As anyone suffering with GBS or CIDP already knows, neuropathic pain is a common occurrence and is often accompanied by numbness or extreme sensitivity to touch. Neuropathic pain is also unpredictable. Presently, there are no specific FDA-approved medications for neuropathic pain, a particularly frustrating situation for doctors whose goal is to make their patients as comfortable as possible while they deal with the residuals of GBS or CIDP. Since 10-30 percent of the population (or 1 in 3 persons) deals with chronic pain, seeking ways to minimize the symptoms and discomfort are primary for physicians.
In a recent Rotterdam study, 36 percent of patients (or 1 in 3 persons) experienced initial pain even prior to diagnosis. In the acute phase (within the first two weeks,) 66 percent of patients (or 2 in 3 persons) experienced pain, and after two years, more than 40 percent were still experiencing residual pain. 70 percent of patients across all various forms of GBS said their pain was severe.
Comparisons also showed that there are commonalities in the location of pain. Not surprisingly, most patients experience pain in the extremities, (i.e., arms, legs, back,and shoulder blades.) Regarding treatment, in a GBS study of 172 patients, Gabapentin performed better than placebo, and steroiduse
proved non-effective for pain and is not recommended going forward. Similarly, 40 percent of CIDP patients noted an increased intensity of pain, and in many cases, consider it severe. However, location of pain remained virtually the same as with GBS patients.
What can we do, then, for the treatment of pain? My advice to you, first and foremost, is not to rely on
medications only—and, limit any type of pain injections if possible. As an alternative, consider occupational or physical therapies. Try acupuncture, yoga, and tai chi.
These types of therapies also help provide a mental relief from the day-to-day reminder of what you are
experiencing. They are a great way to broaden your outlook on life and an opportunity to make new friends.
Most importantly, set up some general rules for your pain management. Create reasonable expectations and goals to manage your pain. Remember, with chronic pain, it is critical that you establish reasonable goals. Other than total pain relief, reach to achieve a level of tolerable pain. Also realize that side-effects are to be expected. They will happen. Get used to it.
Studies also show that when considering occupational and physical therapies, start slow and gradually increase activity over time. And, it is recommended that you should begin treatment sooner than later after diagnosis. Don’t wait. And, outcomes are usually better if you work with a pain team. Make sure all team members are in contact with one another to insure the best communication related to your care.
Remember to manage other symptoms outside of those directly related to GBS or CIDP, as well. Symptoms like depression and insomnia. Do your best to develop coping skills. Attend support groups. Each of these suggestions will all help you manage critically important facets of living like, work, recreation and sleep.
As with alternate therapies, manage your medications appropriately. Start with the lowest dose and gradually increase the medication until you’ve reached maximum effectiveness. Should you discover no relief from any one drug, discontinue the use of that drug as soon as possible and make sure you taper off the medication.
Lastly, I’d like to make you aware, that we are currently involved in active patient studies in 40 centers across the nation with the goal of determining which pain medication works the best and which medications have the least, and the most, side effects.
I am encouraged that research science is moving forward in all of these areas and remain optimistic about your future as you manage your pain.