niggly not niggly

hi pam  ive been on pred 2 years.    lowering very slowly.   thats all i take, along with  vit d.   am 72.  i have had pmr  3,5  years but took 18  months b4  it was diagnosed.,      but at this age i would asume  i would have some aches  and pains  altho  i was really fit  before   pmr  just hope i dont get a flare   keep going  and  listen  to the xperts on the  forum   good luck to you

Hi pam, are you saying that you are not taking any prescribed medication eg, prednisolone for your PMR and are dealing with the symptoms of this condition with alternative therapy? Have you actually been diagnosed and if so when?

i know that the 3 months prior to my diagnosis I was simply in so much pain that daily everyday existence was unbearable and I was so happy when I was prescribed prednisolone although I was and am not happy about taking it. I had to think about the overall damage un challenged inflamation will do to my body against the long term side effects of prednisolone, and prednisolone won the day.

all the best, christina 

Hi Christina,

I have not been diagnosed - but I sure seem to have some of the the same symptoms as others - stiffness in hips and body achy sore upper arms (can't comb hair in morning) eases after a hot shower and pain spray on upper arms. Fortunately, I do not seem as severe as others (although my husband does have to put on my socks, and help me out of bed) and I am in good spirits.

I do not have fever and I go for a daily walk, but do rest a lot. I am 63, retired, and my 90 year old mom lives with my husband and I. She is doing well.

the stiffness and achiness seem to be getting worse, even tho I am doing a lot - cutting out wheat, coffee (except i do allow myself 1 cup in AM, alcohol) I have adrink of apple cider in water in AM (I read somewhere that that is helpful)

My daughter is a GP and my niece is a naturopath, so they are advising me.

I live in Edmonton Alberta Canada Where are you?

Hello pam, I live in cornwall in England, Great Britain. My only trip to Canada was to a little town called Sudbury, Ontario way back in 1976. I was 16 then, oh they were the days!

i must ask, how do you want to approach this PMR recovery journey. Do you not want to take prescribed medication? PMR is not pleasant and I chose the route that would give me back my life now, how long do you believe you can continue in your present state? Also I understand that many conditions have the same symptoms as PMR including vit d deficiency. I believe you should at the very least visit a Dr and have a blood test, how maddening would it be to find out that you actually had something very simple wrong with you that  could have been dealt with simply yet you have put yourself through all this pain for nothing. Regards, christina 

Hi Christina,

I have taken pred once before in my life - and it was AWFUL. I didn't sleep for 2 whole weeks - I am going to do everything I can to avoid taking it again. I have promised my Dr. daughter that I will get tests if I experience headaches and sore jaw as she is worried about Giant Cell Arteritis.

Meanwhile, I am going to see an acupunturist this week - and an osteopath next week.....

I'm pretty sure it's not a Vita D deficiency 9 (I take 4000 mg daily and I am outside every day - Edmonton is sunny, even in winter.)

I really appreciate your concern - I just feel whatever is wrong - is partly due to diet ...so, I'm exploring healing through improving my diet first.

I know Tylenol is not the best solution, and I will wean myself (just like being on pred) as I can. because my symptoms seem much less severe than others, and I don't have other health concerns I want to try this approach first. Anyone out there ever bee diagnosed with PMR and not used Pred? (I was reading on another site where people are dealing with PMR with nutrition, massage, acupuncture)

I had 5 years of PMR without pred - not by choice, I wasn't diagnosed as I was "too young" and my bloods were "normal". I managed - but my life was badly affected: if I couldn't get in the car and drive to park very close by I couldn't go there. I was in bed by 9pm every night, sometimes earlier. I had to change all my exercise habits - even which gym I used but the new one had a pool and daily aqua classes before lunchtime and that plus the sauna was a lifesaver. I took ibuprofen occasionally when the pain was really bad but it dodn't do more than take the edge off it. I gained weight because I couldn't exercise as I had before and no longer saw people because I couldn't join in what they were doing. In the same situation where I live now I would be pretty much housebound - there are no gyms with pools here and there would be very little I could do. I also used an osteopath and Bowen therapy which helped.

I never had a day without pain and it was horrible - had I been a person for whom PMR went into remission after a couple of years I suppose it mightn't have been so bad but 10 years on - it is still there. After about 5 years it suddenly hit like a 10 ton truck - I couldn't even get out of bed. I retrospect it was a severe episode of myofascial pain syndrome on top of the PMR but the PMR had also got much worse, especially the hip bursitis part. I could barely walk 100 yards and had to crawl up stairs on hands and knees. It was 6 months before anyone would try pred - and the rheumy only gave me 6 weeks worth (2 weeks each of 15, 10, 5mg)  to get me through a trip to the USA. In 6 hours I could walk down stairs normally, not one step at a time like a toddler, and walk back up. Within 6 hours of missing the first 5mg I was in bed in tears - it seemed worse than ever.The rheumy wasn't interested in even listening to me. A GP believed my story and gave me a prescription for pred.

It was like getting my life back - I was still tired but the pain was gone. Like Christina, if I do the wrong things, like carrying a bag - or last week my granddaughter's skis (she has asthma) - my shoulders hurt. I've had an interesting 5+ years - I have also developed atrial fibrillation due to the underlying autoimmune disorder and ended up with 3 weeks in hospital while that was sorted out. One form of corticosteroid was awful for me, massive weight gain, muscle wasting, a beard and my hair and skin went nuts. But I was switched to another and have lost all the weight and feel great - especially since I have for the first time got well below 10mg and an on 4mg with no problems at present.

PMR does damage to your entire body - it isn't just what you feel. There is uncontrolled inflammation of the blood vessels and muscles. Long term that increases risks of various things - including several forms of cancer. It isn't as simple as pred is bad, no pred is good. In PMR you are on much lower doses of pred than are usually used, it is only at the beginningyou are on 15mg, the idea is to reduce to the lowest dose that controls the symptoms. 

As my PMR was at the very beginning I would probably manage without pred again - but I doubt I would have held out the whole 10 years even at that level. Nothing gave me any relief - and believe me, chronic pain is NOT easy.

I have no doubt that there are people who claim they manage with alternative therapies - I used Bowen therapy and it did help certain aspects. But their PMR must be fairly mild. A few people have insisted they are managing with diet - very strict vegan improves joint pain in half of rheumatoid arthritis patients, maybe it helps with PMR. But most people struggle to stick to it and some of the versions quoted have required expensive outlandish ingredients which would have been difficult to obtain and a lot of preparation - physically I couldn't have done it, I could barely make a salad from prepared ingredients never mind cut, chop, liquidise and so on. I was in my early 50s and we were still earning a good salary, for older people, especially pensioners, it would have been very difficult if not impossible.

I have at various times tried a lot of dietary things - no wheat (I'm allergic to something in hard wheat), no gluten, no alcohol, I very rarely drink coffee anyway. Nothing has made any difference. I have a husband to feed - I already cook 2 different meals most of the time anyway, to change my diet much more would leave me in bed from exhaustion! 

Good luck if you can manage your PMR without pred, most of us will be quite envious! However, knowing what I know now I think I could manage things with pred much better - and that is why I am here on this forum to try to help others.

oh eileen  thats  horrid.  im here counting down the 3 years  they recon

it takes to be  rid of this  thing, and your  still at it 10 years on. you have my 

best regards.   and then there is all of us  comlaining after a couple of years

i just hope ypou are on the  right track   this time.

Yikes - what a time you have had. So far, the dietary adjustments I have had to make have been OK. My husband is very supportive and helpful - and cooks sometimes, so, we're coping. It's been a month of this regimen - and I notice the symptoms are worse not better. After I see the acupuncturist and osteopath, perhaps I will have some relief or ideas about what to do next. 

So far, I am getting out, visiting, exercising and feel mentally ok. I really appreciate your thoughts and concerns. Take care Pam

no christina  the niggles have appeared  the last  quater drop.   what i dont understand  if it  was a bit  of a flare  why is it there 1  day and  not  there as much the  next day.  i would have thought it  would be there all the time  getting  worse  which it isnt

Hi Pauline, prior to my diagnosis I had good and bad days of PMR symptoms. I had days when I was in so much pain I cried and cried. Then I had days when the pain was much better and I thought I was better, as if! 

I wonder if indeed I have hit the nail on the head and there is still abit of inflamation and you're not taking enough of a dose to keep it in check. Low doses are tricky, firstly our own adrenal glands have to start working again and if they are not working as well as they should then they'll be producing no steriods or very little so all the steriods your body has is the small amount from the preds. I wish I was more experienced with this preds tapering malarkey but I'm not so I like you get my answers from members of this site. But Pauline I would be inclined to up my preds to the last dose that I was comfortable at and slowly reduce by very small amounts because at the very low levels of preds I believe you will be suffering almost no side effects. All the best Pauline, I think you are almost there but not quite there yet. Christina 

I think you've probably forgotten what life without PMR is like!! Pred does help OA pain too and almost all of us will have a bit of that at our ages. And there is a bit of coincidence maybe?

Our muscles have been intolerant of exercise for a very long time - and it will take them time to get back to being trained - and by training I mean doing anything we aren't used to doing, because that is all training is.

barb  no the  pains are not the same  really. and i can deal with it really  i am never  get tierd   or anything.  just will carry on  and   get  down to nill

mg over  the next 3 month hopefully