Wishing for a Good Doctor
- I feel like I have the flu 24x7 365 days a year. It feels like a throbbing toothache "all over your entire body". And the overwhelming, complete and total Exhuastion is unbearable. I live in the Dallas, Texas area and have been unable to find a good doctor. the ones listed on the recommended site is an old list and none of them accept insurance. Most of the doctors they identify are "specialist", of FM or CFS and accept cash only and no insurance company covers. Ater $5,000 for 2011 alone and a bunch of vitaims and herbs and a sleeping aid...what a complete joke. I'd feel blessed to just have a doctor that understood the disease, was a "real" doctor accepting normal insurance and provided any relief! Anyone know of a doctor in the Dallas vicinity? At this point I'd try anything.
- —Guest Sherry
I just want a break, a day with no pain
- How do you explain something that has taken your daily life away and reduced you to barely being able to take care of your needs, let alone the outside world? That's made your family and friends stop caring about you because you "look fine on the outside"? How do you convey how deeply depressed you are and have to hide it because people need to see you being positive or else they think 'you just dont want to get better'. The Pain seems unending - every single day. Pain level 1-10? lets try 20. Who among us hasn't considered ending our own lives? No one seems to want to help, the drugs have too many side effect, doctors are not well versed in nutrition. Proper nutrition is my only weapon against this fibro foe, without that, I wouldn't be able to get out of bed at all, and a lot of days I can't even do that. It's a very lonely condition, you get to a point where you just don't have emotional strength to have to explain yourself or defend yourself on why you can't do something.
- —Guest Neeners
Fibromyalgia Fog & how do I deal with it
- I just recently found out I am suffering from Fibromyalgia Fog which puts you in a total different world of the unknown. You don't remember things. Normal everyday things seem like you never did them before, you live in total frustrating confusion from day to day and wonder when it will end. Where is the help?What can I do for this horrible disease that has taken over my life?I Need help desperately. Where is the answer?
- —Guest Joan
How do I explain fibro
- Usually I just say it's like the worst flu you ever had. People who see me walking normally, are surprised when I use my cane. I've asked people if they would get the machette out of my back. That gets a look! As much as you try, it's almost impossible to explain.
- —Guest Spookiesmom
The invisible miniature ninjas
- Everyone thinks they know what pain, fatigue, feeling muddled and forgetful is like. Everyone feels that way some time so what's the big deal? FM is surely just people who can't or won't cope, isn't it? I called this the invisible ninjas because they are my constant companions. The pains they inflict vary in type, intensity, duration. One thing is constant...they come back again and again and again. Any pain I experience is replayed over and over, so I get random stabbing pains where cannulae have been placed into my hands in hospital. The pains aren't causing any physical damage, however much it may feel as though they are ripping you apart, but I reckon if someone stabbed you in the hip, stamped on your back and drove spikes into your feet...and that's just getting out of bed...and that happened every morning, you'd get pretty narked before they could cause serious harm too!! As for fatigue, wow! I feel more refreshed after a night with a newborn than after a 'normal' night's sleep.
- —Guest Sarah Pipkin-Trinder
How Do You Explain it?
- I do not. Midland is still like it is a physcosomatic problem.
- —Guest Autumn Spencer
How I explain Fibromyalgia
- I have essentially given up trying to help people understand Fibro. I have lost both my siblings and my daughter because they just do not believe I am as ill as I am. I use a power chair, and when people ask what is wrong, I tell them that I have Fibromyalgia am just really weak (true) and the chair allows me some freedom to participate in normal activities. If I feel the person is really interested, I will tell them that at this point no one knows what exactly goes on in the body of a person with Fibromyalgia. But, research is ongoing, with some positive results in the past few years. I feel information about symptoms such as insomnia and pain just lead most people to think,"well I have pain at times and some times do not sleep well, but I do not intend to crawl into a wheelchair over it". I never discuss what medications I take, just saying that no one medicine works for every one, but there are several now that are showing signs of hope at least for some.
- —Guest Edana
M.E. FM sufferer
- This chronic desease is soul destroying to me and many many people! THE THOUGHT of never feeling well for the rest of my life scares me to death
- —Guest Christine Barker
Sore, Sore, Sore:
- Everday is hell on earth, even on a good day my body throbs, my body functions are all over the place: I ache almost every minute, every hour, every day, every week & year: I take medicines that make me feel ill, dry and disorientated: The pain is in every part of my body, its like having toothache throughout one entire body, from head to foot: I try so hard to be positive but the FM slowly eats away at me bringing me down again: Sleep is a nightmare, crazy dreams, lack of deep sleep etc: I cannot remeber the last time i had a good nights sleep: I live in Scotland and when its cold or wet outside i suffer big time, I could go on and on about how FM effects me: John
- —Guest John Trevorrow
Broken Physically and Emotionally
- I was diagnosed about a year ago after going to countless doctors for years. I'm 19 years old. I have been struggling with this for a long time and it has damaged my relationships with family, friends and my boyfriend of six years. The physical part I can stand, it's hard but I can. But the emotional part is what's killing me. It breaks my heart to be angry all the time and depressed all the time. I'm tired of having to turn down hanging out with my friends or going on dates because it was all I could do to roll over in bed that morning. It has robbed me of my childhood and I am terrified to think of how I will be when I'm 40 and 60. The worst part was realizing that not one of the people that I love and thought loved me takes this serious. I can't hold a job. I'm going to college and even that is killing me. I just want to be a teenager.
- —Guest Taylor
They Think Its All In My Head!
- It hurts to move and hurts to lay still. Family and friends think i create things because i am lazy or maybe crazy. Daily someone gets angry at me due to my inabilty to function either physically or mentally and can't remember to do important things.
- —Guest amalaksgirl
Frustration and confusion
- With all the pain, without visible and definitive reasoning, it is very confusing and creates so much frustration that I want to stay alone and hide. Don't want to have to try to explain to anyone, anymore. Wishing I could agree with others when they say I look so good, knowing that they don't see the pain inside. When my grandchildren want to sit on my knee, or even just give me a "squeezy" hug and I have to turn my face to hide the pain, or say I am too busy right now, tears my heart right out of me. The fibro fog also is frustrating. People think it's funny sometimes, but again......the emotional pain is hard to deal with. When family thinks I am over exaggerating because they have no idea, I just want to run and hide. Fibromyalgia, on top of confirmed diagnoses of R.A. and O.A. is slowly destroying me.
- —myaregina
making sense of fibromyalgia
- Its hard to explain, as I noted almost everyone has said. Apart from the pain there is the extremely annoying cognative thing going on. Can't think of a word I want to use, forget how to spell, forget people's names, watch a film that someone tells me I have seen before, yet I don't remember it. Waking constantly night after night with stupid, or scary dreams because the part of the brain that goes into rem sleep isnt working properly so dreams become more like halucinations. Forgetting how to do things you have been doing since childhood. I hate this condition, but what I hate more is I have to explain myself, excuse myself, prove myself over and over again. I live in the UK and its truly difficult to get support or even decent treatment for fibro/cfs. Especially if you can't pay for private treatment
- —Guest Yvonne
Fibro pain
- I feel as if ive been beat up everyday.Aching / burning sensations just trying to fold a few clothes my hands and arms are achin and burning worse just typing thisand Ive stopped every few words.At ss hearing say I could do office work they dont believe in it or try to understand it.They say it doesn't get worse but mine has.Feel my mind and body have been zapped no energy.Sometimes I feel so stiff nothing wants to bend more like an arthritis they think I have that also.I just feel like Im coming down with something all of the time. Like the flu.Wish my family would remember Im not lazy things changed when my youngest was 12 and he thinks im lazy he doesn't remember me weed eating or mowing the yard thinks i can just go do it!Id be in bed a month! Hes 21 now and him and his dad think im just lazy and I cant stop crying about it! Its like someone took my pride away.
- —Guest Lisa
hampster on a wheel
- My fibro pain is usually above a 9 on the good ol pain chart. I have a good doc but even the meds don't help sometimes. I still struggle to work FT and am a single mom. I feel like all I do each day is try to control my pain. It has strained all of my relationships w/family & friends because I look normal. There are days I wish for a car accident just to stay in the hospital for a few days to get a break. This illness takes everything from u and out of you. Its a nightmare!
- —Guest shawn
