Sorry to bother again......
Posted , 13 users are following.
Hi again,
So I'm going to make an assumption that anyone reading this already is up to date on my story.
So, I saw my Rheumy on Thursday. I told her I'd been able to get down to 3mg for about a month but had a flair and with the help and info (and my own decision) I'd obtained from this forum, I went back up by 5mg.
she was NOT happy.
however, she also was aware of what a TOUGH few months I'd had (and continue to be having), she understood.
but her instructions were to immediately decrease by .5mg everyday till I'm back to 3mg, then stay on that for 2wks....then down half mg. every week there after.
she said I was a "very complex, complicated case", due to all my problems😢😢.
Well DUH!! but I Sure didn't ask for ANY of this!
anyway, (I know I'm rambling...sorry), today my right shoulder and my right jaw (1st time) are 'killing' me!
I'm SO tired. I don't want to be in pain anymore. I'm completely overwhelmed. any words of advice or just kind words would be GREATLY appreciated.
I'm trying so hard to not 'dump' any of my fears on friends and family.
thx, Lynda
0 likes, 23 replies
ina0821 lynda62707
Posted
dump away because thats what we are here for and we all get it we can all relate to almost everything posted on here with regard to this horrible disease lay people ha ea difficult time because if they cant see the disease, which they cant or never heard of it,most havent then how could they relate or understand as for rheumys, most probably don't know half as much as we do because when its you, you are bested in findimg out everything there is to know about this debilitating long term disease
lynda62707 ina0821
Posted
thank you ina0821....
you are Soooo right about if you don't look like you're "fighting" a disease, people forget. In my case, the only "giveaway" is this crummy oxygen situation, (the cannula is a HUGE CLUE!😁 but even that doesn't speak to my breathing difficulties cuz if I'm sitting and relatively still, my breathing is fairly normal.
But the rest of it I really try to play down.......I don't want to be defined by my illnesses!
I'm starting to feel people slowly pull back from me as I can never go out with them anymore. friends will ask me out to lunch or dinner and I'll say yes, as I REALLY want to go. but, ultimately I end up canceling cuz I just don't feel well. I get it. I'm screwing up there plans as well, and I end up (not only feeling physically awful), but feeling SO GUILTY.
WOW......I'm so sorry. I got WAY carried away.
you just got "dumped" on!
I'm not liking myself right now.
Sorry
Flutterbie57 lynda62707
Posted
It is not dumping !!! It is just venting.....a necessity for your own mental health, and as someone else has already said, we understand ! Go girl !........but fight that Guilt ! Take care of yourself !
Twopies lynda62707
Posted
your doctor sounds like a twit. thats the fastest reduction ive ever heard! dont know what your other options might be for care, but she doesnt sound right to me. of course youre going to flare on her protocol. i know i coildnt tolerate it myself.
isolation: when i first got ill many years ago, my husband told me that isolation was going to be my worst symptom. i told him no way--ive always been the ringleader, the one making the plans, leading the pack. yet here i am, terribly isolated because: people dont visit the sick. for all kinds of reasons, not even my nurse friends. they just dont. one time my husband ran into one of my friends who asked how i was doing, said she hadnt seen me forever, said she was gonna have to visit. my husband said, "if you do, youll be the first." she never did.
so i know what you are going through and if we lived closer, i would visit you and drive you crazy so there!
lynda62707 Twopies
Posted
Twopies......Lol!😁😁😁
I wish we did live close together!
nick67069 lynda62707
Posted
"she was NOT happy." Who cares? It is not your job to make her happy, but it is her job to help YOU with pain. I would go with symptoms and take care of pain regardless of her request for reduction. If you need 5mg so be it. What difference will it make if you are on 3mg or 5mg in a long run? But it makes huge difference on your QOL now. That would be my advice .
mavis84874 nick67069
Posted
I have had pmr since 2004 . I started on 20mg of predni solone but managed to get down to 3mg eventually but found I was better on 5mg which I have stayed on for about 4 years, at the moment I am trying to reduce again, went down to 2mg but was in a lot of pain, so now have increased again to three. I don't think at the moment that I will ever be free horrible pain, but will keep trying.
lynda62707 nick67069
Posted
Arrggg.....this is all so confusing!
if I could turn back time🎶🎵🎶!
Anhaga mavis84874
Posted
I use the dead slow method and was stuck at 2.5 mg forever it seemed, following a flare. Something like two years. I finally decided to try tapering by repeating each step of the DSNS method. This means each .5 mg takes 3 months to taper, but I'm now approaching 1 mg, so it seems to be working.
Flutterbie57 lynda62707
Posted
For my own mental well being I kept telling myself that some great power out there in the universe thought that it was time for me to take time out for myself, slow down, smell the daisies, enjoy life, etc. It worked for me for the first year. A few years later I have to keep singing "always look on the bright side of life de doop etc"
mary19068 lynda62707
Posted
Hi lynda62707
Hey less of the "bothering" glad to hear from you. Feeling for you and the position you are in,
as you say you didn't ask for it. Obviously your rheumy wants you to be off pred so do as she says she is the professional. Your not only dealing with PMR but lymphoma aswell not a good place to be, but with lots of love and support you will come through it and you have that from me dear friend. Check in anytime you wish you will always get caring folk who will listen on the forum. Keep smiling, keep positive..sending tons of love and good caring thoughts your way😚😍😊xx
lynda62707 mary19068
Posted
Dearest Mary, you are TRULY one of the kindest, most caring people I've ever "known"!
and a little bit "goofy" (such as I), makes you that much more appreciated by me!
I wish we lived close by.
thank you for your kind words. they are REALLY needed right now. I'm so scared of what's around the corner, and trying to keep it all together is exhausting.
please keep me in your thoughts; and keep posting.😘👭💕❤.
mary19068 lynda62707
Posted
Hi lynda62707
I will check in on you from time to time as if i'm knocking on your door for a coffee and a chinwag. You also knock mine. I read your other posts and see you have been through the mill alright! All this must have sure taken it out of you, you must be feeling quite fragile, it's no wonder your not up to going out. You need to save all your energy and rest up as much as you can but do have the odd walk if you are up to it.
It's hard for others to comprehend how you are feeling and what you are going through, but you do have friends on the forum who can empathize and understand your situation. Keep posting..sending gentle hugs and loadsaluv with kind and caring thoughts....stay positive.👍😍😚😊
mary19068
Posted
Hi lynda62707
Forgot to mention that it is a bit confusing being given varied advice. Different folk react to different treatment, if i were in your position at the moment i would listen to my rheumy their is obviously a reason why she wants you off pred, of course though, the decision is yours.. Hope the Endoscopy and Colonoscopy procedures go well. I've heard they are not too invasive and you do get a little sedation so you are relaxed. Let us know how you got on. Will be thinking of you....gentle hugs and loadsaluv...❤👍😚😊
patricia43291 lynda62707
Posted
Lynda,
Did the pain in the shoulder and neck go away when you went up to 5? If so, I'd find another doc.
lynda62707 patricia43291
Posted
Patricia, actually I'd gone up BY 5mg to a total of 8mg.
and yes, it worked like magic!
but when I told her that, she said, "prednisone will take away any type of pain; so of course if you up your dosage, you're gonna feel better. I want you off this, so you need to follow these instructions".
Arrggg!