Good morning all. I'm finally scheduled for Mayo's 3 week pain rehabilitation program to begin June 18th through July 9th. I'm overwhelmed, excited, happy, scared, concerned etc...Covid has turned things upside down. Also, I am faced with anxiety simply because it will be a daunting task physically and mentally. M-F 8:30-4:30 for 3 weeks.
It's taken over a year to get to Mayo and I'm very grateful that I'm going, dont get me wrong. I know I will be in the best place possible for proper evaluation, support and encouragement. I will fall back on my tools of diaphragmatic breathing, meditation and mindfulness. I will pull up my BIG girl pants and make it happen!
Be well and I hope everyone has a manageable day. 😊
Rachel
Very best of luck Rachel. My wife Linda and I are VERY interested in your experience with this. We watched the video yesterday with Dr. Sletten which you had mentioned. I must admit I did not really understand some (much) of what he was talking about but I was surprised that Linda seemed to get quite a bit out of it and was enthused about it. I guess I need to see it again. Anyway, will be interested in your adventure in Fla. Wow, 8 hours/day for 3 weeks, that sounds very intense! But exciting also. Rachel, could you remind me a little about your pain situation again and where you have the worst of it. Thanks, Hank
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. 😉
Very best of luck Rachel. My wife Linda and I are VERY interested in your experience with this. We watched the video yesterday with Dr. Sletten which you had mentioned. I must admit I did not really understand some (much) of what he was talking about but I was surprised that Linda seemed to get quite a bit out of it and was enthused about it. I guess I need to see it again. Anyway, will be interested in your adventure in Fla. Wow, 8 hours/day for 3 weeks, that sounds very intense! But exciting also. Rachel, could you remind me a little about your pain situation again and where you have the worst of it. Thanks, Hank
that is wonderful news Rachel! I wish you the best of luck, you will do great because you have all the mental tools and positive attitude needed already. 😁 Helen
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. 😉
I know everyone's situation is different. I can only attest that PT therapy and yoga and a some needling helped me "cure" my pudendal compression/neuralgia very quickly (8-10 weeks). And I was in pain. I cannot take pills hardly at all due to my general sensitivity and psychology. Wishing you the best!
Good morning all. I'm finally scheduled for Mayo's 3 week pain rehabilitation program to begin June 18th through July 9th. I'm overwhelmed, excited, happy, scared, concerned etc...Covid has turned things upside down. Also, I am faced with anxiety simply because it will be a daunting task physically and mentally. M-F 8:30-4:30 for 3 weeks.
It's taken over a year to get to Mayo and I'm very grateful that I'm going, dont get me wrong. I know I will be in the best place possible for proper evaluation, support and encouragement. I will fall back on my tools of diaphragmatic breathing, meditation and mindfulness. I will pull up my BIG girl pants and make it happen!
Be well and I hope everyone has a manageable day. 😊
Rachel
@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
Connect
Connect
Like
Helpful
Hug
@rwinney -- Happy dance indeed!! You have your friends here a mouse click away for support 🙂
Did you see this?
Pain Rehab FL Graduates Answer Frequently Asked Questions: https://www.youtube.com/watch?v=40Njc4X90fE
-
Like -
Helpful -
Hug
2 ReactionsHello 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. 😉
-
Like -
Helpful -
Hug
3 ReactionsThank you Linda! Fingers crossed
-
Like -
Helpful -
Hug
2 ReactionsAnd a big thank you to both you and your wife for your vote of confidence in my journey to Mayo.
-
Like -
Helpful -
Hug
1 ReactionThanks so much John. I sure know I do and I appreciate it very much. Yes, I have read that link. Thank you. Highly successful, I am hopeful!
-
Like -
Helpful -
Hug
1 ReactionAw, thanks Helen. I appreciate your kind words and support.
-
Like -
Helpful -
Hug
1 Reaction@rwinney . You have such a great attitude I know you will be o.k.
-
Like -
Helpful -
Hug
2 Reactions👍🏼
-
Like -
Helpful -
Hug
1 ReactionI know everyone's situation is different. I can only attest that PT therapy and yoga and a some needling helped me "cure" my pudendal compression/neuralgia very quickly (8-10 weeks). And I was in pain. I cannot take pills hardly at all due to my general sensitivity and psychology. Wishing you the best!
-
Like -
Helpful -
Hug
2 Reactions@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
-
Like -
Helpful -
Hug
3 Reactions