I need neuropathy support, am I being a big baby or do you feel this too? - Neuropathy Message Board

Julz611 · 04-21-2006, 12:21 AM

Hello Everyone, My name is Julie, I'm 31, and I am a type 1 diabetic. I have fibromyalgia and have been diabetic since August 2004. About 5 months ago, I started experiencing tingling and itching in my feet. And over the last couple months, it has gotten out of control. I have read alot of posts about hands and feet but mine goes further and I need advice. Like I said it just started in my feet and then it started with pain and burning in my hands and feet, it hurts so bad and it feels like the little bones in my hands and feet are bruised and burning. Some days I can hardly put on socks and shoes and writing or eating is very painful. . Then a couple months ago, I started having burning, pain, numbness, and tingling in my back. Then it spread to my arms and legs. I had an EMG done a couple weeks ago and had some nerve damage in my back and neck but overall it looked as if no bad permanent damage has been done. I started on Lyrica 4 weeks ago, my doctor has been increasing my mg and I now take 1-150 mg and 1-75 mg twicw a day. But my pain is still getting worse. My skin is so sentitive and feels like I am fire. It's too sore to touch and when my clothes rub my skin, it makes it even worse. My sweating is horrible, I used to be a freeze baby and not heat is not tolerable, however, when I am in a cooler climate, I get chills so bad and the pain is even worse in the cold. I can't win and I am ready to jump out of my skin. I am looking for support on how to get relief from this horrible burning and pain. I have had fibromyalgia since I was 28 and have always been able to tolerate it, whereas, the neuropathy is taking over my life. I need to know if I am just getting worn down from all my health conditions and irritated with pain or are there other people who experience such pain and burning with their neuropathy in their back, arms, and legs too. Please help me and tell me how you feel, I will greatly appreciate it. Thank you for your time reading this.

Julie

Tight Socks · 04-21-2006, 10:21 PM

I'm a 58 yr old woman who has had pain (diagnosed as peripheral neuropathy) going on 5 yrs now. I'm a type 2 diabetic and they think that it may have been caused by being undiagnosed as diabetic till just after the pain began. It is in both feet up to above my ankles and burns like fire when time for a pill, but has gradually narrowed down to what feels like one long nerve on the outside of my right foot. Both feet burn when it gets bad though. I was up to 4500 mg a day of neurontin, if you can believe, but stopped and now take 150 mg of Lyrica 5 times a day, which works pretty well. I don't feel as tired form Lyrica and 5 pills is so much better than 15 a day, which always stuck in my throat. It's a real bummer, this constant campanion (pain), but what can you do? I just pray that it doesn't spread any further. That's my real fear. I work full time and spend a large part of my day on my feet so I just crash when I get home. It's hard to explain to others just how bad the pain gets, especially when outwardly we look just fine. It's a big problem, I've found. One thing I've found out is that it works much better to take a pill as soon as I can when the pain stars to return real bad because once I have it, it's so much harder and it takes much longer to bring it back under control. I am sorry that you are suffering so much and hope things improve. This site is a good thing to visit to commiserate with others with like experiences.

justfine · 04-23-2006, 02:08 PM

Hi julie , I'm also new here , I have neuropathy due to ruptured discs in my neck that permanently damaged the nerves throughout my upper back & neck.It is now going on 15 years since I fell and did this. I'm slowly losing the feeling in my hands the burning is unbelievable, so no you are not a big baby. I very much understand what you mean by It hurts to wear socks because it hurts 4 me to sit back against anything, even a pillow. So sleeping is out of the question I can't lay on either side because they go numb within minutes. On top of that after mt last cervical operation my migraines went to 3 to 4 a week. I take oodles of meds that keep me in a fog. I'm not allowed to lift more then 5 lbs. so therapy is limited. I do have two good Docs that I do trust but it took along time to find them. My pc & my orthopedic. My new neuroligist is pretty good I have only been to him 3 times so the verdicts not in yet. He specializes in migraines. I'm really sorry this is wearing you out! I totally get I'm never lower then a 7 on that blasted pain scale . Other then lyrica do they give you anything for pain. I was on lyrica but insurance won't allow it because i'm not diabetic and it would known as off lable use so I have to appeal it. I also tried neuortin with bad side effects so I had to stop. But for pain I have oxycontin, endocet for break through pain. maybe you can talk to your doc, let him know how much pain your in. You should not suffer! Good Luck!!!!

NHone · 04-25-2006, 11:20 PM

I'm really surprised none of your doctors has done an intracellular magnesium test. This could be the main cause of all of your problems. It CANNOT be just a serum magnesium test, but must be intracellular. You might want to search (seelig low magnesium) then type in your ailment after the word magnesium. Dr. Mildred Seelig is the world's foremost magnesium expert.

suggus · 04-28-2006, 08:14 AM

You're not being a baby, some people need support.

I have had slow progressing neuropathy for aboout 10 years and no diabetes. Your condition sounds like mine but much worst.

I went to a neurologist 7 years ago who didn't know what to do so he treated me with voodoo. I went to another one two years ago who said 'you have neuropathy, what do you want me to do?'
Last December I went to another neurologist who seemed locked into researching my condition with very expensive tests and no cure except more vitamins that I am already taking.
BTW - I had the worst conduction test he had ever seen and could not understand how I was walking. I told him 'the pain', that is how I know where my feet are...... he wanted to give me something for the pain!

My self healing approach includes many vitamins. The latest help is vitamin b-12 shots I give myself @ 500mcgs a week. It does seem to mellow out the pain.
I love aspirin and believe there is an inflamation component in my neuropathy. I am already on a blood thinner so I can't take aspirin so my next appointment with the doctor is to get a cheap anti-inflammatory drug to test. I already take some herbs that deal with inflamation.
I have found carnitine (ALC) to help with the pain but jurys still out on this one since I am uping the dosage slowly because it plays with my high BP.

I realize it took 10 years to get here and any 'cure' or aid will take years to tell me if it is working.

After so many years of living with this and observing my reactions to everything I think neuropathy is strongly linked to inflamation and to sugar. Or to genetics as in CMT syndrome.
In your case with the sugar connection that's a no brainer. However there seems to be a condition triggered by the diabetes in your case and unknown in others without diabetes that disrupts normal nerve health. I am sure there is a health condition unrecognized by doctors that is a non-diabetec reaction to sugar and high sugar consumption.

I would suggest taking all the vitamins and herbs you can find that supports the nerves and it's myelin. Keep active to allow the brain to reprogram control of your motor nerves.

BTW - just a thought - my condition started sometime around my first fluoride treatment from a dentist. I had 2-3 before I confirmed a real reaction to the treatments. We all get a daily dose of this neuro-toxin in our tooth paste, and water in some cities.

Good luck with your battle. We are all different yet fighting the same enemy.