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-   -   Neuropathy Help (https://www.neurotalk.org/peripheral-neuropathy/182157-neuropathy-help.html)

JohnLemon 01-09-2013 08:04 PM

Neuropathy Help
 
About six months ago I went to the doctors because of pain in my legs and hands. I found out I was diabetic and that I had Neuropathy. I have been on a bunch of different medications to help with the pain they have all either offered minor relief or none at all.

Neurontin - No Relief
Cymbalta - No Relief
Lyrica - Minor Relief
Elavil - No Relief


As time has gone on things have actually become worse a burning feeling on my feet/legs/hands/arms and actually pretty much any where if something is rubbed up against it.

After seeing my neurologist and trying these medications he is rather sure that the Neuropathy is not caused by my diabetes. I am to have a Cervical MRI next week. He is hoping he can do something to lower my pain levels until I am able to see nerve disease specialist.

I am wondering if anyone else has had similar issues with these medications not helping and what they have done.

And any other input would be greatly appreciated.

Brian 01-10-2013 12:11 AM

Hi, I had diabetic neuropathy, with the Elavil what dose were you on because it took a large dose to help me with the burning etc, that with large dose trammadol sr helped me.
...and how our your sugar levels when the burning is at it's worst ?

JohnLemon 01-10-2013 02:17 AM

Quote:

Originally Posted by Brian (Post 946179)
Hi, I had diabetic neuropathy, with the Elavil what dose were you on because it took a large dose to help me with the burning etc, that with large dose trammadol sr helped me.
...and how our your sugar levels when the burning is at it's worst ?

I am on 50mg Elavil at bed time. I also have Ambien to help sleep at night if I need it. It seems to only work 25% of the time tho.

My blood sugar when the burning or stabbing is 80-120. Most of the time the burning only happens when something is touching my skin. I tend to wear thin cotton pants now, this helps a lot. The stabbing feeling I get in my legs/hands/feet are harder to deal with because the are rather random.

Currently both of my index fingers feel like they have metal or glass splinters in them. Is this a common feeling as well?

Is lightheadedness when moving ones head have anything to do with Neuropathy? I have been having it a lot lately.

mrsD 01-10-2013 07:39 AM

Welcome to NeuroTalk:

Are you taking other drugs (not the PN ones)....like perhaps a statin for cholesterol?

Diuretics like lasix or hydrochlorothiazide? Something for blood pressure?

Have you had Vit D and B12 tested to see if you are low in either or both? Improving Vit D levels in diabetics helps with pain.
B12 you should have done and get the numbers exactly....In the US the ranges have NOT be amended to reflect new low that is recommended now for the past 10 yrs. The new low should be 400 US units, and anything below that is no longer "normal".
Taking a supplement would then be indicated and our B12 thread is here:
http://neurotalk.psychcentral.com/thread85103.html

If you are a poor methylator and have the generic errors in MTHFR enzymes your nervous system will become damaged unless you use the active form of B12 called methylcobalamin.
You could also be low in folate, as it is methylated to be biologically active by the same system.

If you took Cipro or Levaquin or Avelox recently, for Metronidazole (Flagyl) this can also damage nerves. Statins
also can cause nerve damage.

Many common RX drugs will deplete nutrients, causing nerve symptoms. Diuretics deplete B1 and magnesium and potassium.
ACE inhibitors for blood pressure deplete zinc over time.
Acid blocking drugs for the stomach block absorption of B12, folate, magnesium, calcium, zinc and iron.

So first off, you need to look at your life and recent past, to see if something you consumed has caused this to happen. Then we can move on the supplements that help diabetics...
lipoic acid
acetyl carnitine
CoQ-10 (must be taken with statins)

also, edit to add:
Have you had vaccines recently?
And what do you do for a living, and hobbies...toxins can come from that part of your environment.

Have an illness or food poisoning recently?

JohnLemon 01-10-2013 08:52 AM

I am also taking Divalproex ER for Epilepsy, which I have had for 15 years now.

I have had a lot of blood work done which included testing for Vit D / Vit B12 deficiencies.
My neurologist did other blood work to check for other signs that could cause this issue.
Which has lead him to believe it is something besides diabetes. There are some other factors he is taking in to account. I am guessing he is looking for nerve damage in my MRI or compression. The nerve disease specialist he wants me to see does not have a opening for 5 months.

I write computer software for a living, and can not think of anything that I have been around that I could have been exposed to any toxins.

I had one vaccine when I finally went to the doctor about the leg pain and found out about diabetes. It was a pneumonia vaccine.


About 5 years ago I did have Diverticulitis, then I had Gastroparesis for a 2+ years.

mrsD 01-10-2013 09:21 AM

Thank you John,

This is a starting point. Get those blood levels of D and B12, , and did you have carnitine measured? Please get your number results for the B12 especially, because you could still be low and not know it.

The medication you take depletes carnitine.
http://www.ncbi.nlm.nih.gov/pubmed/10852092

Carnitine is one supplement used for some PNs, that are drug induced. Chemo drugs often deplete carnitine as well, and this is due to mitochondria damage.

This is our mitchondrial information thread:
http://neurotalk.psychcentral.com/sh...t=mitochondria
Damage to the mitochondria over time stops the cells from producing energy. The nervous system seems very prone to this, and damage to it leads to all sorts of symptoms.

Mito damage is now thought to be a major cause of PNs but that is still in the research arena.

Do you eat foods that supply enough magnesium daily? If not doing that is very helpful, or a supplement (any type except OXIDE form which is not absorbed). Dose magnesium to start at 1/2 the RDA which is about 200mg elemental. Diabetics lose magnesium in the urine more so than non-diabetics, so looking into that would be helpful for you.

Here is my magnesium thread:
http://neurotalk.psychcentral.com/thread1138.html

Marie33 01-10-2013 02:51 PM

Quote:

Originally Posted by JohnLemon (Post 946122)
About six months ago I went to the doctors because of pain in my legs and hands. I found out I was diabetic and that I had Neuropathy. I have been on a bunch of different medications to help with the pain they have all either offered minor relief or none at all.

Neurontin - No Relief
Cymbalta - No Relief
Lyrica - Minor Relief
Elavil - No Relief


As time has gone on things have actually become worse a burning feeling on my feet/legs/hands/arms and actually pretty much any where if something is rubbed up against it.

After seeing my neurologist and trying these medications he is rather sure that the Neuropathy is not caused by my diabetes. I am to have a Cervical MRI next week. He is hoping he can do something to lower my pain levels until I am able to see nerve disease specialist.

I am wondering if anyone else has had similar issues with these medications not helping and what they have done.

And any other input would be greatly appreciated.

Hi John, I started taking 50mgs of Lyrica 10 days ago for small nerve (idiotic) neuropathy. (they still cant find a cause, even though I am considered "prediabetic", a1c was 5.7 when this all started back in 3/11.) Im having alot of the same symptoms your having and some... So far I have gained 5 lbs on lyrica in only 9 days. Other then weight gain (lucky for me Im thin), side effects have not been to bad. but I am on a very low dose. I have been reading about lyrica side effects, and nasty withdrawal side effects..this is scaring me to a point where Im considering stopping the lyrica instead of increaing it. So far it hasnt done anything for my pain. How long did you take lyrica and how much were you taking when you decided to stop it.? Did you have withdrawal symptoms?
I also tryed Cymbalta one 30mg dose , it was horrible and neurotin caused panic attacks. had to stop at just 100mg a day after 4 days.
Also, why does your neurologist want you to see a "nerve specialist", How is he diff from a neurologist? My neuropathy was dx with a skin punch biopsy. All other tests including Bldwrk, EMG, NCS came back normal..I feel the need to go for another opinion for more testng, Im having a difficult time accepting its idiopathic..Good luck to you!

Brian 01-10-2013 05:28 PM

Quote:

Originally Posted by JohnLemon (Post 946200)
I am on 50mg Elavil at bed time. I also have Ambien to help sleep at night if I need it. It seems to only work 25% of the time tho.

My blood sugar when the burning or stabbing is 80-120. Most of the time the burning only happens when something is touching my skin. I tend to wear thin cotton pants now, this helps a lot. The stabbing feeling I get in my legs/hands/feet are harder to deal with because the are rather random.

Currently both of my index fingers feel like they have metal or glass splinters in them. Is this a common feeling as well?

Is lightheadedness when moving ones head have anything to do with Neuropathy? I have been having it a lot lately.

I thought it was a low dose, mine was 150 mg at night and 25 mg in the morning plus 300 mg Trammadol SL x 2 daily [ 12 hour tablets].

The supplement R -lipoic acid 100 mg, helped me with the burning part.

Marie33 01-11-2013 12:34 AM

Quote:

Originally Posted by Brian (Post 946357)
I thought it was a low dose, mine was 150 mg at night and 25 mg in the morning plus 300 mg Trammadol SL x 2 daily [ 12 hour tablets].

The supplement R -lipoic acid 100 mg, helped me with the burning part.


I guess 150 at night and 25 mg in the morning was a low dose. Did you have any side effects while taking it? How long did you take it for and did you having any problems with withdrawal with the lyrica?
I take R lipic acid too, it helps me with the burning part too. I guess I will continue taking the 50mgs of lyrica for now, until I can find something else with less side effects and helps with this pain. Does the Tramadol help you? Some people on here are taking Savells, maybe I will check it out.
Have you found a cause for your neuropathy?

JohnLemon 01-11-2013 12:45 AM

All the medications I have tired for neuropathy I was on for at least one month, with a dose increase after two weeks.

The Neurontin reached max dosage after one month.

At this time Elavil was added started at 25mg at night.

After a month or so Elavil was upped to 50mg at night.

Neurontin was removed for Lyrica.
The Lyric started at 50mg twice a day then moved to 75mg. After a month with no pain reduction my doctor increased.

Cymbalta was added at 30mg a day.


After my last doctor visit since Lyrica and Cymbalta have had no help he wanted me to stop taking them. Now I am just waiting to have my MRI and from that I am under the impression he will prescribe something else. He does seem rather worried tho, with only being 28 and only having been diagnosed with diabetes six months ago.

On another note does body temp seem to increase pain for anyone else? When I am in a cooler room it's not as bad but everytime I am in a warmer room my pain levels shoot up and the stabbing feeling starts all over my feet and legs.

Thank you all for replying and giving me your input!


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