My story so far.....

[bruno1]

7 and a half months ago I was on top of the world, I gave birth to beautiful identical boys approximately 1 month lately my life has changed....

I'm going to step back 4 years ago I had tingling in my feet and so I went to the doctor to discover that I had an extremely low reading for vitamin B12. I saw a neurologist who said that it was so low that it may never repair itself but after a month of homeopathic treatment and vitamin B12 shots it went away. I was relieved to say the least, I completely forgot about and life continued on.

Then one month after the birth of the twins the tingling started again in my feet ( it has now spread to my lower legs and sometimes hands) but at that time I wasn't really that worried about it as I had experienced this before so I saw my doc who did all the blood work and I was fully expecting to be doing the vitamin B12 shots again. How wrong could I be.... Along with this I have had IBS for over 14 years which I have mainly been able to control until I got pregnant and every since I have had diarrhea almost everyday. I went back to my original homeopath who I stuck with for 3 months until I finally had to try something else as this time it wasn't working. I finally got to see a neurologist 2 weeks ago who thinks that I may have a deficiency due to the extended amount of time I have had diarrhea and has referred me to a gastroenterologist ( my GP suspects I may be celiac) and another neurologist at Toronto general hospital who specializes in small nerve fibers. While waiting for these appointments I have done endless research on the Internet, especially at night when the pain is the worst.

I am now 1 week into the paleo diet which basically lets me eat meat, fruit and tons of veg and I juice twice a day and am seeing a herbalist. I am going to stick with this for minimum of 3 months in order to give it a chance to work. I have to keep trying new things but I am also aware of giving things time but patience isn't one of my best qualities.

As I write this it makes me very emotional as I feel robbed of my twin boys first year. I often ask 'why me?' And always ask ' when will it go?' That's the BIG question and the one that upsets me the most as I want to feel normal again I want to go on long walks with the babies but the burning stabbing pain can be so unbearable that all I want to do is ice my feet or stand in the snow for very temporary relief. I rarely go out anymore as the evenings are the worst and my friends just don't understand what I'm going through. It's so incredibly hard to explain it to people so I have stopped. My poor husband feels completely helpless and has done so much to try and help me all of which has not worked so far. I feel very alone when I have a bad day that is why I am writing this to let it all out as I need a release.

I am determined to at least find the root cause of my problem and now I need to find a way of controlling the pain naturally. I personally do not want to take meds ( I say that now) but hey I may change my mind.

If anybody out there has any good natural pain remedies I would love to hear about what has worked for you.

I wish anyone reading this who is also suffering that they find a cure or at least some pain relief.

My babies keep me going those giggles and smiles are good pain relievers.

[mern1]

Your story sounds familiar to mine. I was originally diagnosed with CFS then 10yrs later with Fibro. I've recently seen a neurologist for new symptons and he says I have neuropathy. He suggested I up my dose of Lyrica(which helps to some degree at times), but to also consider trying Alpha Lipoic Acid. I'm currently trying R-Alpha Lipoic Acid(only a couple weeks thus far) and considering a herbal product called Amino Max and Beyond by Natura Health Solutions which was suggested by my acupuncturist/herbalist. I also take Vital Adapt from this same company. When I started the Vital Adapt, changes in diet and acupunture I notice a difference. Worth the research. Remember, you have to be your own advocate and consider other options like I have. I still have issues with feet and leg pain as while with IBS and dizziness, but no longer suffer as much. I've managed to go back to work on a part time basis. I understand what you are going through. It took me a long time to except my health as it is now. I try like you to be grateful for the good things in my life and not to think to much into the future. Seems like your going down the same road as I have.

Good luck,

mern

[bruno1]

Thanks so much for sharing Mern I will definitely try these and report my results. Good luck to you too.

[BellaC79]

I too have had the same symptoms, burning tingling pains which then became so severe it felt like walking on pebbles like my bones are popping out. Over a month the pains then progressed to my hands too. Initially I was diagnosed with coeliac disease.

Having been on the gluten free diet for a year and a half the pain isn't a 10 but rather a 7 maybe, still too much to deal with on a daily basis. My neurologist finally put me on pregabalin which has definitely dulled the pain, I was becoming so anxious and depressed. I can now walk a lap of our local shopping mall! Custom orthotics with a rocker in them have worked wonders for me too as I am only 34. I can only wear the one pair of shoes with them which is so limiting. I would thoroughly reccomend in investing in some, I can feel the pain coming in the evening also one thing which has helped me is avoiding the nightshade foods and dairy definitely.

The next challenge has been to work out what caused the neuropathy, in my case the neuro thinks its sjogrens while my rheum thinks its lupus. I do hope you find what works for you, I am also on high vit d and thiamine. Now have started on hydroxychloroquine due to my extreme fatigue without the meds I would be afraid I wouldn't be able to keep my job as i have already had to cut down to a four day week and I am at a desk based job.

Good luck :0)

[yikes3 in reply to BellaC79]

I would never invest hundreds of pounds into custom ortotics - they are like cement.. they kill the feet. I have yet to meet a single person that didn't toss them away and pay the same price to go with a chiropractors softer version of the same thing. People cry with those hard shell things in their shoes. If you are one that can say that they make your feet, knees, back, hips and all up to your neck and eyeballs feel better, then you deserve wonderful things to happen to you in this lifetime. Maybe one misery of neuropathy cancels out the other somehow. In the USA, they are the highest prescribed item for the feet and damn it , they cost so much to be thrown in the trash. Then we buy soft ones anyway. What are rockers by the way? Sounds like something to throw the feet more off balance???? I would guess that they would break down the shoes just enough not to throw them out or to make them tolerable. ??

[BellaC79 in reply to yikes3]

yikes 3 I live in the Uk and get my orthotics on the NHS as I am referred by my rheumatologist and neurologist. They have enabled me to continue to work and be able to follow a nearly normal daily life as I cannot stand for lengthly periods of time and thankfully my work is desk based.

(with the "Rocker Bottom" , the ball of the foot and the heel never impact the ground, the impact is absorbed through the midfoot of the shoe and up into the arch of the foot. This equally distributes the pressure throughout the foot allowing the foot to roll through the stride)

[bruno1]

Hi Cath,

I feel your pain but am glad that it has decreased and hope it continues to do so.

Good luck

[DonnaG]

Thought I would post a link to a very good video on low B12. It really is very informative on B12

youtube.com/watch?v=BvEizyp...(Not working as expected?)

Donna