Poll Fibromyalgia Onset Poll

[Merida]

Very similar to some people with ME/CFS with their very rapid onset. One guy - a weightlifter collapsed in the middle of a lift - never was the same again. A couple of months earlier he'd been in horrific car accident in which he was uninjured but someone else died. Gotta think that set him up for his later fall.

All of these stories are very interesting. The sacrum, which is the center bone of the pelvis, means 'sacred.' The 'ancients' felt it was the seat of the soul. In Hindu philosophy ( and others) the sacrum houses the important kundalini energy.

The sacrum is held in place with ligaments, ie, bone to bone soft tissue. These ligaments bear the weight of the entire body. So, damage to them can cause permanent sacral dysfunction. We appreciate that when knee ligaments are damaged a ligament graft is often needed.

This poor guy probably totally crashed his sacral ligaments during the lift. The sacrum also supports the spinal cord, so when the sacrum shifts, tension can be directed right to the spinal cord.

Geez, I will stop here. But, read Erik Dalton on the sacrum. Wow.

Thanks for sharing Cort. I am learning so much.

 

[Seeksassy]

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.

I read a research report about a year ago, I think, in a pain journal that proposed that after years of crps it can and does spread and progress. They suggested that for crps people, later diagnoses of fms and/or cfs are wrong, that those symptoms are actually the progression of crps. I found this very interesting, and probably important from a research perspective; but on a personal level I guess it doesn't matter what name is assigned to my symptoms as all attempts at treatment are still directed at the symptoms.

 

[Merida]

Seeksassy,
In 2009 neurosurgeon Robert Bray ( former chief of neurosurgery Cedars Sinai - Los Angeles) announced that he has discovered a 'new' structural anomaly called Thoracic Epidural Arteriovenous Malformation. These can occur at other levels in the spine as well. These can cause severe pain in regional areas, but also contribute to progressive spinal cord problems. ( ie myelopathy). Please read about this. It can not be diagnosed by regular MRI. Dr. bray uses a microsurgical technique to correct these.

It seems that no (?) crps/ FM/ CFS people have had studies to look for abnormal blood flow in the neck or in other areas of the spinal cord. Would be great to get some good research in this area. Once the neural tissue is being impacted or damaged ( due to virus/ blood flow, etc.) there is a cascade of abnormal immune, biochemical abnormalities. Too many researchers have been looking at this chemical cascade in my opinion, and not the deeper issues of structure and function of the central nervous system.

 

[Merida]

http://www.newswise.com/articles/di...ower-body-function-primarily-in-younger-women

Hope this link works !!

 

[Seeksassy]

Thanks Merida, I'll check it out.

 

[Seeksassy]

http://www.newswise.com/articles/di...ower-body-function-primarily-in-younger-women

Hope this link works !!

Yes, the link works. However, my crps resulted from crushed bones in one foot from a car accident. I don't have back pain. This is a very interesting article, tho', and exciting to know some chronic pain sufferers are getting a diagnosis and effective relief.

 

[Seeksassy]

Seeksassy,
In 2009 neurosurgeon Robert Bray ( former chief of neurosurgery Cedars Sinai - Los Angeles) announced that he has discovered a 'new' structural anomaly called Thoracic Epidural Arteriovenous Malformation. These can occur at other levels in the spine as well. These can cause severe pain in regional areas, but also contribute to progressive spinal cord problems. ( ie myelopathy). Please read about this. It can not be diagnosed by regular MRI. Dr. bray uses a microsurgical technique to correct these.

It seems that no (?) crps/ FM/ CFS people have had studies to look for abnormal blood flow in the neck or in other areas of the spinal cord. Would be great to get some good research in this area. Once the neural tissue is being impacted or damaged ( due to virus/ blood flow, etc.) there is a cascade of abnormal immune, biochemical abnormalities. Too many researchers have been looking at this chemical cascade in my opinion, and not the deeper issues of structure and function of the central nervous system.

Hi Merida - that is interesting. And I struggled for a long time to believe there isn't a structural basis to my many pains. I seem to be a little unusual as an FM person in that I have

Yes, the link works. However, my crps resulted from crushed bones in one foot from a car accident. I don't have back pain. This is a very interesting article, tho', and exciting to know some chronic pain sufferers are getting a diagnosis and effective relief.

On further consideration I guess lack of thoracic pain doesn't mean there is no damage in the area. Very interesting...

 

[Merida]

The new thoracic issue is just one example of how important spinal/CNS diagnoses could be ( and have been !!) missed. But, geez, a crushed foot is a good reason for regional pain. But did the pain spread elsewhere ? Did fatigue develop as well ?

 

[Seeksassy]

The new thoracic issue is just one example of how important spinal/CNS diagnoses could be ( and have been !!) missed. But, geez, a crushed foot is a good reason for regional pain. But did the pain spread elsewhere ? Did fatigue develop as well ?

The pain from my foot injury involved my foot up my leg to just below my knee. It was just my foot by the time (about a year later) that I woke up with pain in my most of my joints, along with crushing fatigue, hence the fms diagnosis. I was able to return to work about 2 years later, though my life had altered drastically. Things got bad again about 2010 when I was diagnosed with cfs. I think it was about a year ago, maybe a little longer, that I saw the crps research suggesting crps folk are often diagnosed with fm and/or cfs, but it may just (just?!) be a progression of the crps. CRPS was called Reflex Sympathetic Dystrophy when I was diagnosed, a few months after the foot injury in 1996.

 

[Seeksassy]

Seeksassy,
In 2009 neurosurgeon Robert Bray ( former chief of neurosurgery Cedars Sinai - Los Angeles) announced that he has discovered a 'new' structural anomaly called Thoracic Epidural Arteriovenous Malformation. These can occur at other levels in the spine as well. These can cause severe pain in regional areas, but also contribute to progressive spinal cord problems. ( ie myelopathy). Please read about this. It can not be diagnosed by regular MRI. Dr. bray uses a microsurgical technique to correct these.

It seems that no (?) crps/ FM/ CFS people have had studies to look for abnormal blood flow in the neck or in other areas of the spinal cord. Would be great to get some good research in this area. Once the neural tissue is being impacted or damaged ( due to virus/ blood flow, etc.) there is a cascade of abnormal immune, biochemical abnormalities. Too many researchers have been looking at this chemical cascade in my opinion, and not the deeper issues of structure and function of the central nervous system.

Hmm, abnormal blood flow in the neck - sounds like the so-called cure for MS that has had received so much attention the last few years.

 

[Merida]

Thank you for sharing Seeksassy. All of these individual reports are important to our attempts to understand what may be the common denominator for many of us.

i was thinking - Did this devastating foot injury changed your gait and how you walk ?? For me, the change in gait was dramatic after a chiropractor twisted and pushed my pelvis and sacrum. The pelvis and sacrum are the foundation of the musculoskeletal and central nervous system. Then, this instability took my neck out - all of a sudden - and I developed all the symptoms.

 

[Snookum96]

I am more recently sick. I started with fatigue, OI, heart palpitations and skin problems in late 2013. I don't remember having a virus or being sick. I didn't think much of it at the time, although I do remember that's about the time I started sitting down on the floor in the grocery store. I managed. I was off work for depression so I didn't have to do much. The summer previous I had gone to Cleveland to see a specialist who told me that antidepressants had about a 5% chance doc working for me given my history of relapses. So I got a referral to The Centre for Addiction and Mental Health in Toronto and finally got in late winter after an 8 month wait. They were doing a clinical trial, one of only a handful in the world, of a new treatment called Magnetic Seizure Therapy. It is similar to ECT but it was supposed to be safer with less cognitive and particularly memory side effects. It sounds like a severe treatment but I wasn't at my worst by far. I just knew it was my only chance to be back to being me. They gave me a general anaesthetic and induced a seizure 22 times last year. And it worked. My mental state is better than it has been in years, BUT...
Immediately after the first treatment I started noticing a lot of weird symptoms including trouble swallowing, early satiety, feeling drugged, sore and painful muscles and joints, gynaecology issues and more. I reported everything and they told me it was not related. I quit 2 treatments short of finishing the trial after an ER visit had doctors investigating me for MS?
So mind started gradually, and then hit with a big punch.

 

[Shannon]

Long story short (at least this part), my father was an abusive alcoholic. My mother commuted to another city 1 hour away for work and often stayed over at her sister's. So I was the next best person to start fights with. I was the Mediator for many years - a short childhood indeed. I went to see a psychiatrist, but my father would not participate. He felt he didn't need to. I was on anti-depressants, but when I left home as soon as I graduated from high school, they weren't necessary anymore. I had to get out or go crazy. I felt I had abandoned my younger brother, but I had to go, so I did.

In the early 90's I was working and skiing in Jasper, AB for several years when I suffered whiplash from stopping too suddenly on a fairly difficult run. Luckily my BF at the time was a "lifty" who worked on Marmot Basin ski hill. I was carted off the mountain in one of those sleds. In 1996 I was t-bone by a truck much, much larger than mine. That was my 2nd whiplash. In my late 20s I started taking Tylenol 1 (OTC) quite often, or Mersyndol (OTC - acetaminophen 325 mg, codeine phosphate 8 mg and doxylamine succinate 5 mg) so I could sleep. I played a lot of sports in winter and summer. I figured the pain I had was due to playing hard and never really worried about it.

When I moved to Toronto (2001), I experienced a lot of panic attacks, anxiety and was even agoraphobic for a while. Diagnosed with depression and have been on some kind of anti-depressant for most of my adult life now. I guess the move to such a major city, with all of it's culture, was a bit of a shock. By 2004 I was able to cope better and returned to work.

I saw a chiropractor as often as I could and found much relief from the low grade chronic pain I had. I found out I had a mild scoliosis at that time. I'm sure the scoliosis plus 2 whiplashes contributed to my low grade chronic pain at this time in my life. Again I thought nothing of it and took OTC medication to cope.

In 2006, my mother passed away. We were very close and there went my confidant and best friend. Though my significant other (who I moved to Toronto for) was my Rock and care giver during the bad pain days. He kept me sane, bless his heart.

In 2008 I took on a wonderful job that I thoroughly loved. But it was quite high stress and fast paced. Eventually I had to give it up due to health reasons. I had swollen glands in my armpit that gave me a real scare. Mostly it was extreme fatigue. I just couldn't keep up and I regret having to leave that job every day. Yeah, I loved it that much.

By 2010 I was working in a call center (had to work to pay the bills) for Bell Internet billing. I was promoted and doing pretty well with this new job. I had lost 60 lbs over that past year when I started experiencing strange chest pains. It turned out to be severe costochondritis and remains my #1 pain area. It has not subsided or gone away. After that diagnosis and without any pain relief, I went to my GP and got some referrals to investigate. I saw a rheumatologist who diagnosed fibromyalgia.

I knew I hurt, but it was a revelation of pain when that rheumy touched the typical tender points. Every single one hurt. Hurt enough for me to cry out. I was quite surprised that I hurt far worse than I thought I did. I could not imagine not having pain medication at that time. Yet that rheumy recommended his injections over medication instead. And why not? He charged $60 per session. Now I live in fear of being jostled or touched.

I am pretty sure my mother's death was the initial trigger. Then the stress of the new job, promotion and lost weight (being GOOD things, go figure?) tripped me right over my ability to cope. Stress is the trigger no matter how you get there.

Right now my pain is fairly well managed. I am on Lyrica and Cymbalta plus Nucynta CR and Nucynta IR for breakthrough pain. Fatigue is pretty rough, I sleep a lot and rarely leave the house anymore. My quality of life is pretty gutted. You can read more about my journey here.

LivingwithFibromyalgia.ca

 

[Merida]

Gee, these individual stories are important. I keep coming back to the scoliosis ( even a mild case). I still think this is a foundational issue capable of putting torque in the cervical, thoracic, and/or lumbar vertebrae - and offsetting the pelvis and atlas/axis relationship. Once this happens, CSF pressures and possibly blood flow to the CNS is altered.

The stress thing is interesting. I had a terrible stress in 1992 when my 14 year old daughter was nearly killed in a car accident - very severe injuries. Her best friend's parents were both killed. Just terrible. I did not get sick or have anxiety/panic attacks.

However, since the pelvis and neck injury in 1998 ( on top of some scoliosis) I can not tolerate any stress, and have an uncomfortable level of anxiety.

Diana Driscoll's information on elevated intracranial pressure seemed critically inmportant. High ( or low) intracranial pressure changes how the brain and CNS responds to the environment. There is research on that.

I am going to try Diamox and see what happens.

 

[Seeksassy]

Long story short (at least this part), my father was an abusive alcoholic. My mother commuted to another city 1 hour away for work and often stayed over at her sister's. So I was the next best person to start fights with. I was the Mediator for many years - a short childhood indeed. I went to see a psychiatrist, but my father would not participate. He felt he didn't need to. I was on anti-depressants, but when I left home as soon as I graduated from high school, they weren't necessary anymore. I had to get out or go crazy. I felt I had abandoned my younger brother, but I had to go, so I did.

In the early 90's I was working and skiing in Jasper, AB for several years when I suffered whiplash from stopping too suddenly on a fairly difficult run. Luckily my BF at the time was a "lifty" who worked on Marmot Basin ski hill. I was carted off the mountain in one of those sleds. In 1996 I was t-bone by a truck much, much larger than mine. That was my 2nd whiplash. In my late 20s I started taking Tylenol 1 (OTC) quite often, or Mersyndol (OTC - acetaminophen 325 mg, codeine phosphate 8 mg and doxylamine succinate 5 mg) so I could sleep. I played a lot of sports in winter and summer. I figured the pain I had was due to playing hard and never really worried about it.

When I moved to Toronto (2001), I experienced a lot of panic attacks, anxiety and was even agoraphobic for a while. Diagnosed with depression and have been on some kind of anti-depressant for most of my adult life now. I guess the move to such a major city, with all of it's culture, was a bit of a shock. By 2004 I was able to cope better and returned to work.

I saw a chiropractor as often as I could and found much relief from the low grade chronic pain I had. I found out I had a mild scoliosis at that time. I'm sure the scoliosis plus 2 whiplashes contributed to my low grade chronic pain at this time in my life. Again I thought nothing of it and took OTC medication to cope.

In 2006, my mother passed away. We were very close and there went my confidant and best friend. Though my significant other (who I moved to Toronto for) was my Rock and care giver during the bad pain days. He kept me sane, bless his heart.

In 2008 I took on a wonderful job that I thoroughly loved. But it was quite high stress and fast paced. Eventually I had to give it up due to health reasons. I had swollen glands in my armpit that gave me a real scare. Mostly it was extreme fatigue. I just couldn't keep up and I regret having to leave that job every day. Yeah, I loved it that much.

By 2010 I was working in a call center (had to work to pay the bills) for Bell Internet billing. I was promoted and doing pretty well with this new job. I had lost 60 lbs over that past year when I started experiencing strange chest pains. It turned out to be severe costochondritis and remains my #1 pain area. It has not subsided or gone away. After that diagnosis and without any pain relief, I went to my GP and got some referrals to investigate. I saw a rheumatologist who diagnosed fibromyalgia.

I knew I hurt, but it was a revelation of pain when that rheumy touched the typical tender points. Every single one hurt. Hurt enough for me to cry out. I was quite surprised that I hurt far worse than I thought I did. I could not imagine not having pain medication at that time. Yet that rheumy recommended his injections over medication instead. And why not? He charged $60 per session. Now I live in fear of being jostled or touched.

I am pretty sure my mother's death was the initial trigger. Then the stress of the new job, promotion and lost weight (being GOOD things, go figure?) tripped me right over my ability to cope. Stress is the trigger no matter how you get there.

Right now my pain is fairly well managed. I am on Lyrica and Cymbalta plus Nucynta CR and Nucynta IR for breakthrough pain. Fatigue is pretty rough, I sleep a lot and rarely leave the house anymore. My quality of life is pretty gutted. You can read more about my journey here.

LivingwithFibromyalgia.ca

Hey Shannon! Are you originally an Alberta gal?