Poll Fibromyalgia Onset Poll

[Nichole Millsteed]

I was diagnosed in 2010 after being told for 7 years prior it was depression or in my head. I have always had problems with my cycle and was diagnosed in 1992 with endometriosis. I was 16. I was later diagnosed with concurrent Polycystic Ovarian Syndrome. These conditions caused me many issues including pain and infertility.

Thank goodness for IVF! At age 21 I was tested positive for mono (glandular fever in Oz) after having been extremely fatigued. During this time I was training as a nurse and had ongoing bleeding between cycles as well as my usual cycle. I recovered from this, at least I felt I did, finished my training which involved shift work and travel for both work and study.

I noticed in 2002/2003 I was experiencing tingling and numbness in my hands, fore arms and elbows. I put it down to carpel tunnel syndrome. I had been undergoing IVF, fallen pregnant, and thought it part of the pregnancy. Halfway through the pregnancy I started working full time night shift. I returned to nights 3 months later.I had an episode of insomnia 12-18 months later and blamed the shift work.

In 2005 I again fell pregnant through IVF. I experienced increased nausea and dizziness, slept A LOT!, and wasn't coping with work. After my daughter was born I pushed myself to go to the gym, but the more I went, the greater the fatigue. I was told I was depressed.

I went back to night work after 2 months and the fatigue, generalised malaise continued. Fast forward to 2007. I seemed to always have hayfever and slept when ever I could. I had a lot of time off. We were also halfway through moving not only house but also towns. I was commuting 4 hrs between work and home on days off. 2008 I had a bad case of flu and the menstrual problems persisted. A couple of months prior I was rear ended by another car and injured my shoulder.

In 2008 I underwent a hysterectomy and found some relief finally. How ever the symptoms that led to a fibro diagnosis didn't. I was in pain, fatigued, waking from sleep unrefreshed. My short term memory and word finding ability were "off". I had difficulty concentrating, had overall body pain that was worse in my legs. More tests that showed nothing. I was diagnosed with fluid retention by the rheumatologist.

I gave up, and we suffered as a family. I changed GP, was referred to a new rheumatologist in town and, after declaring myself insane through a flood of tears, I was diagnosed and commenced treatment with amitryptalline. I was finally pain free and sleeping.

Any of the above could be triggers but as the progression was slow and diagnosis so late, I can't say for sure if any of these, or all of these, were triggers. In these years I had 4 laparoscopic surgeries, 2 LSCS, 2 egg harvests, lots of hormone injections, 1 car accident, chicken pox at 17 and my father died of cancer when I was 17.

Biased and unproven opinion/theory: perhaps it is a culmination of assaults upon the body and finally the stress of these insults is too much triggering the fibro?

 

[Emma Peters]

I was never a particularly healthy child (allergies, mild asthma, sensitive stomach) but I was essentially fairly normal until I was about 21 (1995). At 21 I was threatened at knifepoint by my now husband's ex girlfriend (and mother of his firstborn, she left him several months earlier) so for the first few weeks of our relationship my partner and I lived pretty much in hiding.

Week three of our relationship we sold everything we could, bought a car and moved from England to Scotland, where my closest friend had moved to the year before. We were informed of regular threats from the psycho ex over the next few years (via family members in England that knew her), and I tried hard not to let the continuous low level fear affect my life. I do remember waking up constantly at any noise from outside and wondering if she had finally found us, but otherwise things were good for us.

In 1997 we had our first child, I had a difficult pregnancy and an emergency C Section. Between 1995 and 1997 I had gradually developed permanently stiff and painful neck and shoulders, and a bad back which I contributed to being small and carrying a large child. I was also somewhat 'highly strung', and a somewhat timid person.

When our daughter was 3 (2000) the stress levels were through the roof and my partner and I broke up for a while. It was not an angry break, we were still friends and still living together and supporting one another, we had just drifted apart. We were apart for about 6 weeks, in that time I developed a bad case of gastro-enteritis, which I couldn't seem to totally shift. (It eventually morphed into CVS - abdominal migraine - and I was sick a couple of times a week for several years).

After the 6 weeks relationship break we decided to get back together as we were miserable apart. Things were good, and relationship wise have stayed good ever since. It's our 20th anniversary next year.

From 1995 until around 2005 we lived a happy life, in a beautiful place, with my closest friend nearby. My family and hers (she had 3 children eventually) spent all of our time together; holidays, parties, helping raise each other's children. By 2005 I had also got a handle on the CVS, and was preventing sickness attacks before they started, so it eventually disappeared.

In 2005, out of the blue, everything collapsed around us. My closest friend and all our joint friends group suddenly turned on us, and we were emotionally destroyed by it. (To this day we still aren't sure why we suddenly became public enemy number 1.) We found ourselves living in fear again, avoiding everyone we had loved and trusted for decades and locking the doors at all times.

My daughter was 8, and had a really bad time with the loss of her 3 'siblings', and my husband had a mental breakdown. I know now that I stayed strong and kept them both going for a long time afterwards. In 2006 the ex-friends moved to the next town and things were a little easier.

In 2007, The psycho ex girlfriend who had been denying my husband access to his firstborn daughter for 10 years (through spite) suddenly contacted him and allowed him to see her. We met up with her a few times in England, the girls got along well, all looked good despite the nervousness of having the ex back in our lives.

A week later she phoned and said she was sick of her daughter (aged 11) and if my husband didn't come and get her she was going to 'batter her'. Long story short, we collected my step daughter a few weeks later and she moved in with us. Fortunately she was a fabulous child and she stayed with us until she was 18.

Around 2008 I tried to give up smoking (I was never a heavy smoker and had given up before with little trouble) and found myself in an extreme physical and emotional mess. I went to the doctors to get patches to help me stabilise and was told there was no way the nicotine withdrawal could last that long. I was diagnosed then and there with clinical depression.

The pain in my body gradually worsened, my sleeping patterns became erratic and I was constantly exhausted. over the next few years I was shuffled about from doctor to doctor, treated with various antidepressants and pain meds, told it was all in my head, had multiple tests, sent to counselling, and eventually diagnosed with PTSD based acute anxiety/depression and fibromyalgia around 2011.

So, for me, it's hard to know when it started exactly, or what initially caused it. There was the gastro-entiritis attack, the difficult pregnancy, the emergency birth, 3 periods of extreme emotional trauma and fear, and a high level of background anxiety for 20 years. My feeling is that when your adrenal system is in total chaos and your nerves are shot, physical illnesses (and even the act of removing nicotine from your body) can be enough to trigger a multi system crash. From other people's stories on here it looks like it works the other way round too, massive physical traumas followed by extreme stress can do the same thing.

Basically I feel like my body (and my mind) just had more than it could cope with and overloaded. I know stress is a massive trigger for bad days for me, my fibro and anxiety both worsen in stressful periods. I do know that the pain came first, years before the full on anxiety, (I clearly remember struggling to look behind me to reverse a car when I was pregnant aged 23, as my neck and shoulders were too tight and painful even then) and the anxiety came shortly before the exhaustion.

The other fibro symptoms (restless legs, fibro fog, allodynia, light sensitivity, medication sensitivity, exercise intolerance, unrefreshing light sleep) arrived gradually over a year or so after the exhaustion kicked in. I do believe that for me, the lack of deep sleep and inability to fully relax is the key to all those, but that is just my experience.

I hope this background information helps in some way with your research.

 

[YalwayssickOvercome_ails]

Its difficult to determine the exact "onset" of Fibromyalgia diagnosed in 2011, since having prior diagnose of CFIDS/CFS in 1991. There were numerous health related traumas that complicated an already complex body system. There was question regarding possible MS (intermittent-relapsing) due to symptoms. The MS was not necessarily ruled out as there was no lumbar puncture done. Instead there was Neurological, Cognitive, Movement and other related disordered functionality.

As I see it and have experienced Fibromyalgia, seems to be a subset of CFS/Me. Perhaps they are one in the same condition with various facets of manifestation, since every sufferer has a wide difference of similar symptoms effecting the immune system with possibility of defective autoimmune functioning? Inflammation, pain etc, impacts the entire body, the blood brain barrier thresholds, and negatively thrusts the immune system into combat overdrive mode. Add any form of arthritis or other autoimmune disease to the mix, without finding the Primary Cause of the CFS/Fibro and what is gotten is a plethora of failed medication intervention or treatments. Then there is the "gut" connection.

For me, an overall assessment of entire body functions relating to the Central, Peripheral, Autonomic, Sympathetic and Parasympathetic Nervous System Responses/Reactions based on my personal health experience and years of research, points to the Autoimmune deficits that for too long have been overlooked or otherwise not considered.

 

[Beverly Patterson]

I was diagnosed after contracting chicken pox at age 28, followed by mononucleosis two years later with a relapse one month after I got married. I was fortunate to have a doctor familiar with fibromyalgia at the time.

 

[Lucianne]

A chiropractic adjustment started my fibromyalgia also. Over three years ago, I was stressed and developed pain in my chest and shoulder. To make a very long story short, after many tests and not getting any answers, I went to a chiropractor for the first time in my 66 years. After a few treatments, I developed back pain and then pain in both thighs and now pain everywhere. Have since seen many doctors, tried many therapies and medications and nothing really helps except pacing and afternoon naps.

 

[Seeksassy]

I woke up on the morning of Dec 4 '96 with pain in almost all of my joints, hands, feet, elbows, knees.....seemed out of the blue and my GP diagnosed fibromyalgia the first visit I made to her about this (lucky to receive the quick diagnosis, I know now). Although no medical professional has ever said so, I now wonder if a car accident almost a year earlier where I sustained a very bad broken foot which lead to complex regional pain syndrome, could have been a trigger. There wasn't much information on these pain conditions back then, but we now know that prolonged acute pain changes the brain, so perhaps the accident was the precipitating factor.

 

[Cort]

I was never a particularly healthy child (allergies, mild asthma, sensitive stomach) but I was essentially fairly normal until I was about 21 (1995). At 21 I was threatened at knifepoint by my now husband's ex girlfriend (and mother of his firstborn, she left him several months earlier) so for the first few weeks of our relationship my partner and I lived pretty much in hiding.

Week three of our relationship we sold everything we could, bought a car and moved from England to Scotland, where my closest friend had moved to the year before. We were informed of regular threats from the psycho ex over the next few years (via family members in England that knew her), and I tried hard not to let the continuous low level fear affect my life. I do remember waking up constantly at any noise from outside and wondering if she had finally found us, but otherwise things were good for us.

In 1997 we had our first child, I had a difficult pregnancy and an emergency C Section. Between 1995 and 1997 I had gradually developed permanently stiff and painful neck and shoulders, and a bad back which I contributed to being small and carrying a large child. I was also somewhat 'highly strung', and a somewhat timid person.

When our daughter was 3 (2000) the stress levels were through the roof and my partner and I broke up for a while. It was not an angry break, we were still friends and still living together and supporting one another, we had just drifted apart. We were apart for about 6 weeks, in that time I developed a bad case of gastro-enteritis, which I couldn't seem to totally shift. (It eventually morphed into CVS - abdominal migraine - and I was sick a couple of times a week for several years).

After the 6 weeks relationship break we decided to get back together as we were miserable apart. Things were good, and relationship wise have stayed good ever since. It's our 20th anniversary next year.

From 1995 until around 2005 we lived a happy life, in a beautiful place, with my closest friend nearby. My family and hers (she had 3 children eventually) spent all of our time together; holidays, parties, helping raise each other's children. By 2005 I had also got a handle on the CVS, and was preventing sickness attacks before they started, so it eventually disappeared.

In 2005, out of the blue, everything collapsed around us. My closest friend and all our joint friends group suddenly turned on us, and we were emotionally destroyed by it. (To this day we still aren't sure why we suddenly became public enemy number 1.) We found ourselves living in fear again, avoiding everyone we had loved and trusted for decades and locking the doors at all times.

My daughter was 8, and had a really bad time with the loss of her 3 'siblings', and my husband had a mental breakdown. I know now that I stayed strong and kept them both going for a long time afterwards. In 2006 the ex-friends moved to the next town and things were a little easier.

In 2007, The psycho ex girlfriend who had been denying my husband access to his firstborn daughter for 10 years (through spite) suddenly contacted him and allowed him to see her. We met up with her a few times in England, the girls got along well, all looked good despite the nervousness of having the ex back in our lives.

A week later she phoned and said she was sick of her daughter (aged 11) and if my husband didn't come and get her she was going to 'batter her'. Long story short, we collected my step daughter a few weeks later and she moved in with us. Fortunately she was a fabulous child and she stayed with us until she was 18.

Around 2008 I tried to give up smoking (I was never a heavy smoker and had given up before with little trouble) and found myself in an extreme physical and emotional mess. I went to the doctors to get patches to help me stabilise and was told there was no way the nicotine withdrawal could last that long. I was diagnosed then and there with clinical depression.

The pain in my body gradually worsened, my sleeping patterns became erratic and I was constantly exhausted. over the next few years I was shuffled about from doctor to doctor, treated with various antidepressants and pain meds, told it was all in my head, had multiple tests, sent to counselling, and eventually diagnosed with PTSD based acute anxiety/depression and fibromyalgia around 2011.

So, for me, it's hard to know when it started exactly, or what initially caused it. There was the gastro-entiritis attack, the difficult pregnancy, the emergency birth, 3 periods of extreme emotional trauma and fear, and a high level of background anxiety for 20 years. My feeling is that when your adrenal system is in total chaos and your nerves are shot, physical illnesses (and even the act of removing nicotine from your body) can be enough to trigger a multi system crash. From other people's stories on here it looks like it works the other way round too, massive physical traumas followed by extreme stress can do the same thing.

Basically I feel like my body (and my mind) just had more than it could cope with and overloaded. I know stress is a massive trigger for bad days for me, my fibro and anxiety both worsen in stressful periods. I do know that the pain came first, years before the full on anxiety, (I clearly remember struggling to look behind me to reverse a car when I was pregnant aged 23, as my neck and shoulders were too tight and painful even then) and the anxiety came shortly before the exhaustion.

The other fibro symptoms (restless legs, fibro fog, allodynia, light sensitivity, medication sensitivity, exercise intolerance, unrefreshing light sleep) arrived gradually over a year or so after the exhaustion kicked in. I do believe that for me, the lack of deep sleep and inability to fully relax is the key to all those, but that is just my experience.

I hope this background information helps in some way with your research.

Thanks, Emma. It seems like with a lot of people a collection of insults over time just wear something out...Interestingly for me - it just happened out of the blue. I was doing really well actually - I had found my passion and my career and out of the blue - bam...

 

[Cort]

I woke up on the morning of Dec 4 '96 with pain in almost all of my joints, hands, feet, elbows, knees.....seemed out of the blue and my GP diagnosed fibromyalgia the first visit I made to her about this (lucky to receive the quick diagnosis, I know now). Although no medical professional has ever said so, I now wonder if a car accident almost a year earlier where I sustained a very bad broken foot which lead to complex regional pain syndrome, could have been a trigger. There wasn't much information on these pain conditions back then, but we now know that prolonged acute pain changes the brain, so perhaps the accident was the precipitating factor.

So you have CRPS Seeksassy? It was present in your foot but you didn't feel the widespread pain until that morning.... CRPS is an autoimmune and autonomic nervous system disease - I wouldn't be surprised if there was a connection. I'll bet FM pops up in a lot of other pain disorders.

 

[Cort]

A chiropractic adjustment started my fibromyalgia also. Over three years ago, I was stressed and developed pain in my chest and shoulder. To make a very long story short, after many tests and not getting any answers, I went to a chiropractor for the first time in my 66 years. After a few treatments, I developed back pain and then pain in both thighs and now pain everywhere. Have since seen many doctors, tried many therapies and medications and nothing really helps except pacing and afternoon naps.

You're the second one on this thread Lucianne to get this thing started with a chiropracter (!)

 

[Cort]

Its difficult to determine the exact "onset" of Fibromyalgia diagnosed in 2011, since having prior diagnose of CFIDS/CFS in 1991. There were numerous health related traumas that complicated an already complex body system. There was question regarding possible MS (intermittent-relapsing) due to symptoms. The MS was not necessarily ruled out as there was no lumbar puncture done. Instead there was Neurological, Cognitive, Movement and other related disordered functionality.

As I see it and have experienced Fibromyalgia, seems to be a subset of CFS/Me. Perhaps they are one in the same condition with various facets of manifestation, since every sufferer has a wide difference of similar symptoms effecting the immune system with possibility of defective autoimmune functioning? Inflammation, pain etc, impacts the entire body, the blood brain barrier thresholds, and negatively thrusts the immune system into combat overdrive mode. Add any form of arthritis or other autoimmune disease to the mix, without finding the Primary Cause of the CFS/Fibro and what is gotten is a plethora of failed medication intervention or treatments. Then there is the "gut" connection.

For me, an overall assessment of entire body functions relating to the Central, Peripheral, Autonomic, Sympathetic and Parasympathetic Nervous System Responses/Reactions based on my personal health experience and years of research, points to the Autoimmune deficits that for too long have been overlooked or otherwise not considered.

Several researchers are looking for those elusive autoantibodies. ME/CFS sure looks like an autoimmune disorder in many ways...In several ways it would be surprising if it was not. Time will tell, I suppose.

 

[yellerlab]

I was severely physically abused and, of course emotionally and verbally abused as a child for as long as I can remember until I got away from my family at 17. My mother has Narcissistic Personality Disorder. It is one of the most violent of all Personality Disorders. I stayed strong and healthy because I needed to survive. When I finally got married and had a great job, my body began to break down. I got CFS in the 1990's when everyone thought it was fake. By 2000 I was facing divorce and Fibromyalgia hit me like the flu and never left. I dwindled down to 100 lbs (at 5'8"). I was bedridden to the point of not being able to get up to cook or eat. Like many with Fibro, friends disappeared, I lost my farm, I had to rent a room where I could just lie in bed every day for 2 years. Though doctors claim this disease is not progressive, my body continues to decline. Last year, I could go out for a day and be ok the next day. This year, I can not leave my bed for more than 2 hours. Otherwise, I pay for it for several days afterward. I live in a large city yet there is no doctor who will treat my fibro.

My hope now is that the medical marijuana bill that has passed will open dispensaries and that Fibro will quickly be added to the list of those eligible. The pain, exhaustion, and isolation of this illness is a waking death.

 

[Louise2010]

I had long term stress due to a custody battle for many years and then the final straw was 2 operations close to each other. I was sick for about 3 years and then recovered for about 5 years when I was diagnosed with a tumor and had 6 operations one after the other. Tumor is now fine but Fibromyalgia is worse than ever.

 

[Cort]

G

I was severely physically abused and, of course emotionally and verbally abused as a child for as long as I can remember until I got away from my family at 17. My mother has Narcissistic Personality Disorder. It is one of the most violent of all Personality Disorders. I stayed strong and healthy because I needed to survive. When I finally got married and had a great job, my body began to break down. I got CFS in the 1990's when everyone thought it was fake. By 2000 I was facing divorce and Fibromyalgia hit me like the flu and never left. I dwindled down to 100 lbs (at 5'8"). I was bedridden to the point of not being able to get up to cook or eat. Like many with Fibro, friends disappeared, I lost my farm, I had to rent a room where I could just lie in bed every day for 2 years. Though doctors claim this disease is not progressive, my body continues to decline. Last year, I could go out for a day and be ok the next day. This year, I can not leave my bed for more than 2 hours. Otherwise, I pay for it for several days afterward. I live in a large city yet there is no doctor who will treat my fibro.

My hope now is that the medical marijuana bill that has passed will open dispensaries and that Fibro will quickly be added to the list of those eligible. The pain, exhaustion, and isolation of this illness is a waking death.

Good luck with the medical marijuana. I think it's time is coming...
It definitely can be progressive....there's no doubt about that ....

Have you read the last best cure series? Severe emotional stressors definitely set up people for inflammatory and autoimmune and other disorders later in life - http://www.cortjohnson.org/blog/201...t-cure-ii-autoimmune-patient-searches-health/

What city do you live in?

 

[TigerLilea]

I don't have FM, however, my SIL does. She was injured at work and a couple of weeks later developed FM. She did recover enough to go back to work a year later, but a couple of years later had the same injury again at work. Due to LTD insisting that she do their job re-entry programme, she was further injured and has never been able to return to work. That was approximately 15 years ago now.

 

[TigerLilea]

The results of this study surprised me. I've been working with fibromyalgia patients for almost 20 years and I've rarely talked to anyone who didn't have one or more precipitating event they were aware of. For me, it began with mono, which turned into ME/CFS. Then a couple of years later, a serious car accident triggered the fibromyalgia. I'll be very interested to see the results of your poll here.

Hi Karen - Are you still having good results with using high doses of Vitamin B1?

 

[B80d]

It began with an unidentified herpès-like infection.

 

[Merida]

My fibromyalgia started after a chiropractor made extra severe adjustments to my back. He admitted he did too much, too fast. I was fine before that. That was 8 years ago.

Edwin, hope you read this. My CFS/FM began in the same way. And I know of another person who had this same history. There are several reports at Chiari sites where people apparently had an asymptomatic Chiari that became devastatingly symptomatic after a chiro adjustment.

I think it possible that we are a bit structurally 'fragile.' I have mild scoliosis, and this may be an important foundational problem? The problem with scoliosis is that it also is related to twists in the neck/pelvis.

What helped me: warm pool 3 days week/ one year- gentle varied movements. NUCCA chiropractic, myofacial release, walking as tolerated. For me, it has been 17 nightmarish years. If you have sacroiliac pain/ pain when sitting, the chiro may have destabilized your sacrum, which is held in place with ligaments. I tried prolotherapy into the sacral ligaments, but this was a mistake. I had a terrible long term relapse with multiple neuro symptoms/severe fatigue. This experience demonstrated to me the importance of the sacrum/pelvis in my whole symptom complex. My neck was also affected. I am a typical CFS /FM patient -!led support group 13 years.

Hope you are doing better. There are a very few experts on the sacrum/pelvis alignment. Check you tube. I am still nosy stable.

 

[Rita marshall]

I wonder for how many people it's just bad luck - a run of accidents and other injuries and something happens to the system? It shows how hard it can be to identify a single factor as well. For my ex-girlfriend it was 4 or 5 back surgeries. After that she had failed back syndrome and fibromyalgia.

 

[Rita marshall]

Hi I'm new to this forum. I am so glad for the support. I had CFS/FM for 14 years 30 years ago. I took OMX, a probiotic for a number of years and saw amazing results. I have always had gut problems due to all the antibiotics I took all my life. In Feb I started a long journey of treatments for my gut issues, and as soon as I started the first treatment to kill of the bad bacteria I fell in a heap. Was bed ridden the first month and have slowly been improving since. I can't believe I am back in this place again. I have also been treating the severe candida. The CFS/FM has ridiculously controlled my life to the extent I barely leave the house. I'm hoping I will keep improving. Now I've been told that my body went into complete shock and caused adrenal exhaustion. I would love to hear what others have to say about this.

 

[Merida]

Don't know what happened with attempted post. Emma, you might find YouTube videos by a Robert Smith - Emotional Freedom Technique- interesting.