Feel Better Soon

I was diagnosed with PMR 2 and a half years ago. It was good to find this site on a particularly 'down' day and relate so much to what I have read so far.

While realising this is not a fatal disease and I have much to be grateful for there is one thing that really gets me down.

No matter how often I explain in detail to friends, colleagues and even family how dreadful I am feeling, because I look OK (some days) and move fairly freely (some days!) there is always the expectation that I will feel better soon!

This usually means doing whatever it is I used to do that they now still expect me to do. Exhaustion is dismissed as trivial.

I do not like to go on about the many varied symptoms and
I'm sure they mean well but cheery greetings of "feeling better today" or the expectation that I will soon be OK again as if I had flu do nothing but depress me!!

Anyone relate to this?
Inpart Inpart
70+, F
4 Responses Jan 21, 2013

yes folk look at me when i use a cane some days, and walk wellon others, or cant get in the car without help, it is a very miserable condition to live with, some must think we are just looking for sympathy! heres hoping for a better treatment for pmr, god bless , we are not alone

I know. When i was totally miserable and it took me ten times as long to run an errand, get out of the car, take a nap in the car on my lunch hour - i hid it from everyone but myself. Now I just keep quiet and they forget about it. Better than being asked all the time and wondering if i'll now retire..ugh! I'll retire when I want to! BUT i am at a dose that makes me feel so much better - until it comes back and then we up the dose again! Ugh!

Yes I find most people don't want to know and certainly don't want to talk about it. My family have been great and my daughter bought me this iPad so I could learn how to use it while I can't do much.
I was a physiotherapist but hadn't come across PMR much. I thought I could empathise with people but until you have a long term illness you don't realise how depressing it can be. People live such fast lives they can't understand those in the slow lane and many don't have the time or inclination to try.
To help your frustration and depression you may find it helpful to keep a diary. I have since diagnosis in Aug 2012 .
Although I don't feel much better than in Sept after the initial 30 mg prednisalone was dropped
20 mg I am now on 8mg which means I am a a lot better than then.so good luck

I am newly diagnosed just over a week. I haven't decided on my treatment yet. I have been on prednisone in the past as I have asthma too. My pulmonolgist knows that I won't take them unless I am a minute away from going to the hospital for not being able to breathe. I just don't want to do them. I have started losing weight, much needed, and I can't fathom the thought of getting bigger than I already am. I like you look "normal" like nothing is wrong, but I hurt so badly in my shoulders to hips through both my arms to hands. Opening a bottle is painful, brushing my hair sometimes is painful. This disease sucks!! I am only 52! I am a nurse and have never heard of this before. I am thankful it isn't deadly, not exactly, but the treatments lend themselves to other issues to deal with. Thanks for sharing your thoughts.

Thanks for sharing. My husband was treated with steroids for asthma so although I had not taken them myself was very aware of the damage they do so I fought very hard against taking them. Sadly they seem to be the only thing that helps, I just try to keep the dose as low as I can manage on so it is a balancing act all the time. Too low a dose and I spend my life going from bed to armchair, take more and I am able to 'live' but a whole host of side effects crop up!

Yes it is a horrid disease, I am so sorry to hear you are suffering with it so young but perhapse it will burn itself out quicker because of that.