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Small Fiber Neuropathy

Posted by Marlene Eckert @me1229, Oct 31, 2019

I am currently on 1200 mg of Gabapentin twice daily. My pain is not totally controlled at this level. My pain level gets worse as the day goes on and is worse at night. I like my one glass of red wine at night. I wonder if that is an issue with my pain. I’ve tried adding Cymbalta that created severe dry mouth then stopped that and tried Lyrica and that was just as bad. Now my doctor wants to try increasing the Gabapentin to 3600 mg a day. Here is another point. Can anyone tell me about their experiences

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bkfoster1 | @bkfoster1 | Sep 17, 2023

Has anybody tried Nooro? I tried it and it produced pretty good pain relief.
Barb

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1 reply
budjo611 | @budjo611 | Sep 18, 2023
In reply to @sfnmcashatsebv "nothing has helped my SFN pain either. trileptal helps w burning in finger tips, but notwhere..." + (show)
@sfnmcashatsebv

nothing has helped my SFN pain either. trileptal helps w burning in finger tips, but notwhere else. The pain is relentless and affecting my heart rate, it is low. A dr told me to find cause of SFN to stop it. I dont know the cause , suspected by dr i have a virus. I never test positive for covid active infection, only test positive on blood tested antibodies. I dont know what the virus is that is causing SFN. I dont have diabetes, never alcohol drinker. Getting tingling in my face

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What’s causing our SFN. That’s the question. But isn’t that the doctors job to answer. I’m seeing my forth neurologist in a couple of months. I’m skeptical, but hopeful.
Everyone’s SFN seems different. Me? No pain above the waist. But my feet and legs are ALWAYS in pain. My feet either feel frozen, on fire, or like all the bones are broken. Like all the tendons and ligaments are stretched out and about to snap. It’s forever changing!!!! Even hour to hour.
Finding the cause of it seems like a logical question. I’ve been trying for 5 years!!!! Beginning to think I’ll never find the answer. If I do, I’ll get it out there for others who may share my diagnosis.

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mariajean03 | @mariajean03 | Sep 18, 2023
In reply to @tigreyes2004 "What happens when you reach your limit of Gabapentin & it still doesn't work? Then it..." + (show)
@tigreyes2004

What happens when you reach your limit of Gabapentin & it still doesn't work? Then it would be hard to get off of it because then you have to taper off. This is a scary situation. I'm afraid of the Lyrica because I have heard horror stories about that.

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Have you tried compounded gabapentin and Lidocane? Or any other compounded meds for foot pain? It works but makes me dizzy with my other meds. Very careful about how much I apply. Maria.

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1 reply
bettyg81pain | @bettyg81pain | Sep 18, 2023
In reply to @betty1954 "I took Gabapentin for 9 years and the pain just kept getting worse. My pain doctor..." + (show)
@betty1954

I took Gabapentin for 9 years and the pain just kept getting worse. My pain doctor tried me on 5 different pain medications all of which I had a reaction to. I react differently to many medicines. They make me quit breathing. My pain doctor said he would recommend me to read up on using Medical
gummies for pain. He told me he could not prescribe it but I could go on line and get a doctor too. I had to really research it before I would try. Finally I got my FaceTime with the doctor and he sent my paper work to Mo Senior Services and it was approved. It is something that insurance won’t cover. I got my card last July. Started using it the day after. I knew I wanted to start as low as possible so cut each gummy circle in fourths, I saw some improvement within an hour but still a lot of pain changed to a half every six hours. It took all the pain away. My doctor then recommended I go to water physical therapy. I could do it in deep water with a life belt on. I have completed 5 weeks of that and enrolled in aquasize. I some times have to change my movements a little due to the bar in my back, but it has been the best thing ever. I can shop for groceries again without pain and go places with my husband. I feel like by me being willing to change my belief and make sure I take a half every 6 hours I have been set free. Fortunately recreational is now been voted in. Renewing your medical card is so much harder than getting it and everytime they deny you it is another charge. They denied me second time said picture on my license wasn’t clear enough and it is the same drivers license they accepted a year ago. I don’t get any type of high because the amount I take is small. Thankful I found a way to live life again..

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If I cannot get a dr to write a RX for them, would you please give me the information and address of the doctor that did write the RX for them. Thanks!!

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1 reply
bettyg81pain | @bettyg81pain | Sep 18, 2023
In reply to @tigreyes2004 "I understand what your saying about Gabapentin. I take 300 mg in the morning & 300mg..." + (show)
@tigreyes2004

I understand what your saying about Gabapentin.
I take 300 mg in the morning & 300mg at dinner & 300 mg when I go to bed.
I have tried to increase the strength & I was still in the same amount of pain so that is why I am sticking to the 900mg just to take the edge off.
I am in constant pain but I would not take Lyrica bc of the terrible side effects I have heard of it.
My pain is coming from my back but afraid to have back surgery.
Best of luck to you.
Gabapentin has made me lose my memory a lot & make same dingy but I don't take opioids so there is nothing left.
Best of luck to you.
tigreyes

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Would you please tell me what the terrible side effects of taking Lyrica are? Thanks!!

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1 reply
bettyg81pain | @bettyg81pain | Sep 18, 2023
In reply to @bkfoster1 "Has anybody tried Nooro? I tried it and it produced pretty good pain relief. Barb" + (show)
@bkfoster1

Has anybody tried Nooro? I tried it and it produced pretty good pain relief.
Barb

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What is it and where do you get it?? Thanks!!

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betty1954 | @betty1954 | Sep 18, 2023
In reply to @bettyg81pain "If I cannot get a dr to write a RX for them, would you please give..." + (show)
@bettyg81pain

If I cannot get a dr to write a RX for them, would you please give me the information and address of the doctor that did write the RX for them. Thanks!!

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I went into my search and put: Green Health physicians. It then allows you to set up a FaceTime appointment with a doctor for your state. They will ask you for pictures of any test you have had to constitute a need. It was very easy. Now MO passed recreational use so I tried to renew my card and after paying the doctor again and the state, they said my picture wasn’t clear enough on my drivers license (it was the same picture they used last year) so I called them and they said I didn’t need to renew since recreational allows anyone to get. I am so thankful to finally have something that works. This all has to be paid by you. Insurance will not cover it. It has given me new life though.

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tigreyes2004 | @tigreyes2004 | Sep 18, 2023
In reply to @bettyg81pain "Would you please tell me what the terrible side effects of taking Lyrica are? Thanks!!" + (show)
@bettyg81pain

Would you please tell me what the terrible side effects of taking Lyrica are? Thanks!!

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I knew a man that gained a lot of weight
I have heard of people having seizures & having to go to the hospital.
You are in a fog.
That is one pill I won't try no matter how bad my pain is?
Hope I was of some help,
Best of luck.
tigreyes

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tigreyes2004 | @tigreyes2004 | Sep 18, 2023
In reply to @mariajean03 "Have you tried compounded gabapentin and Lidocane? Or any other compounded meds for foot pain? It..." + (show)
@mariajean03

Have you tried compounded gabapentin and Lidocane? Or any other compounded meds for foot pain? It works but makes me dizzy with my other meds. Very careful about how much I apply. Maria.

Jump to this post

Those lidocaine patches don't work for me.
Thank you for the info.
God bless
Tigreyes

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ruthrg | @ruthrg | Sep 20, 2023

Have any of you been diagnosed with connective tissue disease! Reynauds. In your feet in hands? I have had Reynauds in my hands for years, during cold weather. I had a sudden(overnight) onset of bi-lateral neuropathy, in my feet, in 2019. Pain is constant,no matter the Temps. Dr. Says it must be Reynauds. I am a negative ANA autoimmune test, but know that there are more detailed tests available. I have close family members with Hashimoto's(sister, her daughter) RA,(daughter) AS(granddaughter, age 13) MS,(another neice) Chromocytopenia and Scleroderma,(3rd son) Heart disease(daughter, tumor, and oldest son, stent). I have been trying to get referred over to an actual autoimmune specialist, but was sent to a neurologist.
I wish I lived closer to a Mayo Clinic, or had the resources to get to one!
I still have an intestinal bypass in place,(looped off section is atrophied) that was done in the 1970's. No one seems to believe I have it, and still alive, with only 15" of small intestine left. I have malabsorbtive issues, and wonder if Drs. really know the really, long-term effects, of weight loss surgeries. I believe that my system has been altered so much, that what may be normal for some, may not be normal for me! I suffer from hair loss, including eyelashes and brows, dry mouth, dry skin, dry eyes, scaley feet, that peel, prolapse large bowel, bladder, uterus, and now, a lumbar-flank hernia. I have had a high-grade Barretts Esophagus with a esophageal hernia/hiatal hernia repair, after 46 years of reflux and PPI's.
The bypass was initially done to remove ulcers that had moved into my small intestines. Before it was discovered antibiotics would work! I was overweight from reflux, so surgeon "killed 2 birds with 1 stone!"

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