Newbie here searching for help
 

I’ve had severe burning and stabbing pain in my toes and soles of both feet since January, 2007 and desperately need help. I am a 58 year old woman of average health/weight. I am non-diabetic but I have had rheumatoid arthritis since 1996 - am taking Celebrex (400mg) - and have had herniated discs years ago. My GP did some bloodwork which came back normal and I started taking Neurotin (300mg) and then took Lyrica and neither helped me. I then started going to a podiatrist who put me on B-12 and folic acid for my feet and he referred me to a neurologist. I then saw my first neurologist who did an EMG and nerve conduction test which were negative – he first had me take Cymbalta and when it didn’t work then Elavil which hasn’t worked and gives me side effects of a “hangover” and headache and he also recommended I soak and put lotion on my feet which I had been doing all along. He told me that I had peripheral neuropathy but it was only mild and that I would be better off when my feet went numb – basically just to live with it and “it would be better when it gets worse.” :mad: I saw a second neurologist and he told me the same thing as the first and to stay on the Elavil for a couple more months. I’m waiting for my bloodwork to come back from him and he also said I didn’t need another EMG.

The severe pain/burning is only in my feet and ankles right now but I can’t get any help from the doctors I’ve seen so I feel it’s just going to get worse. I can’t hardly walk now and get very little sleep so I desperately need help with this. If anyone has any suggestions I would greatly appreciate it.

CGee, have you been evaluated for
 

Sometimes Rheumatoid Arthritis has a second disease along with it, Sjogren's Syndrome http://www.agingeye.net/dryeyes/sjogren.php. Sjogren's can cause neuropathy. Also Rheumatoid can cause neuropathy http://www.medicinenet.com/script/ma...ticlekey=17593

Are you being followed by a rheumatologist? Rheumatologist are trained to treat rheumatoid arthritis. And they also are trained to treat Sjogren's Syndrome.

I know you are in pain. I understand it. All of us on this forum are in pain. I've recently had an increase in mine. Sometimes a pain specialist can treat the pain better than a neuro or a GP. I hope this information helps you in some way.

Billye

The two things that helped me greatly with my burning pain were interferential therapy, a type of tens, and vitamin b1. The interferential therapy i got at a podiatrists office and then bought a small home unit.

weekend's
 

are slow here, but more help will surely be showing up for you.

Silverlady has lots of experience with rheumatic causes of neuropathy, and it's worth listening to her.

People will be coming along with B12 and gluten advice, so I'll just offer this on the overall picture:

You neurologist is wrong--you don't have to get worse before you get better. I've gotten better, and it's REAL better, not numbed out better, and so have others here.

In terms of medications---what you take and how much is a personal decision. Ive found that most of the medications I've taken for pain have not been worth the side effects--real drowsiness. That being said, I'v gotten great help from Elavil in the ridiculously LOW dose of 20mg at night. It helps my sleep, which makes everything better. I'd put money on your neuro having put you on a much heavier dose. Also, I find Klonopin helps take the edge off, used at night. During the day, I've not been badly enough off to choose the medications.

The most important thing with neuropathy is to keep moving. Most of us have sensory neuropathy, and it's common to stop using parts of us we don't feel so well. The greatest side effect of neuropathy is due to sedentary living--obesity, diabetes, heart disease. So if you can keep yourself active, you'll be better off.

That being said, the stickies have lots of information on diagnosis and treatment, do read them.

I've posted a site, www.lizajane.org with a list of laboratory tests for the causes of neuropathy. It's important to push doctors to do the tests and make sure they don't miss something treatable.

Rheumatoid arthritis does not, by itself, cause pn. There must be another cause; please be your own advocate and push the doctor to find out what it is. The charts are pretty thorough. Get copies of all results of all tests, so you can share them here. This site has some very smart people who will be intersted in the results, not just that your were told something was "normal".

Begin to keep your own chart--it will pay off in the long run.

Good luck.

If I were you, I would look for another doctor. I know that is discouraging, after having gone to two neurologists already, but what you doctor(s) has said to you is very bad acvice and trivializes your pain. First of all, having your feet go completely numb is not a happy cure -- when a person's feet go completely numb it is very difficult for them to walk, and this isusually limited to short distances with a walker. And most people with small fiber sensory neuropathy suffer for years or a lifetime without the pain ever going away. Liza Jane is certainly right that there are those of us who get relief with treatment, either actual improvement to the neuropathy, or (more commonly) with the pain. For example, I use a medication called a Fentanyl patch. Fentanyl is a synthetic morphine that is given in a constant dose by keeping a patch on, but it is a very low dose -- it is not like taking a big huge pill of narcotics. This is commonly prescribed for chronic pain problems. But some doctors won't prescribe it because they are ignorant. Ignorant doctors and many patients fear addiction, but studies have shown that taking medicne for pain rarely results in addiction. Addicts are people who take narcotics to get a high, not to treat pain. Narcotics taken in therapeutic doses for pain do not make people high.

People with neuropathy have varying levels of pain from mild to intolerable. I do disagree with people who say that PN can not kill you. My pain is so bad, that when I did not have medication I thought about suicide every day. The medication has not stopped my pain -- I am still unable to tolerate exercise for my health -- but I am able to do many things that make me happy and enjoy life. For some people, measures other that medication can do this, as mentioned above, but for other of us, we need pain medication. Mine have never caused side effects that are worse than my PN pain.

I was never able to get treatment for my pain from the two neurologists I went to. My family doctor rescued me from certain suicide by prescribing the Lyrica patches. Some people find help from a pain center or a pain specialist. But don't let anyone trivialize your pain. It is so degrading. You have enough to put up with.

Susan - you said: "My family doctor rescued me from certain suicide by prescribing the Lyrica patches." What did you mean to say?

Geez, sorry. I meant to say Fentanyl patches. Age has cought up with me and I sometimes mix up my words. Thanks for straightening this out. I do take Lyrica also, but of course that is a pill, not a patch.

I know Neuropathy.....
 

........has to be a frustrating disease for patient and doctor alike. But it absolutely galls me to hear of a doctor telling someone to "hang in there till it gets numb." What a crock!

Hi and welcome. I'm sorry for your pain and what I call niken poop docs. I have had the same issues with docs. My pain is inner ankle/foot/calf too. For me I have pn but they say it should be treated like rsd and that being on it is very important even through the pain. Right now since I have tried cymbalta,elavil,neurontin,lyrica,tramadol and a few others which don't work I was reffered to a spinal cord stimulator. I was wonder if you have had any blocks too which I had in the start but didn't work. Also have you had an mri? I agree and its frustrating but I think you need to find another doc. I also notice my neuro's were less about pain control and more about just dong there tests. So that is where finding a pain doc is important. Please hang in there.

very often
 

as nerves heal, pain may even get worse. I have found that pain also changes it's characteristics. One day the pins and needles are tolerable,and in 2 months camps and deep aching may have taken it's place. It's better to grab hold of the pain issue and deal with it as soon as you can,pain can be very demoralising.

Since neither of your 2 neuros have neuropathy,and people on this forum do have it, I hope you feel some confidence when people tell you it was not an appropriate resolution to advise you to wait until you get numb. Numbness is not an option.

On top of the forum is message posted "useful stickies", scroll through those if you can and read about nutrition and supplements to help you heal.