Neuropathy

[Dianne]

I've diagnoised with neuropathy for several months now with no known cause, I have tried 5 different medicines which haven't worked or the side effects are so bad it's not worth taking. Since my last medication which I stopped taking 2 weeks ago my pain, burning, cramping and muscle weakness had become worse and then tonight I have developed a new symptom; itching almost like I'm allergic to something except I have not used anything new or different. Has anyone ever experienced this symptom? Also is it normal for the pain to return so much worse after discontinuing a medication? I need help but don't know where to turn my neurologist acts like I'm a problem and doesn't want to deal with me. Any and all advise is welcome. Thanks

[betsyrose]

Sorry to hear you are having pain. I am up this evening as I cannot sleep due to the pain. During the day my legs feel so heavy that I can barely walk. I went to a neurologist Wed. and she is doing some blood work and also checking for B12. I have no idea what caused mine and I have not been told except she said you definetly have neuoropthy and I am not a diebetic. Sitting in a hot tub of water does me more good than anything, but the muscles in my legs are getting weak that I have to get on my knees to get up, and sitting down in the tub is a chore too. I too have a bunch of meds I cannot take, as the side effects are as bad as the pain. She put me on a new one Wed. (LAMICTAL 25mg. to start and will raise weekly if I can tolerate it. She said some people take up to 500 mg. a day. I am very sensitive to meds. so she is starting me out slowly. Does your feet get ice cold at times. Here lately I have been getting real cold. Like to hear about you and your condition. Thanks

[Dianne]

I have had all the blood test and they can't find anything that is not normal, except my TSH was a little low but they just changed my medicine on that not too long ago. I have to take thyroid medicine because they removed my thyroid 8 years ago due to cancer but my doctor says that should have nothing to do with the neuropathy.

My feet do get cold sometimes which is real strange because they do it when it is hot outside or in the house sometimes I also get strange feelings of water dropping on my feet when I know there isn't. I do also get cold just out of the blue I will be sitting at work and all of a sudden I get real cold which is unusal for me because I'm always the one wanting to turn up the air because I'm hot but lately I've been putting on a sweater. I just figured the cold was caused from the pain medicine lowering my blood pressure.

Have you been to a neurologist yet? I've been to two of them and they both have a terrible bedside manner and once I was told that I have neuropathy without any cause they treated me like I wasn't worth their time. I just don't know where to turn everyone tells me to keep seeing different doctor's until I find one that will look further than just a few test and then get mad because I can't take the medicine they are prescribing, but of course I only have so many options because I live in a small town and I already have to go over 20 miles to the closest neurologist which means taking off more time from work which doesn't always go over well with my boss. I sometimes feel so alone with this because when I say that I have burning pain in my feet people just think I have hot feet they have no idea how painful it really is, thankfully my husband is finally beginning to see how much pain I am in so he is being a bit more understanding.

I love having someone to talk to who actually understands what I am going through and would like to continue having dialog with you. Hopefully you are feeling better today, I found the other night that if I take a muscle releaxer with my pain medicine that I sleep better and feel pretty good the next day well at least I did yesterday and today isn't too bad but I haven't done too much of anything.

If you would like to converse on regular email let me know and I'll send you my address.

Dianne

[fifi]

i have pn for over a year now and like you am still trying to find the right meds. my doctors have refused to refure as he said it waste of time as there do the same as he does. but i would just like to have some test done xray etc, because i dont see how they truely know as there are so many types and causes. im sorry to here that you and the other who have replyed have trouble with your feet, i must be a bit lucky then as i dont get that. i have pn in my upper body and at night it goes all over that efects me doing all most everything. like you all i have sleepless night and have to sleep when i just cant stay awake anymore, i normaly up for 30 odd hours or more b4 i can go to bed. doing simple things like washing up hanging washing out are normale day to day stuff i cant do it all makes it worse. but i still have too sometimes cos im stubern i surpose lol. but when u frightern to go out cos you know you pay for it later with pain! i had to give up my job, i now live on benafits. i have read so many storys about this subject. but i just wish i could be able to get out and about a bit. i hope your all a better day today

maria

[flsun01]

Hi Im new to the forum , have had DPN since mid April , it started within days of my hyperglycemic medicne regimen. Be sure you have your b-12 checked, a lot of these meds can really deplete b-12. My level was 450 and the doc said thats normal but a lot of studies show levels below 500 can present problems. I started a b-12 regimen and I can say the difference is like night and day. I have my level up to 900 and feel much much better. Studies show b-12 helping with the pain also. I take ALA-R daily along with l-acetyl carnintine. My pain has greatly diminished with Lyrica. And you are right about Neuros they seem to have a real attitude, ( at least mine does).

[jsallis]

I hate my neurologist. I understand how you feel. My neurologist said I have Idiopathic neuropathy. She said it is because my blood sugar and cholesterol are too high. The fasting test for blood sugar was 180 or so (I don't remember because they wouldn't give me a copy of my test results). It is pre-diabetic. My cholesterol is 210. I don't understand why she didn't ask me about my symptons. They have changed a lot since I first saw her. The tingling in my hands/arms/feet/legs turned into aching pain. Mostly in my arms and hands. I have itching sometimes also. I am getting weaker. I had to go buy a lighter skillet because my old one was too heavy for me now. It is difficult to write. Also, I am very stiff and walking slow and with a limp. I gave her a list of my symptons and she just read the first page and said pain, pain, pain. and gave it back to me. She wouldn't stop talking long enough for me to say anything. If I tried to interrupt her, she just kept talking. So I figured she could care less about me. Anyway, I've been using Coconut oil and eating healthy for the past few weeks and today I feel much better. The pain is almost gone. I still have the stiffness and am tired but I think the Coconut oil and diet are really helping. You might want to check out Dr. Fife's books. Thanks, Sue

[NervyLisa]

Hi,

I feel so bad to hear you're in pain.

I understand there are over 100 different varieties and causes of neuropathy. Yep, I have heard if there is no identifiable cause, it's called "Idiopathic" a name for "I don't know how you got this!"

Whereas, the most common cause is diabetes [60% of Peripheral neuropathy sufferers have this cause].

Also, do you have scoliosis, spondiolithesis, or other back problems? Do you drink a lot of alcohol? Did your parents have hammertoes and high arches and have difficulties like you?

The most common answer I read from PN sufferers is that they are told they sustained a trauma of some sort to their body.

My mom had several doctors - neurologists, pain management specialists, etc. from one of the most famous hospitals in the world, and none could help her! She passed away 20 mos. ago, bedridden and in great pain.

In answer to your question: yes, my family [both my mom and uncle have and had peripheral neuropathy from spine problems [scoliosis, spondiliothesis, sciatica, etc.] and, its hereditary version: Charcot-Marie-Tooth Syndrome, a form of MD] often experienced more pain after getting off medications.

There are many websites that explain and detail which meds are toxic to PN sufferers and exascerbate nerve pain and nerve damage.

I just read in a Neuropathy Support Group in my area where Neurontin is being investigated for causing heart palpitations.

With my family, Neurontin made them dizzy.

My family could also not tolerate CYMBALTA or LYRICA.

The only drug that helps my uncle is AVINZA, long-lasting morphine.

Now, he has to use that sparingly, because when he takes more than 3 capsules a day, he's prone to getting arrythmia, and A-fib, and, DOESN'T KNOW HE GETS IT.

My mom's heart medicine AMIODORONE, caused tremendous pain to her feet, ankles, calves, etc. The burning was terrible. She also was given FLAGYL, the antibiotic, without my knowledge while in a Rehab facility, and that causes extreme pain for PN sufferers.

Can you try anything homeopathic or natural? I keep reading where OMEGA 3 FISH OILS anti-inflammatory properties help MS patients [and hey, if MS is another neurological disorder, then why can't it help PN as well?].

I've become a neuropathy activist because of the lousy treatment my mom got, and the lousy treatment my uncle continues to get from doctors.

I welcome you to visit me at [moderator note: website address has been removed] and my blog, "Lisa G. from Beverly Hills" on [moderator note: website address has been removed] to read about why I think it's so important to raise awareness for these crippling, and debilitating nerve diseases and disorders.

FYI- Actress, [moderator note: personal information has been removed] did a PSA for The Neuropathy Association and it's viewable on their website: [moderator note: website address has been removed]. Lansbury wanted to open and encourage dialogue between PN patients and doctors. She also wanted to raise awareness. Her husband [moderator note: personal information has been removed] had neuropathy before he passed away.

[shargar]

I too have had some itching, I had not actually associated it with my neuropathy until I read your post. I have diabetic neuropathy which is quite severe. I am currently on my second medication which is not really helping with the pain, but does help me sleep better at night. After several years of extremely poor sleeping habits, I feel a lot better now that I am sleeping better!
The worst for me is the burning. I get it down the side of my feet (much worse on the right side). It is now also creeping into my hands....oh lucky me! My feet get cold a lot, which is weird for me too as I was always the warm person. I've been trying to find a support group, but there are none in my area. I am seeing a neurologist that specializes in DPN and she has been really great.

[Wildman]

I am a newbie to the world of peripheral neuropathy since being diagnosed with it 6 months ago. Been battling with it for the past 5 years and only in the past 2 years has the symptoms worsened. What I am suffering from is extreme pain and itching in both feet along with slight numbness in the toe regions. I did enjury my back during my time in the Air Force around 20 years ago. So that can't be the cause of this disease. I have been on a number of meds that have had bad side effects to them like ultram and cymbolta. Lately, I have am taking over 1,000 ng of hydrocodone and Neurontin to help ease the pain and itching attacks that has intensified over the past 6 months.

I am thinking of having surgery to kill the nerves in the feet to stop the progression of this disease.
So far I have been running into obstacles when I inguire on this. Understand that I don't want to live with the pain that so many of you have suffered with for the past several years. Just thinking about the economic and quality of life level.

Can anyone help me out on this.

[Dianne]

Wildman why not try nerve block shots instead of surgery, I don't know if they work but will be trying it when I can get into a pain management doctor in the next few weeks. I too injured my back several years ago and has surgery to remove a ruptured disc and after reading different forums over the past months I have noticed that there are a lot of people who have had back injuries and are suffering from neuorpathy now I do think that there is a connection but the neurologist seem to just blow that idea off. But back on the subject of surgery don't do it unless it is your last option you don't want to lose use of those nerves and then find down the road that there is another reason for your neuropathy.

Take care and do not despair someday they will find something that works.