It's a long time since I have cried, but......
Posted , 16 users are following.
I'm in PAIN, fed up and sorry for myself!!
A couple of days ago I blacked out (again)! My husband managed, after a struggle, to scrape me up from the bathroom floor, wet, heavy, unable to help myself much. We managed to get me into bed, stayed in there for 1 1/2days and tried to get back to normal this morning BUT I'm in a lot of pain - PMR and aggressive OA! Pred hasn't worked, cocodamol hasn't worked, have had a cry and I suppose I am beginning to feel a bit better. It's good to have a cry now and again.😏
0 likes, 21 replies
Rimmy constance.de
Posted
Hello
You ARE having a rough time and its sounds like you are being quite reasonable being 'sorry for yourself'. Sometimes a good cry is also called for when all else fails as many of us will attest I'm sure !!
I'm not sure exactly where you are 'at' with your PMR journey and if your Pred dosage is sufficient to control your inflammation - but clearly OA is another matter and I have no knowledge or personal experience of that painful condition. I really wish I could say something to cheer you up or offer some useful and substantive 'advice' but it seems to me you need a lot more from your medicos than you seem to be (currently) getting. If you are 'blacking out' and in severe pain then you really do need some decent attention to sort things out so your quality of life is dramatically improved. So I can only suggest you go back to your doctor or specialist and see what more can be done. I do hope things improve for you very soon !!
Best wishes
Rimmy
constance.de Rimmy
Posted
Thanks Rimmy. I've had PMR for 5 1/2 years - a very aggressive PMR, then 3 years ago Polyarthritis made itself known - most joints are affected. It started slowly then spread. No joint replacement possible - where would they start?
This time I blacked out at home, so we were able to cope (?!?). During the last 2 1/2 years I have collapsed 3 times in public places - the result each time was a two week hospital stay.
The doctors have checked everything they can but have never really found out what causes the blackouts - except for inflamation, once ending in sepsis. Can't be too serious, can it?!?😀
Elijo constance.de
Posted
t sounds serious to me, blacking out several times has to have a cause. How about a brain scan? I would definitely want to know why I'm blacking out. Inflamation ending in sepsis doesn't seem very common to me. Looks as if you need referrals to specialist, at least to rule out something more serious going on. Hope they find out soon! Do take care of yourself!!! Best wishes, Elinor
BettyE constance.de
Posted
Before I was diagnosed the pain had me in tears and I wouldn't think anyone would describe me as a wimp. I sympathise.
How much pred. are you taking now? What does your GP say? Is S/he trying to get you to reduce too fast, perhaps? You will have read many on here who have to up their dose to have a liveable life.
I have OA and have done for years. One night in bed makes me stiff. Pain killers just make me feel sick and, as you say, do little for the pain. I do find that heat helps. Wheat bag or gel bags in microwave are a comfort, I find.
Hope you feel better very soon.
constance.de BettyE
Posted
After a few flares, I stablised at 5 mg for several months then I started the DSNS method and got down to 3 1/2 mg, then ESR rose to 45 so I had to go up to 5 mg. I am 'stuck' on that now but occasionally I take 6 mg (like today). What a carry on!
lodgerUK_NE constance.de
Posted
Constance,
Now instead of feeling sorry for yourself.............up the pred to 10mg as a first step, then have a discussion with your medics about the blackouts on the lines 'that it could possibly be that the blood supply to the brain is impaired. PMR and its mate Poly arthritis, as far as I am aware, can impact on the blood supply',
The above is my take on it all, just remember I am not a medical person, just someone who sometimes comes from the left field and outside the box.
In the meantime, I am sending you 62 diamond tears and 62 hand-embroidered handkerchiefs (virtual of course) to wipe them away (and perhaps add a small crane as a 'just in case'
which hopefully will bring back that bright smile of yours.
constance.de lodgerUK_NE
Posted
Thanks lodger - you always cheer me up. The 'crane' is a good idea, my husband would really appreciate it.😀😀
You're right about the blood. The last readings showed some discrepencies. Really must go nto it - after all I would need 63 diamonds in 2 years time!!
erika59785 constance.de
Posted
Blockhead constance.de
Posted
Seems if it were PMR the prednisone would work, maybe you need a higher dose. When I was in that situation 20 MG a day worked. I've heard of some people needing 60 MG a day!
Hope you get well.
daniel08939 constance.de
Posted
My Wife got real dizzy and feel to the floor. I took her to the hospital and they tested everything. She was normal on every measure. They let her go home the same day, usually want to watch over night , because they were sure she had nothing serious wrong. Two days later she saw her GP. Her Doctor suggested she had "Vertigo" Did a test called Epley Manuver and it confirmed vertigo. Crystals in her inner ear.
EileenH constance.de
Posted
I appreciate they have done lots of tests - but while you were in hospital the other times did you have black-outs? Were you in bed a lot of the time there? Have they done long term ECG monitors while you live a normal life - and covering a period when you have a black-out? Just wondering and being nosey!
In the absence of anything more useful: sending lots of virtual hugs xxxxx
constance.de EileenH
Posted
Didn't have any blackouts IN hospital, was in there because I had the blackouts in public. I never know when these blackouts will happen until they hit me. I've only had 3 in the whole of this year, therefore I presume they can't find the reason for them.
I've had long term ECGs before, all in order. I believe lodger is right when she says it might be something to do with the blood. Blood pressure did shoot up each time I was in hospital, as did the ESR..
Another page of my story.😏
EileenH constance.de
Posted
That's what I mean - if you didn't have while in hospital they didn't have an opportunity to find out the cause. It's like an intermittent fault with the boiler or the car - next to impossible to identify if you weren't monitoring WHILE it happened.
And if you didn't have one WHILE you had a Holter-ECG, that means they haven't seen what happens at the time.
constance.de EileenH
Posted
Quite! But I can't stay in hospital for months waiting for another blackout.😀
EileenH constance.de
Posted
EileenH
Posted
And that's why I asked what you "did" in hospital - if you were resting lots it isn't a real reflection of what you do.
constance.de EileenH
Posted
I've decided to do as you and lodger have suggested and put up my pred to 10 mg (you've been telling me for ages that I should do so). I've been in real pain all day and I can't put my arms up over my head (not happened in 3 years) inflamation must be high. Doctor's visit asap!
lodgerUK_NE constance.de
Posted