I just joined this after reading the post. First off, I apologize if I make no sense with my typing or writing,for I feel ,sickly, foggy and confused. I can't remember anything. I have a dx of Fibro and CFS, for about 13 years. I'm getting worse and worse. I can't shower or get the mail without a plan. I'm all alone living this secret. I have most of the symptoms as in the original post but I also have interstitial cystitis, so my bladder has bouts of ". I can't think anymore!!!! I'm crying alone in my apt and hate what I have become. I'm so chilled, then hot. I know I have a fever but don't have a thermometer. My pain management md treats my symptoms with meds and more meds, started by my MD I had prior to moving. I hate these pills. Strong pain meds, pills for energy, anxiety, sleep. He even wanted to give me a prescribed Rohypnol sleep med and I refused. I have refused many meds, I am on meds for a cancer pt and feel like I have Aids but I don't. I had many tests years ago when this first happened. Everything was negative, then they brought up the C word. Finally I had a titer for Epstein Barr and it was through the roof and that's how this dx started. My immune system is so weak. If I catch a cold , I can be stuck in bed for a month. I'M LOSING MY QUALITY OF LIFE and feeling hopeless!!!!I'm in my early 40's yet look much younger, for I never see the sun. I guess that's the only good thing I have, secondary to whatever this is???? I can't take care of myself!!!!! I can't do the laundry, I used to be into clothes, make-up and girly things and if offered 10 grand to go on a shopping spree but had to go now, I'd say no!!!!
People don't understand because when I go out in public I wear make-up and don't look as sick as I feel. Something is really wrong right now, I don't drink enough, or eat enough and take these stupid pills. I'm sure these meds add to these issues for they have side effects.
The one's that are physically addicting suck because I forget to take them and only reminded to by starting to have withdrawal symptoms.
I hate going to the pharmacy and MD 1x/month, I hate the stigmas. I am treated well by my pharmacy, I have gone there for 8 years. One pharmacy and one MD, so they know I don't doctor shop or do things people do that make it hard for people who really have pain, not to be judged.
Everyone has died like my husband and father, I have a mother who is a borderline and hates me, I gave her all my $ before and now like the giving tree, just a stump with nothing left to give her.
I have no siblings, didn't get to have kids for my husband died. I have 2 cats and treat them as my babies. It takes all I have to care for them!!! They come first because they are helpless. They sit outside the shower when I'm in it and one even jumps on the top to see if I'm ok. I make then depressed when I cry. I feel guilty. If it weren't for Pet-co online, I'd be worse off.
I have had this Lyme disease thing in my head lately because I was never tested before. I'm scared to know!!!
The pills w/o proper fluid, I'm sure are killing my organs. Yet my stool and urine are normal in color because I check, no pitting edema or signs of liver or kidney failure[so far].
I feel as if I'm 90. I hate myself for taking these meds but I have too and when feel better, I decrease. When stress is worse my upper spine feels like there is a fire in my back and I fantasize about cutting my spine out. I know it sounds disturbing but I need to be honest. It makes me feel good to imagine this red, inflamed fire being taken out of my back. The burning is so bad. It's only my upper back ? I lie on the floor and rub my back all over and on the wall too. I'm never comfortable!!! The tens unit helps, I pit it on full blast and wear it longer then the directions.
I feel like I want to call 911 because I'm sooo weak, I live on Ensure most of the time, I can't get to the market or can't hold real food down. I'm ashamed to ask for help. I have lost some friends because I never can keep plans. People take it personally and don't believe me , because they don't get how I can be sick so much!!!
I have learned I can't make any plans ever. I may feel good, which to me is what a normal person feels like with a average cold. Right now I am in outer space and feel retarded as I write.
What do I do, I AM SO SCARED and have 0 family!!! I need someone to wash my things. Thank-god, I have so many sleep clothes that I can wear. I can't perform my adl's and need assistance for my iadl's.
I've lost my desire to dress up and I loved too but have no energy. I used to use many skin products 2x/day and now have gone 2 days w/o washing my face. It's that bad , that I have no energy to even to that at times!!!
I feel so worthless and gross!!!!!
I'm scared I wrote this , I'm just scared!!!!!