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.
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!
I have many health problems and I think they are all related. Epstein Bar virus I believe brought on the CFS 1986 while at college. A bad neck injury brought on the FMS. And being pregnant with my last child taking potassium brought on the major IC symptoms.Though I do believe i have always had a painful bladder. The IBS and PMS I have had since the birth of my first child 22 years ago. Endo, fibroids, and ovarian cysts to add to the list. Does this correlate with anyone else?
Thanks,
C in ND
Some idiot over-vaccinated me with Hep B vaccine—I now have Fibromyalgia, possibly CFS. Cognitive impairment —>Exhaustion—>Widespread muscle pain.these are my three major symptoms. Formerly very active, now almost house-bound.
I had my second bout of the flu (I think it was Swine, but haven’t been tested)…that seems to have triggered my Fibro…have tried to find others who experienced this, but have not come up with any online mentions.
Mine started either during or after a monumental fight against Cervical Necritizing Fasciitis. This was 2 weeks after I buried my Mother. I am disabled with a moderate case of ME & Fibromyalgia producing regular debilitating difficulties before or during a crash. I am lucky in one way because everthing was so well documented – the medical community could not get away without diagnosing me. After 19 days including 6 in theater operations, twice daily debridements, with an unparrelled torturous pain, then 2 years of a complete lifestyle change, I finally crawled out of the dark abyss I was in and decided that if I’m such a good fighter then let me speak out very loud for those who can’t, that this disease is no joke.
My Dr. said that it was going off my hormone therapy after a hysterectomy.
I know the exact on set of my Fybro was shortly after I delivered my first child. I had always had an extreme amount of allergies as a child, to all types of anibiotics, to foods, to pollen mold,I dreaded telling anyone and still do because I feel like a drama queen. My allergies are so severe that I have been to the ER several times with horrible shock reactions.
I felt terrible after I delievered my first child, my joints hurt like they were full of fluid and going to burst, and somedays like a rusty metal joint unable to move. I would get strange burn like rashes on small areas of my body here and there with out burning myself. Not as bad as a burn from cooking or a curling iron but a bit worse than a sunburn. I would sleep and feel like I got no sleep. I began to feel better and was pregnant with my second child and was felt quite healthy. I assumed the episode I had was from normal child birth stress on my body. After I delivered my second child my symptoms came back. Again I tried to keep going and thought I just wasn’t being tough. I had a terribly abusive ex-husband, and when I left him it started a 7 year divorce custody battle. This is the thing that made my illness chronic. He constantly fights with me, threatens me with court, calls law enforcement, stalks me, and this is more stress than anyone should have to deal with. Because of this I now have a chronic Illness.
hi all,
I got my first bout of real fibromyalgia 4 years ago, it took me over a year to finally find out what was wrong with me. I feel stress and childhood issues contributed to me getting fibromyalgia. There may be other other issues but to be honest i cant go back and change my past so i dont think about how i got it, just how to help my body to lost it which i believe i can.
good health to all
After a neck injury. then had neck surgery and really went downhill fast.
hello, i’ve been suffering from body pain for 4 years now and I am 16 now. I used to think i’m crazy, no one ever understood my pain or feelings. it’s so annoying. anyway a few days ago my uncle who is a doctor told me that I may have fibromyalgia.. and so i searched about it and it’s exactly it! My pain is in the exact spots, neck, back, shoulders, hips, lower back.. etc. I’m even suffering from jaw, face, head pain. I feel so lazy and always have to push myself to do things. never do things out of desire. I even wake up about 3 or 4 times a night.
I have no idea what it’s from and no one does either.. Is there anything I could do to feel better??? – Email me Please if you are an expert or a doctor or something who knows about fibromyalgia. Thank you and I’d appreciate itt
I first remember being in unexplained pain when I was 12 years old. I was severely punished and labeled lazy by my mother. Through my teens and twenties I just felt rotten, tired, hurting, all the time, but kept my mouth shut for fear of being called lazy. In my late twenties I was 150 lbs overweight and absolutely compulsive about cleanliness; me, my children, my house. Heaven forbid that I was fat and lazy. When I was 35 the world just stopped, about 8 mos. before I had had a 14 hour exploratory surgery. The doctors called it total physical exhaustion and it lasted for nearly 5 years. Then I slowly recovered, went to work, raised my children, tended my husband, lost 150 lbs bringing me to a normal 115. and all was well. Except I fainted 3 or 4 times a month. I always tried to hide and no one including my husband was entirely sure I actually did have these fainting spells. Doctors invariably said “stress”. Jump forward 20 some years, I was a district sales manager for a nation wide company, covered 3 states with 25+ stores. I was the only woman in management, and determined to prove a female could handle a job with long hours, huge responsibility and lots of true stress. On March 2,2001, while in the regional office, I started to faint and headed to the ladies room. I did not make it falling and hitting the middle of my forehead on an outside corner wall. I woke in the hospital telling them that I did this all the time and it was just stress. My Internist was off duty and the man who saw me was a Cardiologist. He was just as adamant that this was not stress. He had me transferred to one of the leading hospitals in Boston and ran a battery of tests on my heart. He found two conditions, neither terribly serious at that time but medicated me to stop the fainting. I tried to go back to work, but was just too exhausted and in too much pain to be driving all over New England, especially in the winter. I resigned.
I spent the rest of the year finding a new Internist and being referred to numerous specialists. When I saw a Rheumatologist, he talked to me for probably 3 hours, then had me stand with my back to him while he put pressure on various areas of my neck, shoulders, back and hips. When he finished he said, “Wow you are the first 18 of 18 I have ever seen. I had no idea what he was talking about, but from sitting in one position for so long I had both hands on my shoulders, squeezing them to relieve the pain. He diagnosed Fibromyalgia and began to treat me. With medication and tender point injections the pain was somewhat relieved, but the fatigue, depression, and cognitive issues did not improve. He send me to the Rhode Island Hospital of Rehabilitation as an outpatient for physical therapy. After two and one half years, I was discharged as “failure to thrive”.
By this time I was using a walker all the time that I was out of bed and weighed 94 pounds. I applied for and eventually won disability on the basis of Fibromyalgia and CFS. I also carry 15 more DX’s. Now I am in a power chair, totally dependent upon my husband, as the lift is on our vehicle. Get out of the house once or twice a month except for doctor’s appointments and am on narcotics for pain relief.
I firmly believe both episodes were Fibromyalgia, and I went into an extended remission period after the first bout. I am angry that medicine does not take us seriously, and more so that so many of us loose our families and friends over this. Two years ago, my husband took early retirement and we moved several states away from Massachusetts. I am finally 65 and just this week signed up for the senior citizens group in this small town we now call home. I am not sure how I will answer the inevitable question, “why the power chair”, but you can believe it will be a long time before I will venture to tell anyone I have Fibromyalgia, Chronic Fatigue Syndrome, and Myofacial Pain Syndrome.
Thank You for listening to this too long rant,
Shari
Wynette,
Sorry you have “joined the club”. But perhaps RA is the only disease you have. I have heard many Rheumatologist comment that the only illness more painful than RA is Fibromyalgis.
I feel I had very good doctors in Boston, there were a team of seven physicians and me who would at least once a year sit down and talk about where I was as far as present state and prognoses. One thing they all emphasized to me, and I have come across the same information in researching Fibromyalgia, is to never, ever let any one cut on you without giving you a course of antibiotics first. Also, because our muscles are so tight and painful, you should insist they give you something to relax you hours before your surgery, not just as you are about to enter the operating room. I know this sounds pushy, but I have had only one doctor balk at my instructions and when I said fine, I would find another surgeon he grumpily gave in. Frankly, I do not think you will get much flack as doctors are so afraid of being sued these days they will do almost anything that is not outright dangerous.
A good friend in effect committed suicide by having a tooth extracted without telling the dentist she had Fibromyalgia. I believe she knew exactly what she was doing. It took me two months to get her to admit that she had not had an antibiotic during the procedure, thence the infection in her heart. She and I were closer to sisters and always agreed that if it got to be too much for either of us, the other would not judge. I try not to, but she left a huge hole in my life and in my heart.
Best of Luck to you, and remember this is your body, you are in charge!
Shari
In 2007 I suffered a sever hyperextension injury of my neck at the hands of a a very careless and irresponsible Brazilian Jiu Jitsu Instructor. I could hear the ligaments pop. I had a sore neck for a week or so and didn’t think anymore of it. Over the next few months I began to develop a fatigue that rapidly became debilatating, eventually forcing me to stop my avid martial arts hobby. At the worst I could only work 4 hours a day and then go home and collapse and sleep for 14 to 18 hours. doctor after doctor; I was branded schizo, alcoholic, depressed (no joke), a drug seeker; all my lab tests wer normal, x rays normal, all tests normal. Then in late 2009 I began to develop neck pain that intensified to the point of requiring narcotics to control. An MRI which I though would be useless showed severely degenerated discs and vertebra in my cervical spine consistent with hyperflexion/whiplash. There were spondolyths (inflammatory bone growths) around the nerve roots where they exited the vertbrae and the discs had flattened to the point of touching the spinal cord (remember: when you have an MRI, you’re lying down; your head weighs about 10 lbs; when you stand up, the head compresses the discs, so in all likelihood my discs were contacting my spinal cord.) In June I had Anterio fusion of my 5th, 6th, and 7th cervical vertebrae and am still recovering from it.
I had seen a doctor about CFS, but she was an absolute quack. She related she suffered CFS as well, going into great detail about how it developed after and automobile accident. She spouted a lot of other bull before kicking me out of her practice because I called B.S. on her.
Interesting.
Since the cervical repair, there has been little to no change in my pain level, but some improvement in my energy level. I have alway had doubt in CFS being an organic disease with no no change in any clincal tests. But everything that controls the body passes through the neck. Injure the neck, the body suffers.
For me at least, I don’t think the unexplained fatigue was “CFS”. I believe it was a neck injury. Horses, not Zebras.
No doubt my Fibro/ CFS. blew up after my 2nd thyroid surgery. I had been diagnosed with RSD in 1996 and in 2005 I never returned to normal after surgery. I was under incredible stress.Owned a business had 2 small children,marriage issues you name it. Pretty much in bed most of time. I was so active before ,very successful business. Pretty much lost it all. But still searching for the pot of golden answers and miracle to turn it around. Tried tons of meds and doctors. Still praying.
i am so sorry for myself and all who suffer from fybro and cf, i have had it for around 10 years, tryed everything , nothing works. i just have some good days and bad flare ups.stress from a bad marrage was my trigger point.to me it is almost like loseing you life as you have always known it[ well really you do ] i have been told by someone else that she found a dr that did a vitamine blood work up on her and found she is bad defencantcy in the vitamine d. so now i am going to get my dr to do a work up on me will let you know how it comes out as soon as i know.oh yea she is so much better untill it is unreal wishing you all the best
oh yea my pain is every where head aces,back, leg, hips, arms joints,neck you name it . does not seem possiable that a person can live that way if every day was as bad as some i don’t know what i would do if anyone can give advice please do so thanks
Will try to make this short. Had severe menstrual pain for 6-7 yrs. Had hysterrctomy 2006 went into retention over nxt 2 yrs hundreds of tests but never felt right. 2008 diagnosed fowlers syndrom interstitial cystitis overactive bladder painful bladder syndrome. March 2009 neurostimulator placed in right side of bk to make bladder work. Extremely painful. July08 removed and placed left side too painful. Nivember 08 removed by different doc. Left with sever intermittent pain in left leg. March 09 mitrofanoff procedure (major surgery) not effective enough was leaking. Aug 09 reconstruct mitrofanoff. Still pain in lwft leg but always exhausted start gettin pain in knees ankles heels arm hand and neck. Headaches reactions to meds i had taken before etc. Fibro diagnosed sept 2010 but symptoms now more severe. Memory side of things caused me recently to burn my hand. Forgot that 30 secinds prior i had used the gas hob and decided to pick up the metal grill the psn stsnds on to clean hob!!
I can’t pinpoint an AHA moment. Since my early 20’s, I remember feeling different. Most of my pain was in my lower back. I couldn’t stand up for more than 10 minutes or my back would kill me but I kept it to myself. I have suffered with flare ups since I was in my early 20’s but when I hit perimenopause, my fibro came on with a vengence! I am currently in a fibromyalgia study and have tried many different medications. I seem to get all the side effects and allergic reactions to almost everything. I had the ELISA Act test done and found I have delayed allergic reactions to seven items, including SLS which is in soap, toothpaste, etc. I have lived with skin rashes daily and since using SLS free soap, the rashes are gone! Since avoiding the items I have reactions to, I have started feeling better. I went from being afraid I was going to become disabled to being able to move. I still have back pain and my legs ache/throb but it has greatly improved my life! If you have a lot of allergic reactions and have fibro, I would highly suggest looking into the ELISA Act test. I am currently on 1800 mg of gabapentin and it seems to be helping. I hope everyone can find something to make them feel their best.
i had insomnia starting as early as 5, and exceeding difficulties rousing-i couldnt talk in the mornings, just wanted0to go back to bed, etc. this has cmtinued thru my life. in high school, i had a bout of a ‘mono-like illness’ that never tested positive for mono. i also started falling into a deep sleep every day after school where i simply could not rouse for dinner-got yelled at a lot for being ‘lazy’ but just couldnt wake up. also cont. occasional insomnia. in undergrad, was tested for epstein barr at least 20 times. cont. childhood pattern of sleeping all day sat and sun. often had swollen glands. at 20, diagnosed w migraines, which no one in my family had had. around 28, had month long mono like episode without testing positive. sleep probs cont throughout. at 30, diagnosed ibs and diverticulosis-again no family history of it. later that year, due to the mono like thing, was tested-had lots adult onset allergies. later developed asthma as well. few yrs later, migraines out of cmtrol and referred to thomas jefferson headache clinic. soon afterward, my daytime sleepiness got out of control-was napping at work etc-had sleep study done, which was inconclusive. given provigil which helped. within a year, went to dr with what i thought was worste flu ever-swollen glands, headache, worste body aches, and so exhaustf i couldnt go to work or anything-and was sleeping round the clock and not feeling rested afterward. well, almost a year and lots testing, was diagosed with cfs. as i read peoples accounts, etc, i found that my seemingly odd medical history was a pretty typical story! seven yrs later i struggle every day to regain meaning and purpose in my life, struggle w family n drs who dont get it, disappoint others when have to cancel plans, etc etc etc-you prob are all too aware of adult onset disability issues, esp those with cfs…
…one thing that has made me have more good days than bad? ritalin totally helps me.