As that pain eased, my arm muscle pain worsened which according to my rheumy was caused by the steroids having caused the muscle to atrophy (weaken). I resorted to physio - the first person was hopeless and just caused me further pain in my neck. However, the second physio was so alert to not wanting to increase the inflammation of PMR and started gentle massage and heat treatment around the upper arm and shoulder blade area where he could feel several knots and I could feel the sensitivity when he touched the right spot - he said he could feel a sort of vibration under his finger when he found the spot. Several sessions later all the pain had gone.
So, if you do seek physio treatment, then do take care that it doesn't entail any pulling or stretching of limbs that could increase the inflammation of PMR. Only gentle massage is the key. I know of someone who managed finally to get off very long term steroid treatment after osteoporosis had set in by having sessions with a nurse trained in massage. She is now fully recovered and does Nordic walking which is said to improve bone density.
You will get there Nanatjjj but unfortunately there is no quick solution (I am now doing a snail's pace reduction in trying to get off the last 1mg after just over 4 years with both PMR and GCA, having started on 40mgs). PMR will go only when it wants to but meanwhile thank Heavens for Prednisolone with all its possible side effects for without it many of us would be very severely disabled.
Keep going, you will get there.
Thank you Eileen and Pearl. I guess my only reluctance is the concerns that you mentioned, Pearl, about the P.T. being too aggressive and increasing my problems. I am going to bring the therapist some information about PMR and see what he/she recommends. I do believe therapy can help, but I am knowledgeable enough to know it can cause problems too. My last therapy, last year, managed to increase my FM problems, so I stopped it. Thanks, Pearl, for reminding me that I am in the same boat with many others and that I have some classic PMR symptoms. Plus you had to come down off 40 mg. I started at 60 mg because at that point my regular M.D. did not know what was wrong with me. Hi Nanatjjj, just want to encourage you to try physio for the following reasons and emphasize what MrsE has recommended. A physiotherapist understands how all the parts of one's body work
together to create movement. Bones, muscles, joints, ligaments, and
tendons: the physiotherapist knows how they all fit to make one walk or
stand. With this knowledge, the physiotherapist can devise methods to
help one keep moving. This is the most important part of rheumatoid
arthritis treatment.
Early in one's treatment, the plan will take
shape. It will include ways to prevent rheumatoid arthritis from
disabling one. As time goes by, the focus will shift to a more here and
now sort of treatment. Exercises will be geared more towards current
problems.
Water exercises can be used for people with rheumatoid
arthritis. These exercises allow the person to get much needed
strengthening and stretching exercises done. At the same time, there is
little or no pressure on the joints or spine. Physiotherapists use
water exercises as an important part of the treatment plan.
Strengthening
exercises help the muscles provide more support to the joints of people
with rheumatoid arthritis. If there is not enough muscle tone, the
patient will have more trouble walking or doing other normal movements.
The rheumatoid arthritis will dominate the movements instead of the
muscles dominating them.
Heat therapy can be used in conjunction
with ice therapy for rheumatoid arthritis. A physiotherapist can tell
the patient when and how long to leave on heat packs or ice packs.
Other heat therapy is done by ultrasound.
People with rheumatoid
arthritis can benefit from manual procedures, such as massage. A person
with the stiffness that accompanies rheumatoid arthritis can be very
limited in how far he can move his joints. Massage improves movement
and increases this range dramatically.
One of the most important
functions a physiotherapist serves for patients with rheumatoid
arthritis is as a motivational coach. The physiotherapist should be
trained in the psychology of chronic disorders and pain management. She
will be there to encourage you to keep trying, keeping moving, and
never giving up.
Physiotherapy is only a part of the treatment
for rheumatoid arthritis. Diet and medications are also used, for
example. Yet, without physiotherapy, many people who suffer from this
disease would be in much worse pain.
http://www.arthritisjointpaingone.com
Hi Nanatjjj
I was wondering if you had any symptoms of GCA when your MD started you on 60mgs of Pred.? As 40-60mgs is the recommended starting dose for GCA sufferers, I considered myself lucky to commence on the lower of the two!
At the outset, my ESR and CRP blood tests showed very high markers but under the guidance of my excellent rheumy I successfully managed to get all GCA symptoms under control, blood tests back to normal and reduced to 15mgs very quickly over 6 weeks (the recommended starting dose for PMR alone).
My 'fun and games' of flares didn't arrive until I reached 5mgs and, with hindsight, I wished that I had found my fantastic physio sooner because he was so very aware of the need to avoid increasing the inflammation and I feel sure that his massage technique would have been so beneficial to my stiff and sore muscles. I have told my rheumy of the benefits I gained from the physio in the hope that he may recommend it to other PMR sufferers.
Good luck with your therapist and do let us know how you get on.
Hi Pearl,
I first sawy my regular MD who thought I had a virus and wanted to see how I did over the next few days. But I kept getting weaker and was next sent to the ER when another doctor in that clinic thought I might have Gillion Berrae (sp?). But the ER said no. They thought I might have a blood clot in my lung since my CRP was high and my D-dimer was slightly elevated (a test they use for blood clots in the lungs) and I was short of breath (probably from overall weakness). But the lung scan they did was negative, so they sent me home. The next day, I saw my regular M.D. again and she said she thought I had some kind of nasty virus and she wanted to see if I would respond to steroids. She originally prescribed 60 mg for 5 days then nothing. She told me I would not need to taper with that short a course of steroids. Of course she did not know I had PMR then, so did not realize I would crash on day 6 without any steroid. I wonder how I would have done if I had been started on a lower dose of Prednisone. It has taken me since the first of the year to get from 60 mg/day to 17 1/2, though my recent trip bumped my up to 20 mg again for 10 days.
I did not have any GCA symptoms thankfully.
I am hopeful that PT will help me. I intend to be careful with therapy and try to make sure that the therapist understands my illness and is gentle in his/her approach.
I will keep you posted. As they say, misery loves company and I am comforted that at least my symptoms fit the disease and that many of you have very similar symptoms and course of illness. I am not sure why that is comforting except that it makes one feel less isolated and more grounded in reality (less likely to think that something is just in your head)
Hi Nanatjjj - I can so emphasise with your early suffering....whereas you were wrongly diagnosed, albeit fairly quickly, I remained undiagnosed by GPs and rheumatologist for a year, being bedbound for several months and having to travel to my appointments by ambulance and wheelchair. It resolved spontaneously after that year only to return a few weeks later accompanied by much worse symptoms. On being re-referred I asked to see a different rheumy - he diagnosed PMR and GCA! He felt that the latter was caused either by the undiagnosed PMR not having been treated with steroids (a high risk factor) or the commencement of a different BP medication whilst undiagnosed PMR was lying dormant in my body.
With all the many auto immune diseases displaying similar symptoms to PMR, such as FM, RA, Lupus and Guillain Barre (as in your case) it's sort of understandable for a GP to have difficulty in diagnosis and to consider the symptoms may be down to a virus as in your case because, in the absence of a known cause, viruses are implicated in PMR along with genetic and environmental factors. However, I don't feel so understanding of a consultant getting it wrong! When I first became ill, a gardener who had been treating our lawn went down with the same symptoms. His doctor considered it to be a virus and even though antibiotics are not supposed to work in cases of virus, he put him on a course of steroids PLUS antibiotics - about 6 weeks - he totally recovered! I've wondered ever since whether that treatment could possibly be an answer?!
I do hope you will continue with a smooth journey - when I was reducing from the very high doses, my rheumy told me that once I got to 15mg that is the dose that normally controls the symptoms - I think the secret at that dose is not to reduce from it too quickly in order to allow the body chance to settle and recover from the inflammation.
As for "misery loving company" until I found the UK forum several years ago where 4 or 5 people, including MrsUK, had found each other and got together to help us all, I thought I was the only person on the planet with PMR!!!!
Bestest wishes!
That's a very interesting comment, Pearl, about your gardener. David has a sort of colleague, a doctor, whose wife had something very similar to PMR but really bad - at least as bad as you were initially if not worse. The rheumatologists in Budapest treated her with high doses of steroids - which worked and fast - but she was unable to reduce the dose much without the symptoms returning and very quickly became quite ill because of the steroids - very Cushingoid. He did a lot of research reading and, together with the specialists, they decided to to try highish doses of antiobiotics over a long period. It took a few months but it worked and, as far as I know, the improvement has been maintained. He told me about it 2 years ago when I had just been diagnosed but unfortunately, there was no opportunity to follow up the initial discussion with him (she doesn't know enough about and her English is certainly not up to it) and he wasn't at the meeting the following year for me to quiz him about it.
Eileen
Eileen - I would love to know what, if anything, that lady was eventually diagnosed with! I'm certainly very intrigued to hear this, especially following our gardener's experience.
You may have read my recent post where I referred to a case of another lady being treated for PMR without much success and I put the suggestion of Lyme's Disease into the equation, having remembered reading of a similar experience in the past. The lady's husband demanded the relevant blood test which proved positive for Lyme's, the lady was treated with antibiotics and recovered!
Apparently, Lyme's can appear a very long time after someone has been bitten by a tick by which time the person has forgotten about the bite! I remember being treated some years ago for a particularly nasty bite that ballooned into a blister and refused to go down for weeks. The first Dr I saw tried to burst it to no avail so wrapped it up. The second Dr said he wondered if it was a tick bite!!!
But, back to the gardener - his symptoms were identical to those of PMR with pain in his back, legs and arms, plus a low grade fever such as I and many other PMR patients also experienced!
So in the absence of a known cause and no known cure for PMR, but with environmental and viral factors being suspected, could this short, sharp blast of antibiotics plus steroids be a possible answer - million dollar question, Eileen?!!!!
Indeed, Pearl! But can you imagine anyone in the UK being prepared to try it? That was exactly what I wanted to talk to this Hungarian guy about - they identified nothing at the time and it was fairly much a stab in the dark but they did give the antibiotics for some time. However, I seem to remember someone else saying that their PMR improved greatly after being on antibiotics for something else.
Lyme's is a funny disease, it's quite common in Germany because of the ticks that are pretty common and infected in some areas but even there they often miss the diagnosis. You can improve things at a late stage but never usually cure it completely - unlike when it is identified immediately. I too have had a few strange bites in the past but never a tick bite that I know of - they hang on in there and the head and jaws have to be removed very carefully!
One of life's mysteries!
Eileen
Just a question. I have been back on the 17 1/2 mg for a week now. The main difference I notice is an increase in the exteme fatigue. How do I know if that is from steroid withdrawel or my PMR? Otherwise I do not feel too bad. I am assuming I need to stick it out on this dose even with the extreme fatigue being back. It's not like the fatigue ever went away, it's just that the extreme part seems to be coming back. Nanatjjj
Fatigue is a symptom of PMR and also a side effect of Prednisolone. As you say that apart from the fatigue you are not feeling too bad, then it does point to the culprit being steroid withdrawal and I think if it were me I would stick it out for another week or so. However, you need to give yourself a lot of extra TLC whilst the body is adapting to the decreased dose - MrsUK refers to this as "clearing the decks" for a week or two when she is reducing! Do hope you continue with "not feeling too bad".
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