Polymyalgia Rheumatica

Anno I am not going to ignore it. I am going back to see the G|P soon anyway.

If you suspect your symptoms are PMR, please see your GP. If untreated it can result in Giant Cell Arteritis which endangers your eyesight. It's not worthwhile holding off. If you don't believe this, have a look at some of the posts here.

I am glad this has come up again. Following blood tests about 3/52 ago, my ESR and CRP were normal. I waited for blood test re vitamin D; that was normal so that has ruled that potential cause out.
The pain and twinging in my arms is still waking me up at night between 3and 6pm. Yesterday I had a choir concert and I was holding up my music folder for 5hrs during the afternoon and evening, hardly doing strenuous lifting. Arms were hurting horribly by about 4am in the inside arm muscles and woke me up. Whatever type of stuff I do with my arms my arm muscles seem to hurt accordingly. Knitting seemed to get the top of my forearms.
I have not had any of the stiffness associated with PMR though, just pain particularly twinging at night which improves slightly with gentle movement and another hot water bottle.
Right now I am in limbo as far as any diagnosis is concerned. It could possibly be caused by taking Alendronate for osteoporosis. The drug leaflet lists it as a common side effect. Has anyone else taking osteoporosis drugs had this problem? Thoroughly fed up!

As I said somewhere above, I have had PMR for 4 years. I've just had a flare up and it's been really painful in spite of upping my dose of Prednisolone to 5mg per day. I think it's just beginning to settle down again.

I would always recommend going to the doctor. There is a blood test which will help to identify whether you have PMR or something else.

I have had few adverse effects from the steroids, although not sure how the bones are doing, and it was worth it. I would have been bed-ridden half the time without it.

There are other diagnoses. Such as ME, CFS. These are not treated by steroids!

Nellie and Galen

I'm wondering if I have it too. Both hips are agony a lot of the time but if I lie on the right one, particulalry, the pain is excrutiating.

My elbows hurt if I rest them on the arm of the chair and the muscles in my upper arm are painful to the touch, as are the ones in my thighs.

I keep putting off going to the GP because I'm not keen on taking steroids since, among other things, a friend had an really dreadful reaction to the ones she was given as part of her chemotherapy.

I don't have PMR (I think?) but over the last few days my ankles and feet have been so painful, I've used my luggie everywhere on board where I would normally have used my crutches!
I think tomorrow I'm going to have to get Gary, the Gardner to get my wheelchair out of the garage for use in the house!
I don't normally moan a lot about my pain but this is getting silly!

Polymyalgia sufferers, we are in good company. It's interesting that it takes a well-known person to give this illness any publicity and yet so many of us have it and sometimes GCA.

Nelliemoser (((hugs))), if you can cope with one. Pain can be so debilitating. I can't offer any advice but maybe this will bump this so that someone else can.

Just bumped this as It was posted late on!

I am just reading through this lot after feeling a bit hypochondriacal.

Over the last 2/3 weeks I have have been suffering increased pain in my shoulders and upper arms particularly at night. There is no good reason I can think of, such as having been doing a lot of heavy work.

I went to my knitting group today and when I got home the muscles in my arms had become really painful and twingy. I have been knitting for the last two years with no such problems.
I am now finding it difficult to get my arm into my coat sleeve and pick the kettle up at times. My already arthritic thumb joints are more painful than they have been for some time.

I have been aware of PMA as my mum had it. I had surgery for a parathyroid problem two months ago and I am on Alendronic acid to improve my bone density problem that has been caused by the parathyroid problem. The Alendronic acid can cause pain as well. I sort of suspect PMA and I am wondering if the disruption of the surgery and the endocrinology of that might have set my body chemistry and immune system awry.

I intend to get my butt to the GP next week If I can get hold of one of the two good GPs.

How have others with actual PMR found it started with them? Has anyone else had the achy upper arm and shoulder problems?

I tried looking at this thread earlier and my computer locked for about 2 hrs. I could not switch it off or anything! I though my lovely lap top was a gonner! Very Very frightening.

I didn't really know much about PMR until I started reading this thread and did some googling. I was on prednisolone when I was a child, for short bursts when I had my knee op and also for my eye condition for many years. I'm so glad I don't have a need for it now and I wish those of you who are having to take it a full and speedy recovery back to health without it.

www.amazon.co.uk/Your-Intelligent-Immune-System-ebook/dp/B007P3NPKM/ref=ntt_at_ep_dpt_1

Well done for that, Petallus. Isn't it frustrating when you'd really love to see the back of those little white pills!

Just over three years since I started on pred. for PMR. Now down to 3mg.

JessM I have been unable to find your book in Amazon Kindle Store. What is exact title?

I was at orthopaedic clinic yesterday for a review. Although I was offered a joint replacement for my second knee about ten years ago I'm ~making it last~ so I just ask the consultant to keep on an eye out for anything really untoward happening with either knee that might make surgery unavoidable. I had my usual set of xrays, and as usual thought it best to advise them about my existing antique implant which requires a larger picture area than the more modern nifty little knee prosthetics. Then, instead of seeing the consultant, I saw the clinic sister who explained that she was acting on his behalf and that all looked well but that he himself would be scrutinising the xrays during the next few days in case she'd missed anything. I do wish we were able to get copies of the xray pictures though. Mine always engender amazement and disbelief as to how I'm still managing to walk about ;) The main thing is that the cement seems to still be doing its job, despite the fact that it has already lasted much longer than they anticipated back in 1985.

To sum up though annodomini yes, I think my overall ability to cope with this disease has improved. I'm certainly feeling much more positive and healthier than I was when I began my year's trial. I haven't stuck completely with the regime in the book and the differences will be part of my blog update. Fatigue for me too is a daily visitor. I find that if I go and lie down flat and totally relax for ten to twenty minutes I get my energy back; sometimes three minutes is all I get if the doorbell rings at an inopportune moment, but even that is better than nothing.

I used to have that book trishs. Someone borrowed it and I never saw it again. My physio recommended it to me as it had helped her with psoriatic arthritis. Can we have a preview of your update? Has your condition improved noticeably? As far as PMR is concerned, it should fizzle out after about 2 years unless you're really unlucky. Mine is a lot better and I'm tapering the steroids. Sometimes feel very tired though - like now!

I'm another GN member with autoimmune arthritis. I was diagnosed with Stills Disease when I was eighteen months old. This was me a year ago - phyzzezee.wordpress.com/2011/12/07/new-beginnings/. I need to write an update soon

Well thank you for the plug fondasharing . Only on Kindle, but on other ebook platforms soon.
Definitely needs to be a lot more research into why the immune system sometimes starts attacking its own body cells and causing all these different auto-immune diseases. Steroids are a blunt instrument aren't they. My mum was on them for decades.

PMR is an autoimmune disease. My husband has something called psioriatic arthritis, another autoimmune disease and I would like to share the benefits of many years of research trying to find the answer to this miserable, painful disease....the symptoms of which are similar to PMR. It seens that the Medical Profession's only response is to pump people full of medication and keep the pain under control. The drugs they use are toxic in themselves and are not the answer in the long term.

This is what I have discovered on behalf of my husband over a period of 14 years!!!

Your Immune System is definitely affected by what you put into your body i.e. food, stress, mental attitude, environmental factors etc.etc. and it is important to find out just what is causing your immune system to be "out of order" and with PMR and arthritis, inflammation which attacks the joints and gives sufferers so much pain.

There are many books on the subject and one I have used recently is called "The Autoimmune Solution". Another excellent book on the Immune System has been written by your own Gransnet contributor, "JessM", called "Your Intelligent Immune System".

Here are some of the main factors which can cause the problems:

"Foods known to cause inflammation"
All Wheat products
Dairy product
Potatoes
Tomatoes
Corn
Sugar
Citrus Fruits
Pork
Shellfish
Coffee
Alcohol
Tea
Sodas

Try for one month without these items and see how you feel. Then introduce them one by one and see how your body copes.

Read the Paleo Cookbook for ideas on which foods you can eat which will not cause inflammation in the body.

"Supplements that help"
Probiotics (essential for your gut health)
Magnesium
Turmeric
Boswelia or ginger
Fish Oils
Joint formula
Vitamin D3 in high doses with K2 added.

On top of all this, try to reduce stress in your life by exercise, visualisation, yoga, meditation or whatever helps you to relax. Try to improve your outlook on life by reading or watching positive books and films.

I share this with anyone who has had these painful conditions, as they really do help. As my husband has said.....it has made the difference of "wanting to live a full life again", instead of being in constant pain and the fug of being pumped full of drugs. Regards to all of you who have suffered.

I'm returning to the thread to give a useful piece of information to other people who, like me, are trying to reduce their steroid dosage. The web page was written for patients suffering from another condition but also using steroids and hoping to get off them. I found the information very useful.

Just had another look at this thread and am wondering how you all are. I'm now on 4.5mg of prednisolone (4 and 5 on alternate days) and seem to be adjusting to it. Taking it slowly now. I am determined to take more exercise and have joined a gym where I can go swimming and do aqua classes. And they seem to be a nice friendly crowd there. How do the rest of you cope with exercise and things like gardening? Strangely I didn't feel tired doing 45 minutes of aqua zumba today but five minutes in the garden just about wipes me out!

It is a bit of a chicken and egg situatiion. What came first? Becoming ill can make you depressed, tired and stressed and negative and tearful and unhappy. If by some magic wand all your health worries and pain were taken away you would be surprised what a posiive person you really are.

There is a tendency these days to blame people for being the kind of people who get ill, be it cancer or migraine or other serious painful illnesses.

This is just a cop out for others not to worry should it affect them and for doctors who prefer this, to saying they can't do much to help.

A few centuries ago nobody ever expected to be well. They expected to become ill and also they knew they could die at any time, they knew their children could die at any time. I heard Dr Robert Winston last week on Radio 4 discussing the early death of Mozart. That is what he said and my thoughts about illness are similar.

That is why we should not forget when we are ill, to try to accept it as a fact of life. And then hope that your boss also sees things that way!
And then take what modern medicine has to offer and take it.

Exactly Nanna you do have to lokk after yourself, recognise your limitations but do have some challenges and stay positive. I tried to do too much this week without proper rest and a melt down ensued yesterday afternoon - feel much better now after a lie in and cancelled a day out today in preference to a quiet day around the house doing some chores but nothing major.

Just to add - and I don't know the medical basis for this but I've come across it a few times - if you develop PMR at 50+ (most common) it will probably last between 2 and 5 years. If you develop it before age 50, it will last for life. I was 48 when I developed it, hence the supposed 'life sentence'.
It is far more common in women than in men (as are all auto-immune conditions) and I am firmly of the opinion this is because women feel they have to 'cope' whereas men will allow themselves to be ill. I know this is what happened to me. After a marriage break-up I felt I had no choice but to keep going for the sake of the children. I couldn't allow myself to ever be ill. Add in the emotional stress of divorce and the financial stress, and you have a recipe for auto-immune disorders. Your body finally says 'Enough!' and voila - you have no choice but to stop and evaluate what you are doing to yourself.
I took the time to find out what was wrong with my body, and thereby discovered the mind/body/soul link. I do believe you cannot treat any one element in isolation. I am now much kinder to myself, and I do not allow negativity into my life. I am fit and well, physically and emotionally. To anyone who is suffering from PMR or FM, Lupus, or any other auto-immune condition: please be kind to yourself and help yourself to heal.