June 4, 2015 at 7:13 pm
I have CIDP and it hurts! For 21 years, 5 of them diagnosed, 3 of them using the maximum amount of gabapentin, nortriptyline and a variety of other pain meds. But, I still have pain, especially during my 8 days of relapse each month. I get 240 grams of IgG each month. I also have MGUS and because of this I have an oncologist, who tells me that here in Hawaii CIDP is one of the few chronic afflictions that is specifically spelled out, by law, as a pain remedy for CIDP.
My question is, without implicated yourself in myopic Federal regulations, what is your experience with this medication? In Europe and elsewhere (and in other open-minded countries) Sativia (a brand name, but spelling might be wrong) is highly recommended for relief from peripheral neuropathic pain with very little euphoric or mystical highs involved.
I’m traveling to Washington state to experiment this month, since to experiment in Hawaii (although medically sanctioned, an expensive licence is required) it is still illegal.
June 13, 2015 at 2:41 pm
At one point my docs had me on a terminal cancer patients dosage of opioids. I take 1 7.5 Vicodin at this point and 300 of lyrica. The rest of my pain mgmnt is pot. No better treatment around. I don’t have to medicate if I don’t need to. I’m not constipated and I’m not in the opiate haze that comes with that drug. Everyone should be aloud to medicate this way.
July 3, 2015 at 2:48 am
So… I end up in Washington State staying a week with a medical marijuana grower. The man is licensed and has the legal limit of 45 mature budding strains of cannabis in production. His operation is professional and his product undergoes rigorous inspection by the state liquor board. It is all out in the open and completely devoid of the criminal element so many people associate with cannabis. I was SO impressed at the professionalism Washington State mandates for all aspects of the business.
Many industrial areas that have fallen on hard times in both Tacoma and Seattle, and are now, according to him, being rejuvenating with large grower operations and distribution points. This is also known as job creation and therefore tax revenues.
Bottom line: medical cannabis works for CIDP, but one has to be tuned in to the specifics of cannabis as they apply to your unique situation. I also discovered that in Washington State cannabis is no big deal. I thought I’d see crazy pot heads everywhere, but it just ain’t so.
I experimented with various strains of sativa and indica. I ingested cannabis using various delivery methods: pipe, vaporizer, water pipe, concentrated oil and edible forms.
Indica strains made me very lazy, somewhat stupid and had NO euphoric effect. Stativa strains gave me energetic mental processes, some euphoric insights and muscle relaxation. Sativa strains are recommended for CIDP in Europe, where it is legal medication by medical prescribers
As to pain & pot, which is the reason I undertook this exploration: 1)-definite energizing feeling throughout my body for 6 hours with statvia strains 2)- plus, relaxation of peripheral never symptoms. 3)- and because I was occupied with the energizing effects of high CN2 strains, I paid less attention to disabilities and felt more creative. I am a writer/musician by profession.
The one thing that was very apparent was my weakness in hands, hips and legs. The psychoactive qualities of stativa, combined with the relaxation qualities of indica (CN1/CN2 ratios) made me realize that I was denying obvious weakness. My weakness is very apparent to others, and yet I do everything I can to hide it… A very stupid thing, caused by vanity, self-denial and inflated self-image.
Anyway, because of this bit of self awareness, brought about by the combination cannabis strains, I will no long rely solely on a cane, but move to a walker and wheelchair when necessary. I am constantly on the verge of falling, but because of my great muscle build I can usually catch myself, but I now understand that it makes loved ones and friends very nervous.
I’ve concluded that if I can work with a knowledgeable grower, here in Hawaii, who understands the varieties, the strains, the concentrations, etc. I can then supplement my neurologist prescribed pain meds with my oncologist prescribed cannabis to cover all areas of my very complex pain situation regarding CIDP and some diabetic complications.
BTW- my friend has used prescribed cannabis for lung/ breathing problems for 8 years, and only at bed time. He is 81 years old.
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