Fibromyalgia, Ehlers-danlos Syndrome & Sleep disturbance

[Guest guest]

Hello all. I'm rarely at this group because I have health crises in

all 3 family members including myself, and I'm a full time professor

in Florida.

My 17 yr old daughter has Ehlers-Danlos Syndrome hypermobility type,

with symptoms quite similar to Fibromyalgia (sleep disturbance,

temperature sensitivity, gastro, recurrent mild diseases, muscle

pain, migraines, failure to heal from injuries-- plus joint pain and

occasional dislocations, and vasovagal syncope, (or passing out from

emotion & other causes).

I convened an international research meeting on LDN at Rutgers the

day before the NYAS public LDN meeting last year. But I've still

been unable to get any collaboration in my efforts to conduct

parallel case studies of 6+ fibromyalgia patients (with hypermobility

history) and 6+ EDS patients (hypermobility type) who would start LDN

and provide blood samples and send them to Dr. Sacerdote at Uni Milan

(who's participating in the MS trial there, and who did all the blood

research that shows all the immune disorders are low in beta-

endorphin--and who has tested my daughter's blood and found it to be

identically low in BE to her previous fibro patient study AND that in

5 weeks her blood BE level came up from 1/6 to 1/2 normal).

What I have found since last June when I started my daughter on LDN

was that she's perhaps 20% better, but still using some percacet for

breakthrough pain and NO BETTER WHEN IT COMES TO DEEP, SLOWWAVE,

RESTORATIVE SLEEP (as evidenced by an all night sleep study in

November). So I've concluded that without restorative sleep, perhaps

both fibro and EDS patients won't do as much better as they could if

they were sleeping adequately.

According to published research Lyrica, or Topomax might help many

fibro people get restorative sleep--but not my daughter, because she

was taking BOTH when she had her sleep study, and still NO DELTA

sleep, no stage 3 or 4 sleep at all. Xyrem looks like the next bet,

but it's $300/month. Delta sleep CDs might work, but there's almost

no research (cuz no money in it for a pharmacompany).

So what I'm asking for is

1. anybody who could help me in setting up case studies for EDS or

fibro (meaning somebody who hasn't tried LDN yet, and a doctor who

will monitor and help with blood sampling issues).

2. information on sleep studies that any of you have had while taking

LDN (LDN probably increases alphawave sleep, which is NOT good for

fibromyalgia, though if it's a constant increase, not episodic

bursts, it would probably not cause problems not already present for

fibro patients), especially those of you with fibro (or EDS, but I

doubt anyone on this list has EDS, or knows that they have it--since

actually some -- up to 30% -- diagnosed with fibro may actually also

have EDS III, since only scattered experts normally diagnose that.

3. MS seems to be much better organized for LDN than fibro--and I

need fibro people to join with the EDS people I'm in contact with

(I'm the medical research guy in EDNatnalFoundation's " online

information group " of two people, who are still being marginalized by

the oldguard in the organization, similar to the situation in

Lorenzo's Oil.) If we organize and collect the information on the

relation between sleep quality and LDN-based improvement in fibro

(and eventually EDS), we can get pilot clinical trials done in Italy

for fibro and at NIH Baltimore for EDS III.

I confess I don't regularly read on this group, because I'm too busy

with my full time psychology professorship and my family's numerous

health issues--I'm practically a " single mom " to my wife and daughter

(tho that's an exaggeration of my role, and I'm NOT as overworked at

home as real single moms are, I'm just overloaded despite the

miserable job I do as a housewife/caretaker).

I will check back in a few days for answers to my post--but I would

appreciate it if any replies would be copied to my home email as well

as the group: nphbrown@...

Norman Brown, Ph.D., Ph.D.

Assoc. Prof. Psychology & Humanities

Embry-Riddle Aeronautical Univ.

Daytona Beach, FL

386-226-6631 office (starting Wed new semester) 386-316-5259 cell,

but I often can't answer, at least it will keep track of callers so I

can call back.