Pain Management HELP!
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December 29, 2013 at 2:19 am
New to this forum. My 61 yr old husband was diagnosed with Progressive CIDP 2 years ago. He has had a steady decline with his ability to walk and various other motor functions since. Retired early in March 2013. The pain is excruciating throughout his body 24/7 from head to toe. Most recently pain in his teeth. Quality sleep is impossible. IVIG was tried in Feb. 2012 and failed as he developed aseptic meningitis. Plasmapherisis or any other treatment at this point is not an option according to our neurologist. Pain is trying to be controlled with Gabapentin and Vicoprofen with minimal results. He had several visits to a pain clinic which was NO HELP at all. He has tried countless medications and had numerous tests done. We take one day at a time at this point. Any advice is appreciated. Thank you and God Bless
Bonnie -
December 29, 2013 at 3:40 am
Pain seems to be fairly common with us GBS/CIDP sufferers. I’m lucky to not have had too much pain. Following is a summary of what some other members have reported:
Some say 150 MG of Lyrica (Pregabalin) can do wonders for pain. This is similar to Gabapentin (Neurontin), but members believe they get better results with the Lyrica.
Another member reported that this spray has helped greatly: http://www.amazon.com/Salonpas-Pain-Relieving-Spray-Ounce/dp/B00759WR7I/ref=pd_sim_hpc_18
Fibromyalgia pain can sometimes be similar to CIDP pain and a new medicine called Savella (Milnacipran) has proved successful in reducing that pain: http://www.mayoclinic.com/health/milnacipran/AN02019
A few members have looked into this device: http://www.gbs-cidp.org/topic/spinal-cord-stimulator
According to what I just read on-line, Aseptic Meningitis is usually caused by viruses (e.g., enterovirus) and most people can recover from it. It does have implications for treatment with IVIg. SCIg is said to be a better alternative for those with Aseptic Meningitis AND suffering from CIDP. Please see the following publications for more information:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3296420
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2817783Perhaps some of the above is worth exploring to help your husband better manage his pain and get treatment for his CIDP. I hope he can improve soon so you two can have a little more normality back in your lives.
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December 29, 2013 at 4:59 am
I spent a little more time researching the CIDP-Aseptic Meningitis links. According to many posts on the NeuroTalk forums, Plasmapheresis is the treatment of choice for those where IVIg triggers Aseptic Meningitis. SCIg is the other treatment of choice. Perhaps you should consider getting a second opinion from a CIDP specialist?
Your husband’s pain may be better controlled if the CIDP is treated more directly without triggering Aseptic Meningitis.
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December 29, 2013 at 1:41 pm
Thank you so much for your response Jim!! We appreciate it.
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December 29, 2013 at 9:36 pm
Why is plasmapheresis not an option?
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January 18, 2014 at 3:52 am
GH apologies for the delayed response to your question about the option of plasmapheresis, the neurologist discouraged my husband from this option. Also, since March 2013 we no longer have medical insurance and are barely able to afford his medications.
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January 18, 2014 at 5:09 am
So the problem is economic, not medical? I was completely paralyzed and in pain when I started plasma exchange. PE was exactly what I needed. Both primary treatments for CIDP, IvIg and PE, are expensive, unfortunately.
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