Thoughts on XMVR and Fibromyalgia

[Jimk]

Although my own interests the XMVR virus relate to CFS/ME, my daughter has been struggling for 7 long years, all of her teens, with disabling Fibromyalgia. Her pain levels have developed into ungodly, intractable, soul braking levels. I wanted to share what a very sharp, thoughtful pediatrician said about how a neuro-virus like XMVR might produce this kind of central pain syndrome. A number of Fibro people, not to mention CFS/ME folks, develop this over time. He makes a link I've not heard spoken of so clearly elsewhere. He said:

"The recent discovery of a rather striking correlation with a gamma retrovirus, XMRV, also raises concern that the pain seen in fibromyalgia may not be related to a only a problem with the CNS management of affect, but reflect a true neuropathic pain, like that seen in conditions that afflict the CNS. Not to be too shocking, but the example of rabies comes to mind. A viral infection that has nothing to do with mood per se, causes cellular inflammation in the brain that leads to quite agonizing pain. Could XMRV do something similar? We do not yet know."​

Please note that this quote is out of a larger context email he is addressing and he is not at all ascribing FMS merely to affective dysregulation.

 

[kolowesi]

Jimk neurologic effects of XMRV

Thanks for this info, Jim. I know lots of people with FM who seem sick. Some have found out after years of pain treatments that they have the kind of viral infections that ME/CFS patients have.

This doctor does seem very sharp and I'm glad to hear there may be a connection. It seems FM is another waste-basket diagnosis as all that is done is pain medicine and sometimes hormones. Not very many docs even look for an infectious component.

It will not be a big surprise to me if many of the ailments that have skyrocketed in the last 25 years have a connection to XMRV. We shall see.

My best wishes to you and your daughter. It must be grievous to watch her suffer.

Kelly

 

[Advocate]

He makes a link I've not heard spoken of so clearly elsewhere. He said:

"The recent discovery of a rather striking correlation with a gamma retrovirus, XMRV, also raises concern that the pain seen in fibromyalgia may not be related to a only a problem with the CNS management of affect, but reflect a true neuropathic pain, like that seen in conditions that afflict the CNS. Not to be too shocking, but the example of rabies comes to mind. A viral infection that has nothing to do with mood per se, causes cellular inflammation in the brain that leads to quite agonizing pain. Could XMRV do something similar? We do not yet know."
​

This is a fascinating idea. Thank you.​

 

[Finch]

Hey Jim!

Hi Jim - I'm so glad to see you here. My hope is that this new research will provide us with additional answers and maybe help us find our way to a higher level of wellness where the current CAP protocol may be helping but leaving us just a bit short.

Welcome, and please stick around! Your knowledge can be very helpful here.

 

[greybeh]

I have fibro.

The term "wastebasket diagnosis" is about as emotionally-laden as calling ME: "chronic fatigue."

Those of us with fibro on another board are eagerly reading about the XMRV findings. I personally hope it gives many of us much-needed answers.

I'm 30 years old, and in 2007, I thought I was going to lose my job from the cognitive issues and overwhelming fatigue -- the "can barely stay upright" sort. I've had symptoms since 2003 or 2004, after having lost over 175lbs through a healthy diet and high-fiber/lean protein doctor-supervised diet. I thought I should feel really great... I was exercising 3-4 times a week for 30-40 minutes at a time. I weighed 150lbs instead of 328lbs...

Only I couldn't do it any more. I complained to the doctor of being exhausted and "feeling like I'd been hit by a Mack truck."