Hi all. I am really reaching my limits with this. I cannot find a dose of pred that works....23.5....I had one great day but everything tanked (rinse and repeat for months). I am due to go on Actemra...just not sure when and now I have this skin thing that I thought was improving with oral and topical antibiotics that might delay that. The healing might have stalled. I need to find a derm which I am working on. Last night I hit a wall....it's not just the pain that is the issue.....I can handle a fair amount after 30 plus years of autoimmune issues. But it's the fact that there IS a high level of pain with little relief or breaks on top of weak muscles and joints and a fatigue like no other. I shake....I don't feel secure on my feet. I can't remember anything and I am losing my hair to boot. My OA is so much worse as well. So my knees are thr worst they have been. I know many here have dealt with this so much longer than I and dealt with more but I think it's getting to me that I moved here about a year and a half ago to a perfect new house.....but it's a wreck and that is depressing. I also never got the chance to learn about the area or really meet anyone. I moved to Delaware from Maryland I had been on a grest block for 20 years and we were like one big family. That won't happen here which is ok...but I did want to do things. Can't. Anyway it hits me hard at times.
My friends don't understand what this is. I know when I had to go on disability.some relationships changed. That was hard for lots of reasons...(job) great loss for me. Now this is so much worse. So there are a few people I want to understand what this really is..plus who knows I wish I had heard of it before I developed it. So I thought a video would be best. I know someone posted some and I have looked for them but have not found them. If you know of any ....shorter ones...could you send me the links. I would really appreciate it.
Sorry for the big whine....it wins sometimes. I think also going from lock down to downsizing to selling my house to buying my new house and moving and going right into PMR has just complicated it more. I do ok for a bit and this place and you have been the most positive thing....but you can still hit a wall.
Thanks for your suggestions. Please take care of yourselves.
Be well.
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Wallysma
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I have found that people are not really interested in other people’s illnesses, aches and pains. They ask how are you and then hope you don’t tell them!
I have found that unless people have had direct experience of Polymyalgia (themselves, family or friends) they have no idea about the illness. I have developed a thick skin now and don't care anymore if people don't understand when I have to cancel meeting up at short notice! I have tried over the years to explain but if they take it personally then I have found that life is a lot easier without them.....truly 😒!
That is true, but most people don’t, as you say, have any gory details. I think as I get older more and more of my friends have conversations with me about their latest aches and pains.
Actually with a few of my friends who have various and assorted health issues it's crazy the conversations are nothing but the latest aches and pains.....which is where the stereo- typical old codgers talking about bowel movements ...I draw the.line there I am sorry.
Piglette......Yes you are right which is why I usually say "fine". This is for 3 people specifically who want to know and should know -- 2 are my emergency contact people.
That's fun. I wish I was vertical! Lol. Just kidding. I wish I was in bed but my four legged child isn't cooperating at the moment. He's feeling a little needy I guess. Oh well.
" Hi,how are you.." " oh hi,fine thank you.." I reply in a bright and cheerful manner when fine means F.....d-up . insecure .neurotic. emotional in my mind!!
it’s not a whine - we’ve all been there at different times for different reasons. This damn disease limits us and we have to live within its borders and sometimes it just feels too much. It sounds as if you’ve had too much to deal with in too short a space of time. Like you, when overwhelmed, I always pile on the negatives as my husband used to point out! I have to unpick it and start finding little bits of positive amongst the other stuff. Anyway, big hug, go easy, watch the videos and feel that you are not alone because you’re not. ❤️
Thank you for understanding I appreciate the hug. This is the.most difficult of all of my conditions and I can't seem to find a dose of pred that works for more than a bit. But I just have to stick to it....the loss of control is maddening. But you get it. Thanks again for the reply. You take care as well. Be well.
check out Etsy on chronic diseases. My granddaughter has a weird one too.. it mimics a brain tumor, but isn’t. But still the pain, the fatigue and not being able to meet even fun commitments. So I found sweatshirts and other things ( spoons, anyone?) for her there. Not specific to PMR, but maybe helpful for the others. I also really liked the cartoon booklet done by an occupational therapist/ cartoonist. Good luck and love yourself
Thank you FabricArt. I will check out Etsy. I love that site. The spoons at one time were related to fibromyalgia I think...which I have. Years ago I got a magnet that said..."beware fibro flare" Anyway I will go see it for sure. Thanks again. Take care of yourself! Be well.
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