Reduction Pain or overdoing it?

Just because the pred leaves you feeling well does not mean you are "cured" - the pred allows you to manage the symptoms to allow a reasonable quality of life. When you reduce it works best if you clear the decks and lie low for the first week or so - don't arrange to do anything you can't cancel at the last minute if you don't feel up to it. Then you will probably manage to do a fair bit - in manageable chunks. You are very unlikely to be able to achieve what you could do pre-PMR for a long time yet.

I know it sounds miserable - BUT you have a chronic illness and you must learn to live with it or suffer the consquences. You can listen to me being a misery guts - or you can find it out for yourself by bitter experience. You need to learn to manage your workload - and that involves saying a firm "No" at times.

Google "the spoons theory" by Christine Miserandino - that is how life with PMR works best. One day your PMR will go into remission - but that isn't yet. You will be able to do more with pred than without - but overdo it and you will wonder if the pred isn't doing anything. And yes, we've all been there!

Many thanks Eileen - I will try to be more sensible on the next drop in six weeks.

My problem is, I bought a flat but it has mould and other issues. I got it for a good price but I cant move in for a while. I am the other side of town and need to go back and forth with things and I dont have a car or much help...in fact mostly no help. But even so, I will definitely clear the decks the next time. I guess because its been 10 days I thought Id be fine. Obviously that was a mistake.

Thank you for using your own experience to help some of us newer predarians

Jennis - even after a few weeks you will probably find it all too easy to overdo it. It will be a long time before you are back to normal and even then you won't be back to the level of strength you had pre-PMR.

I am down to 5mg on a dead slow and stop reduction programme. Last week it snowed - on a morning I needed to get to the hospital for 9am. Half the garage ramp had been cleared of the 1in of snow and I thought I'd try to get up it with my snow tyres. It didn't work so I gave in and helped the neighbour clear the other bit - and I picked up the salt bucket so I could sprinkle some on the cleared area. I carried it less than 10 metres and set it down whilst I scattered salt on the ramp and then carried it back. The next morning I could feel my biceps. In the past that wouldn't have been a problem.

I don't know where you live - but in the UK there are "man with a van" offers from perfectly respectable guys looking to work self-employed. It costs a small amount - but you can load everything you want to move and take it in one so is overall no more than using public transport or a taxi. And most friends will offer a lift if you explain and offer a sweetener - good friends won't ask even that of course. Or how about buying a shopping trolley with wheels? But always push it, never pull. That damages shoulders!

Thanks again. I am in the UK

My stuff was in storage and 'Man and Van' moved it all in two weeks ago. But because the people had tenants the place was wrecked. My son's g/f kindly let me stay in her flat which was supposed to be for weeks and its become months.

The long and short is, I divorced and for various reasons we moved out with my flat still not through. I was in agony at the time and the docs were passing it off, treating me like I was being dramatic. Mean time I was trying to live out of suitcases on the floor of this tiny studio. After 3 months of pain, they finally did bloods and found the raised ESR. Even then it was weeks before they decided to treat it. I am guessing the pain of divorce and the stress would have not helped the PMR.

Although I am paying a man to decorate and deal with the mould and a broken bathroom I have to sort out curtains and stuff. Today for example I had to collect 2 curtain poles from Argos, put them in my trolley and walk home (about 20 minutes walk back). Yesterday I walked for 35 mins to the flat with my trolley and a bag. I must look like a bag lady!!!! Some people do help me now and then...tomorrow someone is coming with me to buy curtains. However, after talking with you, I can see how poorly I planned this last 10 days and that with careful planning next time, I could make myself 'be on holiday' for a few weeks and make sure there is nothing overwhelming to do.

Dear Jenny, no wonder you are in so much pain. I strongly believe that emotional stress contributes to PMR if not triggers it. I would love to find out who else has been through a lot of trauma before getting sick with PMR.

Anyway, you are lucky if you are still able to do all these things and to walk that much. I find that the more I do and walk the more severe the pain is the next few days. That might answer your question.

I hope you will get your life back on track and in an harmonic order soon. I have been through similar myself.

All the very best from Elisa.

"I would love to find out who else has been through a lot of trauma before getting sick with PMR."

Elisa - loads of us! It may have been shortly before or it may have been as much as a few years but it is something I would think applies to way over a half of the people I have come across. The other thing some of us think is that it has been present for much longer but at a lower level that we have managed with - I know I've had it for 10 years now, the first 5 years without it being recognised, but there were things earlier that fit.

Even after being diagnosed and treated, if you are then put under stress the symptoms will return and some doctors will suggest you raise the dose just a bit to carry you over the dodgy bit. That might be just your adrenal gland factory not being able to respond - however, the effect is the same.

Jennis - know where you're at - our daughter is going through a marriage disintegration and was chucked out of the marital home by her spouse. He now refuses to agree to a mutual divorce so she has nothing - no money except her salary as a nurse but initially she was a student so not entitled to any benefits, too ill to work, and we had to pay her rent. Now we have bought her a flat near where the children are in school but we were so lucky, it had been rented out but was sold vacant and had been sorted out for sale - cost a bit more but with a child with severe brittle asthma we had to be fussy. That of course adds to the rest.

Now you have a nearly nice home of your own you will settle down - but no wonder you suffered with PMR. Try to take it easier or you won't manage anything - tortoise and hare applies to almost everything in PMR. It sounds counter intuitive - but actually PLANNING a rest will let you get more done than pushing on until you are in a state of collapse the next day.

Thanks so much. Wish I had looked for advice before hand. I need to ask another question about withdrawal. I do a new thread.

Same here! Massive trauma. Two family members were diagnosed terminally ill last year and I also went through an awful grievance procedure at work, which was extremely stressful. It has now transpired that it was all because my job share colleague, wanted my hours and tried to get me the sack. She works afternoons and I work mornings. Needless to say all her allegations were totally false but I was treated as guilty until proven innocent, which fortunately I could prove both written/email/witnesses. It was the most awful thing ever. She is now leaving to get a job with more suitable hours! Everyone is so pleased she is leaving. Then both family members died within two months of each other, one being my dear Mum at the end of November last year and the other a lovely sister in law at the beginning of this month. The doctor says it isn't proven that PMR is brought on by stress, but it mostly seems to be the case that a very stressful time has preceded the onset.

gee i have soooo much trouble getting back on this forum , now to start with , the things i have learned about this pmr , is it seems to invade the immune system , usually after a bout of sickness like pneumonia or something like that , also stress seems to make it worse , but im not sure about the side affects of the prednisone , im back to only 1 mg a day but since i have taken that im not sure if i go higher will i feel not so exhausted or not or will i go back to feeling i cant walk a straight line , lol i do know i need to psych. myself up to get things done and get motivated ,otherwise i will lay around all day , as it is im determined to eat and drink right , so for a long time now i make my super juice in my blender , take vitamin b as well as celery tab. im not sure if in an earlier post i mentioned a book i was given , EAT FOR YOUR LIFE by Alison Taafe , i dont stick to all the rules but im pleased with what i do , im sure i would have been a lot worse if i had not tried to follow these , im not in pain as near as much as when i was 2 years ago and slowly cutting down the prednisone , thanks for listening to my ramble anyway lol

Hi and welcome "Old Nanna" - I don't believe you are really THAT old!!!!

I have just written a post on another forum that relates to this I think. I don't think it should be called PMR - I think it should be called polymyalgic SYNDROME. It sounds nit-picking but there are a whole range of different causes for a very similar clinical picture of sore and stiff muscles etc. If it wasn't called PMR we might get doctors to be a bit more sympathetic about looking for a "cure".

If someone has been under a great deal of stress I agree that the whole adrenal gland set-up may simply be exhausted - not producing cortisol properly etcetera etcetera. So it responds to pred as a "replacement therapy". Another may be due to inflammation - pred sorts that too. There is one form of polymyalgia that is caused by hormone imbalances - HRT sorts that as if by magic. Low thyroid function can do something similar - thyroxine sorts that. Low vit D can too - large doses of vit seem to help there. You COULD be borderline on more than one - and get the same sort of problems as a result even though blood tests don't show much in each individual case.

The evidence is certainly that when you are reducing and when you are below about 5 - 7mg you need to take it slowly in terms of what you do and how you reduce - because letting your body catch up slowly will get you better faster than forcing yourself to do things your body isn't ready for.

It seems it is a difficult lesson to learn!

Such an interesting thread. Ealain so sorry to read about what has happened to you.

Od Nanna I just finished that book and what a good book it is.

I am now reading anti-inflammation diet for dummies...another great book full of explanations and recipe's that are easy and uncomplicated.

Thanks for this information. I have just sent for the Anti-inflammation diet for dummies from Amazon, so thank you jennissw for that.

I can't find the Alison Taafe - Eat For Your Life on there. Where did you get your copy.

thanks

Elaine

Hi again ,everyone , just had my morning cuppa ,yes I know I shouldn't have that caffeine lol (tea not coffee ) just woke up ,I will make my super juice soon lol , and about the book , my grand daughter gave it to me , she worked in the cancer ward and got it off the auther herself , but her mum (my daughter ) bought hers on line ,gust go to google and type in the name ,that should show you , lovely receipes too , , I'm in my unit in marybourough qld Australia , , its sunny here today ,tomorrow predicts showers no pain today , not sure about energy ,yet ,

Thanks ElaineA that sound more like it but to get the doc.to see it our way is a problem , I just changed to a new clinic , this one needs to get used to me , I like to (sort of ) diagnose my problems too lol this doc is a whit south African , not sure if he has an Ausie sense of humor yet lol but I'm a one for taking a list of things to ask him and now I have a few more to add thanks please excuse my spelling too folks