From the article: Chronic Fatigue Syndrome, Fibromyalgia & Grieving
Living with fibromyalgia or chronic fatigue syndrome is hard -- what helps you cope? Has something helped you come to terms with your diagnosis? Maintain your relationships? Get through the day a little easier? Share it here, so your experience can help someone else! Share your experience!
Miracle cures.
- You should not be counselling people to accept their situation. I had severe FM for decades, and have been 90 per cent better for the past three or four years because of laser and ultrasound. There is a miracle cure, and I wish my doctor told me about it because I wasted years of my life. You can treat yourself with units bought over the internet. I did.
- —Guest Jane
Friends
- I have two friends for over 30 years. Even they don't understand or want to hear that I am relapsed again. It's sad. I'm in my late 50's and its sad to realize what life is really about - the healthy and the active - so it's okay. I read alot and think alot and I dont' disappoint myself with expectations. Everyone at some point will be ill and alone. Not that anyone will comtemplate how they treated me or others, but at least in my heart of hearts, I know what kind of person I am and that is all that matters.
- —Guest sue
low-grade stretching
- OMG does a little exercise go a long way. I was getting knocked out by trying to clean house on a good day. Now when I vacuum I just do a small area which still knocks me out but at least I did something. My doctor told me not to overdue and I didn't realized that meant more than a few minutes of exercise and wow, a few minutes of stretching or lifts makes the stiffness and pain subside and I feel better mentally.
- —Guest sue
Take your vitamins - and the right dosag
- I improved for many years and now I am ill again. I am hoping this relapse will be shortened by vitamins had I only known over the years more about vitamins. I am vitamin d, e, b deficient - a & c (at risk). Anyone with fibromyalgia should check for MTHFR mutations - I am missing folate, too, and I had to be getting crippled and bring my vitamin issues to the attention of the medical profession - thank goodness for the Internet and research! Dosages are very important because you can stay vitamin deficient on too low a dosage of what you need - especially vitamin d!
- —Guest sue
Reality
- I have read your comments,those who feel like they are dying inside when our life seems empty when accomplishments are few and far between.if we were all wealthy and not have to earn a living, some would not say a thing,it is expected since our culture expects lack of work, just travel and leisure when wealthy, FMS would fit right in .Professionals in different fields usually make us feel worse,I would call it discrimination.Many times I have came home from Dr's or counselor s and threw my paperwork across the room and swore I would never return! Like They either will not say the word or avoid saying anything that sounds sympathetic or caring.They know what a nasty illness this is,it ruins lives after yrs of being told to (diet,exercise etc )we all do anyway!the funniest of all is (save your energy to spread it out to function better!,who can do that with a family and jobs? A myth, OUr bodies are aging twenty years faster than our ages,and no one knows what to do,we are honestly sick
- —Guest Wilma's 67
sick of being sick
- I've tried so many things:( nothing seems to help, I have to take pain meds, can't take any antidepressants, being bipolar and all and borderline PD. Can't even take an ibuprofen:'( I just have to take it day by day, I never know how I'm going to feel when I wake up! I meditate and breathe and walk when I can. I'm going on 7 years. Multiple surgeries, and it seems like a new symptom every month.. I don't know what else to do. Some days I want to give up, but then I think this shit is not going to take me to that point!!! RLS is bad also, hot baths works a little, I smoke pot for my migraines and severe neck pain. Have a support group, I'm 40 my 30's were the worst, just hoping my 40's are better. I have learned to surround myself with positive people, some any way, people look at me and say you look fine, ya maybe on the outside but I can tell you that I'm dying inside slowly it seems. Wow just looking for relief.. ((( soft hugs)))
- —loveusedrick
Healthy eating
- I'm pretty much knocked flat with CFS, FMS, and MSA, but I do have a few good days a month. When they come, I make a big batch of "gruel." I start with an organic 13-bean soup mix and follow package directions. About an hour before it's supposed to be done, I add 2 cups of grain (rice, barley, quinoa, etc.--I usually use 1 cup of two kinds). 30 minutes later I add chopped fresh veggies if someone has taken me to the market recently. If not, I wait until it's about 10 minutes from being done, and I add frozen mixed veggies. Either way, at 10 minutes from being done, I add a couple cans of beans or a package of edamame, a couple cups of finely chopped fresh spinach, and around 5 chopped tomatoes. Then I put it into 2C plastic containers and freeze them. I always keep one in the fridge. This way, I always have an easy, quick mocrowave or reheatable meal that is filled with the fresh veggies, protein, and grains I need.
- —Guest Button3
Find Health care providers who care!
- I am a 63 year old nurse practitioner who has had FMS for over 45 years. I have run the gamut of every specialist trying to figure out my pain. Now even with a diagnosis of FMS and depression I still find many doctors and nurses who think I am making this all up. As if I want to have a life of pain, not being able to do my favorite things like hiking, backpacking, sailing..everything! If your doctor doesn't treat you well...then find another one! Find a practice with a nurse practitioner! It at least shows that the doctors believe a woman is intelligent. You would be surprised how many male doctors think women are inferior and "hysterical." After all the word "hysterical" comes from "hyster" meaning womb...like a hysterectomy. And now there are more women in medical school than men...some with undergrad degrees of dance, art history, English Literature. They still have 5-9 years of medical school and residency but now there are more empathetic people out here!
- —Nuschlerwill
Sweats out of no where but Im cold to
- OMG I thought it was just me , but I have the same exact same thing going on..." I will take shower an try blow dry my hair an I sweat really drippy sweat like I just worked out. But also I get a chill an put a t-shirt over tank top an then it starts really bad sticky sweat on my upper torso an dripping sweat from my fore head, Im gonna try the deoderant thingy (so Thank You 4 that)" Im so happy 2 see that its not something only I have . I think I got the Fatigue one cuz im not lazy or that sort but Im ALWAYS tired...Thanx for the help ill post once I get an appointment an figure this out, GOOD LUCK TO ALL WHO HELPED AN NEEDS HELP.
- —Guest marshafaith606d
Dealing with stress
- I wish I could deal with stress apart from feeling I'll and fed up with myself I can no longer work... My husband has asthma and brochiectasis (similar to cystic fibrosis) and Son is an autistic teenager ,,,,, I am constantly being told not to stress but I can,t I have problems with my son everyday and I can't stop worrying about being left alone with my son if anything happens to my husband as I don't know how I would cope
- —Guest Fattroutt
Changing shoes midday
- I carry an extra pair of shoes with me because my feet hurt after a few hours. I change to a different pair of shoes and can stay on my feet a little longer.
- —Guest Susanja
working
- if your able to work,, then you dont have it to bad,, but bad is subjective, in my case, I was a electrician,, worked in weather not fit to be in, worked 100 feet in the air, now I dont dare get ona ladder,, my hands were tools,, now there clubs,, my feet and legs kept me moving 40 hours a week,, and then some,, not anymore,, I used to fish,, trout streams in the spring,, not anymore, I cant feel the pole, or take standing in the water, its to cold,, this was one of my first symptoms,, but if you work,, consder yourself lucky,, not that you have Fibro,, but becase you donthave to crawl on the floor when you get up,, or walk 10 feet andhave to sit down,, or when you put shoes on,, your feet and legs feel like they weigh a ton each,, or tie your own shoes without screwing it up,, no, its no fun when you have this on top of everything else,, you begone to wonder what part of teh day your going to die,, yes it gets that bad,, this all started on 07 for me,, oh,, you have this,you have tha
- —navydad721
Still trying to come to terms
- I was diagnosed about a year ago after 5 years of trying to figure out what was wrong with me. I am still going through the greiving process which that in itself takes quite a toll on you. I am having a very hard time working my full time job. It has a very high stress level, anymore I seem to get up go to work, come home and go straight to bed. I have to find a new doctor that is familiar with FMS and CFS my family doctor not so much. I have discovered when the pain gets really bad and I just think I am going to die (I have a constant migraine that never goes away) I put all of my energy into making dollhouse miniatures and sculpting clay babies....until I come to terms with the fact that I am a very strong woman that is stuck forever with a condition that wins more times than I do all I can do is hope....hope one day I will have a great day without having to pay for it with a bad day the next day...hope that something will fix it one day...hope that I don't give in and give up....Hop
- —Guest Melissa
working with fibro
- I appreciate your advice but I work in a factory that even though they know about the accomodations you speak of above, they still make life unbearable-physically and mentally. My rhuematologist won't agree to SSI either. I dread being at work and it encompasses my like. I am constantly thinking about how much that place makes me hurt. I have without success been able to find another place of employment. Any hopes for a job would be appreciated.
- —Guest scoobydoo
CPAP
- I am so happy to read about the increasing awareness of sleep apnea contributing to disease processes such as Fibromyalgia, but it is important to remember that for mild to moderate OSA, an oral appliance can be done for someone who has difficulty tolerating the CPAP machine. Likewise, in collaboration with a sleep MD, a Dental Sleep Physician can also fabricate an oral appliance for SEVERE sleep apnics to be used IN CONJUNCTION with a CPAP, in order to reduce the pressure settings. The pressure settings can sometimes be the culprit in someone not being able to tolerate the mask. FYI! for your continued health improvement and recovery!
- —NMDentist1
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