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Posted 2/12/2014 10:36 AM (GMT 0)
greeting everyone. looking for some help. my neuropathy in my left leg is pretty much going through the roof as far as pain go. i find that adjusting between sitting/standing/walking and stretching really has no effect as far as helping with the pain anymore. i still have my instructions from my PT days and no real relief there.
is there anything i overlooked, any other remedies that anyone would know that might help.
thank you in advance for any ideas. willing to try about anything now..... idea
Posted 2/12/2014 4:34 PM (GMT 0)
Hi Mallardmark. How did you get neuropathy? Did you have a conduction nerve test done? A EMG? I have anxiety. My hands hurt and tingle and so does my legs to my feet. Some times they burn. I went to see a neuroligist and had a EMG test done. He tested my large nerves and muscles. He said they were very good. Now I go back this thursday and he's going to test my small nerves. I did not know you have large and small nerves. The test will take about 45 minutes. When you walk around It does not help you? When I walk around it helps me. But I all so have anxiety, and the doctor said maybe restless leg syndrome. So the neuroligist is a expert on this stuff. Misty
Posted 2/12/2014 4:39 PM (GMT 0)
Mark,

Boy I am sorry to hear you are suffering mightily even with all that gear. I have quite a bit of neuropathy, it actually hurts to wear clothes (boo hoo, just giving you an idea). The only things I have ever found that kill the neuropathy for me are neurontin and >morphine. I'm on 3600mg neurontin now and I just re-added some nortryptylin. It is an old school mood stabilizer, but it seems to have given the neurontin a bit more edge. . .ie, taking the edge of the neuropathy. Right now I am playing with 50-100mg/day and I am 200lbs. Hey, might be worth a shot. I've also added cymbalta and lyrica to this mix with perhaps an even more minor gain.

That said, and your doctor will know or get a warning from the pharmacy, no two of the above medications are supposed to be taken together as there is some rare syndrome or something. I would look it up but I am in hurry. According to my PM, you find that out almost immediately when you combine the drugs.

Good luck, stay strong.
Posted 2/12/2014 5:20 PM (GMT 0)
Mark,

Do you have access to something like a Jacuzzi? Sometimes the rapid jet flow of water can be distracting so that, -- even if for a short while, -- it can assist in providing some peace for you.

Or maybe one of those hand-held shower heads that pulsates?

I'd think utilizing something that creates a different sensation,....anything different than the constant pain you're in,...might work to at least break up those signals a bit.




M.
Posted 2/13/2014 3:05 AM (GMT 0)
hello all and thank you for responding and the ideas. i've had 3 emg's my last one was last august or sept. didn't have very promising results with that. i've tryed both cymbalta and lyrica. cymbalta really didn't help and lyrica i had bad reactions to it.(shakiness and something else, don't remember what) i like the idea of a Jacuzzi, maybe my doc will write a script..hahaha. i can only wish. turns out this weekend my wifes family is staying at a hotel for 3 days 2 nights and they have a Jacuzzi and a pool. i will differently spend some time in the Jacuzzi. i've been one nuronetin for about two years now and had it adjusted a few times. i'm up too 2400mgs a day but was told i can go higher then that. see what my pm would like to do. thanks again for the advice....mark
Posted 2/13/2014 6:47 AM (GMT 0)
Just on the chance it might help, I would look for the WHY? For me, my intestines had inflammation (I subsequently got the complete neurological answer), and they were pushing on my spine. In my case, HCP confirmed by DNA test. Hopefully you can find the why, and find the road to better health! Good luck;-)
Posted 2/14/2014 3:52 PM (GMT 0)
Hi mallard mark. This is Misty. Did you all so have a autonomic neuropathy test done? I wanted to know because I had one done yesterday. I wont know the results until Feb 20. I am hopeing everything is ok. Are you all ways tired with neuropathy? Misty
Posted 2/14/2014 8:53 PM (GMT 0)
hi misty, nope haven't had the autonomic test done.(as far as i know) is that a blood test?? good luck on your test results and diffidently lets us know how things go. i don't normally get tired other than the fact it has kept me from getting a decent nights sleep. at first my family doc thought it might have been RLS but she did a test and turned out i don't have RLS (relief there). i can say that it's not an evening thing, i seem to have the pain through out the day. thinking it might be time for an adjustment on the nuerontin. i understand they can adjust that up quite a bit from what i hear...hi gods love. other then the nureopathy symptoms was there any other symptoms that would indicate your issues with your intestines..i don't have any stomache or intestinal pains or issues. just curoius..
Posted 2/15/2014 4:04 AM (GMT 0)
Mark, just saw my PM yesterday, I'm at 3600 and she said that's the absolute max, but that i needed to watch for signs of kidney problems. From my understanding, neurontin's effect is asymptotic, mean as you get to the high levels like you and me the difference it makes by increasing is less and less.

So don't expect big changes from the higher dose. My improvements have been worth it, but it's hurting my memory here. As said previously you may get another small benefit from nortryptylin.

Is your neuropathy of the sensory nerves? Is it in the skin or is it deep sciatic pain? External stimulus like rubbing works well for me for the sensory nerves except for infrared heat...direct sunlight, firelight, etc set my nerves in fire as does a hottub. In some cases my TENS seems to just "burn out the electronics of the pain circuits." For deep sciatic pain though I think you've got to get the pressure off the nerve. Manual traction maybe? Good PT massage and mmanipulation might help therr.
Posted 2/19/2014 2:15 PM (GMT 0)
Hi Mallard mark. A autonomic nerve test is when they test your small nerves with a machine. They test if you sweat, and test your heart with a ekg. Then run a machine and hook up things to you to check your small nerves. They said my small nerves were fine. They thinks its all anxiety witch I was diagnosed with it. What kind of test did your doctor do for restless leg syndrome? Misty.
Posted 2/19/2014 10:10 PM (GMT 0)
hi misty. well the RLS test she gave me was a simple blood test. this was from my family doctor (whom i've since switched to another pcp) not sure if a blood test is the right way to test it. please chime in anyone if there are other ways to test for RLS. i haven't done much research on the subject to really.
any way the test came back negative. back when i took my latest emg, i was told that i had some sort of nerve damage and off the top of my head i don't recall to what extent it was. next trip to my pm i will difenenty get a report. i want to say it was back in sept last year for the emg. it was part of the testing for the pain pump. though the pain i fell seems like it's deep inside, it goes from my hip on the left side and the back side of my left thigh and left calf down to my foot.

i try just about every position for some relief and walking, stearching walking laying down and nothing. right now i'd be happy with 10% but don't see that happening. my pm did mention that once we get the pump working again i should feel a differance. sounds good to me..
Posted 2/21/2014 10:17 PM (GMT 0)
Hey Mark, firstly everyone on this forum has a voice when I read their words. Yours is basically Daffy Duck, which makes me laugh a bit. (therabidweasel sounds like a cross between Bugs Bunny and the Tasmanian Devil)

Anyway, I was wondering if you had ever had a myofascial massage? I moved once and couldn't find a good PM, Neurologist, or PT. So I started seeing a myofascial masseuse. It didn't work on the first visit, but after she learned my body a little and what affected my pain, it was actually fairly effective. Now, I've had bad myofascial massages from other folks as well, so it is very masseuse dependent.

Anyway, I feel for you with the sciatica. That pain is unforgettable and I hope you get relief soon. My feeling is that you should be manipulated in some way to remove the pressure from the nerve. Killing sciatica with drugs is very difficult. I'm no doc or anything, ordinary civilian here.
Posted 2/26/2014 3:38 PM (GMT 0)
Hi Mallard mark. Did you damage your nerves some how? Like did you have a accindent or fall down some how? Idid not know that they can do a blood test for rest leg syndrome. But your pain is all the time right. It does not stop when you lay down? So restless leg syndrome only happens at night ? Right? Do you know what they looked for in you blood test for restless leg syndrome? My two EMG 'S came out normal. The neurologist thinks it all anxiety. Misty
Posted 2/27/2014 2:11 AM (GMT 0)
hi misty, well i injured my lower back at work back in November of 2004 and really haven't been the same since. it wasn't until February 2005 that things really started getting rough and when i started seeing doctors about my pain.i want to say i had my first EMG in February also. i was told after that that i some some injury to my leg nerves but not too bad. i was put on some ultram and flexiril for pain and spasms and also my first visits for physical therapy. which actually made the pain worse. so i just accepted it and went on with my life. went back to work til late march when i just couldn't work any more. after a couple weeks off i went on lite duty up until aug. 2005. had my 2 laminictomies in aug and oct 2005 and things went pretty good for a couple of years. and 2 fusions to follow in dec.2010 and sept. 2012.
i mentioned restless leg syndrome to my family doctor and she told me that all i needed was a blood test
to see if i had RLS. came back negative. yes the pain is all the time and at times very unbearable.
yeah thats what i hear about RLS seems to happen at night. not sure what they looked for but my doctor was alittle on the weird side. i have since switched doctors.
glad to hear your tests went good. anything they can give you for your anxiety..
Posted 3/1/2014 11:14 PM (GMT 0)
Hi Mark,

I'm hoping my story will at least make you feel as though you are not alone. I was in a MVA in Feb 2011, I broke all 4 limbs in multiple places and completely destroyed my left leg. I have not been diagnosed with RLS but am treated for it with 2mg of Resperidone nightly. The Respirdone helps my kicking and twitching at night as my husband was loosing sleep because of my sleep behaviours (and not in the good way). I also was unlucky with Cymbalta but have been fortunate with Lyrica (TID 150mg).

I have learnt that I have to take control of my pain the best I can. I meditate a lot, I find it is one of the best options for control as it can be used anywhere. I saw your joke about asking your doctor for a script re:Jacuzzi. If your pain has been going on this long I highly recommend you rent a hot tub for a month. See how much it helps with pain and how much you use it. My accident was Feb 2011, Dec 2012 I installed a walk in tub in my house and started using it daily. I followed up that purchase with a year round swim spa in Oct 2013. I spend a minimum of 2 hours in the pool a day. If there is a day I can't handle the cold Canadian climate I use my whirlpool. The hot water movement does not eliminate my pain but it does bring it down in intensity. And as anyone in this group will testify, if you can get relief, take it!

Along with meditation, medication, and water I do both yoga and tai chi. It may sound hippy like but I don't care stretching and moving allows my body to accept my abilities and limits. I firmly believe that even with all the negatives of living with chronic pain and PTSD I take the most active role I can in being both proactive and manage my symptoms the best I can.

Never be afraid to try something!

Shannon
Posted 3/2/2014 5:19 PM (GMT 0)
Depending on your insurance, you may be, just may, be able to get some insurance assistance in paying for a Jacuzzi if you and your doctor can demonstrate a medical need for it.

The road is tough and be prepared for a lot of rejections and appeals, but if you've tried it (and if you haven't I suggest you do),...and your doctor has deemed there's a "medical necessity," there's a chance (even if it's slim) that with enough pressure and persistence, you can get your insurance company to help.

I do realize it can be like trying to squeeze blood from a rock, but will share this with you: I have seen it done. (Granted, this was some years ago, so by today's tightening restrictions clamping down on insurance, it may be like banging your head against a wall,....so, heads up).

There are many factors, but to if you sincerely wish to pursue this, you have to be extremely active in utilizing one daily, demonstrate benefit over a period of time, and get as many health practitioners, (even from different disciplines) to agree on its therapeutic value for you, personally, and how, specifically.

Who knows? Just wanted to toss that out there for ya to chew on.



M.
Posted 3/3/2014 2:30 AM (GMT 0)
I have idiopathic polyneuropthy in both feet and lower legs I know very well the pain you are feeling. I am taking gabapentin too but sometimes nothing works to control pain...I know this sounds weird but I have rubbed Bengay on my feet and legs then put compression knee high socks on it seems to trick my brain lol hope this helps
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