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How did your fibromyalgia start?

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Posted 9/20/2009 9:11 AM (GMT 0)
Hello everyone,

I do not have fibromyalgia but I do have interstitial cystitis (IC), which is thought by some researchers to be related to FM. I want to know what I can do to prevent this disease from happening to me.

I am interested in hearing from the people on this forum: how did your FM symptoms start? Was there any particular event that occurred right before your FM began that you suspect might have triggered it?

Thanks,

Chris

Post Edited (ChrisG2) : 9/27/2009 2:56:20 AM (GMT-6)

Posted 9/20/2009 10:26 AM (GMT 0)
My fibro started in my finger. One day it was stiff and painful, then all of a sudden the rest of my body hurt so badly that I could barely get out of a chair. The pain stayed, and I went to my GP, crying my eyes out from the pain - and I was diagnosed as having probable fibro because I had every trigger point there was. I was then sent to a rheumatologist, where I had countless tests......after about 4 months of this, I was officially diagnosed with fibromyalgia.

The only event that I can think of, before my fibro, was that I had a hysterectomy a few month before the pain started. I don't know if that was a trigger or not. I know of no way to prevent fibro.

Sorry you are having problems - I hope it never turns into fibro for you.
Posted 9/20/2009 11:50 AM (GMT 0)
I was in a car wreck in Oct 2000, from that point I have hurt in different places and then had two surgeries in spring of 2007. I had a stressed induced panic attac in Dec. of 2006. Noone can tell me what caused the FM to show up but I think it was the wreck in 2000, because I have nothing but trouble since then. Hope this helps, just hope you don't get FM it is just no fun..
Posted 9/20/2009 12:01 PM (GMT 0)
Mine emerged and progressed exactl like myjoy's! Amazing. It started showing in my left hand's middle finger (of ALL places!!) - it would stick and freeze when I woke up. Then it stuck in the up position. Then my hands became claws in the morning. I felt like a computer getting a virus - it swept thru me in a matter of days and everything hurt and I would almost collapse every day at work. I felt incredibly stressed because I was scared, and felt weak, like I did something to cause this, that it was my fault, and that I was letting everyone at work down due to being undependable. (I feel like that now, as well, in my new job.)

I fell and got a head injury, with a hairline skull fracture in 1999; had a hysterectomy in 2002; I moved my Mom in with me when she was diagnosed with dementia, and was her primaary caregiver for six years; my car was t-boned in an accident in 2007 that resulted in a severe whiplash in all three regions of my back; I grew up kinda poor in a home with troubled, alcoholic, violent dynamics against a rich, preppy, privileged New England backdrop. My whole life has been a rollercoaster, so I guess it could be a combination of everything! I think it was the head injury that started it, though. I slipped on wet ice and landed smack on the occipital ridge of my head, knocking myself out for about 5 minutes. Hairline fracture, grade 3 concussion... If you think of the brain, the functions of that area have a lot to do with fibro. What a soap opera life is. :)
Posted 9/20/2009 1:00 PM (GMT 0)
Oh my gosh, that is so wierd. I was in a pretty bad car accident about 10 years ago and suffered with a head trauma (not seriously thou), then a year later I had a hysterectomy. When I think back to the first pain I remember it was in my index finger on my right hand. Hum.
Posted 9/20/2009 1:37 PM (GMT 0)
left hand for me. I think i have had the pain since elementary when i had a horrid knee injury. There is no known way to prevent or cure fibro.
Posted 9/20/2009 2:43 PM (GMT 0)
Mine started after a long stressful time in my life with anxiety, panic attacks and fatigue. about the same time as peri-menopause. It took quite awhile before I had a full blown flare that got a dx of fibro. I attribute that to the fact that I was already on amitriptyline.

 

Some have had it all their lives and some can't attribute it to any event in their lives so there is not way to prevent it.

 

luv and hugs

Marlee

Posted 9/20/2009 3:19 PM (GMT 0)
My fibro symptoms came on quickly, I felt like I had been hit by a truck.

Fatigue was overwhelming for me. I couldn't even finish taking a shower without sitting on
the shower bench to rest. I didn't even have the energy to shave both legs. It hurt just to
wash my hair. I hurt all over and found it harder to get a good night's sleep. Insomnia was
frequent. My energy was zapped. My body felt alien to me, it was scary.
Posted 9/20/2009 3:20 PM (GMT 0)
I went through a series of extreme stress...had to move out of our home that sold and husband was on the road, so it was on me to move alot of our items out. Was working at the time and then my husband had a heart attack while on the road so had to go and see about him and pick him up. Had a very bad winter where we were trying to buy property and no home so we lived with a friend in his small apartment...first time I'd ever lived in an apartment. Finally we found our home and moved in but my husband lost his job and I had no job because of the move. My brother and sister in law had to move in with us. I had to go back to work with my husband to team truck driving and that was the bottom line.

My skin started itching something fierce. I thought I had some kind of bug. I couldn't sleep at night. My right arm was so sore I couldn't move it behind me at all. Then my hands started hurting, from elbows to fingers. All the rest of the things that have to do with fibro came along. Eventually found I had gall stones and cirhossis of the liver. Went through doctor after doctor and was finally diagnosed in July or August of this year. But it happened much sooner than that.
Posted 9/20/2009 7:10 PM (GMT 0)
 

Hi Chris,

  Personally I think the best things you can do are to support your body's detoxification systems and do your best to avoid stress, or to take time to process it when it comes i.e. if emotional, take time to journal the feelings, cry it out, talk about it etc., and if physical, take time to rest and research supplements to support your body's healing.

  For me, symptoms started after being exposed to mold in a bad apartment rental.  Then intense stress/emotional trauma that occurred, coupled with recurring overextending myself physically. 

  I have had great success in ridding the pain and fog through the use of diet and herbs and supplements.  A clean diet - cut out white sugar and artificial sweeteners, white flour, caffiene, and artificial preservatives etc.  You can use stevia, brown rice syrup, maple syrup for healthy sweeteners.  Eat lots of green leafy veggies.  Also beets and carrots are good detoxifers but both very sweet so not the best choice if candida or blood sugar issues are in play.  Drink lots of purified water, not tap water.  Spring water is a good choice because it still has lots of minerals in it.  Basically, through a clean and healthy diet you can do a lot to give your body the extra resources it needs to stay on top of things better. 

  Specifically for detoxification, fruits and veggies and lots of water are great.  Juicing is AWESOME to support overall health and healthy detoxification also. 

  Just a word to the wise about diet choices, although some people do well on vegetarian diets, I would not recommend it.  When a body is sick or recovering, protein is really important.  I tried a vegetarian diet and became very weak.  I need meat.   And vegetarian or vegan diets can result in serious deficiencies developing if they are not done properly.  I just mention that because the material I read at the time all claimed that vegetarians were healthier than meat eaters.   Later, I found all the reports of the people who had developed problems from not eating meat and not getting the nutrients lacking in a veggie diet.  So non-meat diets need to be done very diligently with supplementation etc.   Everyone is different, but common sense and balance and following your own instincts are always important whatever choices you make.

  Hope that helps.

  manyembers

Posted 9/20/2009 8:33 PM (GMT 0)
chris, i hope you never get fibro. it's very debilitating. there's no real way to prevent it, BUT if i had listened to my body better, it might not have gotten worse. i was tired all the time and having trouble keeping up with things at work. but everyone else around me complained about being tired too so i thought i was just weak or lazy or that it was normal. i had no basis of comparison to see that my "tired" was way way more intense than normal "tired". then a stressful period at work and wham, it hit me full on like a hurricane.

so take care of yourself and maybe even if you do get it it will be milder than some of us
Posted 9/20/2009 10:19 PM (GMT 0)
Before i noticed anything wrong at all, it felt like it was overnight truely. I was sparring with my youngest half brother and he kicked me in the chest with well over a foot and more the 100 lbs. difference i flew. I always wanted to fly but not like that. Landing on my back the air flew from my body and everything went blurry. When i finally got up it was no diffrent then the many other injuries i cruelly give myself so i grabbed a shower and went to bed. Then in the dead of night i woke up in pain, it was every where! so severe i remember crawling to the bathroom to vomit. I woke up in an er with my aunt they told me i had a pfo (hole in my heart) in just months they fixed it and ever since I have hurt everywhere. up till the fixed heart i had such hope i would wake up and everything would return to normal. But about a year after they finally said it was fibro. today the pain is more annoying then anything else. Though i do take time released pain killers too, and yet lesson never learned when he kicks me in my chest i wish i had never been full of pride and kept on, but hey if you can't beat up your youngest brother then what would be left in life right? lol
Posted 9/21/2009 2:04 AM (GMT 0)

It's so interesting to hear how it began for everyone. ..

I had Rheumatoid Arthritis, Rheumatic Fever and Double Pneumonia at age 7 (the first sign of Autoimmune issues). Right before that came on, I'd been brutally molested by a 17-year-old neighbor boy. It was so traumatic that I passed out trying to fight him. I held it all inside, didn't tell anyone and just felt like giving up (there's a fine stressful triggering event for ya). Just before I turned 6, I'd seen my sister get hit and killed by a car. Two years prior to that, my other sister (next in age) died of cancer. When I was 7, my mother found a natural remedy for the Rheumatoid Arthritis and it disappeared.  But, before that, medical doctors had me on so many steroids, my finger nails and toe nails fell completely off. From that point on, I was always very anemic, super skinny and got dizzy every time I stood up. I had depression for the rest of my life. Oh yeah... I broke my 3rd Lumbar once when I was 11 and again when I was 16.

It wasn't until I was 37 that I broke my wrist and suffered nerve damage. I was diagnosed with RSD (Reflex Sympathetic Dystrophy) in my left arm (which can behave a lot like FM). After over a year of mega drugs, weekly nerve block injections under anesthesia and aggressive daily hand therapy, it went away. Had an agonizing monster gall stone when I was pregnant (3 and a half years ago) and had to wait to have my gall bladder removed until after the birth.

This past Winter, I found a deer tick in me. A month later, I had joint pain. Shortly after that, I lost my job. I knew I'd have to move my 3 year old daughter and I out of our house (rent was way too high to afford with Unemployment). I had been supporting a boyfriend since August of the previous year. Not only did he not rise to the occasion and attempt to find employment, he began to play with my mind in ways I could never even describe. That's when the white spots started appearing (Vitiligo - autoimmune response), diahrrea, major headaches and weight loss. When it was time for us to move, we stayed until just before we got evicted. The mind f--k continued. It was extremely humiliating to be evicted. I had no idea as to where I'd move with my daughter and had this man who, once I became vulnerable, became my undoing. The stress mounted more and more each day. It wasn't until after I split from the boyfriend and moved my girl and I in with my sister, that the major symptoms kicked in. I was desparate to find a plan, because I knew we couldn't stay at my sister's. The stress continued to mount. It seemed, at first, like the RSD had returned and spread to all 4 extremities. Except, this time, specifically my middle and ring fingers of each hand started to really hurt. It was within a few days that I had a mixture of shooting pain, muscle spasms, numbness and weakness all over my entire body. It seemed to travel around my body with no rhyme or reason. Within a week (this was only a little over a week ago), I was in complete agony and diagnosed with Fibromyalgia...

Posted 9/27/2009 9:02 AM (GMT 0)
Thanks for the very detailed answers. From the posts so far, the most common triggering event is physical injury (to my surprise), followed by psychological stress. The mentions of mold and surgery as possible triggering events are also interesting.
Posted 9/28/2009 12:13 PM (GMT 0)
I don't know exactly when my fibro began. I know as early as my teens i had unexplain fatigue, but I never had any real pain until my twenties. I noticed my wrist was hurting and getting stiff. I never thought much of it. I thought maybe it was just sore from over use.(I poured coffee for a living.) As the years went on I felt worse and worse. I went to alot of drs, but none never really wanted to help me. one dr said it was depression, and gave me anti depressants. that was the wrong move for me. I became very sad and almost sucidal. My GP mentioned fibro last year. (I'm now in my 30s) I had suspected fibro for a couple of years but didn't want to mention it, because I know alot of drs don't believe in it. and I was also afraid what if it was something else, and they just stopped looking and said it was fibro and then i died of some terrible disease. any way Now I know the source of my problems, and can get some treatment.
Posted 10/3/2009 7:14 AM (GMT 0)
.

Post Edited (doseofvanilla) : 5/6/2011 2:33:19 AM (GMT-6)

Posted 10/3/2009 2:34 PM (GMT 0)
I've had symptoms of this disorder ever since I can remember at age 3. Horrible "growing pains" in the back of my legs, shoulder and hip pain... I just figured it was how life was and everybody hurt all the time. Used to think that gymnists and dancers were so brave to go thru all that agony just to do what they loved.

I was not looking for a dx, just remarked to my doc that the breast exam was beyond painful. She did some poking and prodding and told me she thought I had fibro. I told her, "No! You have really pokey fingers!" She had been watching my symptoms for about a year and already had decided about it. Once I started reading up on it I felt kind of cheated. I hadn't realize that the wonderful relief I felt when having a few drinks wasn't because wine was so great... It was because it blurred my pain sensation. I'm very lucky that I didn't take up heavy drinking because it really made me feel great.

Anyway, I've had some of this my entire life.
Posted 10/3/2009 8:40 PM (GMT 0)
My fibro symptoms started not long after a serious illness (which was probably the beginning of my autoimmune hepatitis but I didn't know it). I was terribly stressed at the time, because I was recently married and my doctor was telling me I might need a liver transplant. They couldn't figure out what was wrong with me! Well, eventually we realized that the OTC herbal supplements I was taking were irritating my liver, so as soon as I stopped taking them my liver enzymes began to improve.

Anyway, not long after that, the fibro symptoms began with a mild backache (lower back) after long periods of walking or standing. I could walk or stand for maybe 2 hours, then my back would start to hurt. I really noticed it when I was teaching class (I teach college level math). If I stood for most of a 3 hour class, I was in a lot of pain while trying to walk to my car.

Over a period of 2 years it got worse and worse....I could stand for an hour, then a half hour, then just a few minutes. Plus I began to get muscle spasms and cramps, pain in my feet and ankles, hands....oh, just everywhere. I finally ended up in a wheelchair in August 2008 (still in it).

JoAnn
Posted 10/4/2009 9:11 PM (GMT 0)

Wow, Jeannie...

Long before I even realized I had a problem, I tried explaining to my family, the initial feeling of pain (almost a subtle burning sensation) when my muscles would relax after one drink. I always new I was tense, but had no idea just how. You're the first person I've ever heard describe that feeling. Yes... I'm so grateful that I don't have a predisposition to substance addiction.

I was dx with Rheumatoid Arthritis at age 7. So, I knew the excruciating pain very early on. I recovered (or so we all thought) by the time I was 8. So many injuries then and now, along with Reflex Sympathetic Dystrophy... Finally got a dx a month ago.

Posted 10/4/2009 9:39 PM (GMT 0)
Hashimotos Hypothyroidism. One day in 1994 my doc called and gave me 3 dx.s on the phone. Hypothyroidism (my immune system attacked my thyroid), anemia, and Fibro. Before that I was under tremendous strain raising my 2 boys single handedly, youngest also being threatened and beaten at school. Oldest ADHD. Youngest Learning Disability. Volatile divorce. 3 jobs. Tremendous fatigue.
Posted 10/5/2009 1:53 AM (GMT 0)
Wow, Jeannie and Rachel, I also had that same reaction to alcohol. I have a predisposition to substance addiction, though, so I gave up drinking altogether. I also remember extremely painful growing pains when I was little - I would be crying and try to describe to my Mom that my bones hurt. I especially remember femur pain, joint pain, and shoulder pain around age 6. Also at age 6 I was hospitalized for double pneumonia, and spent a week in there. How interesting - we all have so many similarities. Fibro researchers should take stock of this forum!
Posted 10/5/2009 2:55 AM (GMT 0)
That's wild, Littleneck! You probably had Rheumatoid Arthritis and were never diagnosed. It's said that the Juvenile form can just "go away". I always ascribed my sudden onset of illness at that age to severe emotional trauma. Did you experience anything traumatic as a child?

Yes! Fibro Researchers SHOULD take stock in this forum. It's facsinating how the Fibro can be correlated back to childhood illness.
Posted 10/5/2009 3:23 AM (GMT 0)
Mine came on just all of a sudden.  In November 2005 I was on my way to a dinner and noticed my arms feeling like they where being squeezed.  I had to ask my husband if my jacket wat too tight.  He said it looked fine.  As the days passed the pain only got worse.  Both arms from the sholder down and evem my legs on some days.  I went through many test  with my GP, then nerologist, to the rhemy before being dx.

I have had many tramatic things happen in life.  Rape, Mulistation.  But that was way, way before this happen.  Like was good when this happened.  Nothing out of the normal.  It just started. 

ali

Posted 10/5/2009 4:23 AM (GMT 0)
Hmmm, Ali... A very traumatic and violent molestation triggered my Rheumatoid Arthritis at age 7. I never told anyone, so I held it in. Other serious trauma 2 years prior and 2 years prior to that. Wonder how many people dx with fibro have been sexually abused as children.

Posted 10/5/2009 6:00 AM (GMT 0)
I was physically and verbally abused as a child, by my mother, who was a holocaust survivor. So...add to the pain guilt...my mom went through so much pain and suffering, I couldn't put anything on her. So I held it in for many year. I grew up, married a man I didn't love, , divorced him, and got into an auto wreck that was pretty back, banged up my back a bit.Dx with fibro a couple years later
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