Peripheral Neropathy? Any tips...

[Poohnatic]

DISers have always been an amazing resource. While I don't expect medical advice from the DIS, it's always helpful to find others in my shoes to get some good advice and perspective.

I have vascular disease and vasculitis. Recently, I developed some ulcerations on my leg that are taking forever to heal. A complication that I now have is Peripheral Neuropathy.

Anyone else suffer from this? Ironically, my sister has this and RSD and has been a huge help (she just got her nursing degree). However, what do you do to manage the pain when you're in the midst of an episode?

I've learned on here how to redirect the nerves, so I do rub the calf that is involved when it's flaring up-any other ideas? I started with Neurontin to dull the nerves and it was great. The resulting hives were not. I'm now trying Lyrica and am cautious on it's efficacy. Is medication a permanent addition for treating this, or do you find that eventually you can discontinue it?

My doctor has been really understanding. I have a very high pain threshhold, which for me means two things. 1. I hate taking painkillers and 2. I seem to need a lot more of any med than the average person.

He gave me the lecture that even though I complain that I've taken more Vicodin in the past two months than I have in my entire life, if *I* am complaining of pain, then I need them. Yes, he and I have a long history-he did my last surgery under local, which is not the usual protocol. We talked during the whole procedure, which blew away the rest of the surgical team.

He is sending me to a neurologist. He feels will be a huge help and has given me the heads up that I may need spinal blocks. I see the Neuro the end of this month. What should I expect with the spinal blocks?

I know I'm throwing a lot out there-just hoping for some input from those who have gone before me on this path...


Suzanne

 

[Poohnatic]

Anyone?

 

[Aidensmom]

I don't have any advice Suzanne, but I really hope you get some answers and feel better soon.

 

[Poohnatic]

Thanks, Beth. I keep a stiff upper lip with most things, but this one is beating me down!

Suzanne

 

[kandeebunny]

OK this will probably be long so bear with me:

I have peripheral neuropathy, and am on NO meds. That said I do suffer from some pain, but I found the side effects of the meds they gave me more troubling then the pain. I also had a horrible reaction to neurontin.

What helps me the most is a TENS unit (this weird little device with electrodes...feels weird, but helps!) acupuncture and acupressure, reiki, meditation and yoga. I use a lot of eastern healing.

I also found that since I have changed my diet (I developed a gluten allergy so no gluten, no corn, no caffiene) my symptoms have lessened. I have even gotten some of the feeling back in my hands and feet, though I still lack feeling in my mouth. I tend to burn myself and not even feel it, very very dangerous with hot foods/items.

My neuro won't touch any kind of blocks or anything like that, I have nother medical issues that contribute.

I've found a good mattress has helped me in many ways, resting when need be, and even staying off my feet some. For immediate bouts of pain I learned to do acupressure and reiki on myself as well as massage, and even hot baths. I do take motrin on occasion, but due to allergies meds aren't really an option. Be VERY careful what they put you on, don't do trials regardless of how much pain you are in (I did trials for a lot of drugs that were never approved, and some that were then were black labled) I know have permanent side effects from those trials.

One thing my Dr's did try was meds like paxil, proxac, etc as they do something to the nerves, and were minor pain killers, these did help some.

Good luck and if you ever need to talk feel free to PM me I've been there.

 

[Poohnatic]

Thanks, Kandee.

Due to my long and sordid medical history, my doctor won't use any black labels on me-I have far too many drug allergies for his liking. Nerve block is probably suggested because of the vascular contraindication and ulcers.

If the Neuro suggests a TENS, I will jump on it. I have used them in past PT visits and they sure do cut down on recovery time from surgeries.

Thanks for the suggestion on accupressure. I have used it for other things, just have to figure out the pressure points for the leg and calf, lol.

You have no idea how much I appreciate your reply. It's one thing for your doctor to tell you what lies ahead, its quite another to get the word from someone who is living it. My doc is great about that-he's putting me in touch with his patient that is having surgery that I will have in a few years on another issue.

Thank you! I may take you up on PMing down the road!

Suzanne

 

[kandeebunny]

I got the luck of being on those black labels BEFORE they were black labled! Oh the joys lol.

Good luck with the Neuro...have you had an EMG yet?

Just remember it can become manageable, I also have other complications, and with eastern medicine and a lot of work on my part I've been able to get away from the meds. Just be open to some more obscure ideas, those I have found are the ones which helped the most.

Keep me updated though. I haven't met a lot of people suffering from it, and my dr's don't know anyone with the combinations I do, so they have no one for me to talk to. It's great you've found a doctor you like and who will listen.

Oh and as for the Neuro, I hated the first two I saw, treated me like a guinea pig. After you see them talk to yor regular doctor and find out WHY the tests are necessary, make sure they are to really help you not do research as a lot of the neuro tests are VERY unpleasant.

Now I've moved recently and cannot find a Dr who will treat me, I had been being seen in a children's hospital, and supposedly I was going to be able to transfer to another one...no such luck so far though.

 

[FigmentGuy]

My mother has peripheral neuropathy also. Alot of leg pain. She eats alot of vicodine too. Of course they want her off of it. Her neuroligist wants to do some sort of "back surgery" for her. My mom is medically inclined and I havn't seen any literature that the doc has sent home with her about this "back surgery". It sounds like they are talking about the same thing you are facing. What did your doc say? Recovery outlook? Risks with the surgery? etc.

We are taking my mom to WDW for the first time this November and she is worried. I'm trying to convince us to let us push her around in a wheelchair. Most of her pain is in her legs. I'm worried for her. Top it off they just did some ink/dye injection and it didnt work out. Now they fear the dye is just sitting in her. They are thinking possible blood clot in her pelvic region. So thats where things stand for us.

Wishing "us" the best..

 

[Poohnatic]

Figment Guy,

I feel bad for your mom. My advice is to her is to take the wheelchair. I've finally relented and will use one in the parks. If not, I'm in agony the next day.

What my vascular guy think is up ahead isn't a surgery, per se. Instead, it's a spinal block, similar to what I got with both c sections. Not sure what the neurologist will actually do, but this is what my doctor's experience has been so far with patients with my issues.

The clots concern me far more than the PN. Those are more dangerous. I've been there-that's why I have a vascular guy. My first order of business upon moving to Florida was to find him, because I had a clot and my Maryland doctor was going to admit me to the hospital (with a moving van en route to Florida) unless I found one ASAP.

We just have to take it day by day. I'm off to the library tomorrow to see what I can dig up on accupressure and reiki.

See what happens when you ask a question? I feel better knowing that I'm not alone in this...

suzanne

 

[Poohnatic]

Anyone in the day crowd that has info to share?