I AM A MOTHER OF 3 AND HAVE 2 GRANDSONS. THE BOYS ARE MOVED OUT AND MY DAUTHER TIA IS 12. THIS WHOLE THING CONTROLS OUR LIVES. GOD IS THE ONLY THING HOLDING ME IN THERE RIGHT NOW. I DONT HAVE NO ONE TO TALK TO ABOUT THIS AND I FEEL LIKE I AM NOT A WHOLE WOMAN NO MORE. I WAS GOING TO GET MARREID THIS SPRING AND SINCE I HAD THE OSTOMY SURGERY IN MAY AND HAVE TO LIVE WITH THISBAD NOW HE LEFT US THE DAY BEFORE THANKSGIVING. WHAT A THANKS!
I have for years been said to have very low Testos and have been giving myself injections and it seamed to help but in the last lear I have low head achs sor glands in throth and jaw I can sleep 16 -20 ur a day and still be tired!
My doctor does’nt belive in CFS and It’s getting worse! he said I have 2 problems! 1. low testarone and 2. Adult onset of manonucleosi “the Kissing Des” sorry about spelling. Is this a real problem or as my doctor says It in my mind!
I am a single self employed person and could be making a lot of money if I could work and for 25 years have and I see the low testo by the blood count and he said that the Mano has come up pos and will never change ounce you have it, you will always come up positive!
What do I do - Find another doctor? Is this in my head some one else said to look as CFS and it sound right !!! I so tired.
Pokole
This year marks the 20th year that I have suffered from Chronic Fatigue and Fibromyalgia Syndrome.
For me, the fatigue is the worst battle. At times, the pain will exceed the fatigue, but for the most part, it’s the fatigue. The hardest part for me is that in the past 20 years, I have found 4 prescriptions that have helped my symptoms.
The 1st was Sinequan, but I stopped it because I gained 15 or 20 pounds. Then I went back into the fatigue, so I tried it again. Guess what? It didn’t help.
The next Rx was Effexor. It didn’t give the immediate and the dramatic result that Sinequan did, but I did notice some improvement. Then, I developed flu symptoms, so I had to stop that one. The next Rx was Remiron, and for possibly the first time in my life, I noticed one night that I felt happy, peaceful and good. I couldn’t believe that is how most people fee all of the time. It lasted about 5 days, and then it went away.
The last Rx was Neurontin, and I felt pain-free and so healthy for the first time in 15 years. That too would continue, because it lasted about 4 days, and then I went right back to where I was before I started taking that Rx.
I have suffered from Insomnia all of my life, and I believe Depression all of my life, so that might explain why I have FMS or CFS. People just can’t understand what you are going through. Hating the fact that you ache & hurt all of the time, and that you’re always tired.
I work a full-time job, and I’m fortunate that I have a great Manager, who works with me. Those are few and far between. I have a very, very supportive husband, whom I married about 8 months before the Chronic Fatigue started. So, we’ve been married 20 years. He’s the greatest. I just get so tired or feeling so tired!
I had a car accident in September of 2006. My stomach swoll up to about the size of a 6-8 month pregnant woman. I contacted a GI and was immediately given a test which resulted in the findings of 3 ulcers and 2 were bleeding. I then took a series of blood tests and tested positive for Epstein’s Bar virus. Since January I have had 5 episodes of Chronic Fatigue Syndrome or a form of Epstein’s Bar. I have moments in time for about a week, maybe two and then I spend at least 3-5 days sleeping almost straight through.
I can not hold down a regular job so I am pursuing my jewelry making and trying to create a business of it.
I take the probiotics, eat vegetables, sleep, take anti depressants and I am still battling this day to day weight I carry around.
If anyone can offer me any advice, or ray of hope I would be grateful. I am a 30 year white female.
Thank You
I am 46 years of age and was diagnosed with CFIDS/FM in 1997. I was completely disabled for approximately 3 years. I have since recovered and am functional again, but still have “those days”. I am interested in reconnecting with others who have this condition. I have not been in a support group since I was home-bound and miss it!
I have several conditions that I am battling with at this time. I have CRPS in my feet , fibromyalgia, chronic fatigue syndrome, and depression.
I am 59, married, and have faught CFS and Fibromyalgia for several years. I’m soooooooo tired of being sooooo tired. I always am in pain, but if I can just funchion okay I’m happy. But I do have days, like the past several days, that I hurt so badly and am so tired that my daily life severly suffers. We care for my Mom and we have pets that require my help. I feel I fail them all in so many ways; housework, laundry, cooking, being able to drive to do the errons and keep appointments and on and on. Any one out there relate? Any suggestions? Barbie
I have clinical depression and would like to communicate with others who understand the social, intellectual, and descrimination that are associated with this illness. I am hoping that a chat room experience will craate up a social forum for me.
I WENT TO THE DOCTOR AND I HAVE COLITIS,I WOULD LIKE TO SPEAK WITH OTHER HOW THEY HANDLE THE CONDITION/
I have suffered from Chronic Fatigue Syndrome, Fibromyalgia and Interstitial Cystitis for almost 20 years. In February of 2006, I started my own blog, http://fightingfatigue.typepad.com, to offer information and support to others.
I also have a new forum for CFS/FM - www.fightingfatigue.org/forum
I would like to connect with anyone who has a child or adolescent with CFS. My daughter is 16 years old and has had CFS for 5 months, out of school and mostly in bed. Thank you.
I have RA. The RA is responsible for cfs,ibs, and depression.
Hi - I’ve had cfids and fibro for about 12 years now. I am basically homebound and just able to take care of my barest needs for myself and my two bichons. One of the hard parts for me has been the isolation…having been used to a very social and exciting life pre-cfids(as most of us have).
I live in South Florida and would love to chat here or by phone with anyone who is interested in having a friend to laugh with…or just to share experiences with.
Great deal of interest in medical conditions that affect family and friends and try to locate updated information.
I am 46 on disability and have two teens, 3 cats 1 dog (pug) and a home. It is depressing to not have the energy I once had I struggle through the days and try hard to keep my chin up My two teens keep me happy and moving but it takes twice as long to do anything that I did before.
I have joint pain that puts me on the sofa at the end of the day. My hips back and joints hurt. When I sit for a while I have to get up slowly to loosen up. I’m 62 have had cancer and treatments and am doing fine otherwise. I take Arimidex and Fosamax, these cause joint pain. I also have osteoarthritis and osteopenia.
I am 47 female living with hepc, fibromaylia, bi-polar, menopause, which all cause fatique
I’ve been living with CFIDS and fibro for close to 20 years now. About 5 years ago I moved to a small town with my husband (for work) where I didn’t know anyone. Having gone through 4 back surgergies, the pain added to the fatigue has kept me at home a lot so I haven’t developed a support group. I’m an empty nester although my daughter and her 19-month-old daughter are staying with us for a while until her husband relocates to his new station in the Air Force. I use my energy now to play with my granddaughter since when they move it will be difficult to see her much.
Before coming down with these physical limitations, I was an avid runner. My claim-to-fame was running a 15k run when I was 7 months pregnant. Unfortunately, I fit the profile for a yuppie burning the candle at both ends and that’s what I was labeled by many around me. When I was first diagnosed, the name was CEBV - chronic ebstein barr virus; anyone remember that name? I had never heard of fibromyalgia which I was diagnosed with at the same time.
I was very fortunate that I didn’t take years for a diagnosis. My regular doctor at the time told me it was depression but I rightly said that I knew the difference between depression and fatigue. I wanted to do lots of things but would fall asleep immediately after exercising, which was new to me. I found a different doctor and took him what literature I had on the disease and he did what he could, sent me to an infectious disease specialist to confirm the diagnosis and that was that. Unfortunately, no treatment came with the diagnosis and I was vulnerable to many of the claim for cures by buying this or that product. Eventually I quit trying everything and tried to learn to accept the diagnosis, which after all of the this time I’m still working at.
Sorry for the long post. Wish after so long I was a guru of wisdom but if I had been cured I probably wouldn’t be here. Life does go on and good things do happen in spite of the illness.
One of my biggest obstacles early on was learning to pace myself. I continue to struggle with that but I think that slowing down early on instead of challenging myself to work through it or will myself well would have given my better results. We each have to learn our own way.
Good luck to everyone out there who struggles with this “invisible” disease. It really does exist. It’s not all in your head. The body is carrier of this disease. Over the years that I’ve struggles with it I’ve seen progress in the overall acceptance of CFIDS and fibro, yet many of you may be trying to find just one person who believes you. I believe you and I believe in you. Keep fighting and living.
Developed Gulf War Syndrome through sexual transmission with my husband, a gulf war vet. Now have full blown fibromyalgia, chronic fatigue and all that goes with GWS.
I am a 55 year young woman who has been hospitalized in the past for depression. this has also been my disability, I do not work. I also have diabetes and hepatitis-c virus. I love animals, cooking, writing, reading and music.
I am an advocate for human rights as well as animal rights. I came her for support and to make new friends. i am also in a 12 step group. I am married but in the middle of a seperation and divorce which is very difficult.
I am living in Florida but i come from Long Island, New York and plan to move back, “home”. Now for the positive : I play piano by ear and was inspired by my Grandmother who sang opera professionally at the Metropolitan Opera in NY. I also had an all girl group in the 60’s called “The 3 of Hearts”. We sang acapella and harmony. I write poetry and wanted to be an actress and singer or social worker or psychologist and writer.
I come from a big Italian family and am the eldest of 6 siblings 2 sisters and 3 brothers, one of whom I lost suddenly 3 years ago. I love the mountains and long to have a cottage somewhere in the Rocky Mts. where I can go and write or live. I dress funky and love hats and I dress with comfort and style. I am a full figured gal wouldn’t want it any other way. I love to laugh and love spiced Chai tea and oatmeal.