Reply To: Pain Treatment Options
I take morphine, oxycodone, gabapentin and nortriptyline. I’ve had CIDP since 1999. CIDP is a progressive disease which generates peripheral neuropathy & sensory neuron pains (which is treated with gabapentin and nortriptyline) and muscle dysfunction & motor-neuron pains (which is treated with morphine, oxycodone).
It is important to deal with these problems separately as far as pain relief goes(i.e. gabapentin will not relieve muscle pain, etc.)
I’ve discovered swimming as the best way to keep my muscles strong and tuned up. It does not matter what degree of disability a CIDP sufferer has to get benefits from swimming. I swim up to 2 miles every other day.
I am working my way off morphine & oxyCo as it creates discombobulating states of mind and body; of course it works, but constipation, fuzzy mind-states, decrease libido, dry mouth, dizziness and over-lord 1984 Orwellian surveillance by the right-leaning Thought Police are aggravating to say the least.
As far as I can see we, CIDP sufferers in the advanced states, are soon to be left with attempting to buy drugs on the black market or finding alternative medicine and methods to circumvent motor-neuron states of pain.
Franklin Roosevelt probably had GBS (not polio) and he found great relief in swimming, being in a pool, etc. Spending two weeks, two hours per day in a pool and working up the limits of what your body can handle releases beneficial endorphins—-
WIKIPEDIA –endorphins–any of a group of hormones secreted within the brain and nervous system and having a number of physiological functions. They are peptides that activate the body’s opiate receptors, causing an analgesic effect.
I get 240 grams of immunoglobulin G each month; every two weeks, four days each month, each day at 60 grams that last over 6 hours of infusion through my port. Remissions lasts for 24-25 day per month with 8-9 days of relapse. Cost is from $92K to & 120K each month, hence over 5 years of IvIG I become the Six Million Dollar Man, lol.
I have a drop foot, right hand fine motor dysfunction, fasciculations and profound weakness and pain during relapse. All of these are treated as motor-neuron problems(morphine, opioids). Sensory problems are neuropathy on hand, feet, torso numbness, hip/leg stinging pains and general proprioception(gabapentin, etc.)
I also recommend a reclining massage chair at the $2k or above cost, as massage also releases endorphins; as does adult music, acupuncture and being in love.