Let it be?

I am new here

Hello to all the members of my community. I was diagnosed two weeks ago with pmr.

My gp found out within 15 minutes and lab confirmed it So I am on pred 30 mg and may go back to 20 tomorrow. I am so glad to have found this group, gives me a lot of information and support. The Kate Gilbert book" a survival guide "i know almost by heart. Can someone help me with this; in the previous month I could not do much exercise or training and now since the pred I have weak muscles and that results a.o. in bladder weakness. Went to a specialised fysio but I can't do the necessary excercises. Saw my gp today and he advises to let it be untill the disease fades away. feel lazy , while used to be in action all the time. Sorry for the grammar, I am Dutch.

12 Replies

  • Hi, and welcome,

    You should be able to do some gentle exercises, and need to really as they will help your muscles as long as it's not too strenuous or repetitive. . Why don't you try Pilates, it's good for your core as well as gently rebuilding your muscles. Make sure your instructor knows you have PMR, then she/he can make sure you are not overworking and therefore doing more damage.

    Many people also try yoga or tai chi, you have to do what suits you best.

    Good luck,

  • There are pelvic floor exercises on You Tube which you might find beneficial and don't apologise for your English. It's better than many native speakers' grammar!

  • Hi Zofitmogelijk and welcome to this friendly informative forum! You are so lucky to get such a quick diagnosis. 30 mgs seems a high starting dose for PMR, but I'm not qualified to comment really. I felt very strong and a bit high for about 6 weeks, I started on 20mgs. Of Prednisolone Now 8 months later I am creeping towards 10mgs.

    Do you live in the UK? It's just that Holland strikes me as an enlightened place and I wondered if the approach to PMR is different?

    Please don't try to run before you can walk and just allow yourself to be ill. This is a nasty disease and you need to take great care of yourself and adjust your lifestyle while it runs its course. I feel much stronger with the aid of Prednisolone, I couldn't get out of bed without help before. I am very keen to get off it though, for all the reasons in the book.

    This is a good place to bring the obstacles you meet on this journey. Someone always knows what to suggest. Go well.

  • I have just started an exercise class run by a PT in a warm therapy pool. The PT said that the bouency of the water will allow me to strengthen without getting hurt. So far so good...fingers crossed! Maybe you can find something like that?

  • That sounds wonderful,sometimes I feel like laying in my bath for hours,so relaxing!

  • Your grammar is as good as many "native" speakers! Nothing to apologise about. I realised you were from the Netherlands by your user name though- "As fit as possible"????

    However - just one point I can't leave: you CANNOT "confirm" PMR with a blood test, there is no definitive test for PMR. You have all the symptoms and raised inflammation blood markers - it makes the suspicion more likely. 20% of patients do not have raised blood tests but still have PMR.

    The bladder "thing" is part of PMR, not necessarily due to the pred. A lot of people develop interstitial cystitis which leads to the symptoms you are experiencing. It is less likely to be infections so if your doctor wants to give you antibiotics ask them to check a urine culture first. There are medications that calm down the bladder irritability - but most of us felt we should have taken out shares in Tena (the manufacturers of panty liners for urinary problems)!

    As TooSore says - if you can find an aqua aerobics class in a warm pool it is excellent. I had 5 years of PMR without pred and it kept me able to function. I started VERY gently - everything you do in water takes 7 times as much effort as on land so it is very easy to overdo it at the start. But you can still build up to be "best in the class" in time!

  • Thank you so much for wise warm and welcoming answers to my questions You all have so much more experience in coping with pmr. And I realise That I am priviliged with a gp and the probably right diagnose straight away. iT must have been very hard for Some of you living with pain and stiffness and without prednison ! Some answers, I live in Holland in a small farm in the middle of nowhere and Like very much to visit London, my granddaughter studies there. And I have not the idea Holland is enlightened, we are all more European than in the decennia before. And yes my name means as fit as possible. And I'll give iT a try, moving in hot water. And bought Tena mini And the protocol for treating pmr seems almost the same. 30 gr. Was a bit overdone and ment to shock pmr. That s not how iT works, as I know now, we need patience and perseverance, thanks again.

  • They are a good bunch on here. a simple pelvic floor would be to try and stop peeing midstream for a couple of seconds. Not first pee in morning as that is important to clear out to avoid urine infections.

  • Just another welcome to you from someone who lives 12 miles from the White House in Washington. How nice that you live on a small farm! I hope all goes well in the weeks and months ahead as you deal with the PMR, and I hope also that you will keep us advised.

    Best wishes, Barbara Y.

  • Hope you're not to. disappointed in the new "neighbours"

  • I am 100% Dutch in heritage but from immigrants to the U.S. in the mid 1800's. I have always wanted to visit your country but have not made it yet. I also have PMR so you have both my sympathy and good wishes for you on your journey.

  • So glad to find out it's not just me that has a bladder problem! I find walking downhill is worst. I try to do pelvic floor exercises when I remember, usually in bed at night. Have to have a stock of Tena pads handy. What a life!!

You may also like...