Peripheral Neuropathy: HOW TO DEAL..............

[Meode81]

Happy Gobble Tov to those around the world!!! I have a question for my Weggie BFFS! I had the lung removal/diagnosis 11 months ago. All seems to be calming down,I am final down to 10 mg f Predisone but will have another round of IV Rituxamad after the holidays. BUT I HAVE A PROBLEM I NEED TO VENT ABOUT!!! The Peripheral Neuropathy in one of my feet IS SO DAMN ANNOYING!!!. I just lost the big toenail due to this. The pain in my foot can be excruciating at times. And other times I have sensitivity pins and needles. And it feels like a damn heavy brick when I walk.... ANYONE ELSE HAVE THIS ANNOYING SIDE EFFECT LATELY? ANY IDEAS ON HOW TO COPE WITH THIS???? It's really frustrating. I am so paranoid that their is something actually "wrong" with my lower leg / foot because I cant feel it properly!!!
xoxo ~Crazy Weggie Teacher Megan :laugh:

[whatthewhat]

Hey, CWTM, just a quick note until I get to my big keyboard (who knows when ...) Yes, our daughter does have neurapathy in one of her feet & it's pretty horrible. She was on a couple of pain relievers but eventually weaned off them. Massages have been consistently helpful. She currently works on it thru PT. I am sorry you are dealing with this! - WTW

[windchime]

I have to agree with you that the neuropathy is very painful and annoying. The best thing I've found for it is Lyrica. It helps with most of the pain and pins and needle feelings. I've also tried Gabapentin, but didn't have as good of luck. There is also a medical food in pill form called Metanx. I've just started this and it takes awhile to see results. It isn't covered by insurance and current costs is $58 for 30 days and it requires a prescription. There are other meds out there that treat the symptoms of neuropathy and sometimes it's a trial and error thing. My podiatrist also prescribed a compounded cream that works. It has lidocane, gabapentin, and an anti-inflammatory among other things in it. Not covered by insurance either, but they have "help" to pay for it and it only cost me $20.

Mine has gotten progressively worse this last year and I've been searching for anything that works half way decently. Good luck and if you find anything that works please share.

[renidrag]

I have suffered with this almost since diagnosis (August 09). I was told there was some medication (pill) that could help but the side effect was weight gain and I needed no more of that. I know the numb feeling, pins and needles and I think now I am going to lose a toenail. However, four months ago when visiting the Podiatrist, she mentioned a cortisone shot in the heels of my feet. She said it was painful, however, has had good luck with it. The pain was minimal, the result elation. Am able to put heel to floor without pain to this day. Numbness and needles remain in the ball of my foot and base of toes but with this disease we take what we can get. Highly recommend this treatment. And no weight gain. No guarantee how long it will last but mine is going on four months. Good Luck, hope this helps.
Dale

[windchime]

I have suffered with this almost since diagnosis (August 09). I was told there was some medication (pill) that could help but the side effect was weight gain and I needed no more of that. I know the numb feeling, pins and needles and I think now I am going to lose a toenail. However, four months ago when visiting the Podiatrist, she mentioned a cortisone shot in the heels of my feet. She said it was painful, however, has had good luck with it. The pain was minimal, the result elation. Am able to put heel to floor without pain to this day. Numbness and needles remain in the ball of my foot and base of toes but with this disease we take what we can get. Highly recommend this treatment. And no weight gain. No guarantee how long it will last but mine is going on four months. Good Luck, hope this helps.
Dale

That shot is what my podiatrist was going to give me for plantar fasciitis, however I had no heel pain and he said it wouldn't work for the ball of the foot pain. I wasn't happy about the weight gain either, but couldn't stand the pain in my feet any more. The lesser of two evils I suppose. Glad the shots are working on part of your foot. When you massage the bottom of your feet are your muscles sore? Mine are and I'm working on a theory that it could possibly be some of muscle pain that Wegs is famous for. Just a thought.

[renidrag]

I can't address the massage therapy. I do not nor have I had a massage. At one point I was lucky to see my toes much less be able to touch them. Now I can see them but do not massage my feet for some reason. Perhaps because I thought I read on this site that a "deep tissue" massage was not necessarily the best thing for us lucky people. Plus the thought of massaging the ugly red, purple, almost black skin doesn't really do any thing for me, especially with the clots and blood filter.
Dale

[Meode81]

Thank you all!! I have been using Gabapentin since diagnosis for the pain. It helped in the beginning put not so sure now. I do get deep tissue massages and they do help. I get them especially in the leg to help with the blood flow to my foot. KEEP STRONG EVERYONE!!

[drz]

The only thing I found to help with my neuropathy in many years of dealing with it, is to walk a lot and massage the feet and legs. The nerves are killed off by lack of oxygen so anything that helps the blood flow to the extremities helps a bit, but for me the neuropathy has been steadily progressive. It does wax and wane a bit and gets worse quickly if I sit very very long without walking around. The various pain meds can help some when pain is a problem but my pain generally decreased as the numbness increased. Dead nerves don't seem to feel as much. It is important to check you feet everyday as you may not feel sores or injuries when your feet are numb. I have heard of some magic cures but so far none of my doctors have endorsed any of them as having any value. An unknown or undiscovered infection is often the cause of amputation in people with diabetes and serious circulation and neuropathy problems.

[annekat]

I have fairly mild neuropathy in my feet and toes. After a day of wearing shoes, I take them off and massaging my own feet feels really good. I think one of those plug-in foot baths that vibrate or have jets would be very nice, too. But I don't know how different any of this would be with more severe neuropathy than mine, with discolored skin and such... I can see why you would hesitate on that, Dale. But I do think what drz says sounds right, that we need to increase the blood flow and oxygen to the nerves and tissues somehow.

[jola57]

My weggs is in my nerves and neuropathy is now part of the new me. I have learned to live thru dropped foot, nerve pain, no feeling, pins and needles, horrible burning sensation, feeling of elephant feet, losing toe nail 3 times (I am now a proud owner of two gel falsies), hot and cold, surgery, have I missed anything? I have not and so far don't think I will use anything for it, the relief is short lived and I would be more upset by its reappearance so I do hot baths, wear therapeutic tights when needed. But, to each his own, what works for me and drz will not do for others.
find meds that work for you, if your doc is game and one med doesn't work, try another and so on.
i do go for massage once in a while, I wouldn't recommend getting one while on heavy chemo meds. I am on 3mg pred and 7.5 mtx and never had a problem with massage. Deep tissue massage releases the toxins faster into your body so this is why it's not indicated during aggressive treatment phase.

[drz]

The only caveat I have heard about any risks from massage is possible injury to tendons or skin if massage was too aggressive while on high dosage of pred and also some antibiotic. The other meds for Wegs are rather quickly excreted from the body and don't build up anywhere. They also become inert rather quickly as they have a short half life so there is no chance of having an adverse reaction to the meds we take for Wegs except for Pred that can weaken skin and tendons at higher dosages. Your skin can become so thin it might tear from a vigorous massage at the high dosages of Pred. Another myth that was promoted for awhile by the massage businesses years ago was that it could help or increase your immune system but all my medical sources and massage therapists tell me this is not true so not to worry. Massages can and do increase circulation and relax your muscles which is generally good for us.

[windchime]

The only caveat I have heard about any risks from massage is possible injury to tendons or skin if massage was too aggressive while on high dosage of pred and also some antibiotic. The other meds for Wegs are rather quickly excreted from the body and don't build up anywhere. They also become inert rather quickly as they have a short half life so there is no chance of having an adverse reaction to the meds we take for Wegs except for Pred that can weaken skin and tendons at higher dosages. Your skin can become so thin it might tear from a vigorous massage at the high dosages of Pred. Another myth that was promoted for awhile by the massage businesses years ago was that it could help or increase your immune system but all my medical sources and massage therapists tell me this is not true so not to worry. Massages can and do increase circulation and relax your muscles which is generally good for us.

Just a note about massage in general. Deep tissue massages do release more toxins into the blood stream. Personally I detox for 3 days after a deep tissue massage and don't recommend that route. It feels good while getting it, but watch out. For anyone with a chronic illness that is not accustomed to deep tissue I recommend not starting them now. As nice medium to firm pressure will provide you with deep relaxation and release toxins at a much slower rate. Anyone on medication should inform their therapists what they are taking especially if it's prednisone or a blood thinner. Massage therapists should be trained to know the contraindications that go along with massage if you give them the information they need to make an informed decision.

You are correct that the industry, massage therapists and medical professionals used to say that massage was contraindicated in someone with a compromised immune system or actively on chemotherapy drugs. The thought process behind this was the massage increases the lymph circulation and it was felt that active disease could spread this way. A couple of years ago this changed and it is no longer contraindicated.

Elderly people with thin skin and easy bruising should also avoid deep tissue massage for the same reasons. If you're on the above meds you are a double whammy target. As you stated massages are a wonderful tool to make you feel better and that is, after all, our collective goal.

PS I've been a massage therapist for 12 years.

PPS Didn't mean to high jack the thread. Back to regular programming now. :lol:

[Meode81]

LOve the foot bath idea! will try!!

[annekat]

LOve the foot bath idea! will try!! I don't have one of those special foot baths but remember a friend went to Goodwill to look for one and there were many of them there! I did find when my neuropathy was worse that just running some hot water in my tub and sticking my feet in there helped a lot, for awhile, anyway.

[windchime]

I don't have one of those special foot baths but remember a friend went to Goodwill to look for one and there were many of them there! I did find when my neuropathy was worse that just running some hot water in my tub and sticking my feet in there helped a lot, for awhile, anyway.

My podiatrist suggested an alternating hot and cold foot bath. You put your feet into one leave about a minute and then switch to the other one for about a minute. You do this for about 10 minutes and it's supposed to calm down the nerves. I haven't tried it, but know that hot and cold applied to a muscle that is in spasm will cause the muscle to relax so it should work for the feet too.

[tmkd]

And other times I have sensitivity pins and needles. And it feels like a damn heavy brick when I walk.... ANYONE ELSE HAVE THIS ANNOYING SIDE EFFECT LATELY? ANY IDEAS ON HOW TO COPE WITH THIS???? It's really frustrating. I am so paranoid that their is something actually "wrong" with my lower leg / foot because I cant feel it properly!!!


I have this exact same issue in my left foot although I don't have the pain you describe. I'm not 100% sure when it started but I always have pins+needles feeling and I notice it most when out for long walks. I also have noticed that my big toe nails are no longer growing for some odd reason and the toe itself is very sensitive. I spoke to my Rhumy about it and she said that Wegeners may have caused nerve damage in my feet - or it could have had nerve damage from when my kidneys were failing and I was on high dose preg. and body ballooned into what I referred to as the Michelin Man.

http://www.logodesignlove.com/images/classic/michelin-man-patch-01.jpg

Just my two cents.

[Barbara N]

I had peripheral Neuorpathy on an off for a long time and so did a student of mine; he used to tear his skin so badly he had terrible sores because he couldn't stand the pain. Then he started riding with me and hasn't had any side effects since. No pain, no tingling. I don't want to keep harping on how great horse therapy is , but it really is. Most of you don't have access to a horse so that makes this therapy out of your reach but if you do have a horse near by I would be glad to talk you through the steps. It isn't really riding because you are on a rope with a teacher at the other end and a surcingle to hold on to so you don't fall. I guess you getting to a horse is about like me getting to a good doctor. I lost my big toe nail as well.They soaked my toes and affected parts with a 4X1000 mix of Copper Sulfate. I would soak my toes 4 times a day for 15 minutes and them soak pads to put over my toes.Copper Sulfate doesn't hurt to apply either. At one point they were going to amputate the end of my toes and the tips of my ears it got so bad. Good luck and stretching exercises help a lot. animo, Barbara

[Alex]

Happy Gobble Tov to those around the world!!! I have a question for my Weggie BFFS! I had the lung removal/diagnosis 11 months ago. All seems to be calming down,I am final down to 10 mg f Predisone but will have another round of IV Rituxamad after the holidays. BUT I HAVE A PROBLEM I NEED TO VENT ABOUT!!! The Peripheral Neuropathy in one of my feet IS SO DAMN ANNOYING!!!. I just lost the big toenail due to this. The pain in my foot can be excruciating at times. And other times I have sensitivity pins and needles. And it feels like a damn heavy brick when I walk.... ANYONE ELSE HAVE THIS ANNOYING SIDE EFFECT LATELY? ANY IDEAS ON HOW TO COPE WITH THIS???? It's really frustrating. I am so paranoid that their is something actually "wrong" with my lower leg / foot because I cant feel it properly!!!
xoxo ~Crazy Weggie Teacher Megan :laugh:

I had the exact same thing coming out of the hospital and it lasted for almost a year. My Rhuemy at George Washington put me on Lyrica for it and I honestly think it made a difference. I no longer have the numbness and pain in my feet. It could be that the disease process just slowed down however I do think that the Lyrica helped. I don't have to take it anymore, I was on it for about 4 months. Might be worth bringing it up with the doc. I was taking 200mg a day and didn't experience any negative side effects. No real noticeable weight gain, although I was already HUGE from prednisone.

[Barbara N]

I had the exact same thing coming out of the hospital and it lasted for almost a year. My Rhuemy at George Washington put me on Lyrica for it and I honestly think it made a difference. I no longer have the numbness and pain in my feet. It could be that the disease process just slowed down however I do think that the Lyrica helped. I don't have to take it anymore, I was on it for about 4 months. Might be worth bringing it up with the doc.

I also take Lyrica and it seems to help otherwise my back and arms are unbearable.