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

[Kimberly Bachmann]

I am coming late to this party but am doing research for my daughter (17.) She has spina bifida (which comes with tethered cord and chiari issues.) She had a tethered cord release in 2013 and after, began have joint and muscle pain. Some have suggested fibromyalgia (she does have some markers) but others say it isn't possible. Since that time, she has had two more TC releases and the pain subsides for a few months but then begins to come back. I am trying to figure out if the "fibro-like" pain is a precursor to TC or if the shock to her cord from the original surgery causes the fibro and she will just have it forever. Also, she got put on lexapro for depression (3 surgeries in your teens can do that) and that's when the pain increased. Is this a known side effect for folks who already have this issues?

I appreciate any and all advice. Watching my 17 year old live with chronic pain is hell (so I can't IMAGINE what she is going through.)

 

[Merida]

@Kimberly Bachmann
So sorry you and your daughter are on this terribly difficult journey. Remember that fibromyalgia is just a name stuck on a set of symptoms.
And the defining symptom with a number of tender points seems useless. I had 12 tender points in 2001 and only 2 or 3 now.

I led a CFS/FM support group for 13 years, attended Chiari conferences, FM conferences, etc, etc. I was actually diagnosed with tethered cord syndrome by one of the world experts. I did not have surgery. I am aware that retethering of the spinal cord after surgery may be a common
problem.

One thing that affects the tension on my spinal cord is the position ( and function) of my pelvis and sacrum. The expert on sacral/pelvic function seems to Jerry Hesch in Aurora, Colorado - Ph.D. Physical therapist. Don't know if he could help on body mechanics for your daughter, but you could call and ask. Watch his videos on You Tube.

Also, find a TRADITIONAL osteopath and ask their advice. Also, I have found help with very alternative 'healers.' And not the ones who take a weekend course in Reiki or such and put out their shingle. I have sought out the traditional ( Native)medicine men, QiGong masters from China, and more recently, a traditional Philippine healer on the back streets of L.A.
Hugs and Blessings on this journey.

 

[Paw]

Slightly related, more confirmation that jaw and neck disorders are big red flags (whether causal or symptomatic). This study found a whopping 63% of patients with jaw/neck disorders also met FM criteria.

One of my many earlier signs of trouble a couple decades ago was severe TMJ. Now I find it very important to concentrate (e.g., while resting) on jaw/head/neck alignment. The tendency is for everything to drift offline, with EDS-type symptoms (such as the feeling that there's a lack of guidance from connective tissues in the jaw). Whether this tendency is in reaction to other problems or is exacerbating them I don't know, but they sure seem related.

 

[Merida]

@Paw
Exactly! You make such an important point. I had a neck/pelvis injury in 1998, age 49. I had no jaw issues previously - and no CFS/ no FM either! But along with the classic CFS/FM symptoms came jaw problems!!! My jaw rotated, receded, and I developed a jaw tremor.

I spent years trying to understand this, then finally found The amazing research by the osteopaths and sacro-occipital chiropractors which explain this whole problem. It was a great sacro-occipital chiropractor who brought me back from Death's door - really- one year bed ridden with every symptom imaginable. No GI function for 6 weeks. 99 pounds.

Their research explains that there are 3 pumps that circulate spinal fluid: one in the center of the brain where the CSF is created, second at the juncture of the skull (occiput) and neck, third pump at the sacrum. There is a minute rhythmic motion between the occiput and sacrum which circulates spinal fluid. The cranial bones all participate and have specific minute motions.

Distortion of the jaw may be caused by: physical trauma ( forceps delivery,, blow to jaw, whiplash; incorrect orthodontic procedures, loss of teeth; AND pelvic/sacral misalignment/instability.

Once the jaw is distorted the bite plane is changed and the function of the entire cranium ( and CSF flow) is affected. There are muscles that attach the lower jaw to the upper palate and to the sphenoid bone in the skull. The pituitary is housed in a little notch in the sphenoid. So, uneven bite now affects the pituitary. And it only goes downhill from here.

Note also that the abnormal bite also causes a straightening of the neck curve. This is exactly was is reported for fibro people by Researcher Katz at Rush University.

Craniosacral imbalances cause dural tube torque with fluctuating hydrostatic pressures, which then affect the permeability of the blood brain barrier. Wow. ( Chiropractic : The Anatomy and Physiology of Sacro-Occiptal Technique by Jonathan M.P. Howat, DC, DICS, FICS, FCC , 1999)

 

[Merida]

One more jaw comment. I think one of the world experts in jaw dysfunction and using appliances to correct this is Brendan Stack, DDS in Virginia. Watch his videos on You Tube. Amazing. I had a consult there 7 years ago. My jaw discs ( from MRI) have slipped inward. To get them back in place you must undergo a surgery, then wear an appliance.

I spoke with the surgeon who has done this for 25 years. He said that people like me ( with discs slipped inward) tend to have more neurological issues and less pain, while people who have discs slipped forward have more pain and fewer neuro problems. True for me. They felt I could improve by 80 percent with jaw treatment.

But ,also, if the reason why the jaw discs slipped out in the first place wasn't solved, then the discs could slip out again. My pelvis/sacrum is still very unstable and I elected not to go through all of this. Plus, it was a lot of $$$ out of pocket.

 

[Paw]

Amazing stuff, @Merida. Sounds like, while you still have problems, it was a specialized chiropractor who single-handedly brought you back from the brink.

I've known about some of these connections, but not about the possibility of such specific, severe causality.

You remind me that, 25 years ago, the first time I casually mentioned to a doctor that I was having fatigue issues, I wondered if my assortment of weird neck/occiput symptoms were relevant. I asked if I should try a chiropractor, but he gave me antidepressants instead.

So here's a question. Now that I clearly have TMJ with jaw alignment/bite issues, abnormal neck curvature (and grinding at the occiput), pelvic misalignment (according to last year's physical therapist trying to diagnose my hip problems), as well as sweeping neurological problems, I'm wondering what the most efficient next steps might be: osteopath, chiropractor, dentist -- maybe even an acupuncturist? I worry about wasting tons of money on wild goose chases with alternative docs (or conventional docs, for that matter).

Meanwhile, I see Stack has many videos, which I'll peruse later.

 

[Merida]

@Paw
Wow. You fit the whole paradigm. I have tried everything imagineable. Craniosacral and neck mAnipulations really helped, so I am somewhat functional but still with bladder/ bowel issues, ringing in ears, leg pain/ restless leg pain, recent knee/hip pain, sleep issues still, dysautonomia, and crazy fatigue, severe sweating/heat intolerance, exercise intolerance. ( also an episode of porphyria !!!! Immune imbalances, diastolic heart dysfunction, left kidney disease !!! Pelvic floor collapse )

The reason why craniosacral / SacroOccipital did not solve the problem more completely ( I think) is because :
1. They do not understand the pelvic mechanics enough to completely correct the sacral dysfunction. Sacral blocking did not work for me. This sacral dysfunction is very complex. Look at the videos on this sacral stuff by Jerry Hesch, Aurora, Colorado. Another brilliant physical therapist on this is Richard Don Tigny, but he is retired. I think the neck/ occipital dysfunction is often secondary to the pelvic dysfunction , as the pelvis is the foundation of the body.
2. I have underlying structural differences that make correction more complex - mild scoliosis, small lower holes in my sacrum, high- Arched palate ( the sphenoid bone is influenced by the palate function), small posterior fossa, one side of cranium smaller than the other - not really noticeable to untrained eye burn evidenced by my deviated septum. I suspect some glitchy pelvis thing. And also something to do with how the filum terminale ( non nerve tissue that attaches the spinal cord to The sacrum!!!) is constructed. More in later installment. Tired!!!

 

[Merida]

A little more:
Paw, you asked about acupuncture. I have done this for 12 years on/off with an amazing Chinese person who was an orthopedic surgeon in China. Did neck surgeries for 12 years but he didn't like the results. So he reverted to ancient healing - acupuncture and QiGong. He helped certain symptoms, but could never get the pelvis 'right.' He actually stopped my restless leg problems. I asked him if he had a group of patients who were like me - so many symptoms, fatigue,
pain, etc. Yes!! He has 3 Chiari patients. They are like me. Two had surgery. One was doing better and the other was worse.

Traditional osteopaths: Have seen several. Not much help until a more recent one who is doing craniosacral and QiGong, but does not 'admit' to the latter. He really improved my GI function and stabilized the pelvis quite a bit, though my sacrum is still not 'right.' I can feel it drop a bit when a sit , though nothing as dramatic as early years.

So getting help with these body issues may depend on a few exceptional practitioners , regardless of their 'label.' Early after my injury in 1998 ( which was from a chiropractor who vigorously twisted my pelvis and neck!! For right hip pain) I went to a local chiro who was actually able to set my pelvis. I immediately felt Energy, walked vigorously around the block. Then, I felt my sacrum rotate and drop, and it was all gone. He didn't really know how he adjusted the pelvis and could not reset it again.

I know of another person in Colorado who is dx with CFS/ FM whose whole illness started after a chiro kicked her (off the table!) on her sacrum to adjust the pelvis. She eventually found another chiro who adjusted her neck, thoracic, and pelvis in a certain sequence and technique. She got well, and was going 6 months between adjusts, when this chiro died suddenly and left no record of exactly what he had done. She is mostly house bound now - for years.
So, it seems important to approach all body workers with caution. No forceful twisting of any body part.

One more comment : I believe the viral/ infective organism causation of CFS/ME and FM is extremely important. But, it is alterations in the blood brain barrier due to structural issues that opens the door. Immune anomalies may also be related to the structural issues - especially malrotation/ malattachments of the gut which may be part of a bigger genetic syndrome which includes scoliosis, spina bifida / spina bifida occulta, and the other glitchy things I have mentioned. Both me and my daughter have spina bifida occulta ( just a little missing section of L-5) and scoliosis. Son has scoliosis. All mild cases.

This is all so important and so under appreciated.

 

[Paw]

This is all so important and so under appreciated.

I've suspected these areas were problematic for years, but didn't know how deeply involved they could possibly be. I really appreciate your spotlighting them. A lot of these structural symptoms have not seemed extreme enough in me to cause such chronic illness, but perhaps when they are combined just so they set the stage for a downward spiral.

I have nothing against trying various alternative therapies, but, as you point out, finding practitioners who you can fully trust is the biggest gumption trap. The kooks and the egoists aren't just a waste of time and money -- they can do some real harm too. But you're helping me get more serious about doing more research and experimentation. I already have a trustworthy acupuncture recommendation, so maybe I'll start there.

Meanwhile, I do gravity inversion daily with very noticeable effects, but the relief only lasts an hour or two afterward. Plus, just being aware of all the misalignments and malformations is helping me mitigate them a bit with relaxation and posture -- which doesn't help much with the fatigue, but it can help the pain from spiraling out of control.

Restless legs have been a major problem for decades. I've always assumed they were part of the neuropathies, but, you're right, it's very complex and interconnected. My leaky gut (and IBS) may also be more than a mere symptom.

Anyway, lots to explore here. Good luck to you and your family!

 

[Merida]

Thanks for the great comments, Paw. My restless legs, now on/off, are definitely related to neck/sacrum interactions, but don't know how exactly. ( no acupuncture for 2 months) The inversion relief is interesting. Think this must be fluid dynamics at the lower skull/ upper neck. I asked my acupuncturist if acupuncture can adjust structure. yes! Asked my chiro if acupuncture can adjust cranial bones. Yes!

I know structure is important, but the most important aspects may be internal dura meningeal, subtle boney stuff - just don't know. So confused at this point. Just read about patent foramen ovale. Heart problems run with the structural issues in my maternal line. My niece had heart surgery at 3 months.

Don't want to exhaust readers or me, so I will stop here. But extend a Blessing to all - May All that is Good, and Strong, and Beautiful be with us on this strange journey. May we find the truth and be well.

 

[Farmgirl]

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.

• http://www.ncbi.nlm.nih.gov/pubmed/25878985

Oh my, this is interesting!

 

[Merida]

@Farmgirl
Yes!! Cort found that amazing research, and there is more to this complex issue. The great neurosurgeons and experts on tethered cord at the University of Alabama ( team of Tubbs, Oakes, Hansasuta) published that 3 out of 27 normal cadavers had the filum attached off midline. The filum attaches to the end of the spinal cord ( at about L1-L-2) to the inside of the sacral canal at S-2. The filum fuses with the dura there, the continuous lining of the entire CNS!!!

The spinal canal and membranes should be symmetric, but if the base of the spinal cord is attached off the midline ( i.e. off the center line of the sacrum) , what happens???? A torque in the entire neural tube ?? Uneven tension in the pelvis and neck where the dura attaches also???? Problems with spinal fluid flow and pressures???