Hello
Today,when I told a friend, yesterday, that I was having a particularly hard day, which is something I rarely share, she texted back that her stove wasnt
working and so we were both having a bad day.. wow really?
Almost as bad as a casheir at the pharmacy when I bought my pred , telling me she knew a lady who had to shave every day from a side effect of facial hair.
Have to just take a deep breath i guess and be grateful for my supportive
family and this forum of understanding folk.
Gina
Gina30088,
I can relate. I talk about my issues with friends and
family but usually feel ignored. I get replies like Oh really? Oh you just don't try or you've chosen not to do it. Most regarding exercise. I was doing pretty well in the beginning. Now when I attempt something a bit vigorous I pay for it. No one I knows has PMR. I feel basically alone except for this forum. They make me feel like a hypochondriac. I'm not!
I'm into year 4 with PMR. The longer I have it the more flares I'm getting and they last longer. I was pretty stable at 5mg but now I've had to up it twice since Dec. I'm at 20 right now. My left hip is giving me hell.
I'd like to think I'll hit a peak then it will just go away.
I know, I'm dreaming.
You will have to get used to the "remarks" I`m afraid....have had them for years....even from other half, who still dosen`t understand PMR!...
The most common one is ...."you look well".....I say it`s the drugs, pity I don`t feel how I look!........
Many people have never heard of Polymyalgia, but have Fibromyalgia...
.
Like Pam I get many flares, and I always get....why aren`t the steroids working, and surely they can give you something else!,,grrrrrrrrr
Good luck.......
It's the "can't they give you something else" and not believing it when you reply "no" that is really irritating! I don't have it too bad from others - but I do avoid them! All my real friends have PMR or something even worse!
I can also relate to this...Luckily the pred keeps the pain and stiffness in check most of the time...however my main problem has always been the exhaustion I feel after doing anything vigourous. I don't even bother explaining to people anymore...I'm just very choosy about what I do.
I had a lot more energy when i was on a higher dose but as I've reduced the fatigue has got worse...Pacing has become my middle name
I got a little of this during the 13 years I had my lower back pain. But when I got PMR last year my pain level nearly tripled. And even on prednisone it's still bad. And I am surprised at the people who were very good about my bad back but are acting stupid about my condition now. Even my husband who has been and is very supportive has started to compare his aging aches and pains to my pain whenever I mention I hurt. In fact I was incredulous the other day when my sister made the comment "Now that you're feeling better..." and I have no idea where she got the idea that I was feeling better
Hi Gina, I think in general people are not interested in other people's aches and pains irrespective of how bad they are as it is difficult for them to relate to something they do not particularly understand. It also can be very boring! There is a lady down the road who is always going on about her MRI scans, xrays, ops etc. No one actually knows what is wrong with her. I did sympathise initially but now I try and avoid her as that is her complete conversation.
A stove not working can be a nightmare in a different way to a bad flare or continuous pain. I find both awful! I must admit since I got a stick I am finding people incredibly helpful.
I do think we have to watch how much we talk about our illness. Nobody wants to hear about it all the time or every time they see us. I've got to the point where if somebody asks me how I'm doing I just lie and say I'm doing fine. If they ask me pointed questions I might give them a couple of brief real answers but I don't believe people really want to know details about my illness.
I am surprised (and distressed) when someone on this forum describes being in severe pain- the only good thing about PMR is that (compared to other autoimmune diseases) there is a treatment, prednisone. Prenisone does not usually help the fatigue, but it should control the pain.
Is it possible that you are not taking enough prednisone to give you relief? Maybe not 100%, but the pain should not be that bad if you are able to take prednisone (some unlucky people can't.)
If you are in severe pain on prednisone, maybe you should see your doctor and re-examine the diagnosis! Or try a higher dose of prednisone. There may be a pathway to lessening your suffering! Best of luck!
yes I agree and I have told a very small handful, and since this is so new its ,mostly because its those I care about. wondering why I am not as available to them. and even that not in great detail..
Once or twice I've been asked about PMR, apparently with interest, and I have been amazed at the reaction - when I describe the days before diagnosis, there is shock and sympathy. I'm just so used to not sharing, not even with the family, that when someone does express interest I'm very moved. But I tend to spend little time on it; it comes comes up during discussions about the state of our medical system when I mention that what I have couldn't be adequately handled by random doctors in a drop-in clinic.
I tend to get wordy so I in trying not to I cut out a lot of info in my post. But I am sure that I have PMR because the pain that I have from PMR is gone when my prednisone level is good. In fact I have to argue with my doctor that my back hurts worse and different when it's PMR if that makes sense. But I also get a lot of pain in my arms and legs. And I know legs aren't one of the normal areas but it is for me and my rheumatologist and GP seem to think that could be PMR. Additionally I have been struggling to reduce lately. And when I was diagnosed both of my inflammation markers were high and I was running a low grade fever in the morning. Thank you for your concern I sincerely appreciate it.
much the same. I mention it simply if I need to make people aware if I can't do something. I talk to my better half so she knows where I'm up to. But basically "its my disease" and I have to manage it. But that's just fleeting, just as I know where she is up to.
Like you, occasionally out of the blue someone asks. And that's special.
We did a lot of independent travel. When there is a problem there is no alternative, it simply has to be fixed. And the support available is less than when at home. Much like my working life really. Sort the problems out and worry about them later. So with that background PMR is just somethng else to be managed.
I guess what it boils down to is that I don't intend to let it rule my life. Not quite that easy of course, but tomorrow will always be better.
People can be very helpful on the other hand. The other day I went to pick up a parcel from the sorting office and the place was packed as there was some woman taking ages, they thought she was shipping drugs to Ireland! plumped myself down on a very low excuse for a sofa wondering if I would ever get up. When it was my turn some guy took my card and gave it to the sorting office person and then got my parcel. Then three people came to help me stand up again. It made me feel really good for the rest of the day.
Also I was walking down to the swimming pool and a lady coming in the opposite direction offered to carry my bag for me. Perhaps it is because I look pathetic!