Hi ALL,
I have been on a Chronic pain group and I ran across this one recently. I have had peripheral neuropathy for at least 12 years. At first it started with restless legs, then gradually started in my feet, burning, tingling then progressed to extreme burning,stabbing pain. my knees and my hands. I would cry and walk. Tylenol helped some, And just recently has progressed up to knees and hands. Finally went to an orthopedic pain Dr. He diagnosed me with peripheral neuropathy. I had an event that had me admitted to the hospital. During that visit a neurologist was checking me over and asked if I had taken gabapentin for the neuropothy. I was given a 300mg with a 50mg of tramadol, and had the best sleep I had had in years. so I started taking 300 mgs a day now I have progressed to 600mg 4 times a day, sometimes more, if I have to. That doesn't happen as much as it used to. But I always take a 50mg of tramadol with the gabapentin. I have tried taking it without the tramadol, with tylenol, but the gabapentin does not seem to work as well without the tramadol.
I am told that I have that I have peripheral neuropathy because of cervical neck surgery, nerve damage to my upper spinal cord because of bone spurs. And I have severe spinal stenosis in my lower back.. I have tried to get cymbalta that was prescribed by my present pain Dr, but since I do not have drug insurance, I could not afford it....$360 for month supply. The neuropothy gets worse at night. Many nights I cannot sleep even when taking meds. Walking seems to help, something about the pressure that seems to help/ Many times I cannot walk because I cannot feel my feet, that is usually when I have waited too long before taking my meds. I use a rolling walker most all the time, it helps when I cannot feel my feet, and my balance is very iffy. I feel so very bad for those who are suffering with this. Hope any of this sharing helps.
PEACE & LOVE..JJ
Hi ALL,
I have been on a Chronic pain group and I ran across this one recently. I have had peripheral neuropathy for at least 12 years. At first it started with restless legs, then gradually started in my feet, burning, tingling then progressed to extreme burning,stabbing pain. my knees and my hands. I would cry and walk. Tylenol helped some, And just recently has progressed up to knees and hands. Finally went to an orthopedic pain Dr. He diagnosed me with peripheral neuropathy. I had an event that had me admitted to the hospital. During that visit a neurologist was checking me over and asked if I had taken gabapentin for the neuropothy. I was given a 300mg with a 50mg of tramadol, and had the best sleep I had had in years. so I started taking 300 mgs a day now I have progressed to 600mg 4 times a day, sometimes more, if I have to. That doesn't happen as much as it used to. But I always take a 50mg of tramadol with the gabapentin. I have tried taking it without the tramadol, with tylenol, but the gabapentin does not seem to work as well without the tramadol.
I am told that I have that I have peripheral neuropathy because of cervical neck surgery, nerve damage to my upper spinal cord because of bone spurs. And I have severe spinal stenosis in my lower back.. I have tried to get cymbalta that was prescribed by my present pain Dr, but since I do not have drug insurance, I could not afford it....$360 for month supply. The neuropothy gets worse at night. Many nights I cannot sleep even when taking meds. Walking seems to help, something about the pressure that seems to help/ Many times I cannot walk because I cannot feel my feet, that is usually when I have waited too long before taking my meds. I use a rolling walker most all the time, it helps when I cannot feel my feet, and my balance is very iffy. I feel so very bad for those who are suffering with this. Hope any of this sharing helps.
PEACE & LOVE..JJ
Hello Paula (@paulagershoony), welcome to the Anyone here dealing with peripheral neuropathy? discussion. May I ask what kind of neuropathy you have? I have idiopathic small fiber peripheral neuropathy but the only symptoms I have are numbness in the feet and no real pain. The neurologist said he thought it was hereditary.
For those of you living in and around the Minneapolis, Minnesota area, the Minnesota Neuropathy Association's next meeting is on Saturday, March 25th and looks to be an interesting topic. I attached a meeting flyer and directions.
Medical Cannabis – what’s it all about?
Our speakers on March 25 are Dr. Gary Starr, one of the co-founders of the cannabis
manufacturer LeafLine Labs, and our Board member, Mary McLeod. Both will talk about
the use of cannabis in addressing neuropathic pain.
Mary has used it as a peripheral neuropathy patient, and will tell us of the process
involved in applying for the state cannabis registry, and her experience as a consumer.
Dr. Starr will address the origins of the medical cannabis industry in Minnesota, the
research involved in setting up their labs, and their reasons for going into this business.
He will also review the variety of pain and other medical problems with which they have
worked, the general results these trials have shown, their specific experiences with
neuropathic patients, and where they expect to go from here.
Meeting location:
St. Michael’s Lutheran Church
9201 Normandale Boulevard,
Bloomington, MN 55437
For those of you living in and around the Minneapolis, Minnesota area, the Minnesota Neuropathy Association's next meeting is on Saturday, March 25th and looks to be an interesting topic. I attached a meeting flyer and directions.
Medical Cannabis – what’s it all about?
Our speakers on March 25 are Dr. Gary Starr, one of the co-founders of the cannabis
manufacturer LeafLine Labs, and our Board member, Mary McLeod. Both will talk about
the use of cannabis in addressing neuropathic pain.
Mary has used it as a peripheral neuropathy patient, and will tell us of the process
involved in applying for the state cannabis registry, and her experience as a consumer.
Dr. Starr will address the origins of the medical cannabis industry in Minnesota, the
research involved in setting up their labs, and their reasons for going into this business.
He will also review the variety of pain and other medical problems with which they have
worked, the general results these trials have shown, their specific experiences with
neuropathic patients, and where they expect to go from here.
Meeting location:
St. Michael’s Lutheran Church
9201 Normandale Boulevard,
Bloomington, MN 55437
@suzeebee227 the meeting was actually last year 3/25/2017. I just missed their last meeting on Feb 24th but will post their next meeting here when it's scheduled. Their website posts the meetings and other information - http://neuropathy-mn.org/
For those of you living in and around the Minneapolis, Minnesota area, the Minnesota Neuropathy Association's next meeting is on Saturday, March 25th and looks to be an interesting topic. I attached a meeting flyer and directions.
Medical Cannabis – what’s it all about?
Our speakers on March 25 are Dr. Gary Starr, one of the co-founders of the cannabis
manufacturer LeafLine Labs, and our Board member, Mary McLeod. Both will talk about
the use of cannabis in addressing neuropathic pain.
Mary has used it as a peripheral neuropathy patient, and will tell us of the process
involved in applying for the state cannabis registry, and her experience as a consumer.
Dr. Starr will address the origins of the medical cannabis industry in Minnesota, the
research involved in setting up their labs, and their reasons for going into this business.
He will also review the variety of pain and other medical problems with which they have
worked, the general results these trials have shown, their specific experiences with
neuropathic patients, and where they expect to go from here.
Meeting location:
St. Michael’s Lutheran Church
9201 Normandale Boulevard,
Bloomington, MN 55437
Hi again John,
Sorry about that. I'll have to pay more attention to the dates but I will be anticipating and looking forward to the next meeting.
Thank you so much.
For those of you living in and around the Minneapolis, Minnesota area, the Minnesota Neuropathy Association's next meeting is on Saturday, March 25th and looks to be an interesting topic. I attached a meeting flyer and directions.
Medical Cannabis – what’s it all about?
Our speakers on March 25 are Dr. Gary Starr, one of the co-founders of the cannabis
manufacturer LeafLine Labs, and our Board member, Mary McLeod. Both will talk about
the use of cannabis in addressing neuropathic pain.
Mary has used it as a peripheral neuropathy patient, and will tell us of the process
involved in applying for the state cannabis registry, and her experience as a consumer.
Dr. Starr will address the origins of the medical cannabis industry in Minnesota, the
research involved in setting up their labs, and their reasons for going into this business.
He will also review the variety of pain and other medical problems with which they have
worked, the general results these trials have shown, their specific experiences with
neuropathic patients, and where they expect to go from here.
Meeting location:
St. Michael’s Lutheran Church
9201 Normandale Boulevard,
Bloomington, MN 55437
another group I can identify with and hopefully learn from. My neuropathy began during my first chemo treatment. It had been mentioned as a lesser side-effect So of course I suffered from it, got so it was all the way up my left leg and both feet. Was just starting in hands when I finished chemo. They had said it might get better but wouldn't go away and it hasn't. It is mostly my feet now but it seems to be getting worse. The pain is almost constant with some needle like pain shooting thru my feet occasionally the dr.s have taken an "oh well" kind of attitude but I don't complain to them much. But I am going to mention it this visit because the cramping and toe joints kind of lock up it is really painful and getting worse.
I haven't seen anyone talk about cramping was hoping to learn a lot more about it from others in this group am hoping to get some info here.
P.S. has been two years since my first chemo and just recently did a partial round but we stopped after 4 treatments. Different drugs this time nothing said about neuropathy
Hello @allisonsnow, I have small fiber peripheral neuropathy with numbness but no pain. I used to often get bad leg cramps because I wasn't drinking enough water and keeping hydrated. Dehydration is one of the things that can cause muscle cramps.
I’m also tagging @martid@jerrybecker@philippe who have also talked about managing chemo-related neuropathy here on Connect. I hope they will share their thoughts and experiences with you.
another group I can identify with and hopefully learn from. My neuropathy began during my first chemo treatment. It had been mentioned as a lesser side-effect So of course I suffered from it, got so it was all the way up my left leg and both feet. Was just starting in hands when I finished chemo. They had said it might get better but wouldn't go away and it hasn't. It is mostly my feet now but it seems to be getting worse. The pain is almost constant with some needle like pain shooting thru my feet occasionally the dr.s have taken an "oh well" kind of attitude but I don't complain to them much. But I am going to mention it this visit because the cramping and toe joints kind of lock up it is really painful and getting worse.
I haven't seen anyone talk about cramping was hoping to learn a lot more about it from others in this group am hoping to get some info here.
P.S. has been two years since my first chemo and just recently did a partial round but we stopped after 4 treatments. Different drugs this time nothing said about neuropathy
I am so sorry to hear of the cramps and that feeling that things are locking-up. I would encourage you to tell your doc that you want physical therapy. There are certain stretches you can do which will give you some relief from this (won't cure it completely). I also have the tightening of the muscle, tingling and locking-up feeling (from a Parkinson disorder) and I've been told by PTs that the stretches must be held for 30 seconds in order to get relief.
You sometimes have to push for the treatment that you need. I hope that you find some help for this.
another group I can identify with and hopefully learn from. My neuropathy began during my first chemo treatment. It had been mentioned as a lesser side-effect So of course I suffered from it, got so it was all the way up my left leg and both feet. Was just starting in hands when I finished chemo. They had said it might get better but wouldn't go away and it hasn't. It is mostly my feet now but it seems to be getting worse. The pain is almost constant with some needle like pain shooting thru my feet occasionally the dr.s have taken an "oh well" kind of attitude but I don't complain to them much. But I am going to mention it this visit because the cramping and toe joints kind of lock up it is really painful and getting worse.
I haven't seen anyone talk about cramping was hoping to learn a lot more about it from others in this group am hoping to get some info here.
P.S. has been two years since my first chemo and just recently did a partial round but we stopped after 4 treatments. Different drugs this time nothing said about neuropathy
I used to have severe leg cramps, but when on a medical mission where we ate Avocados daily, I suddenly realized I had none. I now be sure I have calcium with magnesium and potassium supplements as well as avocados and bananas regularly in my diet. the only time I have leg cramps now is if I forget to do any of these. I hope this might be a simple fix for you - at least it is worth a try.
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So sorry , sounds like your living my life!
Hello Paula (@paulagershoony), welcome to the Anyone here dealing with peripheral neuropathy? discussion. May I ask what kind of neuropathy you have? I have idiopathic small fiber peripheral neuropathy but the only symptoms I have are numbness in the feet and no real pain. The neurologist said he thought it was hereditary.
John
Thanks for the info for the meeting on 3/25/18, I don't see a time for it. Could you please let us know? I would love to go.
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1 Reaction@suzeebee227 the meeting was actually last year 3/25/2017. I just missed their last meeting on Feb 24th but will post their next meeting here when it's scheduled. Their website posts the meetings and other information - http://neuropathy-mn.org/
John
Hi again John,
Sorry about that. I'll have to pay more attention to the dates but I will be anticipating and looking forward to the next meeting.
Thank you so much.
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1 ReactionI think the next meeting is the last week in March but will post it when they send me the date and time.
another group I can identify with and hopefully learn from. My neuropathy began during my first chemo treatment. It had been mentioned as a lesser side-effect So of course I suffered from it, got so it was all the way up my left leg and both feet. Was just starting in hands when I finished chemo. They had said it might get better but wouldn't go away and it hasn't. It is mostly my feet now but it seems to be getting worse. The pain is almost constant with some needle like pain shooting thru my feet occasionally the dr.s have taken an "oh well" kind of attitude but I don't complain to them much. But I am going to mention it this visit because the cramping and toe joints kind of lock up it is really painful and getting worse.
I haven't seen anyone talk about cramping was hoping to learn a lot more about it from others in this group am hoping to get some info here.
P.S. has been two years since my first chemo and just recently did a partial round but we stopped after 4 treatments. Different drugs this time nothing said about neuropathy
Thanks to anyone here that can help me !
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3 ReactionsHello @allisonsnow, I have small fiber peripheral neuropathy with numbness but no pain. I used to often get bad leg cramps because I wasn't drinking enough water and keeping hydrated. Dehydration is one of the things that can cause muscle cramps.
-- https://www.mayoclinic.org/symptoms/night-leg-cramps/basics/causes/sym-20050813
There is also a discussion in the Cancer Group - "Does anyone have a treatment for Neuropathy due to chemo" that you might want to read through here:
-- https://connect.mayoclinic.org/discussion/does-anyone-have-a-treatment-for-nueropathy-due-to-chemo/
Are you finished chemo now?
I’m also tagging @martid @jerrybecker @philippe who have also talked about managing chemo-related neuropathy here on Connect. I hope they will share their thoughts and experiences with you.
John
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4 Reactions@allisonsnow Hi Allison,
I am so sorry to hear of the cramps and that feeling that things are locking-up. I would encourage you to tell your doc that you want physical therapy. There are certain stretches you can do which will give you some relief from this (won't cure it completely). I also have the tightening of the muscle, tingling and locking-up feeling (from a Parkinson disorder) and I've been told by PTs that the stretches must be held for 30 seconds in order to get relief.
You sometimes have to push for the treatment that you need. I hope that you find some help for this.
Teresa
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3 ReactionsI used to have severe leg cramps, but when on a medical mission where we ate Avocados daily, I suddenly realized I had none. I now be sure I have calcium with magnesium and potassium supplements as well as avocados and bananas regularly in my diet. the only time I have leg cramps now is if I forget to do any of these. I hope this might be a simple fix for you - at least it is worth a try.
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Helpful -
Hug
3 Reactions