Stop your pain different ways - Charcot-Marie-Too...

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Stop your pain different ways

Alice-Ann profile image
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Check with your Doctor about taking more Gabapentin. I was taking 4 of this drug or 1200 mg. every night, but it made me sluggish in the morning. My doctors here in Dallas, Texas say I can take 1500 mg. a night. This is great for pain if you take enough.

I have begun taking a healthfood medicine called Omega Green.com. It is made from the HEMP plant. (they make ropes out of it. It is a first cousin to the marijuana plant, but is legal and doesn't cause the craziness. I take a pill twice a day, and have had NO PAIN for 6 weeks!!! Our military uses it in liquid form for bumps, bruises and muscle energy. The pills are something new. They are not sold in the store here as yet, only on the web.

Hope this helps.

Alice-Ann

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cmt_exercise profile image
cmt_exercise

How Alice-Ann, how do you find you sleep? I ask because a neuropathic sleep consultant I am seeing is convinced that a minor form of RLS and CMT are related, and has suggested that Gabapentin would be one of the potential solutions.

Alice-Ann profile image
Alice-Ann in reply to cmt_exercise

I find that I am able to sleep or take long naps almost anytime. My great Aunt we found to have both RLS and some sort of CMT. This is where we were able to begin tracing my Mother's DNA and mine back to where we think this all began. To back up just a bit, when I was first presenting CMT, the doctors at TX S.W. Medical began me on a regimine of 4 - 300mg at bedtime. I slept extremely well, but felt very drugged the next a.m. - They said this was for pain, which I didn't have. I did have some pain in my lower legs and feet and ankles. I decided to begin the Hemp in pill for 3 months ago, and now am not drugged, and have no pain. The Hemp is a first cousin to the Marijawana Plant, but with the high.

Our U.S. Military uses this oil for minor bumps and bruises. Check out Omega Green.com, or phone the Lab in Utah (Diana) 1-855-291-0522. I buy the pills straight from her. I am 80 yrs. old and love life, but am fighting this CMT as hard as I can. Good luck with a neurologist that will at least try to help you. Gabapentin will probably help you, but try to keep the dosage down so you won't feel drugged. Gabapentin made me gain a lot of weight!!!

Alice-Ann profile image
Alice-Ann in reply to cmt_exercise

I sleep very well on the Gabapentin, but it is hard for me to wake up without being rather sluggish in the morning. I have no such feelings with the Hemp. I have used it now for 4 months, twice a day and it doesn't make me feel dopey.

cmt_exercise profile image
cmt_exercise in reply to Alice-Ann

I have heard amazing things about Hemp - which brand do you use and concentrate?

Alice-Ann profile image
Alice-Ann in reply to cmt_exercise

Dear mjbk88:

I was just given the name of //hempworx.com)(sales hempworxstore.com) The one that I found on my computer is called (OmegaGreen.com) also USA.

Phone 1-855-291-0522 or email them for their 800 number which is free. I dropped my Gabapentin cold turkey 4 1/2 months ago, and still no pain!!! (The CBD Oil or Omega Green Oil or Cream do nothing for me.) I feel like a new person without all the dopey stuff in me. I am 80 and I feel like I've found a miracle. Another friend is sending me the name of still another hemp company that she uses. I still take 60mg of Cymbalta every a.m. as my nerves are helped without it affecting me much. I was sleeping most of every day with all the Gabapentin of 1200mg every night. My Omega Green comes in dark green clearish form pills with 30 in a bottle for $49 a bottle. I take 1 twice a day which makes my monthly bill $98. I doubt any insurance will pay for it but, I,at least, know my name better!!! Ha, ha! Will let you know if my friend comes up with still another name. Being new on the market, they will probably get cheaper soon. I don't even know that I'm taking the Omega Green, but will keep trying to find something a little cheaper. All of my doctors have smiled when I told them what I was doing. I'm going to my heart doctor today, and I'll let you know what he says. He thinks I'm crazy, too, but he does like the crazy jokes I send him, and he'll tell me what he really thinks. This is the kind of doctor that we ALL need. One that you can talk with, is brilliant, and will try any and everything to keep you comfortable. There aren't many of these around, but he is only for heart, but he does listen and we try new things together outside of my heart!!

I got back to my normal sleep in about 2 weeks, as the Gabapentin really drugged me. I feel normal now! (I see above that I duplicated a lot of this, sorry!) GET TESTED TO SEE WHAT YOUR DIAGNOISES REALLY IS!! TELL DR. HE MUST TELL YOU SOMETHING!!!

Hugs,

Alice-Ann

LoolooLacey2 profile image
LoolooLacey2

Hi, I have a friend who said she gets CBD Oil from USA and because it does not have the high part of it it is legal to buy. However, I have found a new company recently called HempWorx so might get in touch with them (again USA) - I am UK. I am aged 66 years old, but have a lot of pain and have had for years if overdo things. I also have a Myopathy and await CMT tests, but have ALL the advanced signs of CMT. My Consultant says I could have both. I would like to try something natural and not go for Neurological drugs. I take Tramadol just now, but my GP will not increase it, I know why because it is addictive, I have been on it for 18 years. Whenever I do to much, even housework etc I am done for for a few days, it is so frustrating, but I will not let it beat me. It sounds like your Hemp Pills work, must try them. Would I have to give up the Tramadol if I use the Hemp Pills, does anyone know?

Alice-Ann profile image
Alice-Ann in reply to LoolooLacey2

I don't any longer take Tremathol, as I don't need it. I do, however, take Cymbalta 60 mg. to keep my nerves from getting to me. The HEMP doesn't make be dull or sleepy and I can still drive to the store, since the right leg still works and I get on my scooter or walker when I arrive at my destination. The HEMP being a first cousin to the Marijawana Plant must give it some of its properties and is legal in all states. It is being formulated by scientists in Utah. The bottle of 30 is $49 and I take 2 pills a day with no pain instead of the opiods.

Please let me know what happens.

Alice-Ann (80 year old from Dallas, TX USA) aliceann@aliceannoliver.com

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