I was diagnosed with PMR in September 2006 after several months and many visits to my GP. I am desperate to know WHY & HOW I got PMR but I guess I might never know the answer. During the months leading up to my diagnosis there were several things which may have caused or contributed to the condition. Firstly, I was prescribed statins for high cholesterol and I discarded these after just 4 weeks as I was feeling strange. Next, I stopped smoking. I'd been a twenty per day person for many years, stopping must have been a shock to my system. Then I went to Peru, and although I had a wonderful time, the altitude affected me badly. Finally, I joined a gym and began exercising my poorly muscles without knowing they were poorly. My first symptoms were quite mild, ie tingling down my arms and into my hands, also my veins would swell and darken, almost black ( has anyone else experienced this?) Then the pain started, first in my thighs and hips, then moving around to my arms, hands ( not shoulders or neck) I couldn't walk very well and had to lift my legs in and out of the car and bed. Also, I found fatigue and depression were creeping in. My legs are dead when climbing stairs or with any kind of excercise, I can't even vacuum the lounge without my hair being wet with sweat. I started on 30mg of steroids as my ERS reading was 66. Now I'm down to 9 1/2 mg and hoping to reduce soon. I would like to stop the steroids and graduallly replace them with pain killers. Which pain killers work best with the least side effects? I'm depressingly fat with a double chin and huge midrif. Nothing from last year fits me! I have insomnia and sometimes I'm aggressive on the steroids, I MUST get off them. I go to the gym regularly for aquafit. When I'm in the water I feel like I've got my body back, also I feel much better after an aquafit class, highly recommended for PMR. I also walk on the flat for 2 miles twice per week and have recently started pilates. My gym has recently acquired a \"power plate\" which is a large vibrating plate which excercises your muscles for you. It is reputed to be good for many things including circulation and building bone etc. I've only been using it for 4 weeks but I will report on my findings in relation to PMR in the future. I go to a reflexologist regularly and take Devil's claw (Harpagophytum) for its anti inflammatory qualities. I believe I'm doing all I can to keep my muscles toned while I have this condition. If anyone has any further ideas or suggestions I'd love to hear. But is there ANYONE out there who has beaten this and returned to normal? I'm trying hard to remain positive but after all I've swallowed, undertaken, paid for, researched etc I sometimes feel hopeless about my future. I look like I'm carrying on with my life much the same as usual. I do most of the things I did before, though at my own pace and people can see I've gained weight but don't know I have this illness. The way I FEEL is like a tired and depressed 80 year old ( I'm only 60) and I was fit and energetic before this hit me. Good luck to all you sufferers out there and thanks for reading my moans. Can we form a group to press for more research into PMR? To know a cause would be wonderful but a cure would be even better or even an alternative treatment to steroids
I am in the same situation as your are, but unable to excercise due to severe osteo-arthritis behind both patellas, had GCA and Pmr for nearly two tears undiagnosed for one year! I like the idea put forward for some research into these conditions but would like to think this was already in process how do we find out? I met a neighbour yesterday who told me she had PMR for three years and came off steroids last November and is Ok now so heres hoping, all the very best and luck.. Joan T. 
I stopped smoking before getting PMR?could this be the link
[quote:0770167951=\"crawf\"]I am in the same situation as your are, but unable to excercise due to severe osteo-arthritis behind both patellas, had GCA and Pmr for nearly two years undiagnosed for one year! I like the idea put forward for some research into these conditions but would like to think this was already in process how do we find out? I met a neighbour yesterday who told me she had PMR for three years and came off steroids last November and is Ok now so heres hoping, all the very best and luck.. Joan T.
Hi there
I have been told by the doctor that he suspects that I have Polymyalgia, and so he put me on steroids for a week, I felt wonderful, but he said I couldn't have anymore until I see the Rhuematologist in september!!!!!!! I have ddd and since this I have had bad hips, difficulty walking, pain in my shoulders/blades knees hands and feet...... the feet hurt as soon as I set foot out of bed....a nightmare I am 35 in september and I am hoping I get some answers as I have had this all over pain since dec 06!!!!!!! I have had blood tests and they were all negative, apart from inflammation showing in the test for anemia?????? I am at my witts end as I have been off work for sometime!!!!! I get burning in some sensations, and around my waste I seem to have no circulation leading into my thighs, then my legs will be severely hot, but as soon as the temperature rises then I feel the awful pain and it makes me feel sick and have a fuzzy head!!!! I then need to lie down as I dont like the horrible feeling.......Just hope the rhuemotologist gets to the bottom of my dilemma!!!!!
Hi. I,too don't know where it came from. No warning :just there one day. That was Jan 07. I started with 20mg Prednisolone and 8 months on I am down to 2mg and hoping to be clear in a month. I am devastated to know it can come back.I have had no side effects with Prednisolone, that I know of and no pain at all since taking them. My doctor did not refer me to a rheumatologist. Said it wasn't necessary unless you have it in your head. We have a good Health Store locally. The owner is highly trained in alternative treatments and I have been taking several things she recommended. Maybe this is why I have made such good progress. I am 77 years old and before PMR very fit. I refused Actonel, the drug that coats the bones to stop loss of calcium ,much to the annoyance of my doctor but enough is enough. I have been lucky with Prednisolone and don't want to push my luck. Unless you have PMR you can't describe the pain, can you. Good luck Ananbel
Anabel I'm so pleased to read about your success and I would love to know what alternative medicines you have been taking to get you there. Good luck
My age is 70 years.
I first experienced pain in my shoulder, and visited the doctor as I thought I had a frozen shoulder. This was October 2006. Then the pain passed to the other shoulder across the back, arms, legs, and eventually I could not pull myself out of the bed without attaching a rope to my mattress. I had difficulty switching on my radio without pain in my fingers. Blood tests revealed polymyalgia rheumatica, and I was put onto steroids, high dose, gradually reducing on Doctor's instruction until I was down to 10mg. I could not walk about without pain until late morning into the afternoon, when it was wonderful to have little or no pain during afternoon and evening.
Lately, I think, due to stress, I have experienced much pain again getting out of bed and walking and bending etc through the morning,have had to have rest on bed late morning. I have lost my appetite and feel miserable. I was hoping to reduce my steroids and get back to my usual self. I do not want to up my dosage of steroids again.
It has been a comfort to read about other's experiences in this way. This is a very painful condition, and no-one who has not experienced the pain could know how bad it is.
hi there all
To Annabel, does the doctor mean that if you don't complain of head aches then he wont refer you to a rhuemotologist as I think that is awful, the point i am getting at my doctor suspects polymyalgia and to get a certain diagnosis he has referred me to a rhuemotologist, as some conditions overlap others etc and this specialist should have more knowledge in this field as after all there is over 100 related arthritic conditions.
Regards and take care xx
Ses
To Ses. Apparently you can get PMR in your head. I can't remember the name for it. Unless it is treated in time it can cause blindness>My doctor was saying unless you have this it is not urgent and you don't need a rheumatologist. Just keep taking the steroids. The medical books all refer to PMR as a rare complaint of the elderly, but once you have it it seems every second person (all women) has it too. So far I havve been lucky. I am now on one mg and hoping to have the all clear soon. Anabel
[quote:a6d4689803=\"Pammy\"]Anabel I'm so pleased to read about your success and I would love to know what alternative medicines you have been taking to get you there. Good luck
Pammy. I am new to this. I have replied to your question several times but it never gets posted. The supplements I was recommended were a combination of calcium, magnesium and boron, UFA)omega 3, 6 & 9 and Vit B complex 50. Hope I am lucky getting thro, this time. I hope you are feeling easier. The constant pain is very depressing. Anabel
Hi Everyone
I too have been eagerly waiting to hear from you Anabel sounds like a very good and sensible mixture. It is wonderful to learn of your success over a comparatively short time. You are an inspiration to us all. I for one think it is worth giving it a go.
Just lately I have been able to reduce a bit more and am now down to 5mg. I am beginning to notice that I seem to be able to reduce successfully when the weather is warm and dry. During cold wet spells I seem to be much worse. Has anyone else notice this?
Best Wishes to everyone.
Are there any local groups where we could get together and discuss?
Hello all fellow sufferers !
At 58, I was diagnosed with PMR late last year after 3 months of pain which started very suddenly with terrible headaches and a feeling that I was coming down with the flu. My doctor (I live in France) sent me for a scan, blood tests, X-rays and ultrasounds while I was waiting for an appointment with the rheumatologist. I went back to work after 2 weeks at home (I live 1 1/2 hours out of Paris) and the journey was terrible. I wondered once I had sat down if I ever would be able to get up again and started trying to get up a good 2 stations before from my stop. I would get home in the evenings in such a state and just collapse on my bed. Mornings, even brushing my hair was a lengthy and painful process. I've now been on steroids for 9 months and am down to 9 mg. I don't have an ache or a pain any more and can cycle, walk, do household work etc. like a \"spring lamb\". The only side effect I have from the steroids is weight gain and now I'm on a salt-free diet recommended by my doctor. What I have been told is to be patient and not reduce the steroids by more than 1 mg per month and only then if the monthly blood test shows \"normal values\". My rheumatologist told me it is not known what causes this illness and it will eventually go away again. So I'm hopeful.
Good luck to you all !
Marion
hi there all
After seeing the rhuemotologist and she saying I have mechanical back strain, yeah right........back pain doesn't go in your hands, knees and feet........ I took my mum to the doctors today with me as I am sick of the pain and not getting a diagnosis......He said I have a form of arthritis, but it is finding out which one as there are over 100 different forms of arthritic conditions. So basically until something stands out in future tests an exact diagnosis can not be made!!!!
Regards
SES
Hello SES. I have been waiting to hear your results. I can't believe you are no nearer now than before. You previously said you were on steroids for a short time and they helped with the pain. It's best if you can manage without them but in your case anything for relief and they are prescribed for many forms of arthritis. How disappointed you must be. I had a blip with pains last week. I was sure the PMR had returned, but apparently not. It disappeared after a few days. I wasn't impressed by my doctor and changed to another (in the same practice) Much pleasanter. He said he was amazed after a ESR reading in Jan of 97 I am now down to 1MG and he gave me another blood test to see if I am almost clear. I didn't tell him about the supplements. Doctors think they are a complete waste of money. It is a pity you can't get a second opinion. please keep us posted.
Regards Anabel
Hi there Anabel thanks for your reply
I think a second opinion may be an option but having said that if my sed rate increases then maybe Someone will listen????? So we will see alternatively I am waiting for physio and they may see that my whole body is sore/painful and tender to touch from the neck down?
Regards
SES
[quote:7e62aef9c8=\"Anabel\"][quote:7e62aef9c8=\"Pammy\"]Anabel I'm so pleased to read about your success and I would love to know what alternative medicines you have been taking to get you there. Good luck
Pammy. I am new to this. I have replied to your question several times but it never gets posted. The supplements I was recommended were a combination of calcium, magnesium and boron, UFA)omega 3, 6 & 9 and Vit B complex 50. Hope I am lucky getting thro, this time. I hope you are feeling easier. The constant pain is very depressing. Anabel
Hi there Anabel
I have had my physio appointment and he has diagnosed me with arthritis in my hip, and as that is the worse pain I have all together, although I have pain all over, my physio was more concerned in treating my hips as my mobility is effected due to this condition, he has given me a walking aid to help me, I am back there tomorrow at physio.
Kind Regards
SES
Jacqi
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