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!
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
Staying strong for myself
- This impact was hard on me when I am the type to live life to the fullest and hate being sick. After I was diagnosed I was able to get through all stages but I must say it still here and there bothers me when all I want to do is feel normal and cant. I have done so well and it seems the older I get the worse it has gotten it really does suck for me!
- —Guest Jackie Reyes
Ice sometimes, heat sometimes
- ice when u have overworked your back and heat to relax the muscles the rest of the time. A hot tub has got me thru the severest of times. I fear I will never get more than 2 hours of sleep the rest of my life tho. I have tried all sleep meds except xyrem, but they won't prescribe it and ambien cr just makes me want to eat. I take cymbalta so i don't cry nfront of my kids, as u can come to accept this life sentence we have been given but it is still so depressing. My family don't care. My sister in law said I was pathetic but she never said why. I always worked hard and was a perfectionist. U have to stop being a type A personality and learn to relax more. My brothers and sisters think I just don't work because I don't want to and somehow I use it to get attention. How wrong they r. I was diagnosed 16 years ago. The dr. said to delegate and I try but the kids don't want to help. One son said " I don't understand how vacumning could hurt you" as if I was lying about needing help with that.
- —Guest B
Fatigue
- Have been ill with CFIDS for many many years and have recently found that caffeine pills are helping with fatigue and taken with my pain pill acts as a booster to the pain medicine.
- —Guest Barbara Weinger
Drugs and Fibro
- I believe I have had fibro since childhood. I also suffer from organic depression...under control, but without modern meds my life was very, very difficult. Be VERY careful before you accept narcotic pain killers that they are not contrainidicated for the type of mental health issue from which you may suffer. My fibro went from annoying and sometimes nasty to fibro on steriods after surviving bacterial meningitis in 2001. 1st pain dr put me on Fentanyl patch which not only did not help my pain but is contraindicated for folks with my kind of depression...I began to have nearly constant suidical ideations whch abruptly ended when taken off the patch...check those side effects and drug interactions...nearly lost a kidney!!!!!!
- —Guest Sharon
Marge
- I have been diagnosed with fibro about 4 years ago. I was told that it is not heredity....but my grandmother, my mother and myself have been diagnosed ??? Through the help of my very informed brother, we figured out that flouride makes it a lot worse. As a matter of fact, through a lot of research, there is a lot of documtation that long term flouride use causes fibro and rhumatoid arthritis. This makes sense since the first city to agree in the 1950's was Grand rapids, MI. to put flouride in their drinking water. This does explain why my grandmother, mom and myself have fibro...we drank the same water. Years ago, there was no regulations on the amount put in the water....it was a science project...no one knew how dangerous it was. My brother suggested I distill my drinking water, monitor all flouride (canned foods, juice, soda etc. ) for 3 months and see if there was a difference...YES, there is a big difference. I now continue to distill my water and always will.
- —Guest Marge
Clothes? Yes, they're painful! Life hurt
- This article is so important to me as I have lived 25 years of my 45 in pain. Yes, clothes can be PAINFUL! We need to access the culprits of pain to understand relief. Diet factors VERY high & most won't change but eliminating wheat & dairy can be a whole new freedom for some. Yoga, well "YRG" specifically is an excellent tool created by DDP (Pro Wrestler~Painful job) & what materials one wears from head to toe can make or break a "good" day. Love, support & sharing our differences is what REALLY helps me too. I know that "Just because" is a good enough reason, if ever I can't express my pain & when we feel better is the time to analyze how or what it was that might have set it off. Thanks for this. My new "T-Shirt" idea for today is the title above & I prefer to be "Differently ABLE" to "Disabled" To Dis is so negative. To be Different is Unique~Much Love~Always!
- —Guest Diana Holliday
The Other Side of the Grief Process
- I have been sick for just over 9 years with this disease and for the first 7 of those, I was stuck in the grief process. Anger, bargaining, giving up, then trying again - it was exhausting! Finally, I reached acceptance about 18 months ago and as a result, my life changed dramatically. I stopped putting my life on hold, waiting for answers, new research and treatments and decided instead to just work with what I had, little though that was. Today, I find myself empowered, even happy with my life, despite my deteriorating condition. Mentally and emotionally, I feel stronger than I have for many, many years. It was terrifying, letting go of my need to find answers and a way out of this nightmare, but when I finally accepted it for what it was, I was able to move on. If nothing else, it freed up a whole bunch of time and energy that I had previously dedicated to finding answers and that energy has been re-diverted to activities that make life feel worth living again.
- —Guest Sue
living with fibromyalgia
- Hehehe... living..ouff that's a bit strong for a statement. forgive me but to be diagnosed wasn't so hard to accept. What was my hell was an abusive relationship with someone that took a wonderful pleasure trying to make me pass for a bipolar , unstable manic depressive. So just to keep being reducalise as much from the health system then the justice system. what more can be said. Youpi ky ye.. Canada
- —Guest Gine
Fibromyalgia and Grieving
- This is so true. When its happening, those around you need to know what you are going through. Its so difficult for them to understand why you are behaving in this new way when you LOOK fine. Knowledge is key, both to sufferer and their loved ones. Kubler Ross's stages of grieving apply just as they do to the loss of a loved one - after all, the sufferer has lost their own life as they knew it and now has to find a new one. Not easy to accept.
- —Guest avvie
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