pn at my wits end
 

pn pain in both feet numb burning hot then cold taking lyrica helps but puts me into a fog cant work taking so have to put up with pain must work to live help iamso confused as what to do thanks

Hi John7685,

The short answer is: Start reading. There's a LOT of good information, links, experience, and advice on this site going back years from people like us - the sufferers. No guarantees, but probably/possibly better answers/info than you may get from your docs.

Do you have a specific dx?
Do you know the specific cause or is it "idiopathic"?
Tried any other meds, supplements, therapies, treatments?

Welcome aboard!

Doc

Dear Dr Smith
 

[QUOTE=Dr. Smith;737274]Hi John7685,
I live in a small town in Australia, not much choice of doctors, i am 55 year old male and symptoms came in one foot then the other one in a matter of weeks at Christmas time. General health good, not diabetic, good blood pressure, work hard in a physical job. Doctor seems to think its idopathic. What supplements and help could anyone please suggest.

Hi -

For starters, near the very top of this PN home page on the right hand side is a link that says Peripheral Neuropathy Supplements.

Read the list of what KWinkler is taking, and what MrsD says in response. MrsD is the supplements guru at this forum.

Good luck, and hope you can start a regimen of at least some of them soon. If you send a private message to MrsD, she can recommend the dosages for each.

I've really been helped by taking some supplements; namely B12 as methylcobalamin, B1 as benfotiamine, CoQ10, R-alpha lipoic acid. If you can't get them where you live, MrsD can suggest good on-line brands.

Good luck,

Sheltiemom

Hello John, and welcome to NeuroTalk.

Can you think carefully what might have triggered you so quickly.

1) what drugs were you taking then? Any and all drugs.

2) did you injure your foot somehow?

3) did you get a vaccine injection?

4) Were you ill with an infection or virus?

5) were you exposed to chemical fumes or solvents.

6) do you drink alcohol excessively?

7) do you smoke?

8) have you had blood work at the doctor? Has he/she tested your B12 and Vit D3 levels? what are they? (don't accept general statements like "normal". Get your real numbers).

Can you tell us about yourself? Age, habits, type of work, other general health details?

Im at my wits end
 

Mrs D - Thanks for your reply. Have taken 2x20m Cipramil for approx 7-8 yrs; I have had Planter Fasciitis in my right heel this time for approx 6 months, I have also had it in the past many years ago. I have very high arches and I wear orthotics. Had 2 cortisone needles in the last 6 months. Have had no other vaccinations or injections and have had no infections or viruses. I am a non drinker and a non smoker, a little overweight, try to eat healthly, have no added salt, work out in the gym 3 days a week, have normal blood pressure. When I think about it I sprayed under my house before Christmas with Chlorpyrifos to kill cockroaches. I did not think to mention this to my Dr. I have had extensive blood tests done - B12, D3, Thyroid, cholesterol, full sugar test. Have not got the figures but he said they were all within acceptable range. Have a nerve conduction test last Friday, will get the resuts this coming Friday. I am a 55 yr old male and work outdoors at doing a variety of physical tasks. My work does not have exposure to any chemicals or fumes. I can never sit still and am always outside working in the garden or doing something. I have always been a worrier and stress out easily and this condition is certainly doing that. The supplements I have taken for approx 20 yrs are 1000mg Vitamin C, Mens multi vitamin and Vitamin B complex. Since getting this condition I take 1 Coenzyme Q10 150mg and 2000mg fish oil tablets. I have also ordered over the net some Benfotiamine 150MB Multi-B Neuropathy Support Formula capsules. What dose would you recommend to take? The Dr prescribed Lyrica 75mg 3 times a day but I cannot function taking this dose, so to function I take 25mg 5 times a day. This seems to hold the pain off at a manageable level at the moment. I seem to manage the pain better while at work than I do at home at weekends. I think it would be best to work as long as possible with this condition. Instead of taking 2 Cipramal the Dr substituted one of my Cipramil tablets for 1 Endep 10 at night. The numbness started on my right foot across my toes about 2 weeks before Christmas. As I have had back trouble in the past I thought I had sciatica. I went and had Chiropractic treatment but it did not help. The numbness turned into burning or freezing cold in a matter of a week and quickly spread to my left foot. The Dr gave me a CT scan of my back. The result was "History: Paraesthesia, bilateral distal feet. Report: The lumbar vertebrae abnormal alignment. There are some degenerative changes at the L4/5 and L3/4 levels and to the facet joints and narrowing of the spinal canal adjacent to the disc. It is unlikely these changes cause a spinal stenosis as the epidural fat space is preserved. There may be some impingement of marginating nerve rootlets in the lateral recesses, but this is poorly assessed on CT and MR would be more appropriate investigation. There is no significant impingement of existing nerve roots at the spinal foraminae. The bones otherwise have normal appearances". Any help re medications and supplements to help me would be very greatly appreciated.

"I am a non drinker and a non smoker, a little overweight, try to eat healthy, have no added salt, work out in the gym 3 days a week, have normal blood pressure."

and then we have people like Keith Richards 70, smoking 60 a day and probably a bottle of scotch.

P/N can be totally unfair.

problem is it seems just about anything can trigger P/N :(

Good luck with your journey :)

My PN is from ? and I have been so tested and it started at 28. Anyhow have you been tested for auto immune conditions?What about mris? Anything you may have not thought of during life as being a big deal but may make a connection? For ex for myself before I developed rsd/pn for 2 years I was sick every other month with a fever. I also had severe tight calves. At the time I thought it was weird and went to the doctors for both but nothing was done. In the mean time while waiting for a concrete dx are they helping you with your symptom relief?

John, first off you really need the numbers from your B12 test and D3.

The labs for B12 typically go down to 180 or 200 which is very low.
Anything below 400 needs to be treated. Same with D3. Some labs report 30 as normal (it is for rickets only) but optimum levels are much higher for health.

I'll look up that chemical...as it seems suspect to me, and get back to you.

That insecticide has potential for causing nerve damage. It is an organophosphate, and typically should wear off with time.

http://www.ncbi.nlm.nih.gov/pubmed/7531775

It may be that you were developing this anyway, and the insecticide pushed you over the edge. But I would consider it as a possible trigger.

Please for your sake get the numbers for your B12 and D3. If you are low in B12, the insecticide may have affected you more than if it were higher.

And--
 

--I do think you need a lower back/sacral MRI, to really visualize possible nerve compression there.

One of the nasty thing about neurologic symptoms is that one can get the exact same symtpoms from systemic conditions (i.e., diabetes, autoimmunities) that one can from more local ones (i.e., spinal compression), and these can be felt in the exact same place even if they don't "begin" there.

Mrs D - Thanks for your reply. I will call at the Dr's today and get my B12 and D3 levels.

Mrs D - Went to the Dr today.
Results of tests:
B12 pmol/L 255 on 4 Sep 09 and 296 on 10 Jan 11.
I will give you some other results in case they are relevant:
R.C.F. nmol/L 1609 on 4 Sep 09 & 1338 on 10 Jan 11.
19 Jan 11: Serum Iron 18 umol/L, Transferrin 33 umol/L, Transferrin Saturation 28 %, Serum Ferritin 261 ug/L, Blood Lead 0.06 umol/L, Blood Lead 1.3 ug/dL, Zinc 13.7 umol/L.
No test done for Vit D3. Will request one this Friday, also one for pesticides. Thank you.

Thanks John. Your results need conversion to US values:
http://www.unc.edu/~rowlett/units/sc...ical_data.html

Your B12 is borderline, the second one is just about 400. So you can choose to do it orally yourself. It might help some to try for 3 months or so.

Chlorinated hydrocarbon pesticides are stored in fat. That means, the brain and other fatty tissues(spinal cord) in the body. So testing later after exposure may not reveal them.
Losing body weight may release them back into the serum.

They are long known causes of neuropathies, but when I searched yours, it was given a "lower" incidence of toxicity. This opinion may change...since opinions like this exist for just about everything. BHA which was cleared as non toxic by US FDA, is now found to be a terrible substance, leading to obesity! It poisoned people for over 20 yrs!

Thanks for the info Mrs D. I will try the Benfotiamine 150MB Multi-B Neuropathy Support Formula for about 3 months. What daily dosage do you recommend. Also do you think I would benefit from trying a course of Alpha Lipoic Acid and if so what dosage.

Is that Benfotiamine in a mixture? or is it alone?

If alone 300mg a day to start. After 2 or 3 months you may be able to go down to 150.

If that product is a mixture....please give me the other ingredients.

Alpha lipoic should start at 600mg a day.
The newer form, r-lipoic may be used at 100mg a day.

Thanks Mrs D. Benfotiamine 150MB Multi-B Neuropathy Support Formula - Ingredients: pharmaceutical grade benfotiamine, plus B2, B5, B6, methyl B12, folic acid, magnesium stearate, silicon dioxide, microcrystalline cellulose, gelatin.

John, I need to know the milligrams of each thing too.

If it has that methyl B12 in it, you need to take it on an empty stomach in order for that to be absorbed properly.

I amso down with this terrible condition drugs so expensive dont think i could live to many years feeling likethis eating what savings i have away

there are ways to save on supplements.

Many of us use iherb.com

I don't know where you are...but the test results suggest nonUS location.

The one you chose is more expensive than most.

mrs D supplements are expensive can not buy any ones that i need her in australia lyrica 75 mg 80 dollars a box iam so worried how iwill cope if i can not work money wise and mental health wise i have a wonderful wife who is so strong and i love her so much sorry for going on i realize i must focus on controlling my pn and being depressed will not help

Brian who posts here also lives in Australia.

Search his name on members list... he has some low cost ideas that he used.

While on your journey for a cause and cure, be aware of your footwear. Having a physical job you may be wearing tight closed shoes. If you have relief without shoes, then you need to find socks and shoes that do not restrict. My neuropathy began in my right foot and moved to the left. Itching, burning, sweating, and a sense of it crawling up my right leg. I refused the drugs and pursued the supplements, but the most relief has come from wearing flip flops, a cool type of crocks and larger shoes when I have to. not all socks are equal either. It can really keep your sanity. I have occasional flair ups but still no drugs. I know this whole thing sucks, but don't give up.

lyrica
 

The side effects with the Lyrica are horrible to start, but if you stay with it the side effects get easier. Just stay with it and fake it through the side effects. I had to work while dealing with them and my job requires me to make financial arrangements with patients. It was very difficult. But after about 6 weeks the side effects went away. Just keep telling yourself they don't last forever.

Hi everybody, I would like to ask a question. I have been taking Lyrcia 25mg 3 times a day. It's been helping my feet on end but I've now developed chronic constipation. I don't want to take laxatives because I know they are no good to take. Can someone please give me a soluton to this problem. Thanks.

Oh yes the dread constipation which I know too well. A few things I have tried I will suggest. Prune juice or baby prune food,healthy fats lubricate and ground flaxseed which was suggested you can put in oatmeal which has fats but also fiber,adequate water,for me I think the magnesium I take helps to an extent,enough fiber from whole foods but not too much. I am not sure if you can do any activity but that helps I think keep things move. Coffee aids sometimes or other warm beverages.

Constipation - "natural fruit laxative spread"
 

Here's a recipe for "natural fruit laxative spread" that has appeared multiple times on alt.support.chronic-pain (also available via Google Groups) I believe the original source is Dr. Work, MD, who used to post on that group many years ago.

I'd say, "Enjoy!" but.... y'know....

Doc

This recipe, also known as Yakima paste is quite effective for many on an ongoing basis. I have a problem with chronic thrush so I substitute molasses for the sugar. The dried fruit has considerable sugar to start with. I also add one half pound of dried apricots for flavor. I use various protocals and rotate them about every ten days as they become less effective. Go figure. :rolleyes: Hope everyone has a comfortable and blessed weekend.

Molasses itself is quite laxative for many people! ;)
It is a good choice.

Yep
 

Molasses (by itself) is on my "rotation" for keeping things moving. I take a large spoonful (sorry no exact amount) and chase it with a glass of hot water. You could just make a hot drink out of it but to be honest, I don't care for the flavor. I just "take my medicine" and chase it with hot water. Hydration is sooo important. I think most of us know that we need to be mindful to keep our vegetable and fruit fiber up but if you have a sluggish colon and don't stay well hydrated, the fiber can set up like a cement block. I "juce" just about every day and often add some molasses for good measure.

I mentioned that when I dug this recipe out this afternoon for a post in another forum. I was thinking of diabetics at the time, but in looking it over, I'd have to find something else entirely if I ever needed something like this. Sugar is pretty much off the table (wordplay intended :rolleyes:) for me between the pain diet and being a PN trigger. I guess I'll cross that bridge if/when I come to it.

I see it appears in the archives under Yakima paste going back as far as '06. I'd never heard of it by that name until just now. A cursory googling suggests it may be (related to) an old trapper's bait - probably the stuff the exterminator we hired used for coaxing the raccoons out of our crawlspace...

Who'da thunk raccoons had constipation issues? :rolleyes:

Doc