Polymyalgia Rheumatica: Natural Remedies for Treatment
I have been diagnosed with PMR for a little over 6 months. I thought I had overdone the gardening! She wanted to start me immediately on steroids but I declined these because of the side effects. I take mg Ibuprofen twice daily.
I have acupuncture and chinese herbs and will shortly be trying a treatment called Zero Balancing. I follow a vegan diet although I do take fish oil supplements since the PMR.
I am 63 and work full time as a PA in a busy law practice. Some days are worse than others - on a bad day the steroids are tempting but I am determine not to take them unless I get symptoms of GCA. There is no doubt it has affected my life - night times are bad for me and I am very restless trying to find a sleeping position that doesn't hurt but I can still run my house and do a full time job so I am lucky.
You are indeed very lucky. I could not get out of bed or do anything for myself and even with help I was crying with pain at every movement. Steroids have not provided a pain free life but have enabled me to function. I am always slightly envious of the few who say they manage their PMR without steroids. Thanks for sharing your story I wish you well. I don't want to play down my symptoms. I too cried with pain and had to be helped out of bed and up the stairs - got stuck on the loo more than once!
Suffered the lethargy and fevers and loss of appetite. Lost half a stone so every cloud I have seen sprightlier 90 year olds - but I gritted my teeth and worked through the pain - I still struggle to get dressed with zips and tights etc but have worked out ways around this. At the moment I am determined not to let this get the better of me - I think positively, meditate and will this disease out of my body and try to keep a sense of humour and I can honestly say that I do see an improvement - my legs are stiff now and again - at the moment my shoulders and arms are its favourite playground.
I hope this doesn't sound smug - I really do know how people suffer with this but steroids are just not an option I can allow myself to consider. The body can heal itself if we give it a chance - this disease WILL go away and I refuse to give in to it!
I am very fortunate that my symptoms have been manageable without prednisone. I did a lot of research and added udo's oil, a morning drink of water with apple cider vinegar, and turmeric drink to my diet I still allow myself 1 cup of coffee, but no wine, wheat or sugar small cheats of course..
I really feel for all those with so many more symptoms than me I am very stiff and have very sore upper arms 0 which make rolling over in bed difficult. I have 1 sore spot on my outer left thigh, and my rt knee is achy. I had PMR for 5 years and had to manage it without pred as noone was prepared to diagnose anything - my blood tests were normal and I was said to be too young at Frankly it was awful - I never had a day free from pain and it required a massive lifestyle change and not for the better.
I couldn't go anywhere unless I could use the car and park nearby. That isn't easy in the UK. The first few months were not too bad but as it progressed I couldn't have worked in a "proper" job - I'm a freelance translator, my office was a few feet from my bed and I didn't have to get washed and dressed on the days I almost couldn't. Then it hit like the proverbial ton of bricks and for 6 months I was in agony with bursitis and since I had been stopped from driving for another reason totally unjustified medical suspicions I was housebound.
Public transport wasn't any help - I needed 3 days to recover from any attempt at an expedition. Taking pred may sound awful and it can be unpleasant in many ways. However, I have developed atrial fibrillation and the cardiologist is confident it was the autoimmune disorder and the inflammation that caused it originally.
It started about the same time as the PMR although I didn't recognise it. Leaving your body in a permanent state of inflammation is also bad, it makes you even more likely to develop vascular damage and some types of cancer amongst other things. Some experts feel it predisposes you to developing GCA, although that is disputed. I don't think any of us wanted to take steroids, but for most of us it wasn't an option not to.
Being totally unable to function without them - I would have been bedridden and that was never in my plan - and like most, I had a family, job and house to run. Financial considerations apart, being so incapacitated would, I think, have played merry hell with my mental health which is never a good idea.
I stayed in my job supported by the best managers and colleagues I had ever had and didn't retire until I was 66, but by then I knew I had come to the end of my resources and was thankful to step down. I had gone undiagnosed for more than 2 years as I had a gradual onset rather than an acute one and this alone has caused me many problems.
I am unable to tweak my diet as I also have a hiatus hernia which I'm sure I would have happened anyway so steroids it was. For me it was a no-brainer. I was also diagnosed with GCA some 5 years later and was thankful that I was already taking steroids. I was also diagnosed with late-onset asthma at about the same time which again is controlled by steroids. One the best quotes taken from one of the 3 main forums. No good getting rid of future issues if you cant Walk, Move, Live Now. I would have done just about anything to avoid steroids, but the pain was just too great to deal with.
I am able to gently jog 3 miles 3 times a week and cycle 8 miles twice a week, plus maintain my very productive vegetable garden and all that that requires. Of course not pain free, but manageable. None of this would have been remotely possible 4 months ago prior to pred. I would love not to have had to take pred, but each day I really thank God for the wonder drug. I can now swim, drive the car, garden, go shopping, get out of the house and even dress myself.
I wake up in the morning and can move my arms and legs without the excruciating pain. I even had trouble scratching my nose and opted for the itching. I can live again rather than being in a wheelchair in a care home which is the way I was going.
Steroids were my worst nightmare as a teenager, when I watched my mother's side effects, such as skin which tore easily in minor injuries and did not heal for ages.
So when I was diagnosed the last thing I wanted was to go on pred. But I could barely walk, dress myself, and was in extreme pain.
So I agreed to pred, and it restored my ability to move and function relatively normally. I have been lucky in being able to vary my diet and lose extra weight, which makes moving around much easier.
So good luck on the Ibuprofen, but do seriously consider pred despite its drawbacks, if the Ibuprofen ceases to do the business for you. To use your words: I also took Ibuprofen and paracetamol in the hope that it would help me. I lay there setting myself targets, firstly Easter and then my birthday, that whatever was afflicting me would disappear from whence it came, so in spite of non-diagnosis, my positivity remained, and I had endless hours to meditate.
Perhaps that positivity helped, who knows? Because, towards the end of that year I slowly and spontaneously recovered.
Sadly that was short-lived and another all-consuming illness arrived with many different and severe symptoms including nausea and vomiting, and yet more almost intolerable pain. In the midst of all this I received a phone call from my surgery informing me that I now had Chronic Kidney Disease which I must admit panicked me at the time due to the fact that I only had one kidney with which I had lived quite happily since having the other removed over 50 years earlier.
The big question in my head at the time was whether the Ibuprofen taken during previous months was to blame, even though I tried to stick to a very low dose over 7 months. Steroids worked their magic and although, being very pill-phobic, I really didn't want to take them and asked if I could have a smaller dose please!
The reply was that if I didn't go home and take the 8 pills immediately and each following day, my eyesight was at risk, added to which the returning body pain was once again threatening to see me bed bound.
So, if you have not been too bored and given up reading this far, lilythecat, I do apologise for the length , you will hopefully understand and sympathise with the fact that for many of us steroids have proved a lifeline and no-brainer.
The possibility also remains that the long-term undiagnosed, and therefore untreated, inflammation coursing through my body for so many months was the reason that GCA was let free to arrive on the scene. As you say yes, "this disease WILL go away" but at what cost to our bodies without steroids for those of us who are unlucky to succumb in its severest forms".
I do hope that you will remain one of the lucky ones, and wish you well. Thanks so much for your post! Thanks for any help you can provide! Hi Chris, I was so surprised to receive a reply to a message I posted more than 3 years ago!
In view of the temporal artery involvement, I assume that an urgent temporal artery biopsy or scan is being arranged. If not, then this should be done immediately. If GCA affecting the temporal artery is suspected, you should not wait for the tests but should be started on high dose steroids immediately to protect your eyesight.
Jaw pain was one of my symptoms, and in GCA the discomfort is usually felt on chewing. I started off on a dose of 40mg and luckily my eyesight was preserved. As you rightly say, steroids are sometimes prescribed for certain kidney issues. Als, untreated inflammation coursing through your body can also harm your organs, so the sooner you are diagnosed and treated, the better. I do hope this helps to reassure you and wish you well - do come back and let us know how you get on. How good it is to find somebody who is tackling this horrible illness in the same way as me.
I too decided not to take steroids, having several friends who do, and especially after reading the posts on this forum!
It seems to me that the problems of the illness are increased by the effects of the treatment! I am having acupuncture fortnightly, would go more often if I could afford it, and taking supplements recommended by a website thehealthierlife. And recently tried devils claw. Occasionally I miss out on the ibuprofen, with awful results. To encourage you, I have had it for 13 months now and recently found walking a lot easier, I have just come back from a 3 day camping trip so am very pleased with my progress.
Reading some of the above replies we have to wonder if we are being brave or foolish, but I decided I would rather do it the same way as you until something worse happens, because if it is an auto immune problem our bodies can be encouraged to beat it. I think it is totally wrong to assume the problems if the illness are increased by the effects of the treatment.