@rwinney Hi Rachel, I am so happy you are going to Mayo. I hope to God they help you! They will take everything out of their tool box to help. Let us all know what happens, and please do write from there, if you can! Love to you, Lori
Hello Hank
I have Small Fiber Polyneuropathy, chronic migraines and photophobia (eye surgeries in the past to restore my vision). I feel my body now has Central Sensitization as well. Not sure how else all is explained (hence Mayo Clinic). At this stage of my neuropathy, pins/needles, numbness, sensations have been turned down to a low roar with Lyrica and supplements. They appear less often but do flare. My thighs burn, back spasms, leg and arm muscles twitch, calves get intense pain and are weak, neck/shoulders/arms burn and are weak, arms still go numb and tingly when sleeping on them, toe pains with wrong pressure, random pains spring up in hands and wrists along with weakness and aching. I wake in pain from my bed which can be anything from a back and hip flare, which may last days to weeks making it hard to walk, or my neck and shoulder pain flares alone or into migraine. I refer to my legs dying last year because they slowly lost ability to walk a normal distance without pain, locking in the hips, feeling like they turned to cement. They ache profusely when pushing to use. I sleep 50/50 between bed and recliner depending on day and body circumstance. I take hydrocodone for pain and when that doesn't cut it alone, I use medical marijuana. I've researched and come to a conclusion that this all may be bigger than just neuropathy alone. That's why Dr. Slettons video lined up for me. I check all the boxes. 7 years ago my life changed with eye surgeries, then 4 years ago with neck pain then migraines then neuropathy. If I recall your wife does not meds. That's a challenge depending on her pain. I have mitigating factors and the biggest is an opiod. We all know the evil they possess...however, this is a catch 22 for me. It's a love/hate relationship and I need Mayo to prove to me that I dont need them. I've tried again and again to prove this to myself. Problem is my body is addicted after 3 years on them so on my better days when I work so hard to not take them, I feel the effects of chills or sweats. I hate something having a hold over me like that. Heres the thing though, I have way more pain days and they are a life saver to me. Only time will tell. Bottom line is, if I use my body, I hurt and I'm not about to sit around to save myself from pain, that dormancy only creates more pain. So it is desperately about finding balance between rest/activity and body/mind with the help of proper, helpful medications. Sorry to go on and on. Hurts my hands but I'm a glutton for punishment, a die hard. Pacing is not my forte, yet I work hard on it every day. The new book I read reminded me that I'm a challenging makeup....type A personality and perfectionist! Ughhh....I'll admit it. 😉
Rachel, we knew you were dealing with a lot but this gives us a clear picture of it, thank-you for describing it in detail. It is incredible that you seem to be able to stay a pretty positive person overall while dealing with SO MUCH.
Yes, Linda does not take any type of drugs or other medications as she can't take the side effects. She is also allergic to all painkillers such as aspirin, ibuprofen, Tylenol or any of the others. She is allergic to a number of other things as well (including all antihistamines). The one thing that gives her relief is marijuana, but she will only use it up to twice a week as it loses its effectiveness if she does it too often. She is trying to incorporate kratom but has been having some trouble with it so far. Interestingly she finds if she has a strong drink on a given day (she only will drink twice a week max) she usually has a good pain day on the day following the drink day (figure that one out). She says she got a lot from Dr. Sletton's video and she can't wait to hear how you do at the 3 week Mayo thing. I think there are so many people that are interested here that you'd have an avid following if you decided to post a daily blog while there.
Rachel, we knew you were dealing with a lot but this gives us a clear picture of it, thank-you for describing it in detail. It is incredible that you seem to be able to stay a pretty positive person overall while dealing with SO MUCH.
Yes, Linda does not take any type of drugs or other medications as she can't take the side effects. She is also allergic to all painkillers such as aspirin, ibuprofen, Tylenol or any of the others. She is allergic to a number of other things as well (including all antihistamines). The one thing that gives her relief is marijuana, but she will only use it up to twice a week as it loses its effectiveness if she does it too often. She is trying to incorporate kratom but has been having some trouble with it so far. Interestingly she finds if she has a strong drink on a given day (she only will drink twice a week max) she usually has a good pain day on the day following the drink day (figure that one out). She says she got a lot from Dr. Sletton's video and she can't wait to hear how you do at the 3 week Mayo thing. I think there are so many people that are interested here that you'd have an avid following if you decided to post a daily blog while there.
@jesfactsmon I feel bad about Linda's allergies. How difficult that must be. Thankfully marijuana and alcohol provides relief for her, here and there. I will indeed post as I can. I'm pretty open and honest so no problem taking others along to learn.
Hi, I'm new to the group. I suffer from idopathic peripheral neuropathy so I'm very interested in what works for others that I could try. However, I'm frustrated in my quest because so many of the participants use shortcuts to identify different therapies or medicines they use. I have no idea what DRG, SCS and all the other abreviations mean. I realize that many of you have been on this site for some time and I'm sorry for the pain you're experiencing. If you could, the first time you mention one of these items please spell out what the letters stand for then in () add the abreviation after the words. Then to your heart's content go ahead and use the abreviations.
Thanks
James
@jamesinsonoma Hi James and welcome to Connect. I'm sorry to hear of your diagnosis. I have small fiber polyneuropathy from a B12 deficiency. I have full body pain that is debilitating. I take Norco (hydrocodone), medical marijuana and Lyrica, along with a plethora of supplements such as R- Alpha Lipoic Acid, Acetyl L Carnitine, magnesium, B12, Omega 3, Hemp oil, etc... Let me know if you have any further questions. Be well.
Rachel
@jesfactsmon I feel bad about Linda's allergies. How difficult that must be. Thankfully marijuana and alcohol provides relief for her, here and there. I will indeed post as I can. I'm pretty open and honest so no problem taking others along to learn.
@jesfactsmon Hi Hank, I have read so much about Central Sensitization and with all of Linda's allergies/med intolerances, I would imagine she does have Central Sensitization. One of the characteristics of this disorder is an intolerance to chemicals. There can also be intolerances to loud sound, too much light.... just thought I would give you this info. I am pretty sure I have it, too. Not easy. Lori
@jesfactsmon Hi Hank, I have read so much about Central Sensitization and with all of Linda's allergies/med intolerances, I would imagine she does have Central Sensitization. One of the characteristics of this disorder is an intolerance to chemicals. There can also be intolerances to loud sound, too much light.... just thought I would give you this info. I am pretty sure I have it, too. Not easy. Lori
@lorirenee1 I will second that possibility for Linda. Great call. I'm a migraine sufferer but even without one, I am intolerant to smell, light, noise, chaos...been like this for quite a while now and it has increased since my neuropathy. My body is oversensitive to the littlest things like bumping my hand or a tiny cut, etc..
Conflicting, between my eye disease, chronic migraine and neuropathy. Too much trauma, too much stress, too much pain. It scientifically makes sense.
Lori, have you watched Dr. Slettons video? I first saw it in February and a lightbulb went off. I sat watching it with my husband and our jaws both dropped. I had no idea this diagnosis existed but, it sure made sense for me, finally.
Connect
Connect
Like
Helpful
Hug
Thanks my friend. Oh you bet I will! I'll have weekends off, woo hoooo! A disabled girl, in Covid times, stuck in a hotel. 🤪
-
Like -
Helpful -
Hug
2 ReactionsRachel, we knew you were dealing with a lot but this gives us a clear picture of it, thank-you for describing it in detail. It is incredible that you seem to be able to stay a pretty positive person overall while dealing with SO MUCH.
Yes, Linda does not take any type of drugs or other medications as she can't take the side effects. She is also allergic to all painkillers such as aspirin, ibuprofen, Tylenol or any of the others. She is allergic to a number of other things as well (including all antihistamines). The one thing that gives her relief is marijuana, but she will only use it up to twice a week as it loses its effectiveness if she does it too often. She is trying to incorporate kratom but has been having some trouble with it so far. Interestingly she finds if she has a strong drink on a given day (she only will drink twice a week max) she usually has a good pain day on the day following the drink day (figure that one out). She says she got a lot from Dr. Sletton's video and she can't wait to hear how you do at the 3 week Mayo thing. I think there are so many people that are interested here that you'd have an avid following if you decided to post a daily blog while there.
-
Like -
Helpful -
Hug
1 ReactionKeep in touch. We may all learn a lot through your involvement at the Mayo facility in Florida.
-
Like -
Helpful -
Hug
1 Reaction@jesfactsmon I feel bad about Linda's allergies. How difficult that must be. Thankfully marijuana and alcohol provides relief for her, here and there. I will indeed post as I can. I'm pretty open and honest so no problem taking others along to learn.
Congrats and please let us know what they do there ! Peggy
-
Like -
Helpful -
Hug
1 ReactionThank you Peggy. Will do.
@jamesinsonoma Hi James and welcome to Connect. I'm sorry to hear of your diagnosis. I have small fiber polyneuropathy from a B12 deficiency. I have full body pain that is debilitating. I take Norco (hydrocodone), medical marijuana and Lyrica, along with a plethora of supplements such as R- Alpha Lipoic Acid, Acetyl L Carnitine, magnesium, B12, Omega 3, Hemp oil, etc... Let me know if you have any further questions. Be well.
Rachel
-
Like -
Helpful -
Hug
2 ReactionsThanks Jane. It will be a big undertaking for me. I certainly will share all I can.
-
Like -
Helpful -
Hug
2 Reactions@jesfactsmon Hi Hank, I have read so much about Central Sensitization and with all of Linda's allergies/med intolerances, I would imagine she does have Central Sensitization. One of the characteristics of this disorder is an intolerance to chemicals. There can also be intolerances to loud sound, too much light.... just thought I would give you this info. I am pretty sure I have it, too. Not easy. Lori
-
Like -
Helpful -
Hug
1 Reaction@lorirenee1 I will second that possibility for Linda. Great call. I'm a migraine sufferer but even without one, I am intolerant to smell, light, noise, chaos...been like this for quite a while now and it has increased since my neuropathy. My body is oversensitive to the littlest things like bumping my hand or a tiny cut, etc..
Conflicting, between my eye disease, chronic migraine and neuropathy. Too much trauma, too much stress, too much pain. It scientifically makes sense.
Lori, have you watched Dr. Slettons video? I first saw it in February and a lightbulb went off. I sat watching it with my husband and our jaws both dropped. I had no idea this diagnosis existed but, it sure made sense for me, finally.
Wishing you a pleasant day. 🌻
Rachel