Getting a chronic fatigue syndrome diagnosis is often the first step toward getting better treatment. All of us have different stories of what lead to our diagnosis, and these stories can help us see the similarities between us, and also help people who are seeking a diagnosis. Share yours here! Share your experience!
Opiate use with Fibromyalgia
- It very much works for me-I use a fentanyl patch and hydrocodone for breakthrough pain. I have used this together for many years and had wonderful results
- —Guest Lynne
How many more "take-aways"
- I was recently diagnose with a an inflamed sciatic nerve via an XRay. The xray revealed what looks like arthritis in my lower spine which will be further confirmed by an MRI. Even though the pain from the sciatic nerve has lessened I now notice that a short walk of say less than a mile causes it to flare up and further aggravate my CFS/GWI symptoms.
As time marches on I wonder how many more things are going to be taken away from me?
Time my change me but I can't change time.
- —Guest Matt
20 plus years and still hopeful
- I had mild symptoms that got progressively worse after every virus I caught. Then Jan 1991 I came out of surgery extremely ill and in excruciating pain. Could not lift my legs to get into the car to go home. Too ill to want to eat but had sudden enormous weight gain. Weight had never been an issue before. Saw about 13 docs before I got a vague diagnosis of fibromyalgia. They would not even talk about my other 50 symptoms. Everyone just said "inflammation". A few things have helped slightly: Doxycycline, Ancef, IV vitamins, Niacin flush, Phenytoin, Vit D, Vit B, Cipro. I want so badly to try anti virals-I test positive for everything. XMRV was unknown. I should not have exposure to XMRV but since my symptoms are 100% of those listed for ME I suspect that I would test positive for that too. As I grow older it becomes harder to cope with being this sick 24/7. The only docs who have been at all helpful have been alternative but since I can no longer work can no longer afford.
- Almost exactly a year after a difficult divorce, post traumatic, I began to feel tired and unrested. After hours and hours of chasing links and more links, something my dr. would not do even with all the red flags flying, I discovered that a simple blood test for "Epstein-Barr" or one for MONO, will show an evevated white count.
This will make you feel better just knowing tthat your illness in not "in your head"...
My 39 Years of Being Denied!
- In the summer of 1970, I was 29 years of age and doing carpentry for a living. The loss of strength was immediate, and it has never returned. I worked for 26 years, with CFS, dragging my body from step to step for a day's work. Various doctors had various opinions. The first appointment, I was told I had allergies; the next one told me I had chronic rhinitis, and prescribed 'Keflex' for 10 days. It was not recognized until I visited a rheumatologist, during the mid nineties. But, there was no remedy. In the last 10 years, I have been given prescriptions for 'Vicodin'. Some times it gives me less muscle pain. I've got more benifit from ibuprofen or excedrin, than any thing else. An attorney litigated for 4 years, trying to get me on disability. But, since I don't look sick, and I walk straight, the administrative law judge in Phoenix said I needed to go back to work. She lied 5 times in her report to the administration. This disease may as well be leprosy. Now, I'm old and sick! mc
- —Guest gitarman@NC.RR.COM
CFS caused by toxic mold exposure
- I firmly believe that my (self diagnosed) CFS, along with other very difficult immune system illnesses have been caused by proven, long-term toxic mold exposure. It was a hidden toxin in my rental apartment for 24 years until it started to smell and then I was able to figure out what had been causing me to get sicker and sicker. It's destroyed my life for so many years, I can hardly remember ever feeling completely healthy. I'm constantly trying to heal my health problems, but I can't work full time at this point, and trying to pay my bills is beyond difficult. Trying to get a diagnosis so that I can pursue some form of disability seems to be an impossibility. I'm quickly running out of steam and can hardly even think clearly much less get the energy up for all of it. Without the help of the medical world, I don't know how much longer I can continue to function.
- In 1974 I took a 6-hr., freezing-cold airplane ride and ended up with the flu. It never went away. After visiting many doctors who all said there was nothing wrong with me, I gave up. When I quite nearly couldn't work anymore, I went to a psychiatrist, who diagnosed me with anxiety disorder and started me on Nardil, an antidepressant. This worked very well - but eventually it triggered a latent bipolar disorder, so I can't recommend it. It wasn't until 1993, 19 years after I first contracted chronic fatigue syndrome, that I was diagnosed. Eventually, I was put on Klonopin, which also worked very well but turned me into an alcoholic, so I can't recommend that drug, either. I finally quit drinking in 1997 and was later put back on Klonopin, but it no longer works as well. I was 28 when I first got sick and am now 63. In the last seven years, I've become sicker and sicker with very strange illnesses that no one in my family ever had. I believe I'm slowly dying from this disease.
- —Guest edwards29
My diagnosis of CFS
- Firstly, it was so long ago! Nearly 14 years ago. I actually became sick with the flu in August 1994 (15 years ago) and when the tiredness didn't seem to be going away, my doctor said I had post-viral fatigue and gave me a certificate for 2 weeks off work. That didn't really help much! It was actually the next year when I was in Canberra, Australia, that I went to a clinic that was known for having a doctor who knew a lot about CFS. They ran some tests and diagnosed me with CFS. I remember being in tears before my appointment to get the test results from the doctor because my mother had already had ME/CFS for 10 years and I really didn't want it!!! And here I am 14-15 years later, still with CFS, but hoping not to have it for too much longer!
- —Guest Debbie