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Member Neuropathy Journey Stories: What's Yours?
This discussion was created as a place for members to share their journey with neuropathy. This will allow members to easily learn from each other what has helped them and hopefully help new members avoid some of the painful and difficult struggles some of us have faced. The following is a suggested outline for sharing your story that would be helpful for other members for comparison to their own neuropathy story.
— When did your neuropathy start? What were the symptoms? When and how was it diagnosed?
— What treatments or medications have you tried?
— What side effects have you had, if any?
Optional:
— What would you tell your best friend if they told you they had neuropathy?
— What activities have you had to give up because of neuropathy? What do you instead?
— How has your life changed socially? at work? at home?
What's your neuropathy story?
Note: If you want to ask a question for another member who has posted their neuropathy story here in this discussion, be sure to add their @membername in your post, for example @johnbishop. Your question may already be discussed in other neuropathy discussions. Be sure to check here first: https://connect.mayoclinic.org/group/neuropathy/ That way this discussion can be reserved for member neuropathy stories and hopefully make it easier to read and find similar symptoms to your own.
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Thank you @skeleton !! I very much believe in the power of prayer!
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1 ReactionHi @johnbishop ! I recently had to increase my night Gabapentin dose to even make sleep an option...but, my neurologist gave me Ondansetron dissolvables and Omeprazole also to try. I've had little windows of relief, but nothing major or for more than an hour or so at a time. Even 5 minutes, though, goes a long way in my book! Thank you for the encouragement, I pray the same for you and all the others connecting here.
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2 ReactionsMy last bout to the hospital the doctor prescribed Ondansetron to relieve the following.... dissolve 1 tablet 8 mg on the tongue every 8 hours for nausea or vomiting. I guess it might work some on sleep for a limited time as it is to settle a person down. I have high anxiety due to many under lying problems associated with neuropathy. Had it for seems like 1000 years. As stated in a post weeks ago, Gabapentin worked for me till I wore out the high dosage and it quit working for me. My pain doctor asked me to go on a low dose OxyCodone 10mg. Believe it worked for me not only for pain but putting the pain away while I slept. DONE SIDE ... now hooked and as did the Gabapentin it required more and more to relieve the pain. It does work but the end result can be just as painful trying to eventually get off it all totally. This with 2 high does of tamsulosin is enough one person would thing to completely put a person in never never land. The Doctor who is to preform the procedures, on an initial call could not believe how well I talking to him as to all the meds I take.
As stated some time ago I have found doctor that hopes getting all this behind me... No sugar rest of my life and surgery on both legs for small fiber compression. This is a price have paid for over 40 years of severe Neuropathy. If a person wanted to get on these meds I personally will say the pain is at a low tolerance most of the time. But the idea of being hooked or dependent on the meds is real.
I will certainly convey to all later on after these surgeries as to how good it has done to date. I am so excided for the out come that I would settle for just half the pain and not ever being on the opiates ever again. note: Tamsulosin is a generic of Lyrica
Like I said to end this..... I would take just half pain as to what I go throw on a regular 24 hour period. and being not dependent.
Hi @dantic123, Actually Tamsulosin is not a generic form of Lyrica. Tamsulosin is an alpha-blocker class of drug used for treating symptoms of an enlarged prostrate (BPH). I have been on the drug for quite a few years now for BPH. Here's some info on the drug - https://www.rxlist.com/consumer_tamsulosin_flomax/drugs-condition.htm
I think there may be some interaction between Tamsulosin and Lyrica (Pregabalin) according to this list - "Tamsulosin --- Pregabalin may decrease the excretion rate of Tamsulosin which could result in a higher serum level." -- https://go.drugbank.com/drugs/DB00230
ya sorry I just put down the wrong drug... Pregabalin is the one I wanted to say. I have so many in my tool box that I get some what confused at times. My wonderful spouse watch's over me carefully. When I stated the Tamuslosin, I figured it would interact some how.
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1 ReactionI thought that was what happened just wanted to make sure. My wife watches over me too 🙃
What good is knowing what you have if nothing can be done about it. I also finely got a diagnosis of SFPN which took years of my life . But once I got a diagnosis at hopkins they had no answers for what to do about it. So a real waste of time an enerergy.
Hi Ann @user_ch98d0b5c, I can relate to why you feel it's a wast of time and energy after being told there is no answer for my idiopathic SFPN "numbness". I avoided getting a diagnosis for more than 20 years because my PCP told me there's nothing that helps when I asked him if you determine it's caused by nerve damage, what can you do? I walked out of the appointment with the Mayo neurologist pretty discouraged after hearing there is nothing that will help, just let us know if it gets worse. When I got home I decided I have to change my mindset and look elsewhere for something that will help. My search brought me to Connect and helped me become a better advocate for my health.
While I'm not cured, like others on Connect, I found something that helps me. Not sure if you have seen the following discussion where members have shared their neuropathy story and what has helped them.
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
I hope you don't give up and you are able to find something that gives you relief.
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2 Reactions@user_ch98d0b5c There is always still hope! You are the expert in this situation, as you know your body more than anyone else. Talk to your doctors, spend time doing your own research and keep track of what helps/doesn't. Think of it as a mysterious tree that's standing tall in front of you. Sit by it, climb it, talk to it, even name it if possible! Spend quality time respecting and appreciating it. What others would consider a curse may actually be a gift specifically for you. I know that sounds crazy and maybe hard to fathom, but I speak for myself at least on this one. You've got the hard part out of the way in exposing it, now comes the fun part where you get to play artist and own the thing. When you discover new information, hints, tips, tricks etc then use that to encourage others who are also struggling. You are not alone, there are many of us out here to love, support and continuously uplift you. You've got this, never never give up! 🙂
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4 ReactionsI think I understand your frustration. After 5 years I’m still looking for answers. My personal view is that I don’t want to be told there’s nothing that can be done until they’ve done enough convincing diagnostics to be be pretty certain of it. I’ve learned enough so far, much from this group, about what tests are out there and similarities in my symptoms with others who are ahead of me in the journey. My number one goal is to see if I can at least help stop my deterioration and avoid institutionalization. When this unknown condition smacked me suddenly 5 yrs ago, accompanied with an infection those SC doctors say had nothing to do with it, I went from running 3 mikes every day to a wheelchair without hand use to wipe myself, and spent 7 weeks in hospital and rehab to learn life as severely handicapped. After 6 months of rehab, I’ve graduated to walker and have gained a lot of strength back, but still cannot be independent. This group, especially with great mentors like John has given me so much information and guidance to help me live with what I have now, and if it continues to be determined there’s no medical help available. I know now that I am not alone and this group surrounds me with so many people who understand us and can help cut to the chase in a lot of subjects because if research they’ve done ahead of us. I’m sorry, as I feel for myself, that there’s frustration with the lack of medical solutions for permanent solutions, snd hope we create awareness to get more help in researching and curing our neurological conditions.
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