I would love a month or two without pain....a week would be wonderful!!! A day even!!!! How long have you had Fibro? I don't get flares anymore. I did many years ago. It's just all the time now. No "remissions" at all. It's totally exhausting. I don't sleep well at night 'cause I'm in pain and all day I'm usually a zombie 'cause I'm tired. Oh yeah, and I'm in pain then too. I just do the best I can. |
Hi, All, especially Sharon and MizSpentYouth2!
Let me just put my disclaimer right here up front... I have a terrible case of brain fog today, so if I'm incoherent or offend anyone, I apologize right now. Okay?
Fibrobugsme/Sharon: Gosh, Sharon honey. I really grieve for all your pain and how terribly it has affected your life. I also have trouble with my weight (hypoT), though I am SLOWLY losing it (I only seriously got started last Oct, so I’ve got a looooong WAY to go yet!
) Do the docs really ask you if you’re depressed? Geez, I must just look it or something, ‘cause they just slap one of those tests down in front of me and say “Here, fill this out and let me know when you’re done”. Then, even though it’s a self-test and I am honest about my answers and I add it up myself, the test says I’m NOT depressed, but the docs always tell me I am and want to put me on an AD…
What gives with that?
Anyway, Sharon, I have to admit yours in only the second story of unrelenting "pure fibro" symptoms that I’ve heard. My memory is not the best, but, to answer your question, I’ve been officially diagnosed around 12 years, maybe a little longer. And had to do the “doctor dance” for 4 – 6 years before that. Mine does come in waves… did I mention that? Well, those waves used to last a lot less time than they do now. And the breaks between would last months to years. Now, it just ain’t so!! The breaks are a mere few hours
or maybe a day or even two… depending on if I’m really lucky and the weather’s nice (and stays that way) and I mimic an ostrich with my head in the sand and keep all problems at bay (ignore them) for a day and don’t overdo and I’ve managed to get the absolute necessities done, etc….
you get the picture… if all stressors are gone or “managed” for several days, THEN I’m likely to have a good day - two if I'm very, very lucky. And the weather really has to cooperate and there be no family crisis (sp?), etc. So, as I said, as I get older these “golden” times become fewer. I wish I had more of them too! I’d certainly like to send one to you right now, but I don’t have one in stock. When/if I do, I’ll certainly send it to ya, honey!
I do not sleep well either. It’s after 5 am while I'm writing this, even after taking an Ambien CR, a pain med, and a muscle relaxer, I’m still up. And I hurt still as well. (I drove about 420 miles today and that way over does it for this girl!) This whole symptomatic/disease process is exhausting and frustrating and it always makes me feel like an idiot. I know how maddening it is and I’m proud of you for keepin’ on keepin’ on. It takes work, determination, and dedication to try to keep living “a real life” with this disease and you do it, by golly!! Go, girl!
MizSpentyouth2: Hi, MizSpentYouth2 (love the name, but wouldn’t THINK of asking where it came from… well… yes I would, but I WOULDN’T be rude enough to ask… yet?
Hang in there, sweetie! I know my fibro - or maybe it’s the Hashimoto’s… I’m still in that part of the “guessing game” – has gotten worse over the years. I have more bad days than good and the bad days are worse than they were in past years. Like I told Sharon… I must just have a sign on my forehead that says “DEPRESSED” or something… I don’t even get asked, it is just assumed. So then I get to explain to yet another doc that I don’t want to try AD drugs right now, thanks anyway. They (the drugs) change me/my personality too much for it to be an easy decision to take them. So, in general, I try to stay away from ADs... and, uhhhh, exactly what ARE “steroid tapers” anyway? What are they for? I thought steroids made you gain weight, not lose it?
The wonderful "Oh, are you sick AGAIN!"
Man, can I relate to THAT one. Though I have seven wonderful siblings, I think they’ve now, mostly, given up on calling me - 'cept for my faithful li'l sis.
And I think they don't call for this very reason – I got to a point where I decided that I'm not going to try to hide the havoc fibro was wrecking on my life and let them in on the secret. I can’t tell you how many times I’ve heard this quote you said above either said, or paraphrased, over the last decade. It didn’t matter so much when I lived too far away from them to even try to go to family stuff, but now… well… that involves a WHOLE bunch of pain – heart-hurt pain – all by itself, doesn’t it? I hurt for you, my dear. I think the effect on family relationships is what rounds out the top 3 things I absolutely HATE about this condition.
However, unlike you and Sharon, I’m not yet playing the “lupus vs fibro game”… but, then again, I’m not going to a rheumy right now either. I figure first things first works for me, and I KNOW I’m having hypoT issues. My NP agreed to let me give Armour Thyroid a try, so we’ll see if that works better for me than what I was taking. As I mentioned, I go for a follow-up to see the results of the old blood work next week and to get it redone (after 2 weeks on A), then. I’m also supposed to get my adrenal function tested, so I feel like we’re FINALLY progressing on trying to get my life back. I too cannot work right now… but feel I should and I'm not on any kind of disability. I spend a great deal of time in my house because, frankly, what little energy I have must be spent taking care of my hubby and my responsibilities – cleaning, taking care of our 3 dogs, shopping, and etc… the lovely joys of being a housewife!! LOL I think I worked less hard when I was working an “outside” job! KWIM?
Well... that probably was way more than you wanted to hear. Sorry for babbling. Here’s wishing all a great, pain-free (or at least minimum pain) day!!