If Physical Injury Does Not Trigger Fibromyalgia What Does?

[Susan S.]

I know exactly when my ME/CFS and FM started. I had finished a very stressful part of my life where I was taking care of my disabled husband, finishing graduate school, and homeschooling my teens. I worked full time for about a year and then came down with a bronchitis/pneumonia type infection. It took me three rounds of three different antibiotics to get rid of the cough and when it was done, my energy never returned. I eventually was diagnosed with the ME/CFS and FM along with hypothyroid, a candida gut infection, EBV, HHV-6, and m. pneumoniae (all recent infections), sleep apnea and hypopnea. A neuropsych exam showed that while my IQ was intact, my processing speed had dropped to borderline (60%-ile reduction) - hence my fibro fog.

It could be that I was run down and the first big infection I got was enough to cause the conditions, but intuitively I feel that it was the stress of my husband's illness and slow improvement, accumulated over the decade previous to my becoming ill, that contributed the most.

I know that I spent about three years of not moving off the recliner before I even felt that I could try to increase my activity. Another three years thereafter of light movement, chair yoga, and walking, pacing carefully to prevent relapses got me to somewhat functional (from a 2 or 3 to a 5 or so). I've learned to stop being an overachiever and to reduce stress as soon as I see it coming. I've been able to use nutrition to get rid of most of my cognitive issues and FM pain at this point, but still deal with the fatigue and will relapse a bad day or days of inability to move much at all if I don't continue to pace carefully.

Does the fact that nutritional supplement has helped more than almost anything else mean I was malnourished prior to becoming ill? Or possibly, did the candida infection keep me from being able to take in nutrients even though I was eating well? I'm not sure. Possibly the combination of stress reduction, light movement, and fixing the other issues allowed my body to be ready to assimilate the nutrition when it was provided. Just as it seems like a "perfect storm" of stress, infection, and overactivity may have been the cause; setting up the right conditions of destressing, allowing my body rest, and nutrition geared toward nerve and brain health at the right time may have helped me make progress in both cognition and FM pain. Now, if I could find something to help with fatigue, I'd be all set.

 

[AliceE]

This is also helpful! I definitely see a pattern. What we really need is a second random selection of people who have never had any fibro or CFS symptoms in their lives and ask them the same question. My point being - can't most people find traumas like this in their lives if they look hard enough? Are we specifically looking back and pinpointing our own because we need to have a reason for why we because ill? Sometimes (in my own case) I think yes and sometimes no.

As briefly as possible: I've always had a sore spot to the left of my spine at the top - either on the deltoid or the rhomboid. As far back as 20 yrs ago this spot would play up when I'd worked out too hard or had too much to drink or not slept enough (chronic insomniac like some others - weirdly am now experiencing hypersomnia) This spot is where I start hurting in the EVENING. It's not the same pain that I get in the morning.

What I consider to be my real 'fibro' happens in the MORNING, when I wake up in complete body pain. Soles of feet especially, and the muscle in my eye-balls. Fingers, arms, shoulders legs, everywhere. I can't walk for about 30-40 mins. I need tea, my meds and supplements. Then I can have a shower. Then I start to walk on the treadmill, and I can usually do a couple of things in the day. (Sometimes I wake up and realize it's just not going to happen + the day is a write-off. About once a week.)

My 'traumas' reflect several of the things previous commenters have mentioned.
- Shingles at 26.
- Sudden death of mother at 28
- Father re-married a woman who didn't like me and gradually persuaded him that I was a monster.
- I married a man who was (and is) wonderful, but whose mother LOATHES me - so for years I had two separate people nagging the two most important people in my life to try to get them to get rid of me! The things they said were untrue and unkind and the fear was constant.
- Discovered I would need IVF to have kids. Managed two, but had what amounts to about 2 solid years of MASSIVE hormone injections.
- Fibro began 6 yrs ago after baby number one, but I was still able to lead a semi normal life. I didn't know it was fibro - did some tests for RA and MS and lupus etc - they were negative so I just battled though.
- Three years ago MIL comes to visit. I say the wrong thing, causing her to run around my house screaming and crying with my father in tow becoming angry also, shouting things like "We've had enough of THAT WOMAN!" to my husband. Three days later I came down with what I thought was flu and was in bed for 4 solid weeks. Since then I've been in chronic severe pain and exhaustion which just won't go away.

It seems that somebody else has experienced everything I've mentioned. Shingles, hormones, abuse and antagonism, sudden loss. My current belief is that I had some kind of predisposition, (shingles virus?) and that the other things just built and built until the MIL's meltdown just pushed me over the edge. But what exactly did it do to my body? And why can't I repair it?? (I know - if could answer THAT...)

 

[Merida]

I was 12 years old, super fit, active, ideal body weight for my age and height, when a simple slip and fall resulted in a fracture to L5 (lowest bone in your spinal column for those unfamiliar with it). I walked away from the accident, never went to the hospital as the nearest one was 2 hours away and an hour of that was on a river with portages. By the end of that summer, perhaps 3 or 4 weeks later I was having horrible pains in my lower back, pain that stopped me in my tracks. I couldn't run, had to sit a lot, couldn't ride my bike, couldn't jump, nothing at all that might cause vibration or bending from the waist. It took a while for a doctor to order an xray and by then it had been too long and nothing else could be done but was cautioned that there was a good chance arthritis would one day develop. I spent the next 25 years trying to find help with the lower body pain. Most docs brushed it off as the injury. Desperate, I went to see a surgeon, looking for anything to relieve it. He took the time to carefully examine me, did all the right tests, but there was nothing anatomically wrong other than some irregular bone growth from the remodeling of the break and it shouldn't have been causing the pain that I was experiencing. I suffered for years, had regular cortizone injections around it that didn't do much and it didn't last long. It wasn't until my regular GP diagnosed fibro (after 4 years with sudden onset CFS) and put Nabilone into my hands did I experience any relief, it was nearly instantaneous and it was magical. If my break didn't trigger my fibro then it's one heck of a coincidence. My fibro flares still focus in my lower back, hips and legs, and not in a pattern typical to spinal injury or nerve compression. Why no one picked up on that is beyond me.

Angie, I am wondering if more than the L-5 fracture contributed to you pain and disability. Do you know about sacral injury and sacrum dysfunction? It can not be diagnosed by radiographic techniques. The sacrum provides the support for the spinal column and upper body. As well it distributes forces coming from the lower body during movement. This is what started my whole problem - and chronic pain/ neck instability. I have a lot on this, but will stop here.

 

[Angie]

Angie, I am wondering if more than the L-5 fracture contributed to you pain and disability. Do you know about sacral injury and sacrum dysfunction? It can not be diagnosed by radiographic techniques. The sacrum provides the support for the spinal column and upper body. As well it distributes forces coming from the lower body during movement. This is what started my whole problem - and chronic pain/ neck instability. I have a lot on this, but will stop here.

This is the first I've heard of it. Would this type of injury also lead migraines that started in my teens and a sudden drop in my grades along with a super need to rest and nap in the middle of high school? LOL doctors tried to pass it off as growing (the need to sleep) but failed to account for the fact that I only grew a half inch between the ages of 12 and 18. The first migraine came the summer I was 16 and it all went downhill from there.

 

[glori h]

Undoubtably the onset was due to long-term stress, parental loss, failing economy, followed by an onset of recurring bouts of Epstein Barr and then compound joint fracture and meniscus tear was the topping on the cake, the FM syndrome followed suit shortly thereafter.

 

[MoJo]

That's a though ride @MoJo :\
Do you think you're in the wheelchair because of GET?

I'm no expert (I don't even know if I should be saying this but just so you keep that in mind and/or take a look at it) but I would guess you're a good candidate for Rituximab.

I think there's a very likely chance that the GET had a great deal to do with having to be in a wheelchair! I was already very sick and in a lot of pain before GET- I believe the added strain on my body pushed it over the edge and I've never been well since. 60 years is a long time to be tired and in pain! I also have had other auto immune diseases. I had surgery for Carpel Tunnel Syndrome, a Hysterectomy at 32 and have been Hypothyroid for many years. There could also be a genetic link. My Paternal Grandmother fell ill after she had my Father. They were poor and lived in very overcrowded conditions. Granny wasn't able to leave the house and her daughters did all the housework and washing. One of her daughters died young. She too had a Fatigue based illness. Then me and one of my cousins [my Father's sister's son] has two daughters with Fibromyalgia. I have no contact with the rest of the family so no idea if there are any more who suffer from Fatigue Based illnesses

 

[MoJo]

Because of the overwhelming numbers of suffer's (not enough trauma victims) and the predominant association with ibs I can't help but wondering if there might be a connection with oral sex CFS, & IBS related conditions like crohns disease, & sbio. I always associated my CFS which came on in a matter of months with occupational exposure to chemicals and pesticides. But try not to get too fixated on the exclusivity of this one theory. I also had a really bad problem with mold in my house but lived with it for 14 years before onset. Also had 3 hour surgery on my hip 7 years before I came down with CFS. When I came down with it I was under highly stressful work situation. Owned my own lawn business and was working roughly 60 hour weeks. Did a little bit of welding and painting of old cars. Practically bathed in solvents between my hobbies and working on lawn equipment.

I also had exposure to Chemicals with living next to a major Steel Plant in the UK. I started having severe migraines aged 8 and continued until I went to live on the West Coast when I was 53. It took 2 years for my body to get rid of the toxins. We stayed there for 7 years before returning to the Midlands- but well away from Industry and major roads. Chemical sensitivity played a large part of my illness throughout my life- before I discovered that's what it was causing the migraines.

 

[Robert Christ]

I also had exposure to Chemicals with living next to a major Steel Plant in the UK. I started having severe migraines aged 8 and continued until I went to live on the West Coast when I was 53. It took 2 years for my body to get rid of the toxins. We stayed there for 7 years before returning to the Midlands- but well away from Industry and major roads. Chemical sensitivity played a large part of my illness throughout my life- before I discovered that's what it was causing the migraines.

My "chemical sensitivity" (sensitivity to certain odors) seemed for the most part to go away when I stopped eating gluten. Along with severe bloating, death naps after lunch and feeling like I had been poisoned. One thing I have learned from this illness is how easy it is to fool yourself as to what is driving it. And what things have helped to alleviate it. Why they double and triple blind studies. Still have many issues with fatigue, fibro flue type symptoms, brain fog, especially after meals. And anger that the medical community has dismissed our suffering all these years. And based their dismissal on the pseudo science that we ALL have a bad attitude and can will ourselves to get better through determination and positive thinking .

 

[Merida]

This is the first I've heard of it. Would this type of injury also lead migraines that started in my teens and a sudden drop in my grades along with a super need to rest and nap in the middle of high school? LOL doctors tried to pass it off as growing (the need to sleep) but failed to account for the fact that I only grew a half inch between the ages of 12 and 18. The first migraine came the summer I was 16 and it all went downhill from there.

Angie, sorry this reply took so long. I am having severe fatigue, and not writing as much. The spinal column with the internal 'dural tube ' ( ie the spinal cord, brain, spinal fluid, branching nerves) really needs to be looked at as one, interconnected system. Problems at one end cause problems through out the system. Several months ago Cort discussed important new research by Roberto Mantia et al . "- Shortness of the filum terminale represents an anatomical feature in fibromyalgia: a nuclear reasonance and clinical study. " The filum Is the non-nerve tissue that attaches the end of the spinal cord ( at about L-1 or L-2) to the inside of the sacrum. The filum actually fuses with the lining of the whole central nervous system at about s-2 - inside the sacrum. This non-nerve tissue then attaches to the tailbone. The whole system is designed to keep the spinal cord from twisting and kinking during normal movements.

However, since the advent of MRI it is appreciated that some people do not have normal structure. The filum can be too short, or not elastic enough. There can be fatty deposits in the filum. The filum can be fused off the midline - occurring in maybe 10% of people. ( research by Hansasuta, Tubbs, Oakes - Univ. of Alabama. Neurosurgeons) Abnormalities may be more common in people with scoliosis. Yes, I have scoliosis and have been dx with tethered cord syndrome by a neurosurgeon. I did not have major problems until I had a sacral injury.

Experts in this area appreciate that too much tension on the lower spinal cord ( from an abnormal filum as mentioned) can put tension on the whole spinal cord and may even be responsible for some cases of Chiari. So, yes, it is possible for sacral dysfunction ( which either results from abnormalities of filum attachment etc. or direct injury) to put tension all the way up to the neck and lower brain.

Also, it is appreciated by the great craniosacral practitioners that the pelvic bones reciprocate with the cranial bones. The sacrum reciprocates with the occiput bone at the base of the skull. So when the sacrum is the occiput is off. I have experienced this kind of thing and appreciate that it is a correct understanding.

So, this becomes very complex, and all the answers are not in. But you might want to read on these topics. I suspect that these kind of structural issues affect the tension on the dura/ meningeal system and alter the blood brain barrier, allowing easier access of various viruses to the CNS.

 

[Merida]

This is also helpful! I definitely see a pattern. What we really need is a second random selection of people who have never had any fibro or CFS symptoms in their lives and ask them the same question. My point being - can't most people find traumas like this in their lives if they look hard enough? Are we specifically looking back and pinpointing our own because we need to have a reason for why we because ill? Sometimes (in my own case) I think yes and sometimes no.

As briefly as possible: I've always had a sore spot to the left of my spine at the top - either on the deltoid or the rhomboid. As far back as 20 yrs ago this spot would play up when I'd worked out too hard or had too much to drink or not slept enough (chronic insomniac like some others - weirdly am now experiencing hypersomnia) This spot is where I start hurting in the EVENING. It's not the same pain that I get in the morning.

What I consider to be my real 'fibro' happens in the MORNING, when I wake up in complete body pain. Soles of feet especially, and the muscle in my eye-balls. Fingers, arms, shoulders legs, everywhere. I can't walk for about 30-40 mins. I need tea, my meds and supplements. Then I can have a shower. Then I start to walk on the treadmill, and I can usually do a couple of things in the day. (Sometimes I wake up and realize it's just not going to happen + the day is a write-off. About once a week.)

My 'traumas' reflect several of the things previous commenters have mentioned.
- Shingles at 26.
- Sudden death of mother at 28
- Father re-married a woman who didn't like me and gradually persuaded him that I was a monster.
- I married a man who was (and is) wonderful, but whose mother LOATHES me - so for years I had two separate people nagging the two most important people in my life to try to get them to get rid of me! The things they said were untrue and unkind and the fear was constant.
- Discovered I would need IVF to have kids. Managed two, but had what amounts to about 2 solid years of MASSIVE hormone injections.
- Fibro began 6 yrs ago after baby number one, but I was still able to lead a semi normal life. I didn't know it was fibro - did some tests for RA and MS and lupus etc - they were negative so I just battled though.
- Three years ago MIL comes to visit. I say the wrong thing, causing her to run around my house screaming and crying with my father in tow becoming angry also, shouting things like "We've had enough of THAT WOMAN!" to my husband. Three days later I came down with what I thought was flu and was in bed for 4 solid weeks. Since then I've been in chronic severe pain and exhaustion which just won't go away.

It seems that somebody else has experienced everything I've mentioned. Shingles, hormones, abuse and antagonism, sudden loss. My current belief is that I had some kind of predisposition, (shingles virus?) and that the other things just built and built until the MIL's meltdown just pushed me over the edge. But what exactly did it do to my body? And why can't I repair it?? (I know - if could answer THAT...)

You might want to check out a few things: John Barnes and myofacial release and John Sarno, MD - the Mind Body Connection. John Barnes maintains that emotional memory can be 'stored' in the soft tissues. Healing can not occur until the emotional trauma is released - with body work. John Sarno ( a prof at Columbia - if I am remembering correctly) says something similar. He wrote : Healing Back Pain, the Divided Mind and more. You can listen to some of his discussions on You Tube. But he thinks that education on this mind- body issue can be enough to provoke healing. Otherwise, he says it takes some especially trained psychologists.

In support group ( I led it 13 years) we did the whole Sarno DVD program after a middle aged man came to group and said that he got well after reading John Sarno's books. One young woman got completely well. She had disabled student status - had been quite ill.

So, I have done all of this, despite the fact that my symptoms had a clear injury beginning. Am I well - no. A friend developed a pain syndrome following the death of his daughter. Low dose naltrexone helped him. So, does severe stress somehow change our opiate-receptor system? It is interesting that how we perceive stress is very individual. Forty years ago my husband and I travelled all over third world countries - no stress. Now, just going to the store is stressful.

It is now appreciated that infectious organisms can change perception. Mice infected with toxoplasma are actually attracted to cat urine. So, they are more likely to be eaten and pass the toxoplasma organisms to cats, where sexual reproduction can occur. Also, research by Flegr et al has shown that RHD negative people have more neuro issues with toxoplasma than RH D positive folks.

So, things are strange and complex. Still working hard on this -17 years. No real answers, except I believe scoliosis is either a risk factor or an indication that something important is going on.

 

[Merida]

I think there's a very likely chance that the GET had a great deal to do with having to be in a wheelchair! I was already very sick and in a lot of pain before GET- I believe the added strain on my body pushed it over the edge and I've never been well since. 60 years is a long time to be tired and in pain! I also have had other auto immune diseases. I had surgery for Carpel Tunnel Syndrome, a Hysterectomy at 32 and have been Hypothyroid for many years. There could also be a genetic link. My Paternal Grandmother fell ill after she had my Father. They were poor and lived in very overcrowded conditions. Granny wasn't able to leave the house and her daughters did all the housework and washing. One of her daughters died young. She too had a Fatigue based illness. Then me and one of my cousins [my Father's sister's son] has two daughters with Fibromyalgia. I have no contact with the rest of the family so no idea if there are any more who suffer from Fatigue Based illnesses

Mojo,
Yes, I have numerous cases in my maternal line. And this is the Mansfield line - From northern England/ Scotland originally. There are other health issues, too : asthma, scoliosis ( some severe), structural heart issues, Down's syndrome, a crib death, intestinal malrotation, fatigue, and more.

 

[fibroite]

I was pretty healthy most of my life but I was not prepared for how much my life would deteriorate after having bladder surgery! This was & still is a major factor as I am still suffering & the damage even with a second surgery was irreversible! The only factors were my husband suffered some time of mental breakdown & quit working I had a demanding job which I loved but was working too many hours & recent death's of 2 very beloved family members. The last was I tripped & smashed my head into the door leading to our garage. Plus I had no idea what fibromyalgia was nor did anyone in my area! I truly believe that if I had not been led astray by snake oil salesman & had some type of info or actual knowledge I might have saved some of the trauma & the ridiculous expense. Plus my family treated me horribly. That was extremely painful & since I always believed in taking care of family I couldn't understand the cruelty. The isolation was terrible I've always been a social person & most of all the fact that "you don't look sick", you want to take those drugs! I can laugh at some of the insanity but it's still the same as to what people choose to believe & what is the actual truth. I'm focusing on me at this point & staying possible which is very helpful but some times people what to knock you down & that is the harder than physical pain

 

[alphab3111]

I have been going for physiotherapy for fibromyalgia and old ankle injury (suffered from severe ankle pain and strain due to the awkward landings and stretching of muscles). The terrible sprain made me see stars, it was so agonizing, and the therapist, I had at the time, didn't do anything for it. Later I had consulted a physiotherapy clinic in Toronto ( http://www.physiomobility.com/fibromyalgia.html ) for better treatment. I think physiotherapy is a better option for fibromyalgia pain.

 

[Justarose123]

Watch those ankles CMT is a link to my deasease now. It's Neuro, inherited 1-2500 people gets worse in each coming decade or comes out of the blue, affects ankles, lower legs, hands, arms first then pain is felt upper limbs, I am kinda anxious for the fibromyalgia test and for confirmation of genetic testing for CMT to match diagnosis, because all the symtoms of CMT natch fibromyalgia/Me and both seem to have hormone issues, I have hypopituary desease? Mystery of my desease is what to really call it? Or is it all?

 

[fibroite]

While doing my pain fellowship I noticed that medical field has largely confused two different pain syndromes: fibromyalgia and myofascial pain syndrome. Myofascial pain syndrome is associated with trauma and injury and I think this is where the notion that trauma causes fibromyalgia comes from. Myofascial pain syndrome occurs when a person develops painful "trigger points" in muscles that are injured or that are near an area of injury. Trigger point pain is often referred to areas distant from the trigger points (hence "trigger"), so can appear to be widespread pain. Nevertheless, with a good examination, the practitioner can find discrete sources of the pain that can be treated (with trigger point injections, massage, stretching, better ergonomics, etc).

Fibromyalgia, on the other hand, is true widespread pain: not limited to one limb, or to just the legs, or the neck, for example. The "tender points" of the old fibromyalgia definition are not trigger points. Pressure on trigger points hurts, but doesn't radiate or refer to distant sites. Tender points also are not treatable with injections or massage.

Of course, these different syndromes can and often do, coexist. My fibromyalgia is frequently overlaid with areas of myofascial pain. I would even say that fibromyalgia predisposes one to myofascial pain. Fortunately, treatment of the myofascial pain areas decreases my overall pain levels. For me, this treatment consists mostly of frequent Thai massage. I also use Voltaren gel, heat, pressure and ultrasound on painful muscles. For fibromyalgia pain, I use pain medication. I've noted that the pain medication (opioids) doesn't help much with myofascial pain. NSAIDs do, but I can no longer use them (except topically) as chronic NSAID use has scarred up my small intestine.

I have been seeing a physical therapist & now a massage therapist who both specialize in the Dr John Barnes treatment of Myofacial pain release. This therapy is focused on the mind body connection & was recommended by the urologist at University of California, San Francisco who I was fortunate to get a referral to see her. This was after I had seen the 4 male urologist's in my medical group which I'm not sure I can post the trauma I experienced with 2 of them, the fact that I was terrified to go to any appointments & felt because I dared to ask a question I was blacklisted. #4 treated me nice but no results. The problem is that my on SSDI & have a Medicare advantage plan which does not cover alternative treatments with the exception of aquatic therapy which I highly recommend. Most of my physical trauma relates to the initial bladder surgery & thousands or hundreds of thousands of women are suffering from a surgery done with products later recalled by the FDA. I had to have a 2nd surgery within a year of the first one which cleared up the raging infection I had due to an allergic reaction but the damage was already done. Me being the typical I need to get back to work so I just want to feel better paid the extra expenses on surgery #2 & accepted there was nothing I could to, at least I thought I had! It wasn't until years later that I friend told me about the commercial being show on TV that I found out about the letter the FDA had sent & I was very upset that I was never notified. I truly truly believe that this physical and mental trauma was the start of FMS & it was escalated later from the deaths of very close loved ones & my husbands mental problems.
I have made dramatic progress as far as sleeping almost every night which had not happened in 10 years. I'm determined not to take pain meds & lyrica was the worst drug I've ever took. I'm taking a very low dose of an ER pain med & nothing else. I'm tired of the stigmatism, I go to a pain clinic & which does random drug tests. I never pharmacy shopped or taken a larger dose yet when the first FDA crack down started a couple of years ago I could not get my Rx filled! Plus at the same time my generics meds were moved into the brand name tier or taken off the formulary. So $6 co pay went to $45 for a generic med, then a deductible was added to that same tier so co pay was $167 for a generic med! How is this fair? How can they keep saying use generics save money? Why are the pharmacists now over riding Dr's who I have been a patient of for over 10 + years. There has to be some way that the dirty Dr's pharmacies can be controlled instead of assuming pain med automatically = addiction. I will continue the MFRT therapy as long as I can afford it which in the long run might be cheaper than generic meds