Forgive my ignorance, but what is CBD?
CBD is one of the chemicals found in marajuana that can promote healing and ease pain without getting high. THC is another element in marajuana that makes you feel high. CBD does not make you high but can promote healing
Is CBD part of your doctor’s prescribed pain management or something you chose to pursue independently? If independently, do you feel it is a better solution than what your doctor recommends?
My doctor told me about a patient using it withgreat success and suggested I try it. It does not have to be scripted.
Hi everybody…
The steroids i had in hospital over 4 days straight into vains was warm and helped me walk a bit better for a day or so…the pill form did absolutely nothing…just kept me up at night…not that i can sleep with all the pains anyway…every now and then i just fall asleep randomly to wake up and it had just been 2 minutes…
My fingers are really bad sometimes…especially if i was working on something or pulling some weeds out…then the vibrations shoot through my whole body and the blurry visions take over with the tons of bricks on my eyes…just about every day .
My wife knows when it is going “better” , when i touch her…with lesser pains …no band around my midriff…and no bricks on my eyes…i quickly go out and do something…gardening or whatever…but then triggers other bits.
Writing with the pen that circles my fingers…does work some of the times though…
Remission was brief…although it was not a total remission…some of the side effects just dissappeared when i weened myself off the baclifen…gabapentin…nortriptolene…topirimate…etc…etc…apart from morphine…life in a nutshell got a whole lot more complicated…but acceptance ( a bit anyway ), i suppose…helps .
Regards and wishes for a moments relief every now and then so we can close our eyes and sleep.
Leoquarius
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I am glad to hear you have found relief with it, no matter how small. Might explore this idea as an option for my husband.
Leo,
Have you been able to get a doctor to script you anything for some pain relief or sleep aide? Trying to gut through the pain long term isn’t a viable option, at least it wasn’t for me. Getting some relief from the chronic pain is a must to maintain some quality of life! I’ve written before that the neurologist isn’t your friend when it comes to helping you with pain management . Too much of a potential liability. Seek out pain management doctor and start getting some opioid for relief. God bless you and comfort you.
Hi , yes…i have had temazipam for sleep and gabapentin for pain…but when neurologist wrote back to my GP…said that indirectly gabapentin worked…i don’t understand where he got his theory , as i was adament that the gabapentin was not helping…and i was using the maximum dose they could approve . The baclofen did help for my spasms…i just have had nothing for my nerve twitches . I have had my head jolt backwards and forwards uncontrolably…weird and then people around me get a fright . They have tested me for epyleptic fits . I am fed up with all the medications…as the side effects aren’t something i wish upon my worst enemies .
"You are the talk of the medical fraternity , Leon "
That is what i have to hear from my GP and Neurologist…oh yes , and " you are a mystery "
@$$/&^$/…just tell me straight up that you don’t know why you spent ten years learning and you can’t help me…i have done natural medicines…natural healers etc…stopped eating meat…done the dairy free thing…nothing…
But hey…I’M ALIVE…
I don’t know how helpful be, but … I am now 67 (male) and came down with GBS almost 2 years ago, hands and arms more affected than feet (I gave up using a walker after nine weeks). I still cannot extend the fingers of either hand, though I have kept the fingers relatively supple using splints. Only now, I might be experiencing a fractional improvement in extension. I am dictating this using Dragon Natural Speaking software (Nuance), though I can now type with one thumb. I work out with a trainer to improve core strength and have strengthened my upper arms and wrist muscles (twisting, pronation and supination). I feed and dress myself, now without adaptive devices, but must ask for help to close buttons and to open many small twist caps. Wiping my bum is tricky; I take more showers. I am aware of tendon transfer surgery, but am holding off at this point, hoping for additional recovery. I never experienced any pain, and consider myself fortunate, preferring finger dysfunction over impaired or lack of mobility. Bottom line: GPS, myelin may regenerate even after two years.
fingers, were you ever officially diagnosed with CIDP? Your info is a bit of encouragement. My husband has still seen zero improvement, and continues to get weaker. I think he has been tested for everything known to man (haha). Still don’t know why his body continues to produce the antibodies causing the neuropathy, so nothing is helping. It is encouraging to hear you can now at least dress yourself. I hope you do continue to see improvement. You will be in our thoughts and prayers.
I have tried the CBD oil with absolutely no positive results but all of bodies are different. I will be trying some chemo treatments, I hope an pray they work. Was diagnosed 2 1/2 years ago with CIDP, what a messed up disease. Prior to that I was pretty healthy, played softball, bowled, now I struggle to get up.
Blessings and prayers to all of you.
Roger, have you had any improvement? My heart aches for your difficulties. You will be in our thoughts and prayers.
Roger - I assume you will be getting either cytoxan or rituxan. Cytoxan did not help me and I did get some of the bad side effects that I still have 2 years after. Some people have a good response to rituxan. I can’t have rituxan bc there is evidence that i have had exposure to the JC Virus which rituxan can activate. It’s a nasty virus that attacks the brain. Be sure you ask about getting tested for it. I wish you well.
Mike
Yup, thank you. Was tested and should be okay for the Rituxan, hopefully will start next week. This constant pain really wears you down; most people do not understand when you try to describe it to them.
Prayers out to all who are suffering, would be nice if they found something that would alleviate the pain.
Roger
Good luck, Roger!
I last posted on this thread in Aug 2018, so this is an update report, 4 1/2 years post-GBS. I still cannot extend fingers fully, but can now cup them to swim with. Even after stretching the contractures (I have found that sitting on hands is much more natural - and easier - than strapping on plastic molds prepared by OT), I cannot bring the 4 fingers together without them contracting. i now type with both index fingers.