Pain Treatment Options
March 26, 2018 at 12:48 pm
I have had CIDP since 2013. Retired 2005. It has been controlled with Prednisone all this time. Dose is increased when signs return and then reduced gradually. Recently trying Ivig proved to be a nightmare. Visiting nurse performed the infusion. My body felt poisoned and I discontinued after initial load and a third week infusion. Fluids and slow loading was performed. Bottom line is I cannot afford it.
Recently I began to have extreme pain upon standing or walking even a small distance. It has me bed / wheelchair dependent. I will be seeing my Neuro next week who does not know of this recent change. I was out of town when this occurred. Neuro cannot prescribe any major pain killers like Hydrocodone without limits set by NDA.
Has anyone found other methods to deal with the pain when it comes ? What might be triggers?
I am very depressed over this setback. I was able to walk, sometimes with a cane, and perform small projects about the house.
Thank you for any info you may provide.
March 26, 2018 at 5:33 pm
I’m on 3600mg of Gabapentin every day. I takes about 20 to 30% of my foot pain away. I know it when I skip a day. Gabapentin is dirt cheap and seems to have no side effects, at least with me.
Another option is Lyrica, as suggested by my Doctor if the Gabapentin isn’t doing enough for me.
One I tried is Cymbalta. It did take, say 50% of my foot pain away, but man alive, it sent me into Lala land. One pill would have me feeling doped up for several days. So I quit taking it. I simply could not function taking these pills. Other people though, tolerate it just fine.
March 28, 2018 at 4:35 pm
Thanks for sharing your experience Brian. I recognize your name having been a visitor to the Forum since last year. In my opinion you provide good support to the Forum.
I am on 2400 mg of Gabapentin plus 2 Hydrocodone tablets per day as needed. Neuro is not comfortable with prescribing Controlled Drugs and suggested that I seek Pain Management and look into Medical Marijuana which is legal in FL or GA, where I spend my time. Neuro will continue tracking and controlling spread of the disease (HOPEFULLY) and methods to reduce Extreme Fatigue.
A family member, who suffers from Fibromyalgia, Psoriatic Arthritis, and Pustular Psoriasis suggested trying Cymbalta or Lyrica.
March 28, 2018 at 5:05 pm
I have had good success with Gabapentin 1500mg a day, R Alpha Lipoic Acid 1 x 300mg 2 times a day. I too had similar results with Cymbalta. I also tried lyrica. I had significant weight gain, dizziness & severe blurred vision on the effective dosage Lyrica. And to a much less extent, also with Gabapentin. Although Lyrica, was best relieving my neuropathic, hand & foot Pain. It was the severe blurred vision, from Lyrica, that ultimately prompted me to stop taking it.
Gabapentin, has some of same issues. But for less a time span. I can take less of it. Or time it, so as to my advantage. (delay the dose to get myself home, ect). Anything to get around the severe blurriness. Where the Lyrica is so long lasting. It was a troubling problem. Particularly to drive at night. Or need to read medicine bottles, seriously can CVS write any smaller?
My life got easier when I finally found a competent Neurologist. What I needed was someone to work With me. It ends up I have an autoimmune problem, not Diabetes as was previously thought. So, My ALC which was high, to him. Is actually a normal number for me, for like 20+ yrs. Another point, Why 3 EMG’s in 2 years. On top of all that… When my weight went down 60 lbs, to my previous averaged weight. So did my, so called high blood sugar. My mistake was, I did not have any improvement with my first, 2 doctors, My GP or the 1st Neurologist. I went to a 2nd Neurologist. We had a severe language barrier. All he did was order another complete blood workup, and another EMG. Even though 2 previous ones showed demyelination. And it was getting worse. You need to try different things and mix it up a bit. I Keep records of what works and why. This forum is a perfect example. I send my Doc links all the time!
It is easy to lose resolve. Keep at it. Don’t overlook any success, even a little. I had to go to a Pain Management doctor to get an epidural procedure on my back. We later tried Nucynta. It was only approved after a step therapy program on Oxycodone. IMO, It was expensive, it had many drawbacks. For one insurance would only approve it for 1 year. And it was a problem every time I would go too refill it. (We don’t have it). I still have 2 scripts that are outdated for they were never able to fill them in the allotted time frame. So there was 2 pain management appointments for naught.
FYI: I had issues with IVIG. I had trouble with the loading dose, My Doc, lowered the dose, / still a problem. Changed IVIG amount and rate. I now take an IV pre-dose, 250mg prednisone slow push, a tylenol, a benadryl, A gallon of water the day of. And a gallon over the next 2-3 days. This is important. You to flush out your system.
I could not have typed this message a year ago. HANG IN THERE !
If you can not find a Doc. Look into the “Centers of Excellence.”
Are you currently on Disabilty?
I found out a few thing when shopping for Medicare, on IVIG coverage.
March 28, 2018 at 5:18 pm
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.
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