Member Neuropathy Journey Stories: What's Yours?

Posted by John, Volunteer Mentor @johnbishop, May 12, 2020

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.

Hello to all,

I posted several times previously and have been quietly following this group for a while now, but have never formally introduced myself or posted my crazy story. I am SO grateful this community exists – it has revived my hope and reason for waking up in the morning!

My name is Karen, I'm 31 and my journey with small fiber neuropathy began six years ago. It started as numbness in my right leg below the knee – I saw vascular/neuro (normal results, of course), who said to me, "Well, I don't know. Guess you'll just have to live with it." [and I quote] I said heck with it and moved on with my life. Then, two years later, came aggravating weakness in my right hand which progressed to numbness/weakness and interfered with work, so I headed to the doctor. He said it was probably just De'Quervain's Tenosynovitis, so just wear a splint and move on. I did, but it only got worse over time. Dropping things became the norm and sometimes hard to write. Being ambidextrous, I utilized this ability quite often until two years later, when things would change again. I got in a bad car accident, sustained a concussion (that's a whole nother story in itself fyi) and lost all my short-term memory. Three months later, I started having substantial pain radiating down my whole right arm and my hand was basically useless. I waited another year to go back to the doctor about it, but when I did, he said oh btw you have this elbow problem and sent me to neurology for nerve testing. Results came back normal, but he knew I had nerve damage, so May 2019 I had submuscular ulnar transposition surgery. In the meantime, my left arm mirrored the right (hand weakness minimized tho). I had knee surgery June 2019, then surgery on my left elbow October 2019. About the six-week mark, I noticed some unusual swelling around my elbow with extreme pain but waited til my post-op recheck two weeks later (December 18, 2019) to mention it. My Dr panicked upon seeing it so did an ultrasound – he immediately pulled me into emergency surgery. Turned out to be a massive blood clot covered with a mystery infection – it was *literally* the size of a tennis ball, about 1/2 of it was visible. I woke up with a drain in my arm and intense pain. To this day, I have zero feeling in both of my hands, worsening weakness in right hand, intensely severe pain/hypersensitivity in both arms, 2-day post I&D surgical pain in my left elbow and now numbness/pain below both my knees. To shorten the details for the rest of the story – I I have seen many Drs and have gone thru extensive testing of all kinds. I have a regular neurologist who narrowed it to the small fiber type after 3x positive biopsies. Genetic testing negative, minus SETX gene mutation c.4433c>a (A1478E). I do take Gabapentin which tones down the pain just enough to function and preserve sanity. I go back to see him 11/3/21 to discuss the next steps in finding the cause, if there is one. I've already tried many other unsuccessful therapies, medications etc. So, what I'm left with (besides ugly scars) is – I cannot touch my left arm at all, both arms are hypersensitive and must remain compressed at all times, I suffer from insomnia already but hardly sleep anymore due to nerve pain, I'm nauseous 95% of my day and lucky to eat 500cals/day or drink beyond sips, I have to pee 3-5x per night, some days my right hand is uselessly curled up, no feeling in either hand plus weakness, and the pain game in my arms/legs continues to increase/change. I have given up being almost completely active and drawn back majorly on hobbies/interests e.g. figure skating, running, cycling, hunting, fishing, drawing/tattooing/painting, crocheting, playing the organ etc. Even sleep is no longer an escape for me, I feel like I'm living inside a burning hell (pardon my french here). All this to say, I'm not complaining about my circumstances, only that this is the reality of my everyday life and, as I've heard it many times said, THE STRUGGLES ARE VERY REAL.

Thanks to everyone out there who's listening … and, for understanding and sharing in the battles. You guys are warriors and I am so so grateful to walk alongside and draw from such strength! THANK YOU! I hope my life can encourage someone …

Karen

REPLY
@rivermaya34

Hello to all,

I posted several times previously and have been quietly following this group for a while now, but have never formally introduced myself or posted my crazy story. I am SO grateful this community exists – it has revived my hope and reason for waking up in the morning!

My name is Karen, I'm 31 and my journey with small fiber neuropathy began six years ago. It started as numbness in my right leg below the knee – I saw vascular/neuro (normal results, of course), who said to me, "Well, I don't know. Guess you'll just have to live with it." [and I quote] I said heck with it and moved on with my life. Then, two years later, came aggravating weakness in my right hand which progressed to numbness/weakness and interfered with work, so I headed to the doctor. He said it was probably just De'Quervain's Tenosynovitis, so just wear a splint and move on. I did, but it only got worse over time. Dropping things became the norm and sometimes hard to write. Being ambidextrous, I utilized this ability quite often until two years later, when things would change again. I got in a bad car accident, sustained a concussion (that's a whole nother story in itself fyi) and lost all my short-term memory. Three months later, I started having substantial pain radiating down my whole right arm and my hand was basically useless. I waited another year to go back to the doctor about it, but when I did, he said oh btw you have this elbow problem and sent me to neurology for nerve testing. Results came back normal, but he knew I had nerve damage, so May 2019 I had submuscular ulnar transposition surgery. In the meantime, my left arm mirrored the right (hand weakness minimized tho). I had knee surgery June 2019, then surgery on my left elbow October 2019. About the six-week mark, I noticed some unusual swelling around my elbow with extreme pain but waited til my post-op recheck two weeks later (December 18, 2019) to mention it. My Dr panicked upon seeing it so did an ultrasound – he immediately pulled me into emergency surgery. Turned out to be a massive blood clot covered with a mystery infection – it was *literally* the size of a tennis ball, about 1/2 of it was visible. I woke up with a drain in my arm and intense pain. To this day, I have zero feeling in both of my hands, worsening weakness in right hand, intensely severe pain/hypersensitivity in both arms, 2-day post I&D surgical pain in my left elbow and now numbness/pain below both my knees. To shorten the details for the rest of the story – I I have seen many Drs and have gone thru extensive testing of all kinds. I have a regular neurologist who narrowed it to the small fiber type after 3x positive biopsies. Genetic testing negative, minus SETX gene mutation c.4433c>a (A1478E). I do take Gabapentin which tones down the pain just enough to function and preserve sanity. I go back to see him 11/3/21 to discuss the next steps in finding the cause, if there is one. I've already tried many other unsuccessful therapies, medications etc. So, what I'm left with (besides ugly scars) is – I cannot touch my left arm at all, both arms are hypersensitive and must remain compressed at all times, I suffer from insomnia already but hardly sleep anymore due to nerve pain, I'm nauseous 95% of my day and lucky to eat 500cals/day or drink beyond sips, I have to pee 3-5x per night, some days my right hand is uselessly curled up, no feeling in either hand plus weakness, and the pain game in my arms/legs continues to increase/change. I have given up being almost completely active and drawn back majorly on hobbies/interests e.g. figure skating, running, cycling, hunting, fishing, drawing/tattooing/painting, crocheting, playing the organ etc. Even sleep is no longer an escape for me, I feel like I'm living inside a burning hell (pardon my french here). All this to say, I'm not complaining about my circumstances, only that this is the reality of my everyday life and, as I've heard it many times said, THE STRUGGLES ARE VERY REAL.

Thanks to everyone out there who's listening … and, for understanding and sharing in the battles. You guys are warriors and I am so so grateful to walk alongside and draw from such strength! THANK YOU! I hope my life can encourage someone …

Karen

Jump to this post

Thank you for sharing your journey. I know it has to be extremely difficult to deal with your pain and other symptoms. I do think it helps to share with folks that can understand what you are going through as many have similar conditions. You mentioned being nauseous most of the time and not being able to take in enough food/calories and also have problems getting enough sleep. Has your doctor offered any suggestions for either? I think those two things are pretty important for helping your body with any kind of recovery process. Keep taking it one day at a time, one step at a time… Hoping you find some relief soon.

REPLY
@rivermaya34

Hello to all,

I posted several times previously and have been quietly following this group for a while now, but have never formally introduced myself or posted my crazy story. I am SO grateful this community exists – it has revived my hope and reason for waking up in the morning!

My name is Karen, I'm 31 and my journey with small fiber neuropathy began six years ago. It started as numbness in my right leg below the knee – I saw vascular/neuro (normal results, of course), who said to me, "Well, I don't know. Guess you'll just have to live with it." [and I quote] I said heck with it and moved on with my life. Then, two years later, came aggravating weakness in my right hand which progressed to numbness/weakness and interfered with work, so I headed to the doctor. He said it was probably just De'Quervain's Tenosynovitis, so just wear a splint and move on. I did, but it only got worse over time. Dropping things became the norm and sometimes hard to write. Being ambidextrous, I utilized this ability quite often until two years later, when things would change again. I got in a bad car accident, sustained a concussion (that's a whole nother story in itself fyi) and lost all my short-term memory. Three months later, I started having substantial pain radiating down my whole right arm and my hand was basically useless. I waited another year to go back to the doctor about it, but when I did, he said oh btw you have this elbow problem and sent me to neurology for nerve testing. Results came back normal, but he knew I had nerve damage, so May 2019 I had submuscular ulnar transposition surgery. In the meantime, my left arm mirrored the right (hand weakness minimized tho). I had knee surgery June 2019, then surgery on my left elbow October 2019. About the six-week mark, I noticed some unusual swelling around my elbow with extreme pain but waited til my post-op recheck two weeks later (December 18, 2019) to mention it. My Dr panicked upon seeing it so did an ultrasound – he immediately pulled me into emergency surgery. Turned out to be a massive blood clot covered with a mystery infection – it was *literally* the size of a tennis ball, about 1/2 of it was visible. I woke up with a drain in my arm and intense pain. To this day, I have zero feeling in both of my hands, worsening weakness in right hand, intensely severe pain/hypersensitivity in both arms, 2-day post I&D surgical pain in my left elbow and now numbness/pain below both my knees. To shorten the details for the rest of the story – I I have seen many Drs and have gone thru extensive testing of all kinds. I have a regular neurologist who narrowed it to the small fiber type after 3x positive biopsies. Genetic testing negative, minus SETX gene mutation c.4433c>a (A1478E). I do take Gabapentin which tones down the pain just enough to function and preserve sanity. I go back to see him 11/3/21 to discuss the next steps in finding the cause, if there is one. I've already tried many other unsuccessful therapies, medications etc. So, what I'm left with (besides ugly scars) is – I cannot touch my left arm at all, both arms are hypersensitive and must remain compressed at all times, I suffer from insomnia already but hardly sleep anymore due to nerve pain, I'm nauseous 95% of my day and lucky to eat 500cals/day or drink beyond sips, I have to pee 3-5x per night, some days my right hand is uselessly curled up, no feeling in either hand plus weakness, and the pain game in my arms/legs continues to increase/change. I have given up being almost completely active and drawn back majorly on hobbies/interests e.g. figure skating, running, cycling, hunting, fishing, drawing/tattooing/painting, crocheting, playing the organ etc. Even sleep is no longer an escape for me, I feel like I'm living inside a burning hell (pardon my french here). All this to say, I'm not complaining about my circumstances, only that this is the reality of my everyday life and, as I've heard it many times said, THE STRUGGLES ARE VERY REAL.

Thanks to everyone out there who's listening … and, for understanding and sharing in the battles. You guys are warriors and I am so so grateful to walk alongside and draw from such strength! THANK YOU! I hope my life can encourage someone …

Karen

Jump to this post

I will keep you in my prayers. Neuropathy is terrible. 💕🙏🙏🙏🙏🙏🙏

REPLY
@mcd123

I have been taking Gabapentin for several months now for severe neuropathy. Prior to,that I took lyrica. I have had numbers and tingling in my feet for many years. The pain, burning and electric shocks to my toes have increased dramatically over the last two years. On Monday my neurologist put me on Cymbalta. I took it for three days and haven't slept in two. The Cymbalta has dramatically increased my RLS. I read where this is one of the side effects. I take 0.5mg of klonopin for RLS but it did not cover the augmentation. My question is have others had this particular side effect from Cymbalta and how did they handle it. Also, has anyone else found good results from other meds similar to Cymbalta? Thanks for any and all input. Cathy

Jump to this post

Hi Cathy, I took Cymbalta for about a year (+). My doctor told me to take at night because it causes drowsiness. It ended up being the opposite for me, which he then said does happen with a small percentage of people. So I switched to taking it in the morning. I felt like it did take the edge off the pain but at the time had no idea I had SFN and decided to go off Cymbalta. Overall I just didn’t like how it made me feel (can’t really pin it down to something specific but maybe just that I felt emotionally/mentally numb). To answer your question about RLS, I never put two and two together but in hindsight I did have RLS more so then. Fast forward, I have been diagnosed with SFN/AN and my neurologist has prescribed Amitriptyline. We talked about many other options (lyrica, gabapentin, etc) but I’m pretty sensitive to drugs, so we decided to give amitriptyline a try. I started on a low dose and am gradually working my way up. With each increase, I notice slight improvements.

I hope you find something that works well for you. Take care.

REPLY
@boltz7555

Hi Cathy, I took Cymbalta for about a year (+). My doctor told me to take at night because it causes drowsiness. It ended up being the opposite for me, which he then said does happen with a small percentage of people. So I switched to taking it in the morning. I felt like it did take the edge off the pain but at the time had no idea I had SFN and decided to go off Cymbalta. Overall I just didn’t like how it made me feel (can’t really pin it down to something specific but maybe just that I felt emotionally/mentally numb). To answer your question about RLS, I never put two and two together but in hindsight I did have RLS more so then. Fast forward, I have been diagnosed with SFN/AN and my neurologist has prescribed Amitriptyline. We talked about many other options (lyrica, gabapentin, etc) but I’m pretty sensitive to drugs, so we decided to give amitriptyline a try. I started on a low dose and am gradually working my way up. With each increase, I notice slight improvements.

I hope you find something that works well for you. Take care.

Jump to this post

Hello @boltz7555, Welcome to Connect. Thanks for sharing your experience with Cymbalta. Do you mind sharing a little more about your diagnosis and the symptoms, have you tried any alternative treatments?

REPLY
@johnbishop

Hello @boltz7555, Welcome to Connect. Thanks for sharing your experience with Cymbalta. Do you mind sharing a little more about your diagnosis and the symptoms, have you tried any alternative treatments?

Jump to this post

Hi @johnbishop – sure, thank you for asking. I apologize in advance as I imagine this reply may get a bit wordy. For reference, I am a 44 year old female. I was just diagnosed with small fiber / autonomic neuropathy last month. However, I now believe my symptoms started as a child. For as long as I can remember, I’ve had quick sharp pains, twinges, tingling, etc. and my mom would say they’re growing pains. I’m pretty sure I haven’t grown an inch (maybe shrunk 😊) in the last 30 years, though I have always experienced those “growing pains”. Additionally, I was diagnosed with IBS, menstrual disorder and arrhythmia/irregular heartbeat all in my early 20’s. I’ve had chronic daily headaches for as long as I can remember. My neurologist said all but the headaches are related to the autonomic neuropathy. Prior to my SFN/AN diagnosis, I was going to my primary doctor more frequently because the widespread pain, depression and headaches seemed to be increasing. My primary prescribed Cymbalta to treat the pain and depression. It helped but overall I did not like it, as I mentioned. I went off the prescribed medication for several months except OTC (Advil/Tylenol) which didn’t help at all. I tried 100mg of gabapentin and it made me extra groggy with no benefit. I went back to my primary and she suggested I try low dose Amitriptyline (10mg) since I am very sensitive to medication. It took some time to adjust to the medication and definitely helps me sleep; I take it about an hour before bed. It didn’t do much for the pain but it helped my moods. Since it didn’t help with pain, my primary referred me to a rheumatologist in July 2021 who diagnosed me with fibromyalgia but suggested that I also see a neurologist. That’s where I finally started to get answers. I had my first appointment with the neurologist in Aug 2021 and he immediately suspected SFN. I really don’t think I had ever heard of SFN until he mentioned it. He scheduled a punch biopsy, one on my upper thigh and one just above my ankle. Results came back positive with the official diagnosis last month, Sept 2021. My neurologist and I talked about options to treat the symptoms and since I am too sensitive to gabapentin, we agreed to increase my dosage of Amitriptyline to 20mg (double). He said that’s still way low to treat SFN pain but we will continue a gradual increase. I have noticed a difference with the increased dose, although not a moment goes by that is pain free. I am adopted so I don’t have family medical history, although I am slowly learning a little about my DNA/family history (that “wordy” story belongs on some other forum 😊). I don’t have diabetes or any known underlying cause for the SFN so my neurologist has me going through a lot of tests to rule everything out before deeming it “idiopathic”. Lots of bloodwork, MRI, MRA, EEG and the full download with a cardiologist (EKG, echocardiogram, etc). My follow up appointment with the neurologist is 12/6/2021, which will give me time to get through all the tests and for the results to come back. I’m relieved to be getting some answers after years of not knowing why I experience the symptoms I have and even just now realizing that some of what I experience isn’t “normal” because I’ve lived with it for so long. Yet, I’m also a little anxious about what it all means, how it will progress, what my symptoms will be like in the future. But I am hopeful now as I finally have some answers. It’s a start. I’m grateful for this forum and the stories/experiences people are willing to share. ~Robyn

REPLY
@boltz7555

Hi @johnbishop – sure, thank you for asking. I apologize in advance as I imagine this reply may get a bit wordy. For reference, I am a 44 year old female. I was just diagnosed with small fiber / autonomic neuropathy last month. However, I now believe my symptoms started as a child. For as long as I can remember, I’ve had quick sharp pains, twinges, tingling, etc. and my mom would say they’re growing pains. I’m pretty sure I haven’t grown an inch (maybe shrunk 😊) in the last 30 years, though I have always experienced those “growing pains”. Additionally, I was diagnosed with IBS, menstrual disorder and arrhythmia/irregular heartbeat all in my early 20’s. I’ve had chronic daily headaches for as long as I can remember. My neurologist said all but the headaches are related to the autonomic neuropathy. Prior to my SFN/AN diagnosis, I was going to my primary doctor more frequently because the widespread pain, depression and headaches seemed to be increasing. My primary prescribed Cymbalta to treat the pain and depression. It helped but overall I did not like it, as I mentioned. I went off the prescribed medication for several months except OTC (Advil/Tylenol) which didn’t help at all. I tried 100mg of gabapentin and it made me extra groggy with no benefit. I went back to my primary and she suggested I try low dose Amitriptyline (10mg) since I am very sensitive to medication. It took some time to adjust to the medication and definitely helps me sleep; I take it about an hour before bed. It didn’t do much for the pain but it helped my moods. Since it didn’t help with pain, my primary referred me to a rheumatologist in July 2021 who diagnosed me with fibromyalgia but suggested that I also see a neurologist. That’s where I finally started to get answers. I had my first appointment with the neurologist in Aug 2021 and he immediately suspected SFN. I really don’t think I had ever heard of SFN until he mentioned it. He scheduled a punch biopsy, one on my upper thigh and one just above my ankle. Results came back positive with the official diagnosis last month, Sept 2021. My neurologist and I talked about options to treat the symptoms and since I am too sensitive to gabapentin, we agreed to increase my dosage of Amitriptyline to 20mg (double). He said that’s still way low to treat SFN pain but we will continue a gradual increase. I have noticed a difference with the increased dose, although not a moment goes by that is pain free. I am adopted so I don’t have family medical history, although I am slowly learning a little about my DNA/family history (that “wordy” story belongs on some other forum 😊). I don’t have diabetes or any known underlying cause for the SFN so my neurologist has me going through a lot of tests to rule everything out before deeming it “idiopathic”. Lots of bloodwork, MRI, MRA, EEG and the full download with a cardiologist (EKG, echocardiogram, etc). My follow up appointment with the neurologist is 12/6/2021, which will give me time to get through all the tests and for the results to come back. I’m relieved to be getting some answers after years of not knowing why I experience the symptoms I have and even just now realizing that some of what I experience isn’t “normal” because I’ve lived with it for so long. Yet, I’m also a little anxious about what it all means, how it will progress, what my symptoms will be like in the future. But I am hopeful now as I finally have some answers. It’s a start. I’m grateful for this forum and the stories/experiences people are willing to share. ~Robyn

Jump to this post

Good evening Robyn, @boltz7555. That's quite a story and thank you for sharing. It does sound like you ae reaching the end of the diagnostic phase. Will you please continue to share the results from your neurologist and the impact of any treatments that are recommended? This will help the virtually hundreds of folks who will read your continuing story. I am hoping that you will discover the value of a shared partnership with your clinicians and providers.

May you be free of suffering and the causes of suffering.
Chris

REPLY
@artscaping

Good evening Robyn, @boltz7555. That's quite a story and thank you for sharing. It does sound like you ae reaching the end of the diagnostic phase. Will you please continue to share the results from your neurologist and the impact of any treatments that are recommended? This will help the virtually hundreds of folks who will read your continuing story. I am hoping that you will discover the value of a shared partnership with your clinicians and providers.

May you be free of suffering and the causes of suffering.
Chris

Jump to this post

Hi Chris @artscaping – yes absolutely, thank you. There is another thing I want to mention, as I am not sure if it’s of any significance or not but really helped me. About 5 years ago, my primary ran some bloodwork and found I was significantly deficient in vitamin D3. She put me on a mega dose (50k IU’s) and after just the first dose, I noticed a huge improvement in the constant arm pain I had experienced for 6+ months. I thought the pain was a pinched nerve, perhaps stemming from my shoulder but scans showed no issues with my shoulder/arm. I now believe it to be nerve pain from neuropathy. Vitamin D wasn’t a cure but having healthy vitamin D levels certainly helped my pain and depression. Something for others to look into, although it may be a “standard” thing to look for in patients. Regards, Robyn

REPLY
@skeleton

I will keep you in my prayers. Neuropathy is terrible. 💕🙏🙏🙏🙏🙏🙏

Jump to this post

Thank you @skeleton !! I very much believe in the power of prayer!

REPLY
@johnbishop

Thank you for sharing your journey. I know it has to be extremely difficult to deal with your pain and other symptoms. I do think it helps to share with folks that can understand what you are going through as many have similar conditions. You mentioned being nauseous most of the time and not being able to take in enough food/calories and also have problems getting enough sleep. Has your doctor offered any suggestions for either? I think those two things are pretty important for helping your body with any kind of recovery process. Keep taking it one day at a time, one step at a time… Hoping you find some relief soon.

Jump to this post

Hi @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.

REPLY

My 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.

REPLY
@dantic123

My 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.

Jump to this post

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

REPLY
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