Fibromyalgia and Orthostatic Intolerance

[Visiting]

Has any one information on people with fibromyalgia who got better by treating Orthostatic Intolerance?

[Heiferly]

Take a look at this article:

http://www.jpeds.com/article/S0022-3476(99)70173-3/abstract

Unfortunately, without journal access through a university/medical library, the full text costs $$, but google scholar caught this glimpse from it:

"Several recent investigations have also identified
a high prevalence of orthostatic intolerance among those with fibromyalgia. ... "

so it does link CFS, EDS, OI, and fibromyalgia (and is by Rowe).

Here's another one about JHS (the umbrella under which EDS falls) and fibro:

http://www.jpeds.com/medline/record/ivp_08937524_11_39



EDS/JHS are definitely known to be associated with dysautonomia/autonomic dysfunction.    If you have a rheumatologist, s/he should be able to evaluate you for JHS/EDS.  From what you described ("joint over flexibility" and "over flexibility in veins"), I think that's the missing link that I wasn't getting from how you were getting from fibromyalgia to OI.  I'm guessing that is what you may have heard/seen Rowe referring to:  a link or correlation between fibro/CFS, EDS/JHS, and OI/dysautonomia.

For more information on EDS/JHS, you may want to start here:

http://www.mayoclinic.com/health/ehlers-danlos-syndrome/DS00706

http://www.reumatologia-dr-bravo.cl/patients/Dysautonomia.htm  (Not a US site, so pardon her English in places; still worth reading because she focuses on JHS+dysautonomia in particular.)

http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002439/

Feel free to ask more questions here, post another thread, or send a personal message to me directly anytime.  I hope this information is helpful to you.
-Heiferly.

[Visiting]

Thanks for your time and detailed answer Heiferly.

I wondered about the possible link when I read about the connection between OI and CFS introduced in 1995 by Peter Rowe, MD, and associates at Johns Hopkins University. I think his slides also mention fibromyalgia. The other research I came across in his slides regards joint over flexibility that seems to be quite common in fibromyalgia patients. I think Rowe speculated on a related over flexibility in veins (though I am no longer sure here, it has been a while since I read the documents). I am interested in finding out more proven scientific facts about fibromyalgia that may give a glimpse at the cause, but came up with very little.

[Heiferly]

I don't know of any case studies to this effect, nor do I readily recall any anecdotal evidence (from here in our forum, at least).  Generally speaking, OI (orthostatic intolerance) is more closely associated with Chronic Fatigue/ME than Fibromyalgia.  Hypothetically speaking, I would rate it as unlikely that one would get relief from fibro through treating OI, and here's my reasoning:

I'm presuming we're referring to relief of OI through treatment with medications for orthostatic hypotension (if present), hypovolemia (if present), etc.  Other treatments for OI might include medication to target nausea (if present), headaches (if present), etc., as well as non-pharmaceutical treatments such as compression-stockings or salt/fluid-loading (again, if indicated).  What all of this achieves is, of course, not a cure but a measure of symptomatic relief and frequently this is partial relief not complete resolution of the symptoms.  (If on the other hand, we presume that the OI is secondary to an underlying condition, we're in an entirely different situation.  OI secondary to dehydration can be entirely cured by resolving the dehydration.)

But back to our first scenario where we can't "cure" the OI:  if the person also has fibromyalgia, I see no reason to believe that reducing symptoms relating to orthostatic intolerance (nausea, dizziness, weakness, vision changes, fatigue, tremulousness) is going to resolve the symptoms of fibromyalgia (stiffness and pain in at least 11 tender point sites).  Although fibromyalgia also may be characterized by other symptoms which overlap with OI (such as the fatigue, palpitations, brain fog, headaches, and exercise intolerance), the defining characteristic is the unique pain profile that defines the condition, and I don't anticipate that treatment for OI would have an appreciable effect on this.

However, as always, I offer the disclaimer that I am not a physician and this does not constitute a medical opinion nor medical advice.  So I could be wrong.  I certainly think that if a person has both OI and fibro, treating the OI can't *hurt*!  Alleviating to the greatest extent possible the symptoms which are being contributed to by both conditions would, it seems to me, be a high priority.  

I hope that was at least slightly informative.  I'm sorry I couldn't point you in the direction of a person in this very situation.  I'll let you know if I come across something more specific pertaining to this scenario.

Best,
-Heiferly.