Melinda - foot help

You know me, I'm always looking for things to help pain. I've spent hundred and hundreds of dollars on different gadgets. Some of them are very helpful, some not so much. Now that the cold is here, I'm having a lot of numbness and pain in my feet. If I go outside, it starts and won't let up all day. I finally found something to help. Not sure if it would help you, but some reviews have claimed that it helped their neuropathy. I didn't expect much, but it really helps to get some of the feeling back.

www.amazon.com/Sharper-Image-MSI-F140H-Kneading-Massager/dp/B009YJSKI2/ref=sr_1_2?ie=UTF8&qid=1388844861&sr=8-2&keywords=foot+massager

Sandi I have one like this - doesn't do diddlysquat for my neuropathy. It does feel really good though, I like the heat and it makes my feet tingle in a good way not a neuropathy way.

The only time I have been pain free in over 8 years was in September after my hand surgery, took Percocet for the pain - it blew my mind when I had NO pain at all for 2 days from neuropathy, tendonitis and the hand surgery, it was wonderful!! But then didn't need it for the surgery pain after that so didn't take it after the 2 days - have been tempted but no point because there's no way they would give me more of it.

I did have a nurse tell me last week that at my age probably the only thing that would help the neuropathy pain would be a narcotic - well that won't happen because I'm sure my HMO won't give it for neuropathy. They are to start a pain management clinic and there will be no medications given. I do see my new neurologist for the 2nd time this March, going to ask him if there is anything out there that works like Percocet but isn't a narcotic - there isn't that I know of but doesn't hurt to ask.

I didn't have any side effects from the Percocet other than I talked a lot my family said - a lot and fast.

What good is pain management if they won't give pain meds? I do get them, but they don't do much. Lyrica was the only med that seemed to block it, but you know how badly that ended up.

Pain Management can be a good thing though because they do nerve blocking shots, trigger point injections, TENS implants....you might want to look into something like that. There are a lot of non-medication options. I tried a few of those when I couldn't take pain meds at work. They did help some.

What kinds of medications have you guys taken for neuropathy?? There are many new drugs out on the market that are just for that very thing.

I've tried Cymbalta and Lyrica. I was offered Neurontin, but refused. To be honest, I can't handle any more side effects on top of the ones I have now. I keep trying non-med methods such a TENS, an acupuncture mat, a hydroculator and now the foot massager. It's easier to use those often now that I'm not working.

My neuropathy comes and goes depending on the weather. It's weird, but temperature, hot or cold, affects my nerve endings.

I won't touch Lyrica with a 10' pole! And that decision was before you tried taking it Sandi.
Wouldn't take Cymbalta either - really, side effects from these seem so much worse than the pain I am in!

And why would Cymbalta say "pain associated with diabetic peripheral neuropathy" - are they saying those of us who have PN due to other or unknown reason won't get relief from this drug? Really I feel like the stepchild having idiopathic PN, but idiopathic is a lot better than diabetic PN!

Could a nerve block even be used in feet?

Have a TENS, does nothing for my neuropathy - in fact I can have it as high as it goes and I do not feel it at all.

Julia I have a problem taking something that could mess with my platelets or cause more problems then I already have so to be honest I nix everything. I do take a very small dose of gabapentin [Neurontin] but will not go higher on it because I don't want the side effects - was told by my 1st neurologist [who has retired, he was one of the best in the State and just fantastic] that usually it takes 1800mg to help and that I just will not do! Personally I've just about given up - anything I look into has side effects I just don't want to chance getting.

My PN is constant - 24/7/365 - some days worse than other days but the "good" days are not good at all.

hmmmmm. Neuropathy. It sucks! I was originally diagnosed with the idiopathic kind too. Then my doc is trying to tell me that I have diabetes. Yeah. What the hey, why not? My A1C levels aren't over the limit, but whatever. You're right Melinda, Percocet does the trick. But can't get it. What's the point!? I'm on Cymbalta, little help there. Also 1500mg of Neurontin a day. Nothing at all takes away all the pain except the Percocet. I simply couldn't live with the pain without some sort of help. I do notice that the cold effects my hands a whole lot. Good thing I live in Ohio huh?! LOL. Does the pain of Neuropathy compare to Fibromyalgia? UGH

Melinda:

All I'm saying is that if you do go to the pain management clinic, give it a chance. Chances are they won't have any magic, but there may be something non-med that could help a bit. Everything they tried on me was temporary (like trigger point injections for muscles), but it was worth doing every few weeks for the bit of relief that I did get. I never used the TENS for neuropathy, I used it for muscles.

I'd be frustrated with the idiopathic diagnosis too - most people with neuropathy have a reason and you wonder why it would just come out of nowhere.

Sandi believe me I am waiting for this pain management clinic to open and see what it is all about - I will give it a try, I have made sure my new PCP knows I want to go and he agrees I need it. I just don't feel there is anything that can be done because I am so stubborn [or is the word stupid?] about taking meds that will cause more/worse trouble than I already have.

It's funny - the idiopathic part of ITP [although now it is immune] doesn't bother me but the idiopathic part of my PN does. Literally one day woke up and noticed my feet started tingling, and that was the start of this journey - no rhyme nor reason for it.

Server how does the 1500mg of Neurontin treat you - does it cause side effects? What about Cymbalta, are you having any side effects from it? My dose of gabapentin [Neurontin] is very small but I don't want to get off of it just in case it is helping is some minute way.

I just could not believe how I felt on the Percocet after the hand surgery - it really amazed me that my body was something I didn't know was there because there was no pain at all - does that make sense? I think I have left 22 of 30 pills given me, but what's the point of even taking a 1/2 pill to see if that would take the pain away since they won't give me more. Oh well.

If you ever need to talk please feel free to go to my profile and email me - we're in this together as your PN sounds like mine, constant. There is a group of PNers on facebook - they talk, they joke, they tell their stories and what does/doesn't work. If you want the group let me know.

That's the same thing that happened to me....just woke up one morning, got in the shower and got hit with pins and needles that lasted for months. Although I don't have that constantly, I do have skin burning most of the time and a lot of numbness. I am so used to it that once in a while when laying in bed, I notice it and can't remember what it's like to not feel that.

I do have an answer though...nerve inflammation due to Lupus. It's likely that you have nerve inflammation too, but just don't know why.

This is why I just friggin' give up [excuse my language, but I've had it!]

I found out today my HMO has a pain management clinic BUT.....
Our pain management service is not a traditional one where they treat chronic pain per se. Our pain service is more for radicular pain, or pain from nerve pinching, eg back pain/sciatica, for epidural injections or nerve blocks. And currently they do not treat neuropathic pain of your type.

Well thank you so much - it is nice to know that you don't care about me and what I am going through.

Seems like they don't give a rats bum so why am I looking for something that won't make me stupid or put me in a worse state of health than I already am. There just is nothing that can be done. I need to quit looking for the end of the rainbow, it just doesn't exist. I give up!

No, don't give up! I had a hard time at first too. They wouldn't take me at first because my problem couldn't be proven with an MRI or X-ray. They required that to approve a patient for treatment. I was really frustrated because my Rheumatologist at the time wouldn't treat pain and kept referring me to the clinic, but they wouldn't take me.

I finally got smart and submitted an MRI of my neck which had bulging and herniated disks. I didn't know it at the time, but it had moved on to stenosis. It was a problem, but not the worst problem. My pharmacist also knew one of the doctors there and called on my behalf. They decided to take me.

Once they got me, they didn't know what to do with me. I was their first and only Lupus patient. The doctor didn't have a clue. This clinic did have a separate side for diabetic neuropathy, so that would be perfect for you, Melinda. I know you're not diabetic, but I'll bet the treatment is the same. They do implants that have nerve blocks. I don't know how successful it is though.

They ended up assigning me to a PA, and she was fantastic. I tried a few meds and they interfered with work, so they didn't work out. She then had some non-med ideas, and we tried quite a few. It got me by.

I don't understand what the problem is either with treating chronic pain. They don't want patients addicted to the drugs that will help, but there is no quality of life without them.

Yeah, treatment is the same for all PN I would think. It is neat that clinic had a diabetic neuropathy section.

But really I see no light at the end of the tunnel - no gold pot at the end of the rainbow - and even though I would love to see someone in a pain management clinic I doubt that there would be anything offered that would give relief without causing more problems.

I loved acupuncture and it did give me back some feeling in my feet - but it isn't covered by insurance and the cost went up each year so I stopped it, also I wasn't getting any new relief.

I see my neurologist in March, doubt if that will be an enlightening visit - and I will also talk with my PCP when have my physical. But, yeah I have given up - I just don't see that there is an answer or anything that can help. This 24/7/365 pain is just a fact of my life, it isn't going to change except maybe get worse eventually - I'm not being a martyr believe me, just being honest to myself.

I know, I get it.

Have you looked at the acupuncture mat that I posted here before? It really helps with my muscle pain, and I've walked on it when I've had bad feet days. It's the only thing that quickly breaks the muscle pain cycle. It does hurt to use it, but skin puncture pain feels better than muscle pain. It might help with your feet. Worth a shot!

www.amazon.com/Acupressure-Massage-Pillow-Set-Acupuncture-Set-/dp/B009Y7CQQ6/ref=sr_1_12?ie=UTF8&qid=1389208610&sr=8-12&keywords=acupuncture+mat

The main issue with medications that relieve pain is that after a while they can stop working. Than the dosage must go up and or get changed. The risk of addiction is high in this area. We have issues with this at work doctors do not want people to be addicted I say they are 90 years old who cares make them pain free. Than I have co-workers who say yea but it is strong and I do not want to make them loopy or give that one dose that ends it.

Here in Ontario Canada you can not go to an emergency room and get a narcotic. If you are on them you have to get urine tests run periodically depending on the drug. If you use more than your supposed to do bother going to the drug store because they can only give you at set intervals.


I am grateful every day I do have have this issue and can't imagine what it is like. I am extremely lucky I just have bouts of I can't feel or numbness I do not experience pain! Thank goodness!

The Neurontin does give some relief, not much though. The only side effect I notice is a slight increase in tiredness. When my counts are real low it is intensified to the point that I have to nap but when they are up even over 30 or so it is something I can handle. No side effects from the Cymbalta. I do notice though that if I'm more than a couple of hours off schedule taking it I get kind of cranky. At this point I couldn't imagine life without the little bit of relief these meds give me though. Sometimes when I lay down at night I cry, still, because of the stabbing, shooting pain.
I've never heard of acupuncture for this. Is it time consuming? How often does it get done? Off I go to research!
I would like the info for the fb page. Thanks for offering.

The problem I have with chronic pain is that it tends to make you cranky. Years of it take a mental and physical toll. It affects everything you do and takes everything you have to manage it.

Gretchen - I'm glad that you don't have a lot of side effects from Cymbalta and Neurontin. Those are two important neuropathy meds. I've never had acupucture, but have thought about it. Melinda has, so she can answer your questions.

You know the same thing can be said for bp meds - they can stop working after a while. I have had to have mine increased a couple times. I have heard about Topical Clonidine Gel, it is going into a Phase 3 testing for PN - will be asking my neurologist about it. I've used Lidocaine ointment and it did nothing.

I hate pills, I really do - my bp and thyroid meds are plenty. It would be nice to get the PN pain down to a dull roar, to stop the feeling of a rod being put down my toe/s or the feeling that a cattle prod is being touched to my arch/toes or to quiet the legs screaming.

What I think is funny is my State thinks it is fine to get/be addicted to pot [which was legalized as of 1/1/14 for recreational use], but if one gets a 30 day supply of Percocet for pain after hand surgery their name goes into the State database - seriously, the State knows I was given a prescription. But the State, that I know of, is not keeping a database on who is buying pot. [Just checked, did get a prescription of 30 pills and told to take 1-2 every 4-6 hours as needed for pain - I have 23 of those white pills lift, I only took 7 of them over 2.5 days and I didn't take as many or as often as prescribed - wish the State knew that].

Maybe some of those doctors should be in a chronic pain persons shoes for a week or two and see what they have to say after that.

As Sandi said, the problem with chronic pain is it does make one cranky and nasty and probably intolerable to their family and friends at times - it gnaws at them, it's like being eaten by a guppy [a little bite at a time], it makes them bitter - it takes a toll mentally and physically.

I have had a bad week and am cranky - tried to stay off my soap box

Gretchen I have sent you an email - if you don't get it check your junk folder. That's great you aren't having side effects from Cymbalta!

Sandi I don't think that mat would help me - I'd have to stand on it. I did see some inserts similar to it but I try to stay out of shoes as they make the pain worse. I do like the foot massager even though it doesn't help it takes my mind off it for a bit - and I have some booties that you heat in the microwave that I really like, same thing they feel good and take my mind off PN for a little while.

Melinda:

Honestly, I don't know how I feel about pain meds. There are so many days when I'd just love a good Morphine drip ~ just one day to feel normal! I've read so many horror stories though about people dying accidentally from those drugs. I take Hydrocodone daily and because of that, I never drink. I'm too afraid to mix alcohol with it. I miss that too...one more part of normal life gone. (Start playing violins).

Julia's right though, they keep upping the dose and next thing you know, you stop breathing in your sleep. There is such a huge crack down on controlled substances these days and they are hard to get. It does stink for people like us who just don't get relief. There is no quality of life.

Melinda I did not recommend the following just saying:

If itt was legalized 1/1/14?? Have you ever tried it? doesn't have to be smoked you know? I have read studies where it was use for purposes like yours and Sandi's with some success!



Just saying if it is legal where you are than it is another option especially if nothing else is helping.

Hey, I've thought about it. Legalization is pending in PA....looked it up recently. I would also prefer to eat it rather than smoke it.

Julia and Sandi I like to be in control - if smoke or eat pot then I'm not in control. Yes our dear State legalized it for those over 21 as of January 1 - I'm sorry, but the idiots who were standing in line for hours on end in the freezing cold waiting for the pot shops to open to get their little pack of dried leaves or their cookie were quoted and the things they said were so stupid [oh man can't wait to feel chilled - yeah about time pot was legalized - I smoked it in the '60s but once I had kids I stopped but they are grown now so I'll start smoking again - blah blah]. People drove here straight through from Georgia to get legal pot, and they came from other States.

The Colorado Springs airport and the Denver airport have banned pot as it is still against the law, federal, to have it - so if you are caught with it in the airport or smoking it outside the door you will get arrested.

I can see medical pot, yes - but not for me.

I quit smoking June of 2009 so there is no way I'd smoke it and I'm just not in to feeling "chilled". That's me.

Now if I knew 1/2 or 1/4 of one of those tablets of Percocet I have left would give me a day of no pain.... I know what you are saying Sandi.

Melinda, I take 1/2 percocet when I need it. It does help.

Melinda - you made me laugh. I think there's a difference between a hippie pot head wanting to chill and a medical patient wanting to ease pain. Those people you saw on the news were probably just wanting to get high. You wouldn't start talking like that if you ate a cookie.

You can still be in control while using pot. I don't think the effect is much different than most narcotic drugs. I have no idea if it would help or not, but I have seen people interviewed who said it gave them better QOL.

That's interesting Cindy, thanks. Now do you have PN too?

That's what I tried to say Sandi - medical I can see, I even voted for it - but not for me, no I won't inhale (does that sound like a former president ) or chew.

Percocet did not do anything to me except let me see how things used to be before chronic pain - even though I talked more I was in control of what I was doing and saying.

I have fibromyalga and was put on the percocet a long time ago. I only take them if I'm in real bad pain. Should probably be taking them more often, but I'm afraid of them. I don't like the way they make me feel. I find the 1/2 does just as good a job as a whole one.

I'm sorry Cindy, that must be the pits! Since I never took the whole dose of Percocet that I could it never made me feel funny or out of control - since my directions are 1-2 pills at a time I was thinking maybe 1/2 pill the whole day would give relief. I'm like you though, afraid but respectful of them. I'm over my smoking addiction, don't care to add something new

However one still needs to enjoy life.

Today I started back in the tap dance classes for the first time since probably June thanks to the tendon that goes from arch over ankle bone up leg. Tendon and neuropathy be damned, I'll wear tap shoes for a couple hours on Mondays so I can do something I enjoy!

I used neurontin in 2000 when I lost the use of both hands due to nerve damage. They fussed about it for weeks, thinking my problem was carpal tunnel. And my hands got worse and worse. I had to put bandaids on all my fingertips as even touching a kleenex felt like I was touching the edges of knives. Just awful. I couldn't do anything. Then I was sent to a neurologist who prescribed neurontin. Within two weeks all my pain was gone. Another two and I was off the drug and have never had a bit of trouble since.

What was your diagnosis? Doesn't sound like PN that I have heard of from people who have PN. I've been on Neurontin [gabapentin] for a number of years now. Glad you are better.