Fibromyalgia Study Suggests FM Patients Heads Not on Straight...:)

Discussion in 'FIbromyalgia and Pain Research' started by Cort, Apr 18, 2015.

  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Paper suggests some FM patients have short filium terminals. I would not be surprised at all. Rowe has found that neck and spine problems either cause or greatly contribute to some of his adolescent ME/CFS patients.

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  2. Who Me?

    Who Me? Well-Known Member

    Is this anything like Chiari I malformation?
  3. Merida

    Merida Well-Known Member

    Cort, thank you for posting this research. Wow, what a story is behind this short filum terminale and the 'tethered spinal cord syndrome." It started back in about 2003 for me, when I got dx with spina bifida occulta and scoliosis. My daughter has SBO, too. After extensive reading, I realized I had all the symptoms of tethered cord syndrome. Pretty crazy. Dr. Pelligrino actually published my ideas in his book, Fibromyalgia : Up a Close and personal-2005.

    I got dx later that year with tethered cord syndrome by one of the few expert neurosurgeons in the world. Urodynamic studies are essential for this dx. - done with an experienced neurosurgeon- urologist team. Can supply reference. My studies showed " lower motor neuron bladder, consistent with tethered cord" Also, an upper motor neuron component. A second neurosurgeon confirmed the tethered cord syndrome, did CINE MRI studies. I had very abnormal spinal fluid flow in the neck.

    It is ''felt" that the tethered cord can put tension on the whole spinal cord, and even tension on the brain stem - perhaps enough to contribute to Chiari 1 or Chiari 0. It is also thought that tethered cord may be a cause of unexplained scoliosis. So, there are important connections to all these things that need to be explored. But, this is a VERY complex area, and the neurosurgeons don't all agree. And they are concerned about dealing with people dx with CFS/ FM. A tragedy for us all.

    Minx, you have eye issues??? These are commonly reported ad being associated with Chiari, and with vertebral artery syndrome. People could have both problems.
  4. PamJ

    PamJ Active Member

    I had decompression surgery in 2001 for a Chiari 1 malformation, diagnosed by 3 separate neurosurgeons. Unfortunately, it did nothing for my CFS-ME.
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  5. Merida

    Merida Well-Known Member

    Can you share if you ever recovered from the surgery itself. Thank you for posting and sharing.
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  6. PamJ

    PamJ Active Member

    Yes, I recovered from the surgery. After recovering for 5 or 6 weeks, I returned to the same state of health I had been before the surgery. I am still functioning at about 30-40% of normal. I'm 48 now, and this year,
    my depression has gotten worse.
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  7. Merida

    Merida Well-Known Member


    Thank you for sharing again. How discouraging to go through all of that and have no improvement. Depression is so understandable. I have it too - thinking will I ever get well. My injury was at age 49. I am 66 now.

    Somehow we must continue to have hope and try to enjoy something ( even small) in each day.

    I am convinced that we can get well - one way or another. I have been inspired by alternative energy approaches. Very interested in the Medicine men ( shaman) of North American tribes and Qigong. Spirit Talkers by William Lyon ( retired prof. of religion/anthropology) is pretty amazing. It changed my view of what is 'real' and what is possible.

    So, I have tried multiple alternative healing techniques, and quite by accident have ended up with an osteopath who is really a Qigong master. He says my fatigue will be gone by January. I see him every 2-3 weeks, and he takes Medicare. So, no cost to me !! Think he is the real deal. I will know soon. Some positive indications finally after 5 months. It is as if he is redoing the 'software' in my brain ????????

    If I can get 'fixed,' I think anyone could. I was totally bed-ridden for a year - near death. No solid food for 4 months - lived on Ensure. Had 2 seizures, severe myoclonus, unable to swallow, severe apnea, only slept 2-3 hours per nite. Had to lie perfectly still in one position, could not sit at all for 7 months. So, I want anyone reading this to appreciate that if I get well, anyone can.

    Onward !! Be hopeful. Search for Mingtong Gu on YOu Tube. I will get one good link for gathering Qi.
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  8. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    All I can say is that this is an amazing issue. I never dreamed these problems were possibilities until recently. Given my constant head and neck issues I have to wonder...I wish figuring out all this stuff was a heck of a lot easier though :arghh::arghh: (that's smilie for arrgh!)
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  9. Merida

    Merida Well-Known Member

    Thank you for your comment. You have so much experience, and are so respected for all you have accomplished. I am only speculating from experience and reading that at least a group of us have a torque in the dural tube itself, which stresses the blood-brain barrier, alters blood and CSF flow ( including in vertebral arteries), and allows easier access into the CNS of certain pathogens. A double or triple whammy.

    I think this torque may be related to scoliosis or perhaps off-midline fusion of the filum to the dura - in the sacrum about S-2. There is only ONE research article on this off-midline fusion of the filum. They found this issue in 3 out of 27 'normal' cadavers. Published by Hansasuta, Tubbs, Oakes - very famous neurosurgeons at the Univ. of Alabama - experts in tethered cord.

    They also have published that appearance of tethered cord symptoms appears to be related to an abnormal horizontal position of the sacrum. This may be particularly relevant to women who have wider, inherently more unstable pelvises, since the 'tug' of a tight filum may be more likely to shift the sacrum.

    But none of this is necessary to have glitches in the atlas/axis relationship. However glitches in the sacrum/pelvis assure glitches in the neck/ craniocervical junction.

    Thank you for posting the new research article on the shortness of filum terminale. I am so appreciative. I went on to read some information posted by a respected neurosurgeon in Barcelona, Dr. Miguel B. Royo Salvador. Dr. Salvador states : " For more than 30 years, our research explains that there is a downward movement of the spinal cord in Chiari 1 Malformation, due to a a malformation not detected: . . ." He is referring to the tight filum terminale.

    One more point : I did NUCCA chiropractic back about 12 years ago. These special chiros move only the atlas with very gentle hand movements on a special table. First, they take x-rays to determine the angle and position of your unbalanced head due to the tilted atlas. My guy also measured my pelvis. Yep, left side upsliped, left leg shorter by 1/2 inch.

    After he leveled the atlas ( very gentle/very safe) he remeasured my pelvis. The pelvis was now level, and both legs were the same. For at least 15 or 20 minutes !! Ha !!
    So, I came to appreciate this interrelationship between the position of the head and of the pelvis. No doubt. Yes, I improved, but could never hold. Too much else going on. Had to search some more. Whew.
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  10. Merida

    Merida Well-Known Member

    Okay, this is interesting. How to bring in and gather Qi. A simple, easy procedure. Everyone can do it. It might help !!

    One more story : At large FM conference in Los Angeles - about 2002?? Attended talk by Qigong Grandmaster Effie Chow, East West Academy of Healing Arts in San Francisco. About 100 in audience. She demonstrated some amazing things, then asked us to put our hands facing each other - about 5 inches apart. She said she was going to send us energy. Wow, all of sudden a gasp went through the audience. We all felt this strong magnetic like force - like putting together 2 poles of the same magnet . I couldn't believe it. Then, she took it back, nothing.

    Some people said 'group hypnosis.' But I have never been able to be hypnotized - tried.

    Ideas in modern physics may give us ideas on how this is possible. Quantum mechanics is still fairly new, and experiments are suggesting an interplay between matter and consciousness. ( Institute for Noetic Sciences - founded by Dr. Edgar Mitchell, astronaut.) Do not take my word. Read, read, read, as much as possible. This may be the path to getting well ????????
    Lissa likes this.
  11. Lissa

    Lissa Well-Known Member

    Indeed!!! I do passive yoga bodywork, where I get manipulated on a massage table. It is extremely gentle and restorative... Plus she does energy work that is truly amazing.

    Often I walk out of there with completely different posture, and with a calm, relaxed, grounded energy. Yet it never lasts! How to make it stick?! It's like habit and/or weak core muscles collapse each time, within hours. Then each week I get a reset- which is always case by case, working on whatever needs the most help.

    Since the news came out on the lymphatic system being connected to the brain and nervous system, my therapist and I are going to explore some cranial-sacral type of work. She also thinks there is a tie in to working with the sternum. We'll see where that leads.

    I must say that I keep noticing sooooo many people have a backstory with back/neck injuries/issues. Perhaps we are a subset? And do the back/neck problems also coincide with people with relapsing/remitting?! Really curious.
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  12. PamJ

    PamJ Active Member

    Thanks, Meridia.
    Do you mind telling me what started your CFS-ME? Was it an illness, accident, or combination of things?
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  13. Merida

    Merida Well-Known Member

    Mine started within 6 hours of a chiropractic adjustment - first ever at age 49. I had taken a yoga class, over-stretched right hip. Very sore, hip popping sound. Some one in class recommended a chiro - had never been to one.
    He x-rayed and noted my sacrum/pelvis on a slant. He twisted and pulled on my neck and pelvis with great force. Pain in low back/pelvis started about 6 hours later. Couldn't sit at all for 6-7 months. Terrible pain below waist. Lost feeling in legs twice - for 10 minutes or so.
    About 10 days later felt and heard a snap behind my right ear. Then, terrible headache, could not stand up straight, vision was fractured TV screen, terrible facial pain, loss of saliva, loss of bladder/bowel sensations, had terrible body jerking at night. Had terrible apnea, only 2 hrs. sleep at night. Had reflux, couldn't swallow. I was always worse when first lying down.

    I gradually developed the typical tender points, pain all over, incredible allodynia/hyperalgesia. Even a tiny wrinkle n sheet or clothing was painful. Bed ridden for 1 year. Saw rheumatologist - said I was typical for fibromyalgia/chronic fatigue. Yes, I led large support group for 13 years, I fit right in.

    Now, neurosurgeon says I had spinal cord and brain injury. So, how can all of this be linked? Plus, my son ( age 5 - 1985) developed typical FM/CFS/neuro symptoms after a viral illness.
    Realized my Mom had this, too. She had no injury or odd virus. Also, other members on my maternal line had asthma, rheumatoid arthritis, sleep problems, neurological issues.

    I tried to understand the common denominator in my family. I think it may be the scoliosis and structural differences.

    We discussed this in support group and many interesting things came up. People reported :
    much scoliosis, one kidney, polycystic kidneys, very high-arched upper palate, rotated little and index fingers ( one family - 6 fingers !!), feet differences - hammer toes,overlapping toes, high arches, huge bunions, much hiatal hernias, congenital heart issues ( a lot in my family), cervical ribs, hemangiomas in vertebrae/liver, anus close to vagina, double uterus, uterus/bladder in left abdomen ( not centered), long redundant colon, spina bifida occulta, extra vertebrae, and more. Most of these things are harmless - discovered by accident.

    The only syndrome that seemed to fit these multiple structural issues was chromosome 22q 11.2 deletions. (a mild DiGeorge Syndrome?). Worth reading about. I would appreciate comments from others - if they also see these unusual structural issues.
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  14. PamJ

    PamJ Active Member

    I have not researched these issues. But anecdotally, I know of many FM & CFS-ME patients who have problems with neck/spine due to car accidents, arthritis, collapsed discs, etc.
    My 18 year old daughter has Fibro. She got it after 2 bouts with mono, and severe stress. She is improving very slowly, which ismore than I can say for myself.
    I have tried cranial sacral therapy, massage, and acupuncture. Have also tried antivirals, and treatment for POTS. And of course have tried many vitamins/herbs/other. I hope the Qigong helps you!
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  15. Merida

    Merida Well-Known Member

    It is one thing when we have this, but when it affects our children - adult children or little ones - it is especially awful. I have 2 grandkids, and see some little worrisome things in one.

    May your daughter get better and better. My son is 34. He improved a lot during his 20s. Doing well, but, yes, must be careful with stress.

    We just can't give up. There is an answer.
  16. Merida

    Merida Well-Known Member

    This relapsing/remitting question seems interesting and important. I have not really experienced any 'remitting,' though symptoms can worsen if I bend forward, lift something too heavy, try to lie on my back and put legs on the wall.

    Do others experience that certain positions or overstretching can cause a flare ?
  17. Lissa

    Lissa Well-Known Member

    Not to clutter up the airwaves here.... But personally I think of relapsing remitting differently now that I've read so much of the input from others.

    I was diagnosed with CFS after a respiratory flu-like illness in 2010. So I've been "sick" for 5 years, with no relief. So looking at only that snapshot, I thought- geez no.... It doesn't remit, I don't relapse. I never feel even close to normal, so NO.

    BUT.... Looking at the big picture, going back into history, and realizing that just because doctors didn't have answers doesn't mean it wasn't there all along. Going back to the late 80's.... 2 bouts of mono. Early 90's chronic bronchitis, then pneumonia. Always getting colds/flu way longer and way more often than anyone else.

    Introduce multiple back injuries, concussion and whiplash along the way... Then inexplicable exhaustion in the late 90's. Gut issues start. A cascade of food intolerances. Fibroids leading to a hysterectomy in 2002.

    A mystery illness in 2004... Shortness of breath, respiratory infection, chest pains, tachycardia (POTS- undiagnosed), optical migraine, extreme exhaustion: unable to work for 2 months. Slowwwwww recovery.

    Slow recovery - just like every single illness, injury, and surgery in my life. Intense reaction to almost every kind of drug.

    Now I can see a pattern there. Now I can recognize that surely this is a classic case of relapsing remitting. Only now I've totally tanked and haven't been able to come back this time. Operating at @30% now. A good day takes me to 40% and maybe occasionally I'll get an hour or two at 50% for no known reason.

    So I think the reality is that it all started in my teens or early 20's. Which means I've been duking it out to have a life for 20+ years. All along I thought this was just how life goes! As if it were normal to always be so tired and getting sick all the time. Siiiiiigggghhh....... Thanks MDs.... So helpful. NOT.

    In any case, I'm so glad that we can all share stories here and learn from each other! I for one have found this invaluable!!!!! Thanks to Cort for such a high quality forum! :)
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  18. Merida

    Merida Well-Known Member

    Your story is interesting. When I get an upper respiratory infection and am coughing like crazy ( yes, get asthma with it sometimes) it throws my neck out even more. Then I get worse!!! A Dr. Katz ( Rush University) published research that Fibro patients consistently have a 'straight neck' - that is, the normal curve is lacking. The SacroOccipital chiropractors say that an unstable sacrum is what causes the neck curve to straighten. ( I can give exact details on how this happens if anyone is interested in my structural fiasco interpretation this mess.)

    There is published information on how changes in spinal curves and structure influence the immune system. For example: Prof. Valentyn Serdyuk ( orthopedic surgeon for trauma and scoliosis/ also researcher) says in his book : " We observed that impaired functioning of any part of the central or peripheral nervous system, caused by trauma due to the displacement of vertebrae ( at all levels), had a negative effect on the functioning of all internal organs." He feels that the development of disease is a consequence of impairment of the complex system of innervations. He feels that this impairment of nerve transmission lowers the activity of the immune system and consequently decreases the body's resistance to infectious agents.

    Dr. Serdyuk relates asthma, bronchitis, pulmonary problems to abnormal curvature/ vertebral rotation ( resulting in nerve impingement) to these areas: C-7, T-1, T-2, T-3. Also heart problems come from here. He says hormonal disorders come from c-1, C-2. Uterine and menstrual disorders from L-3/L-4.

    The chiros and osteopaths have been researching this stuff for 80 plus years. But, now, finally we have a very respected orthopedic doc ( albeit in the Ukraine!!! Odessa Univ.) saying it. Also, it is much appreciated that spinal injury causes disruption of the immune system - including depression of natural killer cells - in numbers and function. So ....????

    I appreciate what you say about relapsing/ remitting. Yes, in the remitting phase we may be able to go buy a pair of shoes:(
    Trying to get energy to do that now.

    Yes, thanks, again, Cort. Together let's solve this $&:/$!!? ?!@ mystery illness. It is time.
  19. Katherine Autry

    Katherine Autry Active Member

    Lisa, your story sounds a lot like mine. I was sick a long time and I knew something was off but did not get a diagnosis for years. I remember having bronchitis all summer when I was 16. Just could not shake it. Always got sick several times a year after that and stayed sick a long time - lots of otitis media in childhood and adulthood too. First diagnosis was hashimoto's in my early thirties - autoimmune. Along with In situ cancer of the cervix (highest level of dysplasia). And we know that we have a virus to thank for that, as well.......I wish the experts would study that one. Seems like there are striking differences in how that virus affects females versus males - killing women vs giving men warts. That seems significant in view of the fact that so many more women than men are diagnosed with CFS, and because viral infection is almost certain. Could HPV be the added factor that tips the scales for a herpes or enterovirus to trigger CFS?
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  20. Merida

    Merida Well-Known Member

    I also was diagnosed with HPV in my mid thirties. Had laser treatment, and it finally cleared. Again, it seems to be a subgroup of us that are highly affected by certain viruses, while most of the population just clears them without too many long lasting problems.

    This was true for my son at age 5/ 1986. He had lab-documented EBV and had problems for years. His symptoms started with severe urinary frequency 2 weeks after high fever/ severe sore throat, etc. Two of his preschool friends had a mild form of this - again characterized by sudden onset urinary frequency following fever/ sore throat. They were better within one month.

    My grandmother lost 4 of 7 babies/toddlers to measles. So, eventually my thought became, " How are we different from the people who seem to handle common viruses well, without long term consequence?"