Neuropathy/IBS Pain

Posted by crisp358 @crisp358, Jun 5, 2024

Hello,

I have been dealing with burning/tingling pain in my hands and feet, along with abdominal pain related to IBS for a few years now, with both reaching their height starting last year. I've been putting off medication, but I think it's time I discuss treatment options with my PCP and Gastro doctor. The pain from both disorders is wearing me down and limits my quality of life.

I'm lucky to work from home, but I rarely get out of the house. Exercising exacerbates the pain and also fatigues me (also dealing with off and on fatigue since last year, coupled with cognition fog). I'm in my mid 30s and in relatively good shape. I eat a lot of whole fruits and vegetables (low fodmap), I stay away from gluten and sugary snacks/drinks, and I drink a lot of water. I'm on a vitamin D and B12 supplement. The only thing off is my TSH which is slightly below normal. I've seen two Endo doctors and they both recommended watch and wait. I also saw a Neurologist who completed and EMG/nerve conduction study and it came out normal.

I'm starting to wonder if I'm suffering from fibromyaglia or chronic fatigue syndrome. I want to bring this up with my PCP but don't want to seem like I'm fishing for a diagnosis. I just want some relief from the physical pain.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

fala | @fala | Oct 21 9:05pm

In reply to @note8book "@fala I think that the reason my BP is so high is because my skin burns..." + (show)

@note8book

You know, I never thought of that. Just to make things more interesting I have had a severe headache since April, and it keeps getting worse all the time!
I could keep on going with more complaints, but I should stick to telling solutions.
I hope you are doing ok!

note8book | @note8book | Oct 22 4:23pm

I saw my nurologist today and he just raised the dosage of my Lyric from 75 at night to 50 in the mornings. After I told him about my brain zaps and a flash of light he has ordered some kind if scan that he will do to check my brain waves and he has also ordered an arterial ultra sound of my legs to see if I have any blockages in them because they burn so much. I won't get the results until I see him at my next appointment next year. I hate having to get results of tests but he is only one of the two neurologists at the medical center where I go to see specialists. We have a shortage of doctors where we live and the name of the game is wait and see about test results.

note8book | @note8book | Nov 3 9:43am

In reply to @crisp358 "Thank you for telling your story. I want to see if my PCP will be comfortable..." + (show)

@crisp358 I have had IBS for a long time and when my colon gets irritated from laxatives it burns and then every nerve in my body burns and my BP spikes up in dangerous territory. I am 83 years old and my neurologist has me on Lyrica 50mg in the morning and 75at bedtime. The side effects are terrible and I have been on it for 47 days and it has not stopped my skin from burning not one day. I have to take a low dose of zanax every day to stop the burning and I have to be on a soft diet. I wish I had not taken the first dose of this horrible drug. I have upset stomach,nausea,bad constipation,and feeling like a zombie from the time I take my A.M dose until about 4 in the afternoon when it wears off.

note8book | @note8book | Nov 5 1:03pm

I have fibromyalgia and irritable bowel syndrome both. My neurologist has me on 50mg of Lyrica in the morning and 75mg at bedtime and it has not stopped the burning pain in my legs and feet and the burning in my skin. I have found the only thing that will stop the burning is Zanax .5mg. I know it is additive but it is the only thing that works.

timely | @timely | Nov 6 4:27pm

In reply to @note8book "@crisp358 I have had IBS for a long time and when my colon gets irritated from..." + (show)

@note8book

1) Get off Lyrica. The side effects totally outweigh any benefits which I can see. I think that you can’t stop cold turkey. Your doctor should help.
2) Do you have neuropathy? Have you explained this burning to your doctor.

3) Make an appointment as soon as you can. Have notes. Bring someone with you to help.
4) Plan B….Ask to talk to his nurse and say that you need to go off Lycrics ASAP. Demand it….

5) You should be taking something for constipation.
If you have burning in your Intestines, ask if you can take the IBguard that has peppermint oil capsules in it that don’t dissolve til they get to the intestines. They coat and protect them.

Stand up for your rights.
This is not meant to be offensive.
We all have to do this to get the care that we need.

Also, I have never heard that Xanax stops burning. It might help with stress as what you are going through is stressful…

note8book | @note8book | Nov 7 9:20am

In reply to @timely "@note8book 1) Get off Lyrica. The side effects totally outweigh any benefits which I can see...." + (show)

@timely The zanax does stop the burning. That's the only thing that will stop it. I am going to a gastro next week and hopefully she will take me off the lyrica and put me on something else. I had an arterial gram done and it showed that I have mild peripheral neuropathy in my legs. I am trying to help that by riding my stationary bike every day. As for the IB guard I have some of it and it seems to burn my colon.