Board Vets, I'd like Your Perspective
 

I've had PN for about three years now. Mainly in feet, claves and thighs. I'm male, 56 y.o.

Here's my typical day:
Wake up and eat breakfast. My feet are usually sore when I get up, but quickly improve as I walk around the house. They are just sore from laying on them all night.

After breakfast, I take a shower and get dressed. I only wear shorts and flip flops now. Long pants irritate me and shoes are out of the question. I live in So. Cal, so it's not a big deal really. By the time I get out of the shower, my feet hurt. I think its just from standing in the tub/shower and my feet rest on the curve of the tub, if that makes sense.

I get dressed and have learned its best to soak my feet in ice water, while I sit on ice packs behind my thighs, before I drive to work. I do this for about 10 minutes and then go to work.

At work, I sit at a desk and after about an hour, I need to get ice packs that I leave in the office fridge and sit on them. I have two pair that I rotate throughout the day. I work for commissions only, so everyone's pretty cool about my condition and don't have a say when I go home. I go home about 3 p.m. each day because i can no longer stand it at my desk.

When I get home, I have to lay down from anywhere from 1/2 hour to an hour. The Neurontin (3X600) makes me so tired, I can't really avoid the nap. I awake pretty refreshed, but I go downhill pretty quick after that. I make a few calls for work and then do my soaking ritual. I call the ice water my 'morphine'. It temporarily gives me relief by just numbing everything.

I care for my mom now and bring her dinner about 6. By this time, I'm often on the verge of tears, due to the pain. By 7, I'm usually home and eating dinner. I'm married and my wife is very supportive and often rubs my feet and legs while we watch tv. Sitting in the chair at night is often impossible due to pain.

I smoke medical marijuana in the evenings and that helps a lot. I almost always sleep thru the night. I am only pain free while I'm sleeping and look forward to it every night. Of course, I can't smoke pot during the day.

Tomorrow I go to my g.p. I have crappy insurance thru the county and my dr is pretty clueless on the subject. He just smiles and asks if I want to up my Neurontin. He tries. I guess. He has referred me to get some sort of neuro test and supposedly the results came back 'fine'. Today, I went to an appt with the vascular surgery dept, but they had no idea why he sent me.
As you all know, when you find out you just wasted another morning at the drs for nothing, it can be very frustrating. Frustration = Pain.

So here's the point that I'm getting at. Like I said, I have an appt with my g.p. tomorrow. In the past I've asked him if I can get anything for my break-thru pain. He has always acted like I just asked him to rob a bank or something. He knows I live with cronic pain and its not getting better. I don't want to get hooked on pain killers either. However, it appears I'm coming to the end of my proverbial rope. Lately I've been very agitated and have taken it out on my wife, a coworker and the checker at the market. It's not like me to be that way. I've always been a happy go lucky guy.

Is it ok for me to insist the dr help me in some way with the pain? I know that pain meds are a hot topic lately due to abuse, but aren't they made for people like us? I mean, who has to live in 24 hour pain with no hope of getting better? Also, do pain meds work with PN?

Sorry for the rant. I've been in a bad place lately and I really don't want to keep on this path because I don't know if I can.

Thank you.

I different sucky issues than you. At least you can sleep! I find more relief with supplements than have been able to get so far from drugs. I have also been taking out my pain on others. Cashiers get it the worst for some reason. Probably cause they are the only person I deal with that doesn't know me. I try to take drugs prescribed by my doctor but they end up making my mood worse, more violent, still can't sleep even though they make me more tired and don't seem to do anything for my PN. Have you tried the Epsom lotion? I ask cause you mentioned numbing. I used the lotion and it made my legs numb to any pain.

Good Morning Surfer :)
 

I know how tough this is... I have been there.

Have you tried ice in your lumbar and sacral areas? If the pain is generating there, you might see some relief.

There is a condition, which many doctors still don't understand, called RSD... and ice actually makes this worse. Do you have any swelling or discoloring of the skin? That would suggest RSD.

I use ice quite a bit, on my back and neck areas when I have arthritis flares.

If you get some relief with an ice pack (I use 3M gel packs that I got from Amazon), then I would try Lidoderms across the lower back. These numb inflamed nerves quite well. (however your insurance may not pay for these)

If you do get some relief from cold then RSD is not likely.

Your pain does not move? Increase or spread to other body areas? I'd use very lukewarm water and not hot water in that shower. Have you skipped the shower and compared that day to one that you did shower? That may show if something about the shower is a trigger. You could do that on a day you don't have to work, etc.

But as others here have mentioned, there comes a time when pain management has to be done and discussed with your doctor.

Thanks everyone!

Lewie,
I'll look up Epson lotion, as I know nothing about it.

St George,
I may be able to change g.p.'s under our plan, but I really don't think any dr. on my plan will be any better. I maybe wrong. I had a g.p. for most of my adult life that I think is one of the best there is. When we lost our insurance we lost him as well. To be honest, he was my dr. when I first came down with my problems and I could tell he really didn't know what to do about it.

MrsD
Thanks for all the suggestions. To answer you questions...
I have not tried ice on my lubar and sacral areas, but I will this evening and let you know.

I don't really have any swelling or discoloration on my skin. If you look real close, my skin is slighty lighter in the area of my feet and legs that get submersed in ice water. Kind of a faint tan line as if I wore shoes and socks with shorts. Looking at my legs right now, I dont see any difference and I soaked them about 2 hours ago.

My pain does not move. It's concentrated in my feet and legs. I can't wear underwear because if bothers me on my waist, but otherwise, no. I have tingling in my right arm occasionally, but I think I have had that sensation before p.n. Probably an old baseall injury from throwing out my arm over my younger years.

I will try foregoing a shower this weekend as well.

I thought I had my gp appt. this morning, but its Friday am.

I once stepped on a sea urchin about ten years ago while surfing. My foot swelled like balloon and was totally numb from venom. By the time I drove back to my town to see my dr., it hurt a LOT. My dr. said the spine had broke off in my foot and I should go to the hospital for removal. I asked him to just do it at his office and he agreed. He warned me it was going to be the worst pain I ever felt. He was right. The urchin spine kept breaking off whenever he tried to pull it out and he had to dig deeper and deeper into the bottom of my foot. He would shoot a needle full of something into the hole each time and THAT really hurt. When he was done, he said he never saw anyone able to handle that much pain. It turned out the urchin spine traveled from the bottom of my foot to about 1/4 inch from the top of my foot. He had to cram his tweezers (or whatever drs have) all the way up a tiny hole thru my foot to the top.

The reason I tell this story is because my wife brought it up recently. She said that I was probably enduring more pain than I really should. She said to get tough with the dr and get some relief because no one should endure extreme pain everyday and eventually it will change me. Of course, she's right and no sooner had she said this, I had the three incidents mentioned earlier when I snapped.

I know everyone on this board has experienced awful pain and I am in no way discounting that. Pain sucks and that's why we are all here.

I've tried to ignore my condition and go thru the day with a smile, but I'm not smiling anymore. I'll post back after drs. appt.

Wow, what a terrible event you went thru. I know a fellow who went to a dermatologist to have a wart removed...and that specialist hit a blood vessel and the fellow almost bled out in the office! The doctor had to put a tight turniquet on the foot, and other extreme measures to stop the bleeding. This patient never went back to that doctor, for good reason!

Did you ever have an Xray of that foot to see if any fragments remain? I sure would have.

Do you get blood work at your regular doctor's visits? Like C-reactive protein, or CBCs (to show infection)?

I think the light skin tone reflects lower circulation and poor blood flow. Then that happens, then when you warm up there is a time period when things hurt as the blood returns.

Here is a link I just found on how to deal with Sea Urchin venom stings:
http://www.wikihow.com/Treat-a-Sea-Urchin-Sting

Here is another link about "long term effects" of the venom:

http://web.tiscali.it/actiondive/div...each%20Boo.htm

Sounds like a horrific experience. When I had my spider bite on my left ankle....it bothered me for over a year...and still that ankle swells sometimes today. (this was 10 yrs ago). The bite cleared up visually with antibiotics and steroids, but the pain persisted a long time.

It is so hard to keep smiling when you are experiencing any type of severe pain for a prolonged period surferOO. I too have snapped at people close to me, not in my nature either. Sometimes the pain and discomfort are just more than we can handle. We are only human after all. Pain of any kind can sure make us do and say things we would never dream of doing under better circumstances.

Good luck at your dr's. appt. Three years is a long time to keep smiling and pushing through relentless pain, without any relief. I hope you find a way out of your bad place
soon!

This is the Epsom Lotion:

http://www.amazon.com/Morton-Epsom-L.../dp/B008X365AU

It also available at WalMart locally.

It is very helpful for pain/cramping muscles. Apply only a little bit (about a quarter's diameter on each leg), and rub in only in areas of intact skin. I use it on the tops of the feet. I wouldn't bother with the bottoms as the skin is too thick there for absorption.
Do the tops, the ankles and calves to start. Once a day is usually enough.

So many of us can relate to that statement. Pain has a way of altering our personalities. There are times that I do not recognize myself as I have become so easily agitated and respond poorly to what should be insignificant issues. Give me a good reason to explode and I am off the charts. Pain come out in many ways, two of which are snappy or crying. I usually snap first and cry later. :)

Here's a little up date. You guys can appreciate it more than most....

Sooo, I had my appt. with g.p. last Friday at 9 a.m. My crappy insurance limits me to this clinic about 20 minutes from my house. I got in pretty quickly and the dr. came in the room a few minutes later. Heasked me how I was doing and I told him 'terrible'. He asked if the Gabapentin was working and I told him it made me tired, but that's all.

I then told him life had been hell during the last three months when I saw him. He said he would refer me to a neurologist and with my new (crappy) insurance, I could probably see one. He has referred me for the past two years, so I didn't exactly jump up and down with glee over his statement.

He turned and started leaving the exam room. I said, "hey, is this how you would treat your brother?" He turned back and closed the door behind him. I repeated, "If I was your brother who has had cronic pain for years and it just keeps getting worse, you would tell him to cross his finger and hope he gets to see a neurologist? "Or would you do everything you could to ease the pain?" He stood there staring at me. Then I said I knew for a fact that my vet wouldn't let my dog go thru this type of pain and I want to know why he would allow me to? And no, I don't want to up the dosage of Gabapentin, because we both know that doesn't work now.

He just stared at me and then at the ground. He said he'd be right back and left for a few minutes. He returned and said he was putting me on Lyrica. Fine, I thought, I've heard about that on tv and this site. Then he hands me a sheet of paper and tells me I was depressed and if I needed someone to talk to, just call this shrink. I told him "Hey, that's all well and good, and I MAY be depressed after years of constant pain, but if I'm depressed it's from the pain. Why don't we do something to end the pain and the depression disappears?" Then my kicker: "If I went to the shrink right now, all I would talk about is why you, my dr, doesn't do all he can to try to help me?"

If looks could kill, lol. Its times like these that I'm glad I'm 6'4" and weigh 225lbs. He finally said 'lets see what the Lyrica does for you. I thanked him and he left.

Of course, things go further downhill when the pharmacy said my insurance didnt cover it and the told me to call the drs and get an exception. After 45 MINUTES on hold, I hung up and had to drive back to talk to someone. It was a VERY bad day and the aggrevation just wrecked me.

Isn't this fun?

That is so terrible. I really feel for you. :hug:

You could contact Pfizer and ask for some help with the cost of the medication.
https://www.phahelps.com/pages/misc/Default.aspx

They may be able to find other venues to help you too.

It is disgraceful that your pain was not taken more seriously. I believe that the way you approached your doctor was very commendable and his response indicates that you need a new doctor. Neuropathic pain is very hard to treat, and at its worst, extremely debilitating. Under-treated pain has been known to lead to depression and even suicide, and doctors should feel an obligation to relieve it. Visiting a neurologist, while necessary, will probably not help, as they seldom prescribe pain medication.
I am currently on MS Contin, 30 mg. x 3, Gabapentin 600 mg. x 3, Baclofen 10 mg x3, and oxycodone, 7.5/325, as needed for breakthrough pain, averaging one per day. On this regime I am able to run a household of 5-7 persons, go for walks (I use two hiking poles and my husband accompanies me in case I fall), and drive in a 5 mile radius. Without it I would be depressed, my thoughts dominated by the pain, and unable to leave my sofa and blankets. Even with it I am subject to an all over sunburned feeling, stiffness, numbness, and the feeling of furry creatures running all over my legs and hips. The horrible shooting pains in my legs are calmed by the medication.
I hope that you are able to find a doctor to work with you on finding the right combination of medicines. It is unconscionable to withhold real pain medicine from someone suffering with this disease.

Thank you everyone for your insights. I think part of me posted here for a little pity. No one else really gets it. My wife has been amazing, so maybe one 'normie' gets it.

Mrs D and others, I have taken your suggestions to heart. I just received epson lotion in the mail yesterday. My wife gave me a foot/leg rub last might and it felt wonderful! I didnt really notice that the epson provided any relief on its own, but the combination of lotion and the rub felt amazing.

Mrs D - I am now taking lukewarm showers as suggested. I always enjoyed a long hot shower in the morning and never thought that I shouldn't continue to do so. Too early to tell if it helps, but I will certainly continue.

I also appreciate the heads up about Pfizer possibly helping me with the costs. Apparently an exception is going through channels to approve me for my meds.

Susanne C. - thanks for the input. I have always said that when I see a grumpy or uncaring doctor, nurse, aide, etc that they should change occupation. Medicine and a few other jobs like school teacher should be left to only those with a calling and a "customer first" mentality. I have met amazing doctors and doctors that I wouldn't let in my house when I wasn't there.

I am one of those dreaded 'lurkers' I'm afraid. I take much more than I give here and I want you all to know how much I appreciate you all.

Hey surfer00,

I have recently started taking a low dosage (25mg) of Lyrica, and recently added Imipramine 10 mg over the past couple of days. I dis not want to increase the dosage of Lyrica due to the sides. After learning to deal with the sides of Lyrica, it began to lose some of it's effectiveness, so I had to wanted to add the Imipramine. I take both together before bed.
So far I am having pretty good luck.
The pain has not ben eliminated, but definitely has helped with cramping, burning, pins and needles. Since taking the Lyrica, I have had some involuntary muscle jerks, most in legs. I have problems with pain in my neck, scapula, low back, feet and hands.

About a mont and half a go I was in the worst pain I have ever experienced and so far, I have relief from this.

I also take Vitamin B12, B1, R-Lipoic Acid and Magnesium

N1

Hey Nervous,

Thanks for the info on Lyrica. I'm crossing my fingers that it provides some relief for me too!