I have both ME/CFS and Fibromyalgia, but for me the fatigue is far worse and harder to handle than the pain. I can deal with the pain and I actually find the pain easier for me to work through. If I can find something to do while I am in pain I can take my mind off of it for a while. The fatigue is totally different, however. When I am extremely fatigued from the ME/CFS (or lack of sleep as of late) I find that I don’t think I can last another minute feeling this bad.
So which is worse for you? Do you haveME/CFS, Fibromyalgia or do you have both?
What do you do to distract yourself from the pain or fatigue?
Mckay K says
I suffer with Chronic Fatigue Syndrome. I think I can work through just about anything, except CFS.
When it hits me, the only thing I can do is go to sleep. It literally makes me sick all over.
the fatigue is by far the worst
Definitely the fatigue — I’m so glad I read this post, because the past couple of weeks have been brutal for me. I slept until 2:30 the other day! (I can’t imagine the hell you’re going through not being able to sleep at all.)
The fatigue makes me feel lazy and worthless, like I’m letting my life slip by. I try to eat right and take vitamins and supplements and Provigil and nothing helps. (The Provigil does a little, but I can’t take anywhere near a normal dosage when I have a migraine coming on — which is pretty much always — because it makes me even more scattered and depressed.)
Good times. I try to remind myself that so many others have it a lot worse, but it really has been getting to me lately.
fatigue. I agree, that feeling that I can’t think straight, followed closely by I can’t get out of bed, lead quickly to my life is passing (has passed) me by. And the insomnia is SO frustrating on top of it all. I can ride other people’s energy and support through pain; I can cheer myself up with beauty or love; fatigue just flattens me and depresses everyone around me because I am SO sick I go into seizures (now housebound at 50). Plus, somehow the pain and insomnia make me feel as though I am losing my mind (in a way I am) and also find it difficult to stick with good food and supplements; with pain I find it easier to keep perspective and take care of myself. Who would have dreamed I used to be an athlete? Now in a wheelchair out of the house (seldom and for short periods of time), but determined to find my way to a new way of being as my kids leave the house and the energy I have I can use on myself for a change. I will not die unheard! Your comments, everyone, have made me feel much more sane. Thank you for posting. Tonight I am missing my friends’ wedding. On Tuesday I am missing a civil suit trial we are involved in (long story, can’t talk about it anyway). On Thursday I will not go to the hospital with my mother-in-law while she has a mastectomy.
I don’t know how long you all have been sick. If I can offer any wisdom from experience (and maybe you know this by now) take care of yourself utterly as early as possible in the illness; look into e-lyte electrolytes, liposomal oral glutathione (not regular glutathione) and phosphatidyl choline (try to find a doctor who knows the IV protocols a la Pat Kane, PhD and Neal Speight, MD); remember when depression hits it is biochemical in origin, it is not from resting (i.e. it is secondary) don’t try to kill it with activity. You’ll just get worse. I’m not a believer myself, but bless you anyway, whatever that means to you.
20 year CFS, FM, neurotoxin syndrome, etc., etc
Kat Mac says
Chronic Fatigue is far worse for me than the pain of Fms, however if
I am in a flare the pain overwhelms me. I have in 10 years of DX w/Fms
had 3 haunting fibro flares. I had been lifting boxes, relocating, I
cried out loud, finally I knew I could no longer work and filed for my disablity. A week later I went to my Dr. w/no money and told her she would be
paid as soon as my case was clear. Treatment was dry needle injected to the
trigger points in my back. After two weeks of this twice a week, it eased up.
The second time was an emotional situation that cased a horrible flare, I
lost from 135lbs. to 105 in two weeks. Treatment was to drink ensure, cases
of it for months and for a year still felt sick, my weight went up to 130lbs.
which was good for me. Third flare came from an emotional issue as well, and
I had a TIA…Scared and along I suffered in slience.
Blessings to All,
By far its fatigue! Coupled with fibro & CFS, I’ve endured 14 major surgeries including brain & spinal. I also have epilepsy, shingles & chronic bell’s palsy but the absolute worst of all the illnessess is fatigue. It can be incapacitating some days and render me totally useless. I have tried numerous drug therapies, nutrition plans, managing stress, meditating, taking life one moment at a time, but nothing can alievate the “empty tank” symptoms that comes with CFS. I would so much rather endure another brain surgery than deal with the random visits by CFS. It is much like living with the unpredictability of epilepsy. Both diseases can leave me feeling like I’m living with a “time bomb” in my body.
Wow! Fatigue! It causes my brain to have a fog when I am awake. I just had to look for my e-mail address just to send this and that’s not all I can name some stuff that FMS/CFS causes probably for all of us. Anxiety for one sometime I get so upset that I can forget where I am when going to a buffet to eat with my family I have to know exactly where our table is usually we try to get close to the food one time I had to stay at the food because I got lost and another thing is the grocery stores if it’s crowd I start getting scared someone will bump into me and cause pain so hubby does that. Can’t drive unless someone is with me get lost. I got lost at a motel and had to go to the desk and she told me she couldn’t give me the room number unless someone from the room said it was OK. I told her I am from the room please call my husband so he could get me this is one I cried so hard.
This is why I have to agree that it drive me crazy when someone tells you how great I look and I feel so bad it doesn’t do any good to say anything they just think your nuts it’s hard enough for your family to remember they have to be reminded. I took a permanet medical leave from 21 years at my job and I’ve had this disease since 1986 and I am 60 now but the people at my job tortured me no one not even some friends would believe me. I use a cane and dislike it so much.
Anyway the pain is bad but at least we have some medicines that help. Fatigue is far worse! I know there are a lot of us that have a really hard time with fatigue especially if you were so active before this disease hit us. And last thank God for spell check!