Hi, just diagnosed with Vit B6 small fibre peripheral neuropathy and really really struggling with it, the whole idea of it, the fact that I took a vitamin and got this, the drugs, the feeling of being so stupid. I also have crohns disease. This is so hard....
I'd never heard of small fiber peripheral neuropathy until you posted this. I only knew about peripheral neuropathy. I looked it up and it describes my symptoms very well. Does eating certain foods increase your pain? I have found that eating/drinking things high in most B vitamins increases my pain for a few hours. It is very hard to live with this every single day.
I too am newly diagnosed with this. It has been several months of chaos not knowing what was causing these symptoms. So scary. Knowing that my supplements have caused this is so frustrating. So much damage to now undo.I'm in the process of detoxing from the b6 but its a long slow road. The fatigue and muscle weakness are so hard. I totally understand tour frustration. I feel the same.
I am so thankful to hear from others with this, it is like living a nightmare of pain and now i have medications it is learning to live with them, putting on a brave face at work, hoping i will get better. For me it is only 2 weeks since i stopped having vitamin B6, i didnt even take that much, but i did take it for a long time because i wanted to help my immune system. (can only laugh to myself like a mad woman would that i was helping to get myself into this predicament), and I see often drugs advised for small fibre PN saying take B6. I want to tell the world, be careful, it can give you terrible toxicity. Please feel free to keep in touch, it certainly makes me feel i am not alone. Regards, Linda
Hi Linda. What are your symptoms during the detox phase? A homeopathic Dr. Had prescribed the B6 for me to treat anxiety and migraine headaches that I was having. I was on 200 mg a day of a b6 supplement, but another 75mg of b6 was also in a multivitamin he had me on. I was on it for about 15 days when the symptoms started. I went to the neurologist who sent me for a MRI of the brain thinking it might be MS. I was so scared. I had that MRi and an MTI of the cervical spine...both came back normal. All blood work for autoimmune diseases were normal. The Dr's were baffled and my symptoms were getting worse. I finally decided to take a look at the supplements I was taking!! After seeing just how much B6 I was ingesting I looked it up online.I couldn't believe it when I read about B6 toxicity. It was every symptomno had!!!
I meant to type MRI of the cervical spine. Sorry for the typo. Anyway, I brought all the supplements to the neurologist and he confirmed that it was B6 toxicity that I was suffering from. He said just to stop taking everything and that the only treatment is time and flushing with water. He said it could take weeks or months before I feel back to normal...depending on how fast my body detoxes and how quickly the nerves heal. It has been a slow process. I'm on day 20 since I stopped all supplements. Inching along. I'm still really fatigued every day especially in the mornings. I get weird nerve twinges and the muscle weakness comes and goes. I just want to be back to normal as I'm sure all of us do that are suffering from this wicked neuropathy. Also...my eyes are very red and watery...although the light sensitivity has hone away thank goodneas
Hi, I had MRI of brain and spine with contrast and without, nothing. B6 was 150, but i took it for ages, apparently we will recover, i hope so... some never recover, i dont want to be in that group...i am about 16 days into detoxify, i expect it to take a long time to recover, maybe 6 months... you never really hear from those that recover, you only hear from those that dont on forums, so i have to be optimistic... please do as well, and yes my eyes often look like vampire eyes. I am taking a swag of meds, coz of the crohns etc, this includes pred and neurotin and you can take cymblata for pain too, i am not on that, but will be in about 5 days... i have to come off something else to get to the cymbalta... it is an antidepressant but works on pain help breaking pathways etc... one day we will look back on this i hope and thank god we recovered xxxx
You are right..Most don't come back to the forum to say they recovered. I wish more people would though. I started drinking water with lemon in it today in today. I know that lemon acts as a purifier. Also, I'm thinking of starting unsweetened cranberry juice mixed with water to purify the kidneys. My internist told me that the excess b6 gets absorbed into muscle fibers and that working out and sweating would help the detoxing process move along faster. I'm so tired all the time but today I started yoga. It was tolerable although my legs felt so weak. I'll keep u posted on anything that helps. Please do as well. Xoxo
Hi, My husband also read up that the b6 hides in the muscle fibres, and how i am going to take up exercise right now is laughable. However, I still walk my dog, or is it her walking me, and i still do housework, and i still drag myself around the supermarket (that is so hard to do ...i break out into cold sweats and want to faint) but we get there, I have to keep moving, otherwise i am going to stop. My legs are feeling different now, less burning in one spot, more like shin splints all over the place and shooting pains at times, terrible weakness and aching. I am really thirsty so drinking decaf tea and water, not allowed alcohol, not that i drink, and i dont drink any fizzy or fruit juices. am taking lipoic, hope it helps as i am scared of everything right now. Coz of the pred not sure how much pain i am really in. keep in touch...xxx Linda
I meant to say less burning and icy since off lyrica, but aching, tired, hurting shooting pains, weak, and tired like i have done a lot of walking. I have a rest every afternoon right now as i am so tired, but possibly the neurotin. I am on 300mg right now, i dont want to up it too much, doc says start at 600 but... well 300-600mg, but 300 will do, i still want to feel alive. Pain meds help at night, valium has actually helped relax legs too, i dont want to get addicted. I am trying to be careful with the meds. Going to pain specialist on Tuesday, and going to see a psychologist for pain assistance management, as it is doing my head in. This pain has been at times the worst i have ever felt and so unrelenting. I am still not 100% convinced i have not got issues from the humira i was taking for crohns. xxx
I've been reading that Chamomile and St.johns wort are natural nerve relaxants. Maybe look into that as opposed to taking the Valium at night. The Valium may make your fatigue worse the next morning. Just an idea. I haven't tried them yet. I'm still looking into the side effects if any. I don't want any more issues added to this one.
I have gone back to work after 3 weeks off, it was not nearly enough, the pain is changing again, and the muscles hurt a lot, there is stiffness in them and my hands are numb. My kids are sick of hearing about it now, coz i have been so depressed as i work my way thru and change meds. My husband has been great, but he got retrenched, sacked what ever, unfairly in fact, and it is hard for him too. My pets love me no matter what, must be the food... how long have you had off. Where i work i am pretending all ok, but it isnt, but i dont want them to get rid of me... my neuro said only four hours per day till ... indefinite for now, i dont have indefinite time to get better... the thirst... i wake up feeling like i am a camel who hasnt seen water ..my tongue sticks to the back of my throat, it is the drugs. I only take the valium when i am feeling really down, coz otherwise it will do me in. are you in australia?
Hi Krissy, me too .. thirst like a freaking camel. Tired like someone on drugs, which i am... my sense of humour is still alive and well. The symptoms do come and go ...sometimes i feel i have peace from it, then it comes back with a vengence, and bites me, it changes too.
I have crohns disease, so I had a barrage of tests because i was on a TNF blocker called Humira, and as nothing showed up, they thought i might have had Lupus from Humira, ie drug induced, I started researching and I asked the Neurologist to test me for various vitamins and this included more complex testing for B12 and my B6 level. When the results came back it showed up. But because of the Humira we still dont know if I am having extra problems because i am in a lot of pain, and it came on very suddenly and is from my knees to my toes, but i think i is spreading up my legs and i think it is in my arms... anyhow, have to see what happens next. Any doctor can test you for the toxicity, but not all of them will possibly agree to requesting the blood test. It is a blood test.
HI, I am newly diagnosed too. My level is 607 (normal range 40-100).
I had terrible memory problems as well as all the other symptoms. I thought I was getting early onset Alzheimer's. My neurologist picked up the b6 toxicity but a GP can test for it. It is just a blood test. The neurologist and Dr were not much help after diagnosis so I am seeing a naturopath. She started me on a cell detox. A liver or kidney detox would put too much strain on the already struggling organs, so a cell detox is much gentler. Within a week my memory was 90% better, after 2 weeks my muscle spasms were down to 1-2 a day. Before treatment about 50 per day. I have had a cough for 18 maths andit has improved but still there. I have a rash that I have had for 8 maths and it is still as bad as ever, but I have only been having treatment for 3 weeks. My headaches have gone. I too get terrible thirst. My naturopath says my entire immune system has crashed as a result of the toxicity, so all the viruses that sit dormant in our bodies are running rampant. I have high ESR rates, high ace levels, swollen lymph nodes, very prominent in neck, back of head and throat. I am waiting for an appointment to see a immunologist. I also have HLAB27+ which is a condition that affects the immune system, so the toxicity looks like it has set this off. My naturopath says I am looking at a minimum of 12 maths recovery time.
I struggle some days, but just having my memory back and not falling over all the time or being dizzy is fantastic. I feel like I am getting my life back. It appears there is no magic bullet, but I am looking into what would cause the body to store the Vit B6 instead of eliminating it. So far the amount you took of B6, your estrogen level and the foods containing b6 all seem to be factors. I also have osteoarthritis and fibromyalgia so this may make it worse, especially as I am fairly high doses of pain killers. Will try to keep you updated on what I find.
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