Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

@johnbishop

Hi @inspect28, welcome to Mayo Clinic Connect. @elizm, @jlpdurham526 my wife gets leg cramps at night when she doesn't drink enough water and gets a little dehydrated so I think there is a little truth to what you both say. I think this article puts it in perspective:

Harvard Women's Health Watch – Will tonic water prevent nighttime leg cramps?
https://www.health.harvard.edu/bone-and-muscle-health/will-tonic-water-prevent-nighttime-leg-cramps

My thoughts are if you know something helps you then it's a good thing and I would keep doing it. The caveat is that it may not help everyone.

Jump to this post

@inspect28 28 @johnbishop @jpdurham526
As noted in my post, John, I drink the diet tonic water for restless leg, not leg cramps. For leg cramps, I take 125 mg of magnesium taurate in the morning and before bed because I take a diuretic (which takes a toll on potassium and hydration).

REPLY
@nanastable

There is little if any quinine in it and filled with artificial sweeteners. Better off drinking plain water or checking with a reliable pharmacist.

Jump to this post

@inspect28 @jlpdurham526 @johnbishop
@nanastable — Please note… I specifically noted DIET tonic water which has zero calories and zero sugars.

REPLY
@elizm

@inspect28 @jlpdurham526 @johnbishop
@nanastable — Please note… I specifically noted DIET tonic water which has zero calories and zero sugars.

Jump to this post

I know there are a number of diet tonic waters.
Zevia is sweetened with stevia which is fine for me.
If sweetened with sugar alcohols or aspartame, it is not.

REPLY
@johnbishop

Thanks for sharing. I have idiopathic small fiber PN but only have numbness in my feet and ankles. One of the supplements I take is 1.5 oz of organic hemp oil for the omega 3 and 6 along with other vitamins and supplement that provide nutrients that the nerves need. It helps but it's not a cure.

Continuing to learn myself. Actually it's one of my life's goals as I get older – learn at least one new thing a day.

Jump to this post

@johnbishop haha! remembering the one new thing is the problem!!!!

REPLY
@barbarn

@johnbishop haha! remembering the one new thing is the problem!!!!

Jump to this post

@barbarn you are so right! It's easy when you get my age. Sometimes the new thing you learn today is the old thing you forgot about yesterday. ☺

REPLY

From what I have read from the postings we are all suffering from some form of Peripheral Neuropathy and are looking for a treatment of some kind that will take away the pain so we can feel "human" again. It may take a group of doctors or young medical students who have Peripheral Neuropathy and willing to do the research required to understand what causes the pain and how to deal with it. We will continue doing what we have been doing, and hurting, until something is done to help us. Good luck to all.

The squeaky wheel gets the oil, or grease.
mlmcg

REPLY
@mlmcg

From what I have read from the postings we are all suffering from some form of Peripheral Neuropathy and are looking for a treatment of some kind that will take away the pain so we can feel "human" again. It may take a group of doctors or young medical students who have Peripheral Neuropathy and willing to do the research required to understand what causes the pain and how to deal with it. We will continue doing what we have been doing, and hurting, until something is done to help us. Good luck to all.

The squeaky wheel gets the oil, or grease.
mlmcg

Jump to this post

I find trying to get help gets me thrown into the mental ward. Any complaint…..mental ward. Family complaining I end in the mental ward. Crying out in pain….you guessed it mental ward. I feel beyond hope. Denied dying with Dignity because you have to be dying. They will just set a date so you can make sure your family is there. It has nothing to do with suffering. Only for a venue. You must be expected to die within a couple of weeks. No help for any neurological diseases. That's why Robin Williams commit suicide.

REPLY

Oh so that’s right. Basically because family does not understand metal health problems. What they do not see as a suffering body part, they do not think it’s real! Mayo Clinic can and did help me and family get the understanding family and I needed. Give them a chance!

REPLY
@nanastable

As do I keep learning!. I am looking into taking a course to be registered for Medical Marijuana. Want to share my knowledge and help others in time.
Also looking into some wonderful MasterClasses online.

Jump to this post

Is Medical MJ different from the pot that people smoked in the 60's ? It made me so ill – I tried it twice. Peggy

REPLY
@pfbacon

Is Medical MJ different from the pot that people smoked in the 60's ? It made me so ill – I tried it twice. Peggy

Jump to this post

Hello, Peggy @pfbacon. Yes it is similar but different at the same time. The MJ comes in many forms. In 8/2016, my neurologist started me on CBD caps 3x/day and a THC vape before bedtime for my insane insomnia and many other conditions. Prior to that, I suffered from the effects of 30 diseases (I know it sounds crazy!) and I could not sleep anywhere from 3 days to sometimes 6-7 days in a row.

As a result, for two years I passed out several times a day with injuries. After passing out through a glass table, I ended up at the Mayo Clinic from 8/2016 – 3/2017. At the end, I completed the 120-hour (21 day) Pain Rehabilitation Center (PRC). They are adamantly opposed to ANY form of narcotic for pain and that includes MJ. So I went off it. Since that time, ALL my symptoms have worsened and it has destroyed my finances from medical expenses. THE MJ reduced my pain, anxiety, depression and insomnia.

I give the PRC credit for teaching me to re-train my brain to FUNCTION IN SPITE OF PAIN. They helped me get out of a wheelchair so I can walk with a walker. That is amazing except that it is becoming more and more painful and difficult to walk. Many of my conditions are neurological, untreatable and incurable (peripheral neuropathy, degenerative disk disease, osteoporosis, osteoarthritis, fibromyalgia, tardive akthenesia, neurogenic bladder, Arachnoiditis, migraines, gastroparesis, GERD, and many more.)

The PRC weaned me off Klonzapam (Clonopin) for major anxiety disorder, which I had been on 10 years, and said no one needs it. I am glad they did because it kept me from functioning. My memory and cognitive abilities were greatly impaired. However, it caused all my symptoms to increase to the point that they’re nearly unbearable.

Because of the severity of my symptoms from anxiety which began when I was abused for 11 years as a child, I have advanced Bruxism (grinding/clenching my teeth). The MJ reduced the grinding. Within eight weeks of returning from the PRC on 3/31/17, I broke all 28 teeth. I’ve suffered tremendously since then. Long story short, I paid $15,000 last year to have porcelain implants in my upper gums. I could not afford another $15,000 for porcelain lowers.

In 12/2018, I developed two infections in the upper teeth that the porcelain was attached to and had to have seven of them extracted, including the teeth themselves at a cost of $2,400. If I hadn’t, a third oral surgeon confirmed that I would have developed sepsis and could have died at my age of 65 and being in such poor health.

The remaining teeth are extremely painful and I have lost 6 pounds already because I can only eat soup. I am trying to save another $12,000 to have the the last eight teeth extracted, get two implants so I can wear dentures and an upper porcelain bridge. This is very traumatic and doesn’t help my PTSD or pain.

So I have an appointment with my local neurologist, one of the country’s top authorities on MJ and one of three Florida physicians permitted by the State to prescribe MJ prior to the Amendment to approve it in our state. I INTEND TO GO BACK ON CBD AND MJ.

WARNING: The CBD alone was not enough to bring me relief so I need the THC, also. The PROBLEM WITH MJ is that everyone’s system is sensitive to it and the DOSE AND EFFECTS VARY WIDELY FROM PATIENT TO PATIENT. THERE EXACT DOSE IS DIFFICULT TO DETERMINE, SO START AT A LIW DOSE and work up if necessary.

When I was using the MJ Vape, the prescription was to inhale for three seconds, 15 times prior to bedtime. I repeat, DO NOT START AT THE PRESCRIBED DOSE. It would have blown me away. IT DOES MAKE YOU HIGH LIKE THE POT FROM THE 60s. I know, because I used to smoke it before I learned to deal with the abuse. So I reduced it to seven inhalations. That was still too much for my body, so I reduced it to five. That seemed to be enough to make me very relaxed and able to sleep. I still would NEVER DRIVE after using THC.

I do not like feeling high. I know someone very close to me who had severe problems from being on MJ. Being a recovered alcoholic and drug addict, he enjoyed the high and insisted on inhaling and/or ingesting the prescribed dose. It made him a zombie and put him in a very dangerous situation of possibly driving under the influence and being arrested, injuring or killing himself ir others or being able to function. His eyes were always bloodshot, he slurred and rambled when he spoke and he staggered when he walked. It took over a year of family and friends trying to convince him to reduce or stop the MJ. SO IF YOU CHOOSE TO USE MJ, USE EXTREME CAUTION. It can be very helpful, but you NEED AN ACCOUNTABILITY PERSON in your life so that if you cannot see how it is affecting you, they can. You must listen to them if they tell you that it is too much for you!

I trust my husband and daughter to be honest with me. And because of my drug and alcohol background which was many decades ago, I have enough common sense to see for myself if it is beyond what is reasonable or safe. Do not be afraid to try it, but please be cautious. And to be honest with your doctor who prescribed it. If you feel that it is too much, there are always different methods, strains and doses that she/he can prescribe.

I hope this information helps you. Good luck to you and God bless you.

Peggy @peggyella

REPLY

Thank You So Much for your detailed reply. My reaction to one inhalation of pot was immediate: severe vertigo, hallucinations, sweating, breaking out in fever blisters, headache … I laid on the floor for two hours thinking I was dying … it finally passed. A couple of years later I tried one inhalation of hash and had the same reaction. This was more than 7 years ago (statute of limitations is up), it was the 70's. Like you, I don't want to take anything that makes me sleepy or high or out of it; there are things I want to finish in the little time I have left. BTW, some girls named Peggy are actually Margaret but I am Peggy Lee. Peggy

REPLY
@pfbacon

Thank You So Much for your detailed reply. My reaction to one inhalation of pot was immediate: severe vertigo, hallucinations, sweating, breaking out in fever blisters, headache … I laid on the floor for two hours thinking I was dying … it finally passed. A couple of years later I tried one inhalation of hash and had the same reaction. This was more than 7 years ago (statute of limitations is up), it was the 70's. Like you, I don't want to take anything that makes me sleepy or high or out of it; there are things I want to finish in the little time I have left. BTW, some girls named Peggy are actually Margaret but I am Peggy Lee. Peggy

Jump to this post

Hi, Peggy Lee @pfbacon My name isn’t Margaret either! Cool. I’m Peggy Ella. I get what you mean. Have you tried the CBD yet? There’s no THC in it and doesn’t make you high. I’m not a doctor, but could you be allergic to the THC in MJ?

A loved one with AIDS for over 22 years uses both and it has prolonged his life the last 2 years and improved his quality of life greatly. He was really at the end when I literally took him to my neurologist. My doctor treats lots of people with cancer and a myriad of other terminal, chronic and painful conditions.

You can find me on FB or Messenger under Peggy Knoth. My profile shows COAST Ministry. Ignore the old profile. If you would like to talk or I can help in any way, please don’t hesitate to contact me.

REPLY
@grandma41

Hi,
I only had a bit of neuropathy in my hands while taking chemo.  Sorry, I may not be much help.  I hope all goes well for you.  Debbie
 

Jump to this post

OK IDIDN'T KNOW YOU COULD GET IT IN YOUR HANDS. THAT WOULD BE DIFFICULT TO DO THINGS.

REPLY
@peggyella

Hi, Peggy Lee @pfbacon My name isn’t Margaret either! Cool. I’m Peggy Ella. I get what you mean. Have you tried the CBD yet? There’s no THC in it and doesn’t make you high. I’m not a doctor, but could you be allergic to the THC in MJ?

A loved one with AIDS for over 22 years uses both and it has prolonged his life the last 2 years and improved his quality of life greatly. He was really at the end when I literally took him to my neurologist. My doctor treats lots of people with cancer and a myriad of other terminal, chronic and painful conditions.

You can find me on FB or Messenger under Peggy Knoth. My profile shows COAST Ministry. Ignore the old profile. If you would like to talk or I can help in any way, please don’t hesitate to contact me.

Jump to this post

I HAVE NEVER TRIED CBD BUT THINKING ABOUT IT MY NEUROPATHY IS IN MY FEET AND LEGS AND GETTING WORSE.

REPLY
@edwhalen

I HAVE NEVER TRIED CBD BUT THINKING ABOUT IT MY NEUROPATHY IS IN MY FEET AND LEGS AND GETTING WORSE.

Jump to this post

Try drinking to much water. Leg stretching and exercise.

REPLY
Please login or register to post a reply.