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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)Comment receiving replies
Thank you Colleen. I was diagnosed in July with small fiber neuropathy and don’t know anything aboutitexceptit burns like hell. I became ill in February and was first diagnosed with gastroparesis, then after about a month the burning started and they thought it was related to the new meds I was on for it. I wound up in the ER 3 times in one week because I could not stand the burning. I could not sleep and it literally was driving me insane. After seeing a few doctors I finally was sent to a neurologist where he did some nerve tests and a few skin biopsies from my leg. That was what nailed the diagnosis and I was put on gabapentin. I’m still trying to figure out the right dosage and just increased to 1500 mg a day. The side effects only seem to last a few weeks. The most annoying one is if I am talking for a long time all of a sudden my mouth stops working for a minute and I have to take a minute and then start talking again. I am hoping to learn more about my condition and how to relieve it. One question I have is does humidity make the burning worse?
Replies to "Thank you Colleen. I was diagnosed in July with small fiber neuropathy and don’t know anything..."
Hello @orffehc44, I would like to add my welcome to Connect along with @colleenyoung and other members. Your question about does humidity make the burning worse for neuropathy is a good one. I know temperature and humidity changes affect me but I don't have the burning or pain with my neuropathy.
Here's some information I found that talks about it - Excerpt from link below: "The pain caused by humidity and summer heat may cause increased discomfort in those suffering from peripheral neuropathy symptoms. By ensuring the patient has a comfortable indoor environment, the change in temperature will not exacerbate chronic pain.Sep 11, 2019" - Responding to Weather Changes When Caring for Neuropathy Patients: https://fapnewstoday.com/2019/09/11/weather-changes-neuropathy-preparations-appropriate-clothing/
If you want to learn more about the different types of neuropathy, Dr. Matthew B. Jensen has some easy to understand videos on his YouTube channel here: https://www.youtube.com/channel/UCJaXGRxxjnF2mvLiOFmmHLQ/videos
If you are able and would like to share your neuropathy journey, we have a discussion for members with neuropathy to share their story - Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/ - The discussion description has a suggested information to cover for your story but it's not a requirement. You only need to share what you are comfortable sharing.
John
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Good evening @orffehc44. Greetings and a huge warm welcome to Connect. We are your neighbors and family friends without medical credentials. Our experiences are our own, to be shared with others who ask for help, support, and information.
You have had a bumpy road to your diagnosis of small fiber neuropathy. The fact that your neurologist sensed that it was time for the skin biopsy was a bit of good luck. Many of us wander around for years searching for answers.
Your gabapentin dosage of 1500 mg. Is that at one time or morning and evening? Gabapentin was my first medication. I couldn’t handle it during the daytime so we switched to bedtime. I have also modified the dosage over the years to 900 mg as I found effective alternatives.
Is the burning in your peripheral appendages, e.g. arms, wrists, hands, and legs, ankles, and feet? How would you describe your discomfort? Tingling, Pin pricks, numbness or what you call burning. Do you awaken with discomfort? Are you sleeping well now with the gabapentin?
You mentioned that you want to know how humidity affects SFN. I think that what you are experiencing is a lowering of the barometric pressure. If it is 30 and above, you should feel better. If it is around 29, sometimes you just feel like you are dragging your body around and everything hurts.
It would be helpful to know a bit more about you and your lifestyle. We have some typical journeys that folks have been willing to share. Post back and I will look for some with helping potential.
May you be free of suffering and the causes of suffering.
Chris