Why is it that when you tell people you have fibromyalgia they look at you as if you have 2 heads? I get that response or the "oh, how sad for you" response, but I can tell that they think I'm making it up!! It's like I concoted some new disease. How frustrating!!! This is even more frustrating when it's your boss and co-workers that act like this!!!
I totally agree.. struble I can't imagine what that's like. He's supposed to be your ROCK.. I'm so sorry.
Most of my problem with this is some of my family. They don't believe it exists at all. I literally have some of them telling me "oh just go exercise, you need to get off your *** more, Dee". OMG does that tick me off!!!!!!!!!!!!!!!!!!!
If I could make them take this pain for just one HOUR, I'd sit back, watch them pop painkillers, and smile like crazy. Then I'd say HAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHA!!!! !
Yeh, I kinda feel bad about saying I wish for someone to have pain, but it's the only way they would ever come close to knowing what we go through.
Ain't it the truth!! I would love to give this pain to my boss (she is the type of person who never, ever gets sick or had pain) for just one day. Then maybe she would understand why I look so bad first thing in the morning. It takes all of my energy to get out of bed, shower, get dressed and drive to work in the morning.
Mornings are hard for me.. at least really hard to get out of bed. I'm back to not sleeping again unless I take Tylenol Pm or something like that. I hate doing that but I also don't want to go back on the Elavil either. If I don't sleep, the pain gets pretty bad and I'm really stiff in the mornings.
Early afternoon.. ummm right now actually.. is when it hits me the hardest. I always have to take a nap because the fatigue and pain in my legs get sooooo bad. Evenings aren't TOO horrible usually.
Dee74 -- Are you working right now or not? If not, are you on disability? I am thinking that it's about time for me to apply for social security disability, but it scares me to not work anymore. I'm only 40. I have to wonder what will happen if I quit work (or go out on long term disability) and then get denied social security disability. It would scare me to death to have no income. I support myself, no husband, so I absolutely have to have money coming in.
Sandy, I haven't been able to work in almost 5 years now. I was having to move around alot before I got sick.. my father was sick with cancer, so I was having to care for him.. lots of things. Basically I haven't had a steady job in probably 6 years. The chances of me getting disability are slim to NONE. I haven't even tried yet.. Especially since the docs STILL haven't given me a firm diagnoses. I'm still completely up in the air
This disease is horrible. First of all it debilitates you to the point where you can barely function. Next, when you do try to get treatment for it there isn't all that much that can help. Finally, when attempted to get income (disability) because of it you find out that some people feel it isn't really a "disease." By the way, I also have rheumatoid and osteoarthritis.
I'm bouncing around with the whole diagnosis thing.. first it was Fibro, then Lupus, then MS, then Fibro, now maybe Lyme disease - don't know if that's the exact order or not, but close enough.. still trying to rule out Lupus.. GAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA AAAAAAAAAAAAAAH!
Yeh I could scream today, really I could. I should. I should just go outside and scream.. no wait, can't do that, my neighbors are cop calling freakazoids who call the police if you step in their yard. Grrr. I could scream into a pillow though.. though that might make my chest hurt worse. Who knows. I'm just SO freakin irritated with the whole medical field right now. Really I am. I hate them all. Every one of them.
I also have cysts in my right ovary that I've been dealing with for umm about 3 years now. I'm 29 so they don't wanna take out my ovary yet - just wanna watch and see what the cysts are doing.. I'll tell ya what they're doing. THEY HURT. ALOT.
Idiots.. they ALL are. Did I mention that I hate them?
I need out of this bad mood. It doesn't help that I'm pmsing like a mad woman either lol
Dee - sorry you're having so much trouble. The medical profession is general is pretty horrible. My family doctor is a sweetheart though I must admit. He is absolutely wonderful. He never ever makes me feel as if he doesn't believe I'm not in pain or having a bad time of it. My rheumatologist, however, leaves a bit to be desired. I have to pull teeth to get a med changed. I would love to just have one day, just one, where I don't have any pain. Wouldn't that be lovely?!?!?!!
My reg doc is really NICE, but she doesn't seem to know much.. I mean, yeh she's sending me to specialists, but all of them are total buttheads. Really rude doctors. The rheumy she sent me to, OMG I hated that man. He did order more blood tests, and I have to see him again next week. The only reason I wanna go back to him is just to get the results.
Gahh... I think I'm taking my nap now.. thanks for talking to me, it really helps alot
did you have problems with Elavil? That is what I am taking and it seemed to take most of the symptoms away. Except for the flair up of chostochondritis (sp?) Anyway, the Elavil helps me to sleep like a rock. It IS hard to get up in the morning, but I have to as I have 2 children, one is 17 months old and the other is 9. Also I have to work about 32 hours a week at a furniture store where I walk at least 7 miles a day. I wish I could find a pair of shoes that didnt make my feet hurt so bad. I have been buying every brand of "old lady shoes" easy spirit, aerosole, born etc. and none of them are relieving the arch cramps and heel pain. If anyone has any suggestions, it would be appreciated.
I have not been diagnosed yet. I am going to Yet another rhematologist on July 7th. I will just keep my fingers crossed. I have already been to three. I saw my primary care doctor and she said that I need to be followed. She took some blood test which all came back fine, and referred me to a rheumatologist. I was so disappointed that I thought that maybe it is all in my head. It really does get to me every once in awhile.
Do you all have restless legs. I get this most every night. I cannot sit still. I have to get up and walk. The only thing that really helps is lying down. Today I am itching all over. I never know from one day to the next what is going to happen. My husband hasn't a clue what to do to help but he tries. Nobody has really said too much to me only because I have given up even talking about it to most people because they all look at me as if I am just wanting attention. What a frustrating ailment! Grrrr!
Struble.. I was on 100mg of Elavil for a year or so. I got to where I had ZERO sex drive. No interest whatsoever. And when I tried to anyway, I could NEVER have the big "O", no matter what. I'm a newlywed and I just couldn't have all that lol
Besides the non existant sex drive, it DID help me sleep at night and decrease the pain some. I'll give it that much. But I had some bad mood swings with it after a while. I don't know if it was just the fact that I was on it so long or the dosage or what.
But at first, I had NO problems. Just make sure you let your doc know if you start having side effects ok? Good luck!
OMG the itching is awful as I feel like I have bugs crawling all over me all the time. I asked rheumatologist about extreme hair loss and she just looked at me with expression that I felt she was thinking "Lady, what about me? I got my own problems with this". It was like me asking Telly Savalas as her hair is so thin that I felt like I had thick hair. I was dying to ask her what her problem was, but did not want to step over line. We went over about me having normal thyroid on blood tests. I tried to tell her that I had thyroid radioactive scan many years ago and was on Synthroid, but got no response. I guess she thinks Flexeril will cure all my problems. Maybe I need to grind it up and use as a body powder or go to pet department in grocery store and get some flea and tick powder. (TT)