Is this normal!
Posted , 4 users are following.
Having finally gone back to see G.P on Tuesday ( took husband along for moral support) as feeling so unwell, I asked if if I could have a trial dose of steroids, which I was given. I managed to get a private appointment with a Rhumatologist on Thursday morning and he confirmed PMR. After 48 hours my symptoms of lower back and hip pain has gone, also the terrible pain in my neck shoulders experienced at night has gone, so has the awfull waves of feeling unwell but, I assumed ( probably foolishly) that I would now get back to being or rather feeling bouncing with energy, but this is not the case. Yes, my painful symptoms have gone but I feel very down and lethargic, is this normal? Would be most grateful for more advice. Many thanks, Laura
0 likes, 5 replies
Guest
Posted
Hallo, Laura and commiserations.
Yes, as far as anything about PMR can be called normal, what you describe certainly is which is why I am in here on this lovely morning and not out in my garden doing what needs doing. Yesterday I was pretty good and may be again tomorrow which is not that encouraging, I know, but everyone who posts on here will tell you the same. Today, I feel just like you;weary, discouraged, fed up and pretty damned useless. Pain is negligible but no energy, weak muscles, no stamina (changing two beds has left me puffing and shaky ) But, after a while, the length of which I cannot predict for myself and certainly not for anyone else, I know it will change and I'll be myself or thereabouts again and I have finally learned to hang on to that belief.
I won't bore you with a complete personal history but I think I can say I am qualified (by two bouts of PMR over five years, ) not medically, to give an opinion.
Do keep coming back here because I know you will find sympathetic help as I have and if sharing our trouble doesn't exactly halve it, it does help us to keep some perspective.
Very best wishes. BettyE
BettyE
Posted
EileenH
Posted
I'm glad you have found doctors who took you seriously - and yes, what you are experiencing is absolutely normal, inasfar as anything can be said to be normal with PMR
!
The response you have shown to steroids is the typical characteristic of PMR - the symptoms respond very quickly and fairly completely to a low to moderate dose, usually 15mg, of prednisolone. This tends to be be perhaps 60-70% immediately. HOWEVER - that is just the pain and stiffness in response to the reduction in inflammation of whatever bits are inflamed: although shoulders and hips are the most typical body parts to be affected there may also be various joints involved as well. Some people will \"bounce\" because that is what steroids do to them - not everybody responds with this side-effect which I suppose may be a shame because the one thing no-one does with PMR is bounce!
You have only been taking the steroids for a few days and have experienced the miraculous improvement that is such a relief. You may find that as time goes on the improvement will increase and, in your case, the tiredness and lethargy may improve, even if not disappear completely. I'm sure you have read other bits of this forum and will have noticed that some of the other ladies still have pain and other problems but at a level that allows them to function reasonably well - which they couldn't do before steroids. MrsO is one in point - she was bed-bound for several months and could only go anywhere in a wheelchair.
The fatigue, in particular, tends not to go away totally. I ski at least 3 or 4 days a week in the winter which might sound as if I have no problems at all, but I still have the occasional day where I feel as if I have been run over by a bus. It takes me a long time to build up the muscles again at the beginning of the season and I feel very tired for the first few weeks. I can't remember how long you said you had been feeling ill - but during that time you won't have done much and we lose \"condition\" very quickly once we are inactive so it may just be your body has to catch up.
The weather in GB this week has been a bit variable too hasn't it? I am very weather-sensitive and rapid changes really make me suffer - not so much with pain as feeling exhausted. I suspect that with autoimmune diseases there are a lot of other things going on which aren't necessarily regarded as part and parcel of the particular ailment we have. The diagnosis of PMR is a label: many muscles hurt, in Latin, and the syndome fits with the symptoms reported. There needs to be a differential diagnosis made in the first place as several things may mimic it, including hypothyroidism, rheumatoid arthritis and lots of other even more horrible things which don't respond as simply and dramatically to steroids.
Give it a bit more time - your history (before and after steroids) really does suggest PMR and you just need to wait and see how you will respond in the long term. First of all, learn to appreciate the fact at least you don't hurt even if you still feel yuk! Then learn to listen to your body and DON'T OVERDO IT! With time you will learn all sorts of coping mechanisms which will allow you to get back to a much more normal life but you must always bear in mind that STEROIDS ARE NOT A CURE for PMR, they allow you to live normally with care because they reduce the inflammation. If you try to get off them too quickly or try to abuse their beneficial effect on your body and do too much the PMR will raise its head again and, in the long term, you will be worse off. In some people it \"burns out\" in a few years, but it can recur.
Sit back for a bit and enjoy the summer when it is there! And keep us informed how you get on, we all hope things get even better,
all the best,
EileenH
Mrs_G
Posted
Glad to hear the pain has gone if nothing else When I first went on to steroids I did have the bounce felt sleep was unecessary and felt I could do anything but it doesent last anyway !
At the moment I feel normal ( most unusual !!) and feel I could do all the things I normally do but i do make sure I rest as well In January I had a flare up and had to go from 4mg to 15mg didnt get the steroid bounce and felt very down depressed listless and everything else so it all seems to vary
Glad you saw a Rheumy privately I did the same Just give it time and make sure you rest and look after yourself It hasnt gone it is just lurking behind the steroids !!
Best wishes and keep in touch
Mrs G
MrsO-UK_Surrey
Posted
It's so good to hear that you've managed to get the GP to hear what you are saying and trial you with the steroids, and what a fantastic result you are experiencing with what sounds like a total relief of pain.
Unfortunately, however, the lethargy is not a simple problem to tackle but just remember that your body has to make a big adjustment to the steroid treatment and this will take time. Most importantly, as Eileen has said, do not overdo things especially on a day when you feel more energetic as this could cause the inflammation to flare again. So just do the bare essentials and take it easy whilst your body adjusts - frustrating I know but worth it in the long run.
At least you are heading in the right direction now - meanwhile treat yourself to one of your favourite things - perhaps a nice meal out or a meet-up with a special friend for a chat.
Very best wishes,
MrsO