[keepingfaith]

Hi all...first off I just want to say I feel for everyone who is going through this...it is terrible! I'm still working on a diagnosis however I have been told by my neuro that he is leaning in the direction of peripheral neuropathy. So here are my questions...thank you for taking the time to respond. I really appreciate it!

What are your primary symptoms of PN?
Was it a slow steady progression? or did it come on suddenly?
Are there times of the day you notice it worse than others?
Are there certain activities that exacerbate the symptoms? (for me it's walking or standing)
Any natural remedies I can use?
What do you believe is causing your PN?

I apologize for all the questions I just feel like nobody I know understands what I'm going through and I also wonder if I have something else going on.

[Stacy2012]

My symptoms were slow, and my doctor and I believe it is brought on by hypothyroid that has been untreated for many years. I also believe spiking blood glucose numbers could attribute to it, though I am not diabetic I believe I am prediabetic and my meter shows I spike with high carb meals.

About 2 years ago I noticed occasional weird feelings in my toes, it was only occasionally, usually at night in bed, my toes would burn. I ignored it.

After a year of this, pain in my feet/heels was excruciating. I attributed it to overweight issues, made excuses like plantar faciitis, etc. My pain got worse and worse in my heels and the burning/tingling became more frequent through the year.

A year later I could no longer ignor it, started my own research, led me to PN and mostly diabetes. Meanwhile I had been diagnosed with hypothyroid but did not start medication since I was dealing with other health issues such as high blood pressure, i ignored they thyroid.

Finally noticed the back of my heel went completely numb.

Went to doctor had blood work up, sensory test, etc. Long story, long process. Got thyroid under control with meds. Too little too late, pn still a problem but no where near as bad as some folks have it. I am not on any medication at all. So far supplements help. Benfotiamine, B12, magnesium, etc help. Burning is my worse pain. Still trying new things everyday.

Wearing tennis shoes, closed shoes, and exersicing makes it worse, brings on burning. Eating carbs make it worse, I am low carb eater now and keep glucose numbers below 140 at all times, as anything over that can cause damage to body and organs and pn.

Go read the sticky posts about supplements, you will find everything you need to know already posted in detail there, it's quite amazing.

Become YOUR BEST ADVOCATE. Read, research, study and trust yourself more than a doctor. The doctor works for you. If I don't like my dr I fire him and move on to the next. Only you care about you enough to find the right healing path.

good luck! Starting at a place like this is a wonderful place to start on your journey, and it is a journey.

[keepingfaith]

Wow! That is definitely similar to my story. Mine started with a tingle in my left calf. It stayed that way for a few months and then I noticed I had the same sensation in my right calf. That's when I went to the doctor and they ran my blood tests and such. Everything came back "normal". I have copies of all my labs and they do fall in the normal range, however I have researched those results individually and come up with different thoughts on that. The only one that really stood out to my was that my thyroid is a little high. I am also anemic but she said that wouldn't cause these symptoms. So they sent me to a neurologist and he did all the normal testing in the office including MRI of brain and such. All normal. I have an appointment with him in 11 days to see what's new. Over the past summer 2012 the tingling had spread and I felt it in both legs from ankle to knee and sometimes in my hands. Just these last few months it has become so uncomfortable for me to be on my feet. This used to just mainly bother me at rest or at night when trying to fall asleep. Now it hurts to stand for more than a few minutes and the feeling I get of numbness and burn makes me feel like I will lose my balance...does this sound familiar? I also have other symptoms like sensitivity to light, brain fog, muscle twitches, tremors on occassion. I really appreciate you responding to my questions. Have you notice that your PN is getting worse still or did it kind of level off at some point? I'm at the point now that it is causing me so much stress and anxiety that I don't even want to leave my house or do anything. It's terrible.

[Stacy2012]

There is a site:

www.stopthethyroidmaddness.com

That is one of the best places for thyroid info, it was my starting point and I go back there often. What was your TSH? What is your FREE T3? FREE T4? If they are on the "high" side of normal then continue to look into thyroid. My TSH started at 10.8 and I now have it down to 2.8 but my T3 and T4 are still on the high side so I am still working on it. I am on desicated natural hormone and believe it is better than synthetic hormones dr's like. Took awhile and fired 2 dr's before I found one to work with me with desicated hormone meds.

Is my pn better.

Million dollar question. Yes. No. Depends what day you ask. The numb spot is getting better, not so numb but even that seems to change with the day. When I first got on Benfotiamine it was a miracle for me and seemed to alleviate all symptoms but now they are back...but it could be that it is winter. Winter seems to have made everything worse...or so it seems. Im heading back to florida in February, guess I will see if warmer temps help.

I never lost my balance. I did have brain fog that thyroid meds have cleared up. I use to be in complete pain when I stood for any amount of time but now that pain is gone. The horrid pain in my heels is gone. My worse symptom is the burning which starts at night.

Some days I have feelings that everything is getting worse. Some days everything is getting better. Attitude, thoughts, faith and prayer all affect my outlook and outcome.

MrsD said thyroid never gets back to complete normal and lingering affects could be permanent. I am praying and asking God to heal me completely and I believe that can happen.

[keepingfaith]

I'm glad to hear that you have had some improvement! It gives me hope. I feel like until I find out what is causing this I can't move forward. My thyroid is only 3.13. I agree about the winter thing. During the summer even though my symptoms continued to progress overall they weren't as intense. The cold has made it worse. I also noticed that when it's that time of the month they seem to worsen as well. Do you have that going on? I don't mean to get to personal but I am really enjoying having someone to talk to about this. It's incredibly helpful and I really appreciate it. Do you recommend taking vitamins for now? It's weird because I am hesitant to get up and walk around for fear of the uncomfortable feeling. And if I do push myself to walk or exercise the next day I pay for it X3. I read somewhere though that even if it hurts you are supposed to keep trying to get exercise. I'm just so scared I'm going to end up in a wheel chair or something.

[Stacy2012]

What is your FREE T3 and FREE T4? Those are more important than TSH. And my TSH is 2.8 but I want it lower and will be asking my dr to up my medication next month.

YES. The week before I start my period is my huge PMS week, and EVERYTHING is WORSE. All my symptoms are worse that time of month, including other things besides my pn.

Yes, take supplements. Go to the sticky at the top of this page and read the supplements page, then ask questions after you read. My MUST haves are benfotiamine, magnesium, potassium, B12. There are others but those are my never live without.

Epsom salt baths are VERY HELPFUL. I take them all the time, epsom salt is magnesium and it gets into the blood stream faster when in a hot bath. LOVE THEM. Lowers blood pressure, helps sore aching muscles and helps my feet pain and burning.

I have lost 40 pounds through this because I have cut out the carbs. Carbs make my pn worse. I also wont allow my BG to get above 140 so I keep my carbs around 30g a day. There are others here, like Sally, she does not have diabetes but eats low carb for same reasons. Many say carbs make pn worse.

I exercise even though my feet burn when I am done. Walking is worse so I do arobics. When I take my shoes off my toes are red and on fire but I do it anyway.

I understand your fear. Fear can immobilize us. Worse thing to fear, is fear itself, so confront the fear by being in control. Read, research and keep faith. It IS good to talk to others, that is why I stay here. I also find so much help here.

[keepingfaith]

Awesome information! Thank you so much! The best thing about what you told me is that I can do those things myself and they are beneficial to anyone whether they have PN or not. As far as T3 and T4 those weren't tested. For thyroid my doctor only test TSH with reflex to T4 (that's exactly how the test states it). They have tested it twice and used the same test both times. How would I get the other things tested? I hate to walk in demanding and acting like I know more about it than they do. But sometimes we have to be that way I guess. I will read up on the information you gave me. I just want to thank you again!

[mrsD]

The best way to approach this problem in a younger person with no thyroid markers, or diabetes symptoms with blood sugar anomalies, is to go back to before you had the initial symptoms.

What were you doing then? Any antibiotics in the year leading up to this taken? What were they for and their names. Any vaccines? What hobbies do you have--any with paints, solvents, furniture resurfacing, gardening with pesticides, etc.
Any allergies or reactions to something in your environment?
All details may leave clues. Knowing what triggers you then points to what you may be able to do the stop it or reverse it.

Any drugs you used, RX and recreational? Nitrous oxide at the dentist? Alcohol consumption? Toxins in the environment may be heavy metals like lead, arsenic (well water), cadmium, etc.

Your diet and exercise routine. Shoes? any foot problems?
Diet is important because foods can trigger burning, tingling and nerve symptoms. Gluten is the biggest offender. But nightshade veggies (tomatoes, potatoes, all peppers), can trigger discomfort in some people. MSG in processed foods is a biggie also, because it triggers pain receptors. Some foods are actual histamine releasers. They may be blocked by Zantac, and Benadryl.

Do you have good days? What was going on the day before a good day? Do you have pain 24/7 or only sometimes?

Do you have relatives with PN symptoms? This would suggest a hereditary component.

Are your feet involved? Or only the legs? If the legs only, have you had spinal testing to see if you have compressions along the lumbar, etc?

Some nutrient deficiencies give symptoms. Low B6, low thiamine, low B12, low D, imbalances between calcium and magnesium.
Most Americans are low in magnesium--up to 70% of us.

Medically after all the typical stuff is ruled out, then there are medical tests for antibody status (elevated peptides in the blood make it thicker and sluggish), and autoimmune studies to see if you have Lupus or Sjogren's, or some other autoimmune issue.

You doctor is not likely to do this detective work in detail...it is really basically up to you to do it all.

[Stacy2012]

Oh boy. You hit my hot button, lol YES, YOU HAVE A RIGHT TO ASK FOR AND DEMAND TESTS. Sorry to shout, lol.

The story is too long and Ive told it too many times, Im sure you could find it in some old posts, so I won't go into it again, I will just say, ONLY YOU will fight for you.

I have fired 2 doctors. (long story) I had an epiphany a long time ago. I care more about my health than the doctor does. I am one of many to him. A number. I took control of my health and when the dr got mad that I had too many opinions or whatever I fired him and got another. I go to the dr now with print out proof of studies and explanations of why I want to do something and if he doesn't agree, he has to tell me and PROVE to me why.

I believe in dr's. I use them. I need them. What I don't believe is that they care about me as much as I do. I refuse to be a statistic, go with the flow, pop the most used pill so he can get kick backs, kind of patient.

The honest truth is: I have helped myself more than any doctor. By doing my research, reading, studing, and finding place like this where there are great people with help and advice and on my knees in prayer. The supplements that people talk about here are real. They help. Read, read, read.

Some things will work for you and some won't. Rlipoic acid is amazing from what I read here. I bought a bottle and I can't take it cuz every time I do I get acid reflux bad. I REALLY want to take it. But, everyone is not the same. Then there are other things I can't live without. Benfotiamine has been a miracle for me and no doctor prescribed it, I found it here. It literally helps control my flare ups and I wont go a day without it. It is trial and error.

I am no longer focused on WHY I have this pn or what specifically caused it. Hypothyroid, glucose spikes, whatever. I have it and now I have to deal with it and most pn's are the same in that you learn to manage it no matter what caused it.

I get most of my blood tests, all of them, on my own now. I go to Any Lab Test Now! Google to see if you have one or one like it. I talked to my dr and told him its out of pocket for me and cheaper to do the lab work on my own and he agreed. I have insurance but it's useless, high deductable and mostly for if I am dieing.

So, I study what test I need, why, the specific name and I go do the blood test on my own. They are VERY helpful when you go in. I paid $99 for my thyroid panel which is TSH, T3 AND T4 free. (must say free)

Then I take the results to my doctor.

I also checked B12 but that is a hard test cuz the standard test only checks ALL B12, which is active B12 and INactive B12 in the gut. B vitamines are essential for PN. I will only take Jarrow & enzymatic therapy brands, sublingual. That is my personal opinion as I found some convincing studies on brands and those were the top 2.

Read the supplements sticky, MrsD knows everything about supplements and she is so very helpful.

Never accept test results by word from dr, always get a copy of them. Most "normal" ranges are out dated and wrong, especially B12 and thyroid tests and diabetes. You can't trust when a dr says " you are within normal ranges" BECAUSE their ranges are outdated.

You can't walk in "demanding" but you can take charge, be informed and be prepared to prove why you want what you want. Finding the right dr is key.

edit to add:

I see MrsD posted while I was typing, she is FULL of knowledge and can help you more than I can.

[Sallysblooms]

Yes, you have to do a lot of work on your own and you also need to find a good integrative MD. Key to actually healing. They know conventional med. but they know much more also. Treatments, the correct diet, supplements that regular doctors have no clue about oddly and sadly... They also know the blood tests needed and how to use them.

Regular MD's have no idea how to help my CFS and Dysautonomia. I steer clear of them.