when something is working for someone as it gives us hope and to remain positive when suffering with ongoing chronic pain. I wish you well with your treatment and I will put on an updated post in a few weeks time.
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