Neuropathy

I suddenly started having feet pain in early 2018 right after my 2nd liver transplant in 2017. One Neurologist said if was probably from taking Prograf/Tacrolimus immune surpressant since my 1st liver transplant in 2000. I had my previous transplant coordinator say it was most likely from the meds. I take 100mg Lyrica/Pregabalin twice daily. And we have medical marijuana in my state for the past 5 years so I tried it and it has helped at night when I want to fall asleep. My feet used to freeze and burn at night and I could not sleep. I signed up for the MM program and works for me. I do not use much either.

Sorry for all of you who suffer from this terrible affliction known as Peripheral neuropathy. I have been dealing with it for almost nine years. It has worsened in the past nine months, now moving into my legs and feet.
As most of you have stated, no specific cause can be nailed down yet. Hence, the term "idiopathic". I usually mention to every doctor I have seen(is it eighteen or nineteen?), for every effect(pain and numbness), there is a cause. We know the cause is, to some degree, nerve damage. But, how do we treat the nerve damage? I had a spinal cord stimulator that worked fairly well for a little over two years to mitigate the pain. However, it was just a bandaid(as are the various meds I'm taking). Bandaids usually fall off after a while. The underlying cause needs to be discovered. If only the medical field would devote the time and resources needed to find that cause, those of us suffering would gladly pay whatever the cost would be to get out of debilitating pain that keeps us from enjoying life.

Thank you for sharing. I am sorry you are suffering, I feel your pain.
I’m hoping to find an answer somewhere . My pain has progressively crawled up my feet to mid thigh. I get nausea from the pain and can’t eat at times it is so severe. I pray there is an answer somewhere. If I had the money I would go to Spain where the top neurologist in the world is.
Stay strong and know your not alone!

Thank you for your response, so happy you are doing better on your regimen.
May I ask how you know what type of marijuana helped you, I know nothing about that.
Stay well!

I suggest you read about the programs your state offers. My state just legalized it but has had the medical program for the past 5 years. If you are in the Medical Marijuana program, it typically has higher dose strengths. There are many products too. You need to read about your states process. CBD and THC are in Marijuana that have an affects on you. There are many CBD's and these are not psychological. However, the THC affects you psychologically. Can make you relaxed, tired, focused, giggly/laugh, hungry, energized. It depends on how you react to it. Start with low dose THC. Smoking the flower or hash has the quickest reaction. Eating the edibles can take 1 hour before you l notice it. It wears off after a few hours.

Welcome @jezabella, You have certainly come to the right place. Lots of us have been in the same boat and are still learning new ways to live better with our neuropathy. A good reference to start with is the Foundation for Peripheral Neuropathy - Living Well with PN page here - https://www.foundationforpn.org/living-well/.

The other suggestion I have is to scan through the different discussions in the Neuropathy Support Group here to learn what others have shared - https://connect.mayoclinic.org/group/neuropathy/

Just curious if anyone has a problem with high humidity causing the Neuropathy to worsen to the point of nausea and hardly being able to get out of bed?
I notice when the humidity goes above 90 and then drops suddenly into 60 or vise versa, Iam good for nothing.

I know you are not alone Judy 🙃 - Lots of us on the neuropathy journey have mentioned humidity impacts. Here's a link to the different member comments - https://connect.mayoclinic.org/search/?search=neuropathy+%2Bhumidity.

There's also a weather related discussion on the topic:
-- Neuropathy: Does your pain increase when the weather changes?:
https://connect.mayoclinic.org/discussion/neuropathy-pain-and-changing-weather/