NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)
-   -   New Here - Trying to Find Help for the Pain (https://www.neurotalk.org/peripheral-neuropathy/231702-trying-help-pain.html)

gryffyn 01-28-2016 02:32 AM

New Here - Trying to Find Help for the Pain
 
Years and years ago I was diagnosed with psoriatic arthritis and was dealing with nasty ankle and foot pain, chronic fatigue, and general malaise. A few years after that I began experiencing a nasty tingling in my toes, feeling like they had ants crawling all over them. I was diagnosed with Type 2 diabetes despite having lost 20 pounds since my last appt. where my blood work was normal. Go figure.

I was initially prescribed Gabapentin, Kombiglyze (sp.? - for the diabetes), Lisinopril (to protect my liver/kidneys?), Ibuprofen 800mg and Atorvastin (for cholesterol). No relief for the pain, and it made me foggy. I'm foggy enough without the gaba.

So then I was prescribed a 10mcg Butrans patch - it was wonderful that first time I slapped one of those on. I was good for about a year. But my pain has escalated and/or I've become accustomed to the patch dosage. The savings card does not apply to the 15mcg patch (which I find inexplicable and ridiculous) - so my PCP prescribed the 20mcg patch. Well doubling the dose almost quadruples the price!! I cannot afford it - so I am back on 10mcg and Tramadol for the bad days.

Still having pain. And I am miserable - I can't even get in 20 hours of work most weeks. I have nights I can't sleep even though my head is bobbing from exhaustion.

My husband and I participate in showing dogs - if I have a show weekend it can take me 1-2 days to recover once I get back home. Sometimes it feels like the tops of my feet are bruised, and my ankles just ache, and then the tingling/fiery toes and balls of my feet are the cherry on top of the miserable picture.

About the only time I can get any relief is when I visit CO and head to a dispensary.

I've lost about 50 pounds since my diagnosis. Hoping to lose 20 more. I've changed over to Invokana - it was actually supposed to be used in conjunction with the Kombiglyze (which I can hardly get down because it's so large), but I've dropped the Kom. My A1C numbers were still down; and my bad cholesterol numbers were also down even though I dropped the Atorvastin. So I seem to be on the right track there.

So I've now found myself here looking for information on how to relieve my PN. Can the nerves repair? If so, how can that process be helped? What alternatives can help with the pain? I've got to find some true relief before I go completely mad.

Thanks in advance for the info!

R. Lynn

mrsD 01-28-2016 09:46 AM

I would suggest you consult your doctor and get that lisinopril changed to another hypertension drug. Avoid all ACE inhibitors!
most of their names end in --il as a helpful hint.

I had the most awful reaction to lisinopril after taking it for YEARS. It caused a terrible accumulation of bradykinin in the tissues with causes pressure on nerves as the cells swell up with it. This is called acquired angioedema. It took more than a year for my body to get rid of that excess bradykinin, and now my doctor thinks I have the hereditary form of angioedema, since I have the gastroentestinal symptoms about twice a month still.

http://aacijournal.biomedcentral.com...1710-1492-6-14

Another common culprit in PN is that statin you took. I'd get on CoQ-10 ASAP to help restore your lost CoQ-10 that your liver normally makes, and was blocked by the statin.
Qunol makes a nice well absorbed form of CoQ-10, and is at Costco and WalMart and Amazon.100mg of this is about equal to 300mg of the older CoQ-10s that are still on the market.

Your symptoms may be due to the build up of the bradykinin. If they are, then you should catch it before it reaches crisis level like it did for me. (most doctors think the reaction only occurs at the start of ACE treatment, but it can occur at any time.)

beatle 01-28-2016 10:36 AM

I was on Lisinopril for 8-9 years, never knew it could cause PN symptoms.

mrsD 01-28-2016 11:02 AM

Quote:

Originally Posted by beatle (Post 1196006)
I was on Lisinopril for 8-9 years, never knew it could cause PN symptoms.

Some people are genetically prone to this reaction. Partially inactive C-1-inhibitor allows the bradykinin to build up. But people with normal complements 3,4 and C-1 inhibitor may be less likely to react to elevated bradykinin levels. Bradykinin, remains in the cells until an "event" triggers it. It can be prolonged stress, trauma, infection, surgery etc. Bradykinin then comes out of the cells and causing diffuse inflammation, in response to the stressor. People with genetic problems in manufacturing the C-1 inhibitor are the ones to have long term problems with the ACE drugs.

These drugs were synthesized from snake venom.

gryffyn 01-28-2016 02:07 PM

Thanks for the information regarding Lisinopril and Atorvastin. I had quit taking these months ago, in part due to budget issues. Since my bad cholesterol is going down, and the good going up, and I have normal blood pressure I will continue no taking them.

What I am taking is 10mcg Butrans patch, Invokana, Duloxetine, Gabapentin and I am still having problems controlling the incessant pain/tingling in my feet/toes.

Are there supplements that can help heal the nerves? Lessen the pain?

zkrp01 01-29-2016 12:17 PM

Eating to fight inflammation
 
Quote:

Originally Posted by gryffyn (Post 1196047)
Thanks for the information regarding Lisinopril and Atorvastin. I had quit taking these months ago, in part due to budget issues. Since my bad cholesterol is going down, and the good going up, and I have normal blood pressure I will continue no taking them.

What I am taking is 10mcg Butrans patch, Invokana, Duloxetine, Gabapentin and I am still having problems controlling the incessant pain/tingling in my feet/toes.

Are there supplements that can help heal the nerves? Lessen the pain?

Many here go to low carb diets as sugar doesnt help inflammation. Some folks go over 3000mg/d with the Gabapentin. I used Mortons Epsom Salt Lotion on the tops of my feet and was able to use bedsheets again. Epsom Salt baths for the feet helps others. I have used many supplements but tied them to general improvement not instant help, sorry. Wait, getting b-12 up to around 900 helped w/leg strength Good Luck, Ken in Texas.

mrsD 01-29-2016 12:44 PM

Diabetics lose magnesium thru the urine. So supplementing with it may help with the circulation to the toes.

You can soak in epsom salts soaks in lukewarm water, or use a magnesium lotion...(Morton's was recently discontinued).
There is a magnesium cream still available... Kirkman brand.

http://www.amazon.com/Kirkman-Labs-M...agnesium+cream

200mg a day on the lower legs/ankles and tops of feet may help the blood supple to the toes. (100mg on each leg)

We have all been protesting the Morton's decision but it will probably be useless. That lotion was a miracle for me and many others here. I am so angry, that I won't ever buy a Morton's product ever again!!!


All times are GMT -5. The time now is 09:18 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.