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rabbit10
@rabbit10

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Joined: Apr 07, 2016

Anyone here dealing with peripheral neuropathy?

Posted by @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

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@johnbishop

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

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I 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 !

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.

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

@allisonsnow

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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@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

@allisonsnow

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 !

Jump to this post

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.

Good Morning Everyone,
My name is Jean West and 74 yrs young. I have been dealing with neuropothy for at least 10 years. It started as many do, ini my feet, now over time is has advanced upto my knees and hands. I have been to an neurologist and was told that if Dr's could come up with a way to treat or cure this condition, they would be billionaires. My pain Dr. explained why I have it and that this particular type is perifial neuropothy. The first questions I am asked if that if I am a diabetic, and I am not. But I understand that diabeties is a big reason for this condition. My reason which has been told t ome by my Pain Dr, is that I have had so much trama to my spine top and bottom is what has caused this condition. I take 800mg + 50mg of tramadol every six hours. I set my cell phone alarm for these times so that I don't miss taking the meds, because I do sometimes forget, and catching up is very,very painful and sometimes I have to take extra meds for relief. I have learned that walking helps, just keeping my feet on the floor, so have pressure on my feet helps, I am getting scared to try to drive anymore because I cannot always feel the pedals. I have sever stenosis in my thoratic and lumbar section of my spine, I also have numerous bone spurs all up and down my spine. I have had two surgeries in my neck area due to bone spurs going into nerve canals. I have taken many injections in my spine and am about to have 4 more. I have a spine stimulator which has helped tremendously, but it only reaches to my waist. And now ithe stenosis has started in my area above that area. I am also getting catarac surgery on both eyes in June YAHOO! I am looking forward to that.
Anyone dealing with chronoic pain is a dear soul to me. We understand the devistation is does to our minds and body and everyday life. I have had pain control me, and now I take 100 Zoloft, walk as much as I can. Stay busy. I love to garden, love flowers, I do acryalic painting. I love to cook.
I have lost any kind of libidio and I am finally ok with that, and I am graqteful I have a domestic partner who understands. He has been my rock, and every once ina a while I send him off for a week or two to get away froom taking care of me. The gamapentin has made me gain weight even though I eat healthy and walk. It would probably be worse if I didn't. All I can contibute here is thaqt for me, you just have to accept that this is partof your life, you have to readjust and keep moving keep living and help each other.
PEACE AND MUCH LOVE
Jean

I am a care giver for my partner who has peripheral neuropathy. All he has been offered is pain medication. If you do the research, you will find that many times the medication will make your condition worse. We have found a facility in Charlotte, NC and you can see this on line at: http://selecthealthofthecarolinas.com. They do not give pain medication and they say they can actually help the pain of neuropathy. They use lasers and other type of treatment from Germany. We will be seeing a doctor there in mid May. We will be interviewed and we hope they will accept us and we can start treatment. We are praying that my partner can be helped. We have started a special diet of all organic foods and no artificial anything in food. The all natural foods are helping some. WE eat only all natural foods and only take vitamins and minerals that are all natural and kosher. If a cure ever is found for this problem, I feel that it will be food/nutrition related. The government will not pay for vitamin therapy because of the drug companies. If we are successful, we will be shouting about it on the internet. I wish you the best and we can feel your pain. Best of luck.

Good afternoon @jjwest I can connect with much that you said. I also have fibromyalgia and thymoma/thymic cancer. the last chemo I had we stopped half-way thru because it just wasn't working and with the side-effects wasn't worth finishing. I have had to work to get back on top of the pain a few times and it is hard to do. between the fibro, cancer, depression I take gabapentin, Cymbalta, chlorzozaxzone ( sorry about spelling) hydrocodone and hydrocontin. you would think I would be pain free but that is not the case. I take several other meds but they are related to the cancer one way or another. I can't wait until spring so I can get outdoors and garden but instead it is snowing…on top of the 14+ inches we got yesterday with terrible winds. I have also lost my libido and I feel so guilty I can tell it is not "ok" with my husband. I turned sixty this year so still a spring chicken LOL.

thank you to everyone that stood up and gave me some tips and advice.
allison

@ealanddtc

I am a care giver for my partner who has peripheral neuropathy. All he has been offered is pain medication. If you do the research, you will find that many times the medication will make your condition worse. We have found a facility in Charlotte, NC and you can see this on line at: http://selecthealthofthecarolinas.com. They do not give pain medication and they say they can actually help the pain of neuropathy. They use lasers and other type of treatment from Germany. We will be seeing a doctor there in mid May. We will be interviewed and we hope they will accept us and we can start treatment. We are praying that my partner can be helped. We have started a special diet of all organic foods and no artificial anything in food. The all natural foods are helping some. WE eat only all natural foods and only take vitamins and minerals that are all natural and kosher. If a cure ever is found for this problem, I feel that it will be food/nutrition related. The government will not pay for vitamin therapy because of the drug companies. If we are successful, we will be shouting about it on the internet. I wish you the best and we can feel your pain. Best of luck.

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Thank YOU! please keep us informed of the progress. A medication free treatment sounds so very wonderful.
PEACE & LOVE P.S. thank yoiu for being a care giver.

Alison so wonderful to hear from you. I undersstand what you mean about being outside. For me it helps so very much with dealing with pain. If I come up with more information or things that have help me I will certainly share it with you. Cancer has such a fear for all of us. I admire deeply those who battle it. My first husband did not know about it until it was too late to treat it. And that was 20 yrs ago, and medicine has advanced so much since then. I pray that you will find relief and remission.
PEACE & LOVE….Jean

@ealanddtc

I am a care giver for my partner who has peripheral neuropathy. All he has been offered is pain medication. If you do the research, you will find that many times the medication will make your condition worse. We have found a facility in Charlotte, NC and you can see this on line at: http://selecthealthofthecarolinas.com. They do not give pain medication and they say they can actually help the pain of neuropathy. They use lasers and other type of treatment from Germany. We will be seeing a doctor there in mid May. We will be interviewed and we hope they will accept us and we can start treatment. We are praying that my partner can be helped. We have started a special diet of all organic foods and no artificial anything in food. The all natural foods are helping some. WE eat only all natural foods and only take vitamins and minerals that are all natural and kosher. If a cure ever is found for this problem, I feel that it will be food/nutrition related. The government will not pay for vitamin therapy because of the drug companies. If we are successful, we will be shouting about it on the internet. I wish you the best and we can feel your pain. Best of luck.

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Eagerly awaiting your post after your partner's May visit. I tend to be suspicious of tv and print advertisements offering relief from neuropathy; however, I do find that chiropractors and osteopaths tend to be more open than most M.D.s when it comes to exploring possibilities.

I have peripheral neuropathy due to untreated pernicious anemia. B12 injections halt PA, but mine was undiagnosed until severe. Therefore nerve damage to peripheral areas will be with me forever. I have other pernicious symptoms also, but the neuropathy was the first. To diagnose PA, a blood test must be done to check the intrinsic factor in the stomach! It is not the common B12 deficiency. I take nothing for the neuropathy. Guys luck with yours. I’d like to see a good chiropractor or osteopath. How to find one?

@kareniowa

As you all know neuropathy can have many causes! My husbands neuropathy several years ago disappeared when he stopped a med he’d been on for a couple of years to prevent UTI’s that had not caused a problem in the first year or so! Since then 2 other totally unrelated meds have caused neuropathy so we feel it may be related to “fillers” that are used to produce meds! Look closely at all the meds you are on even those you’ve been on for a long time! When possible stop a med and see if neuropathy lessons after a couple of weeks. If it is a filler there is not a good way to figure that out!

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What was the med that your husband stopped taking? Thank you

@jjwest

Good Morning Everyone,
My name is Jean West and 74 yrs young. I have been dealing with neuropothy for at least 10 years. It started as many do, ini my feet, now over time is has advanced upto my knees and hands. I have been to an neurologist and was told that if Dr's could come up with a way to treat or cure this condition, they would be billionaires. My pain Dr. explained why I have it and that this particular type is perifial neuropothy. The first questions I am asked if that if I am a diabetic, and I am not. But I understand that diabeties is a big reason for this condition. My reason which has been told t ome by my Pain Dr, is that I have had so much trama to my spine top and bottom is what has caused this condition. I take 800mg + 50mg of tramadol every six hours. I set my cell phone alarm for these times so that I don't miss taking the meds, because I do sometimes forget, and catching up is very,very painful and sometimes I have to take extra meds for relief. I have learned that walking helps, just keeping my feet on the floor, so have pressure on my feet helps, I am getting scared to try to drive anymore because I cannot always feel the pedals. I have sever stenosis in my thoratic and lumbar section of my spine, I also have numerous bone spurs all up and down my spine. I have had two surgeries in my neck area due to bone spurs going into nerve canals. I have taken many injections in my spine and am about to have 4 more. I have a spine stimulator which has helped tremendously, but it only reaches to my waist. And now ithe stenosis has started in my area above that area. I am also getting catarac surgery on both eyes in June YAHOO! I am looking forward to that.
Anyone dealing with chronoic pain is a dear soul to me. We understand the devistation is does to our minds and body and everyday life. I have had pain control me, and now I take 100 Zoloft, walk as much as I can. Stay busy. I love to garden, love flowers, I do acryalic painting. I love to cook.
I have lost any kind of libidio and I am finally ok with that, and I am graqteful I have a domestic partner who understands. He has been my rock, and every once ina a while I send him off for a week or two to get away froom taking care of me. The gamapentin has made me gain weight even though I eat healthy and walk. It would probably be worse if I didn't. All I can contibute here is thaqt for me, you just have to accept that this is partof your life, you have to readjust and keep moving keep living and help each other.
PEACE AND MUCH LOVE
Jean

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Have you seen a gastroenterologist? You could have esophageal issues causing peripheral neuropathy. I have nutcracker esophagus, esophagitis eosinophilic and gastroparesis due to spinal injuries starting at age 1 and just now figuring it out, I am 49. The nutcracker and gastroparesis are motility diseases. I don't expect you to have nutcracker, it's very rare and very painful but you may want to look up the others.

@ealanddtc

I am a care giver for my partner who has peripheral neuropathy. All he has been offered is pain medication. If you do the research, you will find that many times the medication will make your condition worse. We have found a facility in Charlotte, NC and you can see this on line at: http://selecthealthofthecarolinas.com. They do not give pain medication and they say they can actually help the pain of neuropathy. They use lasers and other type of treatment from Germany. We will be seeing a doctor there in mid May. We will be interviewed and we hope they will accept us and we can start treatment. We are praying that my partner can be helped. We have started a special diet of all organic foods and no artificial anything in food. The all natural foods are helping some. WE eat only all natural foods and only take vitamins and minerals that are all natural and kosher. If a cure ever is found for this problem, I feel that it will be food/nutrition related. The government will not pay for vitamin therapy because of the drug companies. If we are successful, we will be shouting about it on the internet. I wish you the best and we can feel your pain. Best of luck.

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Diet is the only way I've been able to eliminate some of the nerve pain, you may want to try juicing as well

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