numbness, etc.

[Guest guest]

I didn't mean for this letter to be so long, so get some tea & get comfortable!

I thought I would share my experience. I've had mod-severe neuropathy in my feet for 7-8 years. I have mild neuropathy in my hands, but also have carpal tunnel so it's a little hard for me to figure out if it's sarc. The feet started with intermittent sensations like pieces of tape stuck to the bottom of my feet--different spots, but always the front half of the foot. I actually looked at my feet sometimes, because I was so sure there was tape there! In the beginning the sensation would just last a few minutes, but gradually it lasted longer & the affected areas got bigger until eventually the bottoms of both feet were permanently numb (the front halves). As the numbness worsened, my feet felt uncomfortably warm. If you've ever been by a campfire or fireplace & gotten your feet a little too close, that's similar to how my feet felt. It wasn't really painful, just uncomfortable. But it continued to get worse until walking would feel like little knives sticking in the bottoms of my feet. I was still working at that point, and by the end of the day, could hardly stand to walk. At that point I started taking Neurontin, which helped some. For the past few years my neuropathy has manifested itself in weird ways. I still have the numbness, which gets worse the more my feet are dependent (hanging down). Just sitting, like in a car, with my feet down makes it worse. If I have to drive much, like errands around town, it will feel like I have pieces of foam rubber on my feet. It's hard to tell how hard I'm pushing on the gas, but it hurts! It's so strange to feel numbness & pain at the same time. The painful sensations are weird too. Sometimes it's the feeling of knives or broken glass, sometimes it's like my feet are going to explode or like blood pressure cuffs on them really tight. I also get a nasty feeling that a crab (like at the beach) is pinching my toes. Almost worse than the pain is an occasional itch. It's like a deep, hot itch & nothing relieves it. Scratching or rubbing doesn't do anything. I just have to try distracting myself until it lets up.

Currently I'm taking Lyrica, which helps quite a bit. Last month I stopped it for about a week because I didn't have the money to refill the rx (it's almost $150 a month; I've been in the drug gap since May). Oooooh, I could really tell the difference! I had to stop the Neurontin 5 years ago when I totaled my car after kind of spacing out. My neurologist didn't let me drive for a couple of months while trying to figure out what was going on. He & I finally decided it was the Neurontin; a couple of folks on this list had the same experience--one of them even hit a telephone pole like I did! I switched to the Lyrica & later we added Cymbalta. That combination was the most helpful, but I had to stop the Cymbalta because it made my already dry eyes much worse. What helps the most is keeping my feet elevated & warm. Even in summer I wear at least 2 pairs of thick sox, sometimes 3. I wear fleece-lined clogs year round (I spraypainted a pair gold for the Indy Sarc Retreat last weekend; check out the photos!) I use one of those big exercise balls in my recliner, not completely inflated so that it's kind of squooshy. I found it was more comfortable & easy to use than a stack of pillows. In bed I rolled up a big piece of foam rubber & pinned a sheet around it. Sometimes my feet hurt so much I have to add a couple of pillows on top of the foam or the ball to get them even higher. I also carry a folding camp stool everywhere, so that I can elevate my feet. I can force myself to walk if I have to, like for the Hike for Lung Health, but pay the price later. Swimming in warm water is nice; I also have a hot tub that helps the pain, but I can't stand to put my feet by the jets. I can't walk around my house without thick-soled slippers, even with all the sox. I have Berber carpet & it feels like I'm walking on rocks. I love my recumbent trike because my feet are out in front of me. As long as I have the arch of my feet on the pedals, it doesn't hurt my feet at all, but I can't use the ball of my feet. I love kayaking, but the cold water really does a number on me! When my feet first get wet, the cold hurts, but after awhile they get pretty numb. The worst part is after we get out of the river. I always take several pair of thick sox, dry shoes & some of those hand warmers that hunters use (the handwarmers are cheaper & stay warm longer than the toe warmers), but I still have a couple of miserable days after kayaking. It's so much fun & such a stressbuster for me that it's worth it once in awhile.

The point of all this is that numbness, tingling, etc. may be a side effect of medication, may be a temporary situation, or may be the precursor of much more severe problems. The neuropathy didn't force me to retire early, but sure made my work days miserable. If these symptoms continue or worsen, you may need an emg to try to determine the source, although a thorough exam by an old-school neurologist is probably just as useful. Of all the docs I've seen, including 4 or 5 neurologists, only 2 have done a very thorough assessment of my feet, checking for sharp, dull, sensitivity to temperature changes, etc. They even used a tuning fork to check the sensation. Try to find a doctor like that; they will document their findings & use them to determine if the nerve damage worsens. I don't know that you can prevent neuropathy from worsening--I was already starting Prednisone & Imuran in the early stage of neuropathy & it still worsened. But it's been stable for the last 3-4 years, so I guess it's not going to advance up my legs.

Dang, another rambling message! I need to keep these shorter or I'll never catch up!

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

[Guest guest]

I too have problems with numbness, my feet too are worse then the rest of my body, I feel numbness on my whole left side right down the middle, out to the fingers and toes, fingers are numb, the toes are well the worse if they start hurting, I would love to just cut them off.

(did anyone see the " House " episode where a man showed up in the ER with no hand, he said he cut it off because it hurt so bad, and didn't want it reattached, so House sent the team to his house to find the hand, and he put it in the freezer, they brought it back, but I think he still refused to let them reattach it.) Well that's how I feel about my little toes, and my ring and pinkie finger, toes worse.  I have a lot of trouble with feeling like I'm stepping in water, I have to actually feel the floor to make sure it's not wet, (that would be because we have doggies),  Luckily most the time it's dry, it just feel wet to my feet.  sometimes I feel like water is running down the back of my arms.  And then other times I feel like spider webs are on me,  the more tired I am the worse it gets, it's crazy, and drives me nuts!  I wear fuzzy lined clogs too to keep my feet warm, but if they get a little hot, they're on fire, if they get a little cold, they're freezing, it's that way with my whole body.  I too am on Lyreica and it helps a lot.  I just got put on Trazadone for the cold hot thing, and I think it's working, will see when it turns cold, but usually when I'm drying my hair, I have a fan blowing right on me, and drink like 2-3 glasses of really cold water, as I heat up so much, I can't put make up on, as it just runs, and today I dried my hair and put my make up on, and never had to turn the fan on, or drink so much water, maybe it's working:)

This may be more then you want to know, but I know when I first started having symptoms, I loved hearing what everyone was going through, as it just confirmed what I was going through, and I wasn't just losing my mind, which I have thought of several times too.  Especially my memory, many times, and I mean many I am told by my family " YOU ALREADY TOLD ME THAT! "

I really don't remember, if I don't write it down, forget it, it's gone.  I have a steno I keep with me, what to do when, I find it easier then my calender. Well sorry see this is what happens when I read one of Rose's post, I just get the need to compete.LOL  but I have a long way to go yet.

I hope this info is helpful. please ask any questions there are NO dumb questions ever! MarlaJust one day at a time, That's all God ask of us. for there never really is a tomorrow, as that too

is just today:)  

 

I didn't mean for this letter to be so long, so get some tea & get comfortable!

 

I thought I would share my experience.  I've had mod-severe neuropathy in my feet for 7-8 years.  I have mild neuropathy in my hands, but also have carpal tunnel so it's a little hard for me to figure out if it's sarc.  The feet started with intermittent sensations like pieces of tape stuck to the bottom of my feet--different spots, but always the front half of the foot.  I actually looked at my feet sometimes, because I was so sure there was tape there!  In the beginning the sensation would just last a few minutes, but gradually it lasted longer & the affected areas got bigger until eventually the bottoms of both feet were permanently numb (the front halves).  As the numbness worsened, my feet felt uncomfortably warm.  If you've ever been by a campfire or fireplace & gotten your feet a little too close, that's similar to how my feet felt.  It wasn't really painful, just uncomfortable.  But it continued to get worse until walking would feel like little knives sticking in the bottoms of my feet.  I was still working at that point, and by the end of the day, could hardly stand to walk.  At that point I started taking Neurontin, which helped some.  For the past few years my neuropathy has manifested itself in weird ways.  I still have the numbness, which gets worse the more my feet are dependent (hanging down).  Just sitting, like in a car, with my feet down makes it worse.  If I have to drive much, like errands around town, it will feel like I have pieces of foam rubber on my feet.  It's hard to tell how hard I'm pushing on the gas, but it hurts!  It's so strange to feel numbness & pain at the same time.  The painful sensations are weird too.  Sometimes it's the feeling of knives or broken glass, sometimes it's like my feet are going to explode or like blood pressure cuffs on them really tight.  I also get a nasty feeling that a crab (like at the beach) is pinching my toes.  Almost worse than the pain is an occasional itch.  It's like a deep, hot itch & nothing relieves it.  Scratching or rubbing doesn't do anything.  I just have to try distracting myself until it lets up.

 

Currently I'm taking Lyrica, which helps quite a bit.  Last month I stopped it for about a week because I didn't have the money to refill the rx (it's almost $150 a month; I've been in the drug gap since May).  Oooooh, I could really tell the difference!  I had to stop the Neurontin    5 years ago when I totaled my car after kind of spacing out.  My neurologist didn't let me drive for a couple of months while trying to figure out what was going on.  He  & I finally decided it was the Neurontin; a couple of folks on this list had the same experience--one of them even hit a telephone pole like I did!  I switched to the Lyrica & later we added Cymbalta.  That combination was the most helpful, but I had to stop the Cymbalta because it made my already dry eyes much worse.  What helps the most is keeping my feet elevated & warm.  Even in summer I wear at least 2 pairs of thick sox, sometimes 3.  I wear fleece-lined clogs year round (I spraypainted a pair gold for the Indy Sarc Retreat last weekend; check out the photos!)  I use one of those big exercise balls in my recliner, not completely inflated so that it's kind of squooshy.   I found it was more comfortable & easy to use than a stack of pillows.  In bed I rolled up a big piece of foam rubber & pinned a sheet around it.  Sometimes my feet hurt so much I have to add a couple of pillows on top of the foam or the ball to get them even higher.  I also carry a folding camp stool everywhere, so that I can elevate my feet.  I can force myself to walk if I have to, like for the Hike for Lung Health, but pay the price later.  Swimming in warm water is nice; I also have a hot tub that helps the pain, but I can't stand to put my feet by the jets.  I can't walk around my house without thick-soled slippers, even with all the sox.  I have Berber carpet & it feels like I'm walking on rocks.  I love my recumbent trike because my feet are out in front of me.  As long as I have the arch of my feet on the pedals, it doesn't hurt my feet at all, but I can't use the ball of my feet.   I love kayaking, but the cold water really does a number on me!  When my feet first get wet, the cold hurts, but after awhile they get pretty numb.  The worst part is after we get out of the river.  I always take several pair of thick sox, dry shoes & some of those hand warmers that hunters use (the handwarmers are cheaper & stay warm longer than the toe warmers), but I still have a couple of miserable days after kayaking.  It's so much fun & such a stressbuster for me that it's worth it once in awhile.

 

The point of all this is that numbness, tingling, etc. may be a side effect of medication, may be a temporary situation, or may be the precursor of much more severe problems.  The neuropathy didn't force me to retire early, but sure made my work days miserable.  If these symptoms continue or worsen, you may need an emg to try to determine the source, although a thorough exam by an old-school neurologist is probably just as useful.  Of all the docs I've seen, including 4 or 5 neurologists, only 2 have done a very thorough assessment of my feet, checking for sharp, dull, sensitivity to temperature changes, etc.  They even used a tuning fork to check the sensation.  Try to find a doctor like that; they will document their findings & use them to determine if the nerve damage worsens.  I don't know that you can prevent neuropathy from worsening--I was already starting Prednisone & Imuran in the early stage of neuropathy & it still worsened.  But it's been stable for the last 3-4 years, so I guess it's not going to advance up my legs.

 

Dang, another rambling message!  I need to keep these shorter or I'll never catch up!

Ramblin' RoseModerator

 A merry heart is good medicine.  Proverbs 17:22