Friday, June 12, 2009

Sjogren's and Peripheral Neuropathy

Sammy tries to help tame my tootsies. Such a good doggie.

Man, I just hate it when it happens.

I settle into bed and want desperately to just konk out for the night, bone tired. Then it starts - those description defying sensations in my legs. I try to ignore them, then try to distract myself by reading or thinking of some gorgeous place to vacation, but to no avail.

Inevitably I end up pacing around the house, since walking around eases the bizarre creepy crawly tingly symptoms, which only makes me more fatigued the next day, which increases the likelihood that the next night will bring a return of the creepy crawlies.

Clomping around the house doesn't ease the burning and aching in my feet, either. At three o'clock AM, I am ready to collar poor Dr. S. and demand some magical relief. What what what is causing this??

Lucky for Dr. S., I wait to pose this question until my next appointment. She doesn't even know how many times she has narrowly avoided becoming seriously inconvenienced by my irrational moments. But since she's been my lifeline in dealing with Sjogren's, I try to be really really nice to her. So far.

After a referral to my neuro, I get the news that my symptoms are a result of peripheral neuropathy, and dutifully add another pill to my stack of daily medications.

What the heck? Just when I think that I have my body's response to autoimmune disease figured out, I get a reality check that reminds me of the body-wide effects of Sjogren's syndrome.

Which lead me on another quest for information, this time about the neuropathies associated with Sjogren's syndrome. Here's a brief overview of what I learned.

I had some basic understanding that this condition had some relationship with my body's nervous system, which basically consists of the brain, the spinal cord, and nerves. The central nervous system, the major players in this system, includes the brain and spinal cord. The nerves which connect the skin, joints, muscles, and internal organs are not considered part of the central nervous system, but are categorized as peripheral nerves. These nerves are responsible for communications with the spinal cord and brain. You can read more about the nervous system anatomy and physiology here.

Image found here.

When the peripheral nervous system isn't functioning correctly, the result is peripheral neuropathy. In my case, that translates to painful burning sensations in my feet and numbness and tingling in my left hand. The National Institutes of Health describes other potential symptoms here:
Because every peripheral nerve has a highly specialized function in a specific part of the body, a wide array of symptoms can occur when nerves are damaged. Some people may experience temporary numbness, tingling, and pricking sensations (paresthesia), sensitivity to touch, or muscle weakness. Others may suffer more extreme symptoms, including burning pain (especially at night), muscle wasting, paralysis, or organ or gland dysfunction. People may become unable to digest food easily, maintain safe levels of blood pressure, sweat normally, or experience normal sexual function. In the most extreme cases, breathing may become difficult or organ failure may occur.
The Medscape clinical reference site contains a very in-depth article about Sjogren's syndrome, and in it, cites this rather surprising incidence of peripheral neuropathy:
Sensory, motor, or sensorimotor peripheral neuropathy, often subclinical, can be detected in up to 55% of unselected patients with Sjögren syndrome.30 Symptoms of distal paresthesias may be present.
A diagnosis of PN is made after a careful and through evaluation by a neurologist, since Sjogren's syndrome is only one of a myriad of conditions which can result in peripheral neuropathy, some of which include: diabetes, vitamin deficiencies, malabsorptive intestinal disease, alcoholism, infection, some cancers and chemotherapy agents, renal failure, untreated thyroid disease,heavy metal toxicity, toxicity resulting from chemical and industrial agents, entrapment syndromes such as carpal tunnel syndrome, and other autoimmune diseases. (Source: Peripheral Neuropathy - when the numbness, weakness, and pain won't stop by Norman Latov, MD, PhD. pp. 17 - 71.)

Treatment options are directly related to the cause of the neuropathy. Obviously, PN related to autoimmune activity will be treated much differently than the neuropathies that are related to the use of chemotherapeutic agents, for example. Treatment of PN begins with careful management of the underlying disease.

Since my rheumatologist keeps careful tabs on my disease activity and I am currently being treated with disease-modifying agents, my treatment will include the use of symptom-reducing drugs. The list of such drugs is extensive, so for information regarding the use of these medications consult your physician.

You can read more about peripheral neuropathy, diagnosis, and treatment here.


Wendy said...

This post grabbed my attention because I found out this spring I have two herniated neck discs. No wonder my neck hurt! Maybe from being bucked off? (Note to self: No horse "backing" practice around the electric fence.). They seriously impinge the flow of cerebral spinal fluid, and contribute to neuropathy problems. I've read that this fluid plays a role in immune function. Really makes me wonder about the relationship of autoimmune disease to spinal injury. I gather it's a two-way street, one exacerbating the effects of the other. Steroid injections have helped. Take- home lesson: attend to your non-Sjogren's ailments, if any, as they come up. The SSF made a timely (for me) point about this in their last newsletter.

mcspires said...

I know this is an older post, but I just want you to know how helpful it is to still have this information available. I had my first appointment with a neurologist yesterday and am awaiting an MRI. Of course I am worried, and researching, and what comes up but your blog, which I love!

Coll said...

Hi Julia,
I have been diagnosed for about two years now and I just want to say thankyou so much for posting your blog.
I love your chatty style and the links you provide. The link from Medscape The in-depth look at Sjogrens was great. It explained so much to me, and it all related to me having Sjogrens and what all the symptoms are and why I am feeling like this. Again Thank You.