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Horrible Continual Neuropathy pain...does it ever go away? Help???

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#1
strutkitty

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Hi
pretty new here....was diabetic a long time i guess...no ins no doc visits...finally had to go to the doctor cause the pain in my feet and ankles was so terrible i cried almost all day long and couldn't even sleep most nights...and i'm not a wimp...this went on for a year...until i couldn't even think straight and my whole life was just whittled down to the "Pain" with a capital P....went to doctors $211 and with tests $800...i now am in debt BUT i'm on diabetic meds...glucaphage, glucatrol, insulin long and short...and i'm keeping things down to under 120 90% of the time...low carb ....lots of reading and learning ect....my doc says the pain will never leave so i'm on 300 Lyrica a day...is that true??? because i KNOW i need to exercise more but my feet and ankles are still not 100% better...the Lyrica might be what's keeping it down to a low roar but maybe it's that i'm keeping my sugars down?

DOES ANYONE know first if they've had this kind of excruciating pain??? and if it ever goes away? or do they know if it's the Lyrica or just the sugars? please i just really need to know this all isn't in vain!

#2
Bountyman

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Managing your diabetes is never in vain. I've found that the residual pain left after one starts treatment depends on the damage done beforehand. Pain is the body's way of telling you you need to do something about it. Ignoring the pain...as you now know...isn't really an option. I had neuropathy in my legs for years; Feet swollen, itchy, ulcers on the back of my leg where my Achilles tendon is. After being diagnosed and treatment started...it took about 3 months before the itching stopped and another year before my skin finally healed. And I'm a fast healer. Nowadays, the only time my feet itch is when I abuse my diet and my sugars go over 140mg/dL. As soon as my blood sugar comes back down...the itching stops. Kind of an organic glucometer...

There's an upside and a downside to your pain, right now. The downside is the pain, of course. The upside is that you can still feel your feet. I doubt anyone can predict, including your doctor, how long it will take for the pain to reach its lowest level or go away completely. It's a matter of residual damage verses the body's ability to repair itself. One thing for sure...the more attention you pay to your diabetes and its management...the sooner your neuropathy will subside.

As to your doctor saying the pain will never leave; he doesn't really know that. He may have been trying to prepare you for the worst.

Hang in there. ;)

#3
Hooterville

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The most important thing that you can do is strive for the most normal BG that you can get. I think I've seen improvement in some nerve damage. Can nerves heal? I think there can be some healing. The question is how much. I don't think there can be an answer to that. I know that I'm determined to do what I can to heal some damage that I stupidly allowed to happen. I do that by striving for BG levels of a non-diabetic and I take some supplements. Specifically, Alpha Lipoic Acid, 600 mg per day and Evening Primrose oil.

A1c's: 1/11 9.4 ~ 3/11 7.9 ~ 6/11 7.8 ~ 7/11 7.6 ~ 10/11 7.5 ~ 12/11 6.4 ~ 3/12 5.9 ~ 6/12 5.4 ~ 9/12 5.4 ~ 12/12 5.3 ~ 3/13 5.1 ~ 8/13 5.5 ~ 10/13 5.4
Meds: 30 units Lantus - 2,550 mg Metformin
Diet: LCHF ketogenic, 30 to 40 carbs, dabbling in Paleo
Exercise: Lifting, walking, stair climbing
Weight Loss: 100.5 Pounds

She turned her can'ts in to cans and her dreams in to plans.

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#4
MCS

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My neuro was horrible in my hands and feet when first dxed. Bounty has given you good advise. They only thing I can add is what I took as far as supps to help.

1-2mg of methyl subling B-12 a day
1800mg total of ALA a day, divided 3 times a day
5-10grams of L-Arginine total divided 3 times a day

The ALA will help heal the nerves and may cause your BG to fall, proceed with caution, also this dose was based on my body weight of 250lbs

The L-Arginine dilates peripheral blood vessels

B-12 is need for proper nerve function

Now this may sound odd but when I first starting taking these my pain got worse, if you can believe that, tear jerking worse. It soon subsided with in 2-3 days, 2-3 weeks later the pain was almost gone. After several months I am pain free. I think what happens is the Arginine starts to get blood to nerve endings that have had low blood flow for a while.

Hope this helps, pain suckss
---------------------------------
Asprin 2-6 325mg per day
Amino Acids, Vitamins Bx, C, D, E
Hi-Maize 260, Ground and Whole Flax Seed
COQ10, Magnesium, Zinc, Fish Oil, Lisinopril
A1C estimate of 10-12 at dxed 5.6, 4.8, 4.6
Everyone has something to offer, you just have to listen

#5
strutkitty

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Thanks Bountyman! that gives me more hope for sure!...i'm hoping to be able to start exercising more if i can keep the pain down...and yep ignoring my problems OBviously wasn't one of my better ones LOL...hindsight as they say is 20/20...but without
insurance and hating to get my family in a financial mess, i waited as long as possible...is it better to exercise through the pain?...the only things i can't feel are a couple of toes on each foot and that's been going on for years which i actually thought was my MS and not the diabetes...*sigh*...had i only known!
thanks for "sharing" and answering!!!

#6
strutkitty

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Hi MCS...i'm so sorry i'm so stupid about all these things but what is methyl subling B12? and ALA? and L-Arginine? are they things i can get at a say walmart pharmacy?
i am SO sorry i don't understand the "jargon" here yet!!!...and what is my BG??? is that my 7 day average or 30 day average?
so sorry again to sound so stupid but i'm so new to this !

#7
strutkitty

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OK OK FOUND THEM ALL!!! once i figured that ALA was NOT either the American Library Association OR "a female demon in the Serbian and Bulgarian mythology" i found it LOL
and the rest...now i'll see if online is cheaper than walmart
thanks SOOOOO much!
(and i'm so thankful that it's not a female demon those are SO hard to come by on my income!

#8
MCS

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The ALA Alpha Lipoic Acid and the L-Arginine can both be found at WallyWorld about as cheap as anywhere. You will alao need to include Biotin, ALA uses a lot of Biotin to function properly. The B-12 in the cyno form can be found there as well. The problem arises with some people they do not have the intrinsic factor needed to convert it to the methyl form. Good Luck, hope it helps.
---------------------------------
Asprin 2-6 325mg per day
Amino Acids, Vitamins Bx, C, D, E
Hi-Maize 260, Ground and Whole Flax Seed
COQ10, Magnesium, Zinc, Fish Oil, Lisinopril
A1C estimate of 10-12 at dxed 5.6, 4.8, 4.6
Everyone has something to offer, you just have to listen

#9
Bountyman

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...is it better to exercise through the pain?


Not a doctor...but I'll take a stab at this.

Were it me, and exercising was crucial to my health, and the exercising didn't exacerbate my condition...then yes. Now, I'm not talking about "suck it up" exercising...like a Marine at boot camp, but pain that's somewhat in the background. Pain you don't have to push through to get results. Were that the case...I'd say no...find another way to get the same results so that when you decide to exercise you don't have to force yourself, or put it off...like going to the dentist. :)

#10
MCS

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Wondering how things are going for you?
---------------------------------
Asprin 2-6 325mg per day
Amino Acids, Vitamins Bx, C, D, E
Hi-Maize 260, Ground and Whole Flax Seed
COQ10, Magnesium, Zinc, Fish Oil, Lisinopril
A1C estimate of 10-12 at dxed 5.6, 4.8, 4.6
Everyone has something to offer, you just have to listen

#11
strutkitty

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BETTER!!! i actually mowed my 5 acres (riding lawn mower) but i couldn't have done that for the past year for sure!...enjoyed time with my horse too! (haven't ridden yet for the year but feeling more confident about getting back in the saddle again soon!)...found all those suggested drugs easy in walmart!...and i'm being very very careful with my food and insulin and taking my Lyrica...so i can't really honestly say WHICH of all of that is helping!?!?!??! but something i'm doing right is!...not completely pain free but by god i'm actually LIVING again!!!
thanks to ALL that i read here!!!
EVERYONE and EVERYTHING is SUCH help i can't thank all of you enough!
just reading everything and knowing i'm not alone!!!
and all the suggestions i read about food and stuff is WONDERFUL!

#12
MCS

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Thats wonderful. I hope things keep going in a positive way for you.

The Lyrica, if you decide sometime in the future to reduce this drug it must be done at a very slow rate, withdrawals from this stuff can be a real bearrrrr.
---------------------------------
Asprin 2-6 325mg per day
Amino Acids, Vitamins Bx, C, D, E
Hi-Maize 260, Ground and Whole Flax Seed
COQ10, Magnesium, Zinc, Fish Oil, Lisinopril
A1C estimate of 10-12 at dxed 5.6, 4.8, 4.6
Everyone has something to offer, you just have to listen

#13
jwags

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I'm glad the treatment is working. Many people are able to reduce their neuropathy with lower bgs and supplements. Maybe you will be one of the lucky ones. I had the beginning of neuopathy in my feet and hands. Now I only get it when my bgs creep up above 130.
HbA1c 5.3 3/11 , HbA1c 5/12 6.1
metformin 2550 mg
Moderate carb diet 40-75 carbs a day
3 T of Coconut Oil daily

Vit D, CoQ10, Melatonin, Multi vitamin, zinc, B 12
Chia Seeds , Flaxseeds

Exercise- Tennis - 2 hours/week, Power Walking- 2 miles most days, Hiking in the summer on trails and in the mountains

diagnosed Feb 2007
Age 64

#14
grammaB

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Glad you are finding some relief! I too had the beginnings of neuropathy in my feet at dx. I recently started ALA and am seeing a decrease in symptoms. I may have to look into the evening primrose too.

.....................
Barbara (T2)

At dx on 2-2-2012:
Glucose 243; A1c 9.5%; Cholesterol 211; Trigliceride 200; HDL 41; LDL 130;
Weight 180# - 5'5" - 62 years young
5-2-2012 fbg 96; Home test A1c 5.8% weight 167#

Medications:
Atenolol 50 mg; Amlodipine Besylate 5 mg; Bupropion HCL XL 300mg; Metformin HCL 500 mg (2); Pravastatin 20 mg; MultiVitamin; Vit D; Lutein; Alpha Lipoic Acid; Krill Oil; 3 Tb Coconut Oil




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