am i losing my mind?
Posted , 13 users are following.
I was diagnosed with pmr 8 weeks ago...im on predisone 17.5 after decrease from 20... my sed rate started at 68 and is now 45.. here is my problem...i had every classic symtom before diagnosis and i have no idea how long ive had it ..since cordisone my pain is a lot better but i still get tired easy to the point where i have to lay down...i still ache all over at times and just dont feel good...i have good days and bad days...my appitite is back with an increase but i crave foods that i never cared for before like milk..eggs .. juice and ice cream..not my favorite foods at all...after a few hours of normal activity im beat...i was under the impression that i would feel better after predisone but for the most part i feel about the same except pain is better...am i normal or do i need to tell my dr..this is new to me and i dont know what to expect through this process..i am 68 and getting discouraged but my faith always helps..thank you for any advice or informaion...sharon
5 likes, 23 replies
tavidu tuningup
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Oregonjohn-UK tuningup
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EileenH tuningup
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Pred combats the inflammation, reducing the swelling it causes and so the also the pain and stiffness. For most people this is enough to allow a fairly normal lifestyle - but rarely does it take them back to how they were pre-PMR. The pred has no effect at all on the fatigue aspect of the autoimmune disorder, that is something to do with the autoimmune bit and no one really knows how or why or how it can be improved.
As I say, the pain relief is rarely 100%, a 70% global improvement with pred is what is looked for as being typical of PMR. The rest of the management of PMR is very much up to you. It requires rest and adaptation of your lifestyle - and it may mean giving up some things. Certainly, if you take pred, feel well and immediately go back to "normal" activities you will very likely suffer in the way you describe. Your muscles have become intolerant of acute exercise - even a small amount of activity may be the equivalent of having run a marathon, your muscles will protest and they will take much much longer to recover than if they were healthy. This is made worse by them being unable to warn you in the normal way that you are overdoing it.
If you look at your good and bad days then you will probably find that a good day is followed soon after by a bad day: it may be the next day or it may be 2 days later. I remember one lady saying that in the early days she would be out shopping, say in a clothes shop, and suddenly felt as if she had hit a brick wall and just wanted to lie down on the floor under the dress rails and go to sleep. You have to learn to pace yourself, not to do too much all at one go. In time you will learn how to know but to do that you have to stop early - if you don't suffer you can try doing a bit more the next time, and a bit more. You will be able to do more - but not all at once.
Some people feel very euphoric on pred - I can only assume this has led to them saying to their doctor how well they feel and the doctors don't realise it is the pred speaking. There are doctors who will tell patients they will be "back to normal", "there will be no pain", they will "be off pred in a year (or two)", All I can say is: not in the PMR world I inhabit, along with a few hundred PMR patients along with me on the 3 forums here in the UK.
The appetite thing is the pred - it often causes increased appetite and it changes the way your body processes carbohydrate. Both these things can lead to weight gain - so be careful. To some extent there may be weight gain you cannot control but that is less common - it is possible to avoid weight gain and the associated problems but being very strict with yourself over diet. Cutting carbs definitely does help with the weight gain problem and, believe me, not putting on weight in the first place is much easier than trying to lose it later! It is possible to lose weight while on pred - I have lost 37 lbs in the last two and a half years, very slowly, 2lbs a month was good! But it can be done.
So no, you aren't going mad, you are pretty normal (as we say, whatever that is) and there is no real need to tell your doctor in terms of "is it anything to worry about".
But you are going to have a test of patience - if you don't learn anything else with PMR, you will learn that. Acceptance is a good attitude to practise. I don't mean that in the sense of "giving in", I mean it in the sense of don't waste energy railing against the unfairness and wailing about what you have lost. Look at what you have and readjust the SatNav - you are in the place you are in, and you have to work from this place on the map, not the other, sunnier, side of the valley. Rest and task management are essential - it may not be forever, you will recover and be able to do far more than at present. Just not yet.
Follow this link and you will find a post with a load of other links to useful and reliable sources of information
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
MrsO-UK_Surrey tuningup
Posted
So rather than feel "discouraged", you should feel encouraged by the fact that your pain has improved, and also that you mention having good days and bad. It is very important not to overdo things on the "good" days even if you feel like it because PMR will come back to bite on the next. You need to give those steroids every opportunity to do their job and the only way to achieve that is to be kind to yourself and have plenty of rest and TLC.
TERI23 MrsO-UK_Surrey
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EileenH TERI23
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However - I just want to say to you it IS possible to lose weight while still on pred. It isn't easy, I will grant you that, but I have lost the 37lbs I put on - by drastically cutting carbohydrates. Nothing else worked and if I eat more than 50g useable carb a day I don't lose weight and even in a good month 2lbs was an achievement. My doctor has been great though - even half a pound is cheered! In fact, she cheers not having put weight on!
TERI23 EileenH
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MrsO-UK_Surrey TERI23
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I was on steroids for 4.5 years and only managed to get off them by reducing down through the lower doses by just half a mg tapering over 7 weeks to each new dose.
Chin up, you'll get there.
TERI23 MrsO-UK_Surrey
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EileenH TERI23
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Mrs.Mac-Canada EileenH
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what do you have for breakfast if you eat little fruit and no cereals or toast. Help me😕
EileenH Mrs.Mac-Canada
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My favourite breakfast when it is included at a hotel is eggs and bacon/speck. Which I could eat every day...
ptolemy tuningup
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TERI23 ptolemy
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EileenH TERI23
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It is also far better for patients and support today in 2015 than it was in 2005. This was the only UK forum then, there was a Canadian one but it has faded away I think - but now there are 3 different charities in the UK, two of them have forums and websites for information and one has developed a DVD called "You are not alone" for their members which has doctors, physios and patients explaining how PMR and pred affect us day to day. Anyone who joins their support charity also receives a handout which tells them all sorts of things about PMR and GCA and (above all) pred.