How Did Your CFS or Fibromyalgia Start?
July 26, 2010 by Sandy Robinson
Filed under Fibromyalgia, ME/CFS
A lot of us with ME/CFS & Fibromyalgia can look back and figure out when our illnesses became serious problems. For some of us we came down will a bad case of the flu, pneumonia, or some other physical ailment and for others it was a car accident or other type of physical trauma. Many of us can also say that we knew as far back as children that there was always something wrong with us (even though no one else believed us and most people thought of us as hypochondriacs or attention-seekers) but there is typically one major event that triggered the CFS and/or Fibromyalgia into uncontrollable illnesses that destined us to a life of suffering.
I have wrote on Fighting Fatigue before that I was always a sickly child and I always needed more rest than my siblings. I also always seemed to have pain issues but they were always dismissed as “growing pains” but I knew they were more than that, even at a young age. I knew there was something not right with my body but when I would go to the doctor there was never any consistency in symptoms and the pieces of the puzzle never fit until I reached 21 and I had a major illness and refused to stay home from work. That one decision and that one mistake changed my whole life forever. That illness fed the CFS & Fibromyalgia that were lying dormant in my body and sent them into full swing and since that time my life has never been the same again.
I would like to hear from my readers how your illnesses began and if you can look back and figure out when you first became sick.
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As a child I had severe allergies. Was placed on a study at a large university hospital and received clinical study allergy shots 3 times per week for 5 years. I also had “stressors and traumas” as a child, not sure if it’s related or not. I was diagnosed with IC in 2004 (symptoms began in 2002) – no event set it off that I can remember.
But I remember the CFS well. I had what was thought to be the swine flu in October 2009 (was never tested though since EVERYONE had it the docs just where assuming at that point), and was not considered in a high enough risk group to receive anti-virals. Never truly recovered. Was diagnosed with CFS in March 2010 and more recently FM (I did not have enough “trigger points” in March but by July had developed more / given me that additional diagnosis). I was under normal stress when I got sick in October (nothing like some situations I have experienced in the past – including in my adult years) – so I believe it was not stress related.
Hi Dawn, Thanks for your story. Isn’t it amazing how so many of us can say “AHA! I know when it hit me?” I will add your site to my list of resources for CFS & IC Blogs on here. Thanks for commenting and please come back!
Here’s a bit of information that might be helpful for those who’ve been told they have fibroyalgia…
I see one of the top Lyme Disease specialists in New England. He treats all types of of pain causing conditions. He says that Fibromyalgia(though the symptoms are real) is a lazy diagnosis, and that there is always an underlying cause of the pain. He says the vast majority of people given the diagnosis really have undiagnosed or under treated Lyme Disease. This is where the flu like symptoms come from. Once you get a real diagnosis, there is hope for recovery.
I came down with a bad case of mononucleosis 10 years ago. Since then I have had recurrent month-long bouts with the same fatigue, concentration problems, etc. I am have been going to top doctors and their options fall into 4 categories:
1) CFS
2) Chronic Mononucleosis
3) Generic EBV Virus
4) Physiological (even though my EGV-IGM (Active) has been positive during every attack over last 10 years)
The only help I got was with a CFS expert who put me on a SSRI which worked for a few months and then stopped being effective. I am now trying Melatonin, to help with the sleep. It is very annoying that my primary care doctor saw that I was taking an SSRI and said “see I told you it is all in your head. It is just depression.”
I’ve always had bad allergies since childhood, I had stressors and trauma as well. In my teens, I got a sensitive stomach and have since lived on a bland diet. Through my teen and early adult years I had bouts of fatigue and nausea where I’d pretty much collapse for a month or three then get better. Docs could never find anything except that I was “a little dehydrated”. Always had med sensitivities, etc. I was functional and usually doing fine until I was in my late 30′s and I got an abdominal cat scan at the hospital for the same gastrointestinal problems I had had enough of by then, but they injected me with a dye intravenously as well as a dye into my colon for the scan and that was the turning point for me.
Just hours after the test, I was profoundly fatigued, nauseous, dizzy and barely functional. This lasted for months. I did have aches and pain then, but the fatigue was the absolute worst. I thought I was going to die. I got back to about 80% of “my normal” after a couple of years. Then, about three years ago I hurt my neck/shoulder somehow, and within a couple of months, the pain spread all over my body. From then, it’s the pain that is the major problem. Fatigue is a lesser problem now.
So for me, I have always had “issues” but the test at the hospital was a major turning point, then the should/neck injury finally tripped the switch. So, that’s my story!
I’ve had a sense of having something wrong with me from the time I was in my mid-twenties, often requiring much more sleep than most people. But I also had a crisis point where it went from passive to active – a perfect storm of extreme work stress, a trip overseas to visit family that was physically demanding, and a sinus infection caught on the trip. I went from about 80% of full health, where I had been for years, to 30% when the sinus infection was over. Then over the next 6-8 months, continued to deteriorate to about 10%, and now am about at 20% after being diagnosed for a year and having made lifestyle changes that helped.
I don’t think of that trip as ‘one mistake that changed my life’ though, or blame my sister’s kids for passing on their germs that made me sick. I just think of it as the final straw. If the trigger event hadn’t happened, then it would have just bought me a few more months of relative health before some other trigger occurred that was too much for my body.
As a kid, I got a lot of stomach aches and strep throat. I went to the doctors often and my mom was sick a lot throughout her entire life. Then, I had a chemical poisoning at KFC on August 23, 1999 and I have not been well since that day! I have not found the answer to what was in my food. I have not felt like myself ever since. My body has slowly gotten more and more fatigued and I hurt more and more each day. I moved to a warmer climate and I am hopeful that will help my symptoms. The winter was better here than in Michigan, but I am still in pain. I miss out on so much with my family and friends. I am looking for help to continue my healing process. I am not giving up, but I am less hopeful that I will be able to make a full recovery. I have severe migraines and body aches. I am open to any information to improve my health. Thank you for helping.
I am a very confused woman. I started having dizziness and vision problems in jan.2008. Then a few aches and pains. By June of that year I was in so much pain I couldnt walk, lift my arms, or even brush my hair. I was admitted to hospital and tested for everything. Lyme, ms, mono,meningitis ect..They found nothing. RA factor was neg. Finally i had to be carried out of work. I had to quit. Diagnosed with ra in aug.2009. I still feel like there is something else thats not being seen. Diagnosed with fibromyalgia in june 2010. Having a hip replacement in 12 days. Im lost. My meds are no longer working as well and easy things are painful. I dont know why I wrote all of this. Mabye someone has a suggestion. I am 39 years old and feel 70.
The trigger was Meningitis (which moved onto post viral syndrome, then re-diagnosed with CFS), as well as possible narcolepsy. A doctor is currently throwing around the possibility that I had a sleeping disorder before CFS and it has strengthened since becoming sick.
As a child, I have either been very healthy (admittedly, rather accident prone as well) or very sick. I could go for lengthy periods of time without a hiccup, only to suddenly be hit – and hit hard – by a virus.
My fibro started only recently. Last year I was diagnosed with Lyme disease after going to the hospital for swollen lymph nodes in my neck, unbearable ear and throat pain. 14 days of amoxicillin didnt work. 21 days of doxycycline afterward. I thought I was goign to be better. But then the fatigue set in. I have always been on the “hyper” side, so to have extreme fatigue really concerned me. After many tests, they feel the fibro was caused by the Lyme. Not sure what the next step is as I was just diagnosed this week…
I truly think there is an “AHA” moment in this disease and mine was at the age of 31, 11 months after my youngest son was born. I can look back before that and remember the slight aches and pains but it hit hard right after I gave birth. I never felt that I had regained my strength or energy after that and at first I blamed it on having a new baby, an older child etc. But, as the months went by, I realized that I needed to look into all the symptoms I was having. My primary doctor had no clue but he did send me to a specialist that diagnosed me as having fibro. At last, I had a name for the way I was feeling!! That was 30 years ago.
Wow! What a lot of responses to this post! I was so happy to log on to my site tonight and read everyone’s stories. We could probably all write a book on this stuff, couldn’t we?
On July 19, 2000, between 3:00 and 3:15 p.m., I felt life drain from me. Come to find out, a job-related stressor plummeted me into undiagnosed Mono for 9 weeks. I worked 55-60 hrs weeks with lots of stress so this really did me in. I became very ill for the next 5 months, saw a myriad of doctors who all told me virtually nothing. Eventually in 2001, was diagnosed with Fibro and CFS. Also, have chronic mono averaging an episode a month. Began working with the Fibro/Fatigue Center in Ft. Worth in Dec. 2009 and am very impressed with the results. I continue to hope for the best.
Thanks for posting this great question. Fibro and CFS have so many different triggers and symptoms — each with a different level of severity — that it is hard to find other people with exactly the same situation resulting from the same cause.
My daughter developed Fibro and Myofascial Pain Syndrome from a car accident where she was the passenger. Her soft tissue injuries in her neck and back never healed, and her health just seemed to spiral downward — migraines, sleep problems, cognitive difficulties, IBS and of course constant pain.
We are not sure if she was predisposed to FM and would have developed it eventually but the trauma for the car accident was the definite trigger. I’d love to connect with other people who are in the same situation.
My fibromyalgia was trigger by a trip-and-fall accident and made worse by the second-rate physical therapy I initially received from an occupational health clinic. My symptoms developed over a period of a week or so after the accident, and as time had gone on I have had more problems with sleep, headaches, fatigue and fibro-fog.
Great question!