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.

Some of us cannot stand capsaicin at all.

Have you tried Biofreeze? This is a cooling gel and available on
Amazon for reasonable cost:
http://www.amazon.com/BIOFREEZE-Pain...ords=Biofreeze

People with diabetes really need to learn about some of the supplements that work for PN and diabetes.

Magnesium (orally or topically---do not use OXIDE form)
R-lipoic acid stabilized (improved form of alpha lipoic acid)
benfotiamine (an improved form of B1 thiamine)
Vit D3 (fix low levels)
B12 (methylcobalamin---fix low levels below 400pg/ml)

Diabetics lose magnesium in the urine, so since most people are not eating whole foods that provide this mineral anymore, diabetics especially can become low.

http://neurotalk.psychcentral.com/thread1138.html
Many of us now use with good success the magnesium lotion
topically made by Morton. Epsom Lotion, is available at WalMart now and you use only a quarter's diameter on each instep on each foot.

This is the supplement page on PN:
http://neurotalk.psychcentral.com/thread121683.html

There are many papers over the years on PubMed regarding lipoic acid and benfotiamine success with diabetic neuropathy.

Please sit down and read our forum and learn what you can do to improve your situation. Most doctors are not going to do this for you.

Have you been careful with the diet and watch your sugar levels carefully? When you get the diet rich in nutritious foods and fiber for healing, and bad cabs/sugar away that is number one. Do you take the supplements needed for the nerves to heal? Mrs. D listed them above.

Get blood tests for thyroid, vit D and B12 also.

The nerves also need circulation to be optimal. I use Far Infrared. Hothouse Dome and my FIR pad. The blood vessels have to be healthy to bring oxygen and take away toxins so the nerves can improve. It has worked so well for me, all of the above, then adding FIR.

Thankfully there are many ways to improve and heal for many of us. So glad you are here! Wish doctors knew more, but many do thankfully, usually integrative MD's are the only ones.

I used too much Capsaicin yesterday morning. I spent 9 hours in agony. Finally needing to go do something, I took a Tramadol 50 mg. After an hour or so, my toe pain abated.

In some sort of miraculous state, I was free from pain in my toes for the first time in months.

Imbued with hope, I eased into the evening. I had some Left Thigh pain while cutting some leather for my daughter. This usually stops if I sit down.

I went to bed without pain, and slept through the night, and awoke well rested for the first time in about 6 months.

It is strange to have slept through the night.

Problem is that I don't know what might have facilitated this relief. The Capsaicin, Tramadol, Slo-Mag finally catching up? Perhaps, I was simply exhausted from dealing with the over generous dose of Capasicin.

In any event, I am free from pain this morning and don't know what to do next.

Chris

I use tramadol very occasionally too. I find that once a week or less, is all I need. It seems to last me a day or two at a 1/2 tablet dose at night. (25mg)

I think people really can vary in response to this drug. Slow metabolizers may get longer duration of action.

Some people find it doesn't work at all for them! This is due to the metabolic needs of this drug...it has to be metabolized by the liver into its active metabolite, which then works on pain.

If your pain is confined to the toe? You might try Salonpas patches...the original formula. This takes inflammatory pain down topically with using oral medication. Apply on the top of your foot, near the toe. I love Salonpas, as I have sesamoid bone problems which can cause tendonitis at times.
http://www.walgreens.com/store/c/salonpas-pain-relief-patches-topical-analgesic2.56-in.-x-1.65-in./ID=prod4526-product?ext=gooMedicines_ampersand_Treatments_PLA_ Hot_ampersand_Cold_Therapy_prod4526_pla&adtype={ad type}&kpid=prod4526&sst=2c7bbf3f-0bc9-a1c8-d226-00004f5d8f2a
These small patches can be cut to size.
Keep the open pouch/envelop in a Ziploc baggie after opening.

The middle toes of the left foot have been the predominant, continuing source of pain. Most of the time they feel as if they are on fire.

The distal toes on the right foot have some degree of lack of sensation or enduring numbness. It is disconcerting, but not troublesome. After my first meeting with the neurologist and his exam, reflecting upon his findings of insensate areas helped me recall that much of the lack of sensation had been present for months, if not years.

The primary site of the neuropathy is my left thigh, leg, and foot. Much of the time, my left foot is ice cold to the touch and is insensate except to pressure. This extends above the foot to the sock level above the ankle to the lower leg.

Most of the time, my lateral, anterior left leg is numb. I experience shooting pain at times when supine. There is no loss of motor function. From time to time this will fade and I can feel my pants leg on my skin.

Usually the anterior, lateral portion of my left thigh is numb. When I stand too long, I experience a deep burning pain there. This will resolve upon sitting. It can be annoying when this area starts to itch. I worry that scratching it can produce lesions. I can scratch it and not feel the scratching, except in the periphery of the numb area.

The numbness in the thigh will abate spontaneously from time to time with the sensation of cold tingling that one gets when a foot that was asleep from sitting in a strange position wakes up.

When I walk, I can experience unpredictable burning pain in my left thigh and leg. The duration of the pain is unpredictable as well. Stopping and leaning on my trusty walking stick allows me to wait it out. I have learned to enjoy the view.

Before I started the Gabapentin, I had pain in both hips. The pain in the right hip had been there for several years. My GP had attributed it to sciatica from repeated back injuries in my work as a Paramedic.

The diagnosis is idiopathic neuropathy. I am a normally healthy, 64 year old male. No significant family history. Controlled glaucoma.

Unfortunately, the neuropathy manifested itself as I was recovering from a SLAP repair of the right glenoid labrum. I fell in January of 2011, tried this and that, had a MRI and surgery in November 2011, and physical therapy afterwards. I recovered completely from the labral tear, and had complete range of motion and strength by the 1 year mark.

I have some numbness in my left arm down the the little finger. It is apparent only in the little finger.

I have carpal tunnel syndrome in my right arm. It has been a problem for at least 15 years. I have developed coping strategies for it, so I pretty much ignore it.

The nerve conduction test confirms all of this, for what it's worth.

I currently take Gabapentin 2400 mg a day, Slo-Mag because the Epsom salt soaks help my foot, I started the B-12 oral as suggested on this forum and its sources, I have Tramadol 50 mg, but am not sure if it helps when I take it. I experimented with Capsaicin. Except for too much yesterday, it seems to help the toes.

Since the fall in 2011, I have been unable to work or do many of the things I have done in the past. Fortunately, I have a supportive, extended family living here. Good or bad, I was old enough to retire and did so.

Chris

That thigh symptom.... it really sounds like meralgia paresthetica.

http://www.aafp.org/afp/2000/0401/p2109.html
Figure 2B shows the lateral femoral nerve which is sensory only
leaving the abdomen under the inguinal ligament.

This is a sensory only condition and does not affect the muscles.

I had (have this in remission now) for about 10 yrs. Mine came from abdominal surgery and was in my right thigh. Stabbing pain, rotating with numbness, etc was the norm for me. Heat makes it much worse I found. When Lidoderm patches came out I used them at that spot on the diagram at AAFP site illustration 2B... for 2 weeks and it put the nerve into a remission. It has been a small miracle for me. It will twinge now and then but only briefly and never stays like it was at one time.

We have a forum here with more comments:
http://neurotalk.psychcentral.com/forum76.html
There are many triggers for this:
too tight belts or clothing

surgery in the abdomen, or bone harvesting in the back hip,

compression of the portion of the sciatic nerve exiting the spine at L4/L5...there are anatomical variations among people for this nerve pathway.

Have you ever tried Lidoderm patches? This may be a thing to consider. If you suspect your back, you could apply them there.
Otherwise, the groin/hip area on the diagram is the best spot for MP, and if used in the front, 1/2 patch might do it if placed correctly.