New To Polyneuropathy
 

Hello everyone. My name is Brandon. I am 27 years old. I was diagnosed with type one diabetes, 2 years ago and just recently diagnosed with peripheral polyneuropathy. I have only had it for about 3 weeks now, but the pains are almost unbearable. I have been taking Zonogran 3 times a day as needed for pain and then trazodone at night for pain and sleep aid. Unfortunately, I ran out of my Trazodone tonight and the Pharmacy was already closed. Anyways, the neurologist says it's just mild, but yet a simple sheet touches my toes or feet and I'm screaming in agonizing pain. I cannot tell you now how many times I have woken up in tears or flexing every muscle in my body in pure pain and watching my girlfriend watch me not knowing what to do or say. I feel likes it's torturing her more than it is me. I don't know what to do. I'm starting to feel depressed and ashamed. I don't ever want to go out and do things anymore. I can barely stand or walk far. I feel like I have no friends and no support. Her parents think I am faking it because they don't believe neuropathy can set on this fast in someone. So other than my girlfriend and my parents (who are 1500 miles away) I have no support. Some days, I just wish I would disappear.

Did you do an emg/ncs? Usually when a neurologist says PN is mild moderate or severe they are referring to the amount of nerve damage they are seeing on an emg/ncs. It usually doesnt refer to your level of pain. You can be in very severe pain even with moderate damage showing on an emg. small nerve fibers are not able to be tested by an emg/ncs. you need to get your pain under control to be able to have any type of quality of life. if what you are taking isnt cutting it you are going to have to work with a doctor to get a medicine or combination of medicines that will work. Usually either an anti depressant, such as amitriptylene or cymbalta, or anti seizure medicine, such as neurontin or lyrica or a combination of both are used for pain. not everything is effective for all people. There are a few people here who have had a very rapid onset of their symptoms and spread of PN. Glenntaj is one. there are others. do a search on rapid onset of pn. there is no reason to be ashamed. this isnt something you have chosen to do to yourself. it might also help you to find someone you can talk to about what you are going through, a counselor,social worker, psychologist etc. Being angry and depressed are normal reactions to what is happening to you.

Hi Branden, you have come to the right place, the members here know exactly what your going through and they are very helpful and caring.
My neuropathy was also caused by high blood sugars [prediabetic levels], mine was a severe onset of symptoms, so those people who don't believe how fast PN symptoms can set on so fast, need to get their head checked.
The good news is that nerves can heal, it is a very slow process but very achievable, if you get your sugars down as close to normal over time will help the repairing process a lot.
I found the supplement R-Lipoic acid helpful for the burning feeling.

best of luck to you :)

Just another data point: I went from no pain in my feet to full blown pain in less than 10 days. One would expect it to happen gradually, but that doesn't seem to be the case for many people.

Thank you all so much for your responses so far. Those are all great ideas. I have tried the Neurontin and no luck. Does nothing for the pain. Have been on the Zonegran for 2 weeks now and not much there. Doctor just keeps saying "just give it time". Last night I finally fell asleep but got only a total of 3 hours worth of sleep. I am constantly keeping my girlfriend awake or waking her up at night when she has to work the next day. I feel horrible because of this. I'm only 27. I should still be running and jumping. I can't help these feelings of being ashamed or depressed to be seen this way. I shouldn't be limping into stores or having to use wheelchairs and crutches after 30 minutes of walking.

Hi Brandon,
 

Welcome, and I am glad you found this forum. For me, amitriptyline has worked very well for sleep. It is an tricyclic antidepressant, but works to combat nerve pain, and has the very pleasant side effect of making you drowsy. It is also cheap, which is good. I am going to try capsacian cream for the burning pain, which seems to be worse at night. Keep checking in, and trying new combinations of meds. You will find so much great information here.

Thank you for the reply. I have found so far that the Zonegran dumbs down the pain very very little. Not enough to have any significant effect, if any at all on the pain. I was able to get my Trazodone filled today so that with the Zonogran should allow me to get some sleep with a mild amount of comfort from pain, but not much. I realized I have been using an analgesic cream and not actually Capcaisin, however I picked some up today and will try the results of all 3 tonight and let everyone know how it went. Also, in response to an earlier message that I meant to respond to and forgot to, I did have an actual EMG done and those were my results. I do not know anything else and have not seen anything else.

Moving onto more of why I joined this site, I joined this site not only for the wonderful advice that I am receiving from so many members, but also because of my depression from this horrible disease. It has pretty much taken over my life and as I stated before I have no friends to turn to, no one to talk to, no one who really, truly understands what I'm going through or the pain that I'm in. I went out today with my girlfriend to get a few groceries and had to use a power scooter chair at wal-mart and all I wanted to do was hide my face. I was so embarrassed that I am a healthy looking 27 year old guy scooting around in a chair and 80 year old women are walking around me like it's nothing. I wanted to park in a corner and just hide from the world. Hoping no one would ever find me. What do you do?

What to do? Even my children are no longer 27. I have always been the get it done type. Dig 40 feet of pipe ditch? I'm on it. Mow an acre of grass with a push mower? Got it.

In the span of a few months, I can hardly walk 50 feet. Sleep a few hours at night, waking every 45 minutes to burning foot pain. Climb stairs, not likely. Sitting quietly, but a burning, stabbing pain runs up my thigh.

I cannot stand for long periods of time, walking can be a nightmare, cannot sit in many styles of chairs.

The medications help a lot, but don't cover it all. I have had some success pursuing the nutritional part, maintaining some sort of exercise, and working on carrying on. I cannot work.

Difficult though it may be at times, I try to maintain a positive outlook. In a couple of years this should all be cleared up.

What was disappointing was reading about all the causes of neuropathy, then learning that mine is idiopathic. I guess that it would be better to be able to point a finger at something and nod.

This bulletin board helps, because I can read about successes that others are having. One person's success can go a long way in instilling hope in others.

Chris

It's different for everybody...
 

and even the same person will deal with this differently from day to day. It is very, very common for people with chronic pain to need an anti-depressant. It seems the most common combination of meds I see prescribed are Cymbalta (anti-depressant) and Lyrica (for nerve pain.) This is great if you have good insurance that pays for brand name Rx. The only way to know if certain drug combination works for you is to try them, and it can be time-consuming.

Just as important is a support system. This forum is great, since you can read about others and not feel like it's only you that is dealing with adversity. Also I have learned that with family & healthy friends--it is a balancing act. Be honest with your limitations. Although you will need to share grief and frustration with them, don't make it all you say, or it is easy for them to become overwhelmed or start to tune you out. For me, counseling is a must. Finding someone who specializes in chronic pain would be worth the search. You may need to go more frequently until you can find a med combination that gives you some relief and feeling more in control. Maybe reading a book to help you and your girlfriend understand the life changes that come with chronic pain would be a good idea. Search for some titles--there are many to choose from. A counselor may also be able to help you find a local support group so you can meet others that share your struggles.

Then there is healthy diet, supplements, exercise (even when you feel you can't--very important), meditation, spirituality, etc, etc. You have the opportunity to build some really great relationships that will support you, and don't forget to reach out to others--there are a lot of us out there.

I know it's alot to take in. I am on the journey myself. I am waking up each morning and taking stock of what does work and what doesn't hurt, and trying to focus on that as much as I can. One day at a time. :hug:

Okay, I'm back now. So the new update is the Capsaicin helped the last 2 nights along with the pain meds. I finally was able to sleep normally and comfortably. However, for most of the day today I have had a burning pains in my feet. Like they are literally just burning and I haven't used any of the Capsaicin on them since last night. I don't think I'll be getting much sleep tonight because of this and the burning has been getting progressively worse slowly over the course of the day. From one spot in each foot to full blown out burning all over each foot. Oh well, it's something we have to live with right? My mood seems to be a bit better today. I wasn't all jump for joy excited or anything like that, but I wasn't ready to saw my feet off at the ankle either. Anyways, another day come and gone.