To my ever growing list of conditions I have been diagnosed with Raynauds - Oh joy. My Gp who was rather pleasant ( I hadn't met him previously ) also clarified that I have neuropathy - now there's a surprise ! Not
He brought a doppler scanner with him. As I put my feet onto the cold kitchen floor my toes turned blue.
Is this another symptom of B12 deficeincy ?
'Fraid so. I have it too. In the winter I wear 2 sets of gloves. I even need to wear gloves to take things out the freezer.
😱 Oh joy gloves to get things out of the freezer ! I was wearing gloves in bed during the winter but I thought I were cold due to the low B12. I cant abide anything such as socks or slippers on my feet. My feet are so painful I can now only wear a rubber flip flop.
Oh well it's just another string to add to my bow.
I go through torture when I’m doing a food shop even the chiller cabinets hurt my fingers I thought it was just me feeling the cold,they did not go blue but very red and painful. The joys of P.A and old age lol.
I also have dysautonomia. I think raynauds is a form of dysautonomia. It means I am always cold in the winter, but on the plus side, I don't feel the heat so much. I used to go into M&S to hang around the chiller section to cool down. Now I avoid it like the plague. Not so much of the plus side as we live in the UK. Maybe we should all move somewhere hot. Where B12 is OTC.
I used to over heat profusely so have fans all over the place around my home. I thought it was the low B12 that was making me feel cold. My hands were so cold a wore gloves in bed. Then I wondered if it were to do with my sticky blood condition and circulation - i'm sure it's all connected. The neuropathy is just another burden to have to live with which is worse at night - I assume worse at night due to temperature change once in bed. Gout which was excruciatingly painful added to my misery. My Gp is now doing a uric acid test - it's all sent to try us - and it does.
I have had Raynauds since a teenager. Cold days or winter is when it gets to me. My fingers turn white and I cannot bend them. Since gaining weight I feel ot less but then I have been quite the hermit this past few years so I'm not out in the cold so much. I have never treated with medication etc. Just learnt to live with it
How often do you inject?
Hi PhilAB,
I were prescribed the one cap fits all dose of every three months but still had symptoms. I pesuaded my Gp to give two monthly but still I suffered so I took matters into my own hands and now inject daily.
May I ask how long you been injecting daily? I used to get unbelievably cold feet, hands a little better but still cold, I also used to violently shake/shiver when I went from hot or warm to outside cold. All gone now. But been SI for three years (methyl and hydro).
I also eat the best organically sourced food and supplement. I have also do heavy metal detox and parasite cleanses.
My prescribed loading dose was three years ago this June. I have been injecting daily for about a year with slow improvement. I also experienced the shivering and shaking.
I have tried all the detox's, candida treatments and parasite cleanses over the years and even booked into a health farm years ago - yet here we are still suffering.
Neurological damage takes at least two years to heal, so you need to SI daily for at least that long. Raynauds is basically long term severe b12 deficiency to your CNS and PNS. It could be that damage has been too long. My hands and feet massively healed.
Age is also a factor, older we are more difficult to heal.
Diet is also critical, unless people eat super healthy we are damaging our body. Sugar damaging vessels, nerves etc. And damage needs certain healthy cholesterol to heal.
We are full of parasites and you need to be cleansing all the time. Heavy metals are in us. Which hides the parasites and our immune system which is also burdened cannot deal with the parasites.
Unfortunately I have a lot of other health problems which all add to the picture - mostly autoimmune conditions.
My diet has dwindled of late due to being too ill to cook but I do avoid junk food. I have had an endoscopy done which didn't look too promising but now waiting to be seen by a gastrologist - Dr is going to chase them up. What parasite cleanse did you use ? I purchased mine off of ebay. I also take black seed oil and use coconut sugar on my porridge - its quite palatable I find. Coffee is my main vice and have two cups in the morning.
It's all trail and error.
I have one cold hand. It's happened since the deficiency took hold. Below 10C the middle finger of said hand goes white and numb. If I massage up from the base it gets better. Unnerving!
Hi Jilly
I inherited my nannas “deadman’s fingers” as she called them and been like that when it’s cold and sometimes for no reason since my early 40s but thought nothing of it.
Only recently the blood tests came back positive for Reynauds. Great posts on this discussion I have learned a lot and hopefully as I inject every day now the symptoms will at least be held at bay if not improve
Thank you all and best of luck
I am surprised at how many have suffered with Raynauds at such young ages! Same here, I put mine down to my sticky blood and circulation, but the blueing of my toes alerted me towards Raynauds. The Dr only came out yesterday so i'm still waiting for bloods to be taken.
There is a site on here for Raynauds ! 😘
Raynaud’s runs in some people’s families. My cousin, my sister and I have it, as did our mutual grandmother.
And as I’ve got older it’s got worse.
I have started taking nifedipine for it. I now wear merino wool jumpers / tights (pantyhose, not leggings, for those reading from the US) every day through the winter. I live in a house that is cold in the winter and hot in the summer, which is a disaster where Raynaud’s is concerned.
I have an abnormal APTT clotting ratio. But my APTT ratio suggests that my blood clots slowly, ie. is the opposite of sticky. What is the medical term / test used for your “sticky blood”?
On the one day this winter that I had to take a cold shower I noticed that my circulation was slightly better than usual. Has anyone else tried this? I have a friend who has MS and has been doing lots of cold water swimming this winter. She has been noticing a huge improvement in her neuropathy and general well-being. Has anyone here tested it themselves?
I seem to be getting pain in one particular finger a lot of the time now. Before I took nifedipine I was starting to get what looked like spider web type bruising under the skin on my fingers.
One other question - I wonder what relation Raynaud’s has to the body’s glucose levels and to insulin resistance, if at all. And where diet (or eg. ditching caffeine) can improve the condition. If anyone here has theories, pitch them please.
PS. Tell us more about the Doppler scan, please. What did it tell your doctor?
My sticky blood condition is called antiphospholipid syndrome ( APs for short or Hughes ). The doppler showed blood flow to the extremities, it was a small gadget the Dr brought out with him. Luckily I had stood on the cold kitchen floor and my toes turned blue which he noticed and documented.
I am now waiting for bloods to be taken plus uric acid testing ! The Dr suggested nifedipine but has to clear it with my heamatologist before prescribing it me.
My insulin is going to be tested but waiting an appointment for a synacthen test to be carried out - this is not being done in relation to Raynauds. I posted earlier about taking cold baths, I havn't tried it but apparently better with ice in. 🛁 🧊 🥶
Warming foods such as curries, ginger, cinnamon, pepper and chillies are also supposed to help in opening the blood vessels.
Thanks Jillymo.
Interesting that we have blood conditions that are at opposite ends of the clotting spectrum - yours is sticky, mine refuses to stick - and yet have the same poor circulation at the extremities.
Your GP sounds extremely thorough. Long may that last.
I drank the most gingery drink concoction I have ever had last night. Still have cold fingers today but I will try it again. A supplement meant to be helpful for circulation that I’ve taken in the past is ginkgo biloba.
Yes I thought is strange seeing as your blood is thinner and assumingly flows better than mine. 🤔
My wasn't Dr wasn't given a choice other than to be thorough. I hadn't seen him before and when he turned up I were gob smacked at how young he was - I think the doppler scanner was like a new toy that he was eager to try out.
I mixed both ginger and cinnamon in hot water last night and drank but early days to see if it helps. Ginko is also recommended.
Have a read of posts on the Raynauds site on here - we might learn something ! This site in relation to B12 has been very supportive as well as friendly. 😘
Hi, just a suggestion for coping with Raynaud's . Worthwhile investment would be usb rechargeable hand warmers. (Amazon) Some are small enough to fit inside gloves/mitts. You will know that prevention can avoid pain of circulation recovery.Good luck
I brought similar during the winter to use in bed because my hands were soooo cold. 🥶
I have a better idea - I think we should all cuddle together to keep warm. 🤗
Thanks Dylfan.
Being mindful of climate change and the world we’re handing on to our children I am always trying to resist getting a new tech / energy intensive solution where a non-tech solution might work just as well. But next winter I think I will bite the hand warming bullet.
Has anyone here taken on Raynaud’s with any other approaches that you can recommend?
I brought one of those rechargable muscle stimulating mats which does the same as a circulation booster. Not sure if I should be using it with my sticky blood but brought it before the diagnosis of Raynauds to see if it would ease the cramping and neuropathy.
Under where I sit on my computor I have a leg exerciser just to ensure I dont sit for too long without moving my legs.
Hi, Sorry to say, Raynaud's while being a common condition with varying degrees of severity, is also fairly intractable as far as treatment is concerned. Believe very important to work at minimising exposure to colder temps. to minimise longer term damage.Best
That has been my experience, yes. If going out in the cold I wear at least 2 layers on my extremities. This is not a reference to Spare, and I don’t carry Elizabeth Arden cream.
The problem is more pernicious at home. My house is a cold house and I need to spend a lot of time sitting still. Management through the winter months - and even into May - is getting harder and harder. As much for loss of energy and thinking power as for chilblains / other medical problems.
A friend who has it carries on going skiing, however. She wears multiple thin layers and (battery pack) heated gloves. Her house is also as hot as Hades.
I notice lots of comments here from people saying they had it before having B12 deficiency. I had the problem before getting a thyroid condition and before becoming almost constantly iron deficient.
Yes, Raynauds was a very prominent symptom for me - bright purple tops of hands when in the depths of deficiency. Now I get the classic white fingers with reddish tops of hands.
I've always had a tendency towards Raynauds - I smoked as a teenager and it was worse. But isn't it interesting that it's so closely linked to B12? It's basically all the nervous system. And I wonder if there are some people with genetics tendencies to get nervous system complaints.
All of it is linked to my gut. I probably don't have PA, but I do have an inherited sensitive gut. It's all linked, i think, to gut sensitivity. That's the root of nervous system complaints, right? Neuropathy in the hands and feet all links back to the CNS and B12 is the 'oil' that the CNS needs.
I doubt a Doctor can prescribe anything for a 'sensitive' nervous system. But lots of rest and relaxation, limited stress, good nutrition, and plenty of B12 can all probably help. I'm 2 years in and inject weekly, daily methyl drops. Alot of damage but it's all improving day by day. Keep the gut strong with lots of sleep, gentle exercise, don't smoke, limit stress, get outside...stay happy. 😀
So interesting.
I wonder if - I don’t know how many people here are women / their age - Raynaud’s tends to get worse as you age / approach menopause.
That’s been my experience.
I did the men-on-pause many years ago so defo not that - probs down to age and my autoimmune conditions. 😘
How bad was yours before peri and menopause?
This feels like one of these areas of medical science that could do with a bit more research.
I think its all related to B12. Menopause, aging, gut sensitivity. Women tend to get B12D more than men, generally. And I always wonder why that is. I think it could be that the demands on the body are higher for women amd that perhaps women eat less B12 than men. Women have more pressure from society to look well, and this can mean fad diets or salad for weightloss. Or maybe women are generally more stressed? They engage in emotional eating to relieve this which can make them eat comfort foods and miss out on correct nutritio ln.
All speculation!
But Raynauds is, I think, a nervous system reaction. And the nerves from the parasympathetic system. If its being overworked from stress, lack of sleep, poor diet needs B12 to fix up.
This is all my internal rambling but I believe there's something in there to explore.
Thanks!
I don’t think Raynauds necessarily is caused by b12 deficiency. I have had Raynauds about 35 years before PA
I know many people with Raynauds who don’t have b12 deficiency.
Perhaps it is a genetic susceptibility which is exacerbated by lack of B12...?
ncbi.nlm.nih.gov/pmc/articl...
Funny enough I watched this video the other day and thought to myself if I take anymore pills I shall rattle. B1 will be added to my long list of meds to see if it is of benefit.
The link was a little complicated for me to get my fuzzy head around. I have had a genetic test done recently for the aire gene. I were told it could take six months for the results.
My legs feel incredibly weak so will give B1 a try. 😘
I CAN'T WAIT to hear the results from your test. I may get it done myself.
I feel for you. You really do have a lot delt to you and totally understand that you want to pace yourself. AND I TOTALLY understand the fuzzy head. I get it all the time and I'm not dealing with everything you do! You are doing a great job by continuing to find answers and not giving up all the while posting great things here to help others. I enjoy your posts.
If you ever decide to do b1, this is what I do, I only explain to hopefully help you avoid having to solve the formula. This guy has you take yeast, but I like just taking the pills in the proper bioavailable forms.
I take 250 MG of benfomax (b1).
B complex w/o out b6.
B6 (p5p form) 50 mg.
Magnesium glucinate 400 twice a day.(this is better than citrate because it won't cause the runs like citrate does).
You need to take b2 and magnesium because b1 metabolism requires b2 and magnesium (as well as potassium). w/o supplementing those, b2 and mag will get depleted.
I have been doing this for a year now. Best of luck to you and everyone on this forum. I know my formula isn't perfect but hope that it provides some simple start or help in some way.
Also, there is such good advice on this thread from others that suffer Raynauds that I can't provide because I don't suffer it. Cheers to all the collaboration and support in this forum and for those who actively moderate and support this.
Dont hold your breath on the blood draw results - It's not even been actioned as yet ! Grrrr
I am not going to sit about and suffer and doing what I can to help myself. Everything is so long winded these days. I have had a substantial swelling in my abdomen which my Dr now thinks is a tear for nearly 3yrs which is now going to be investigated.
Thanks for the info on the vits - I have purchased and just waiting for arrival. Magnesium I am low on so will order more today. I am on 3 diuretics daily which deplete me of nutrients. Years ago they would prescribe magnesium to compensate but not any longer.
Thanks for chatting and your advice - take care
So sorry to hear they added another condition to your conditions. The coldness on the feet and hands can get pretty intense for me and my nose. But have not been diagnosed with Raynaud's. I do wrap me get on a heating pad and wear wool socks to bed or whenever necessary. My nose was getting so cold, that I wore a covid mask so that my own breath would keep my nose warm.
Here's a little article that I found, that said that a vitamin d deficiency can also cause Raynaud's disease, among other things. Hopeful with warmer weather coming, you will find some relief.
xcode.life/genes-and-nutrit....
Hi EllaNore,
Get Raynauds checked out by your Dr.
I read it can affect your nose and ear's. As well as a covid mask maybe a bobble hat pulled over the ear's will protect them. We must look really sexy when we get into our beds. 🤣 My hands were so cold I was wearing gloves then wrapping them in a fleece blanket ! The pain in my feet is horendous at times but we soldier on. 😩
Yes B1 thiamine apparently is whats needed. 😘
P.s I take vit D3 twice daily for my hypoparathyroidism ! I simply dont know anymore there is only so many meds and vits we can take.
Right Jill I totally get it. You can only take so much medicine. I don't know how the body separates it and how it goes to each thing. It just amazes me how much somebody can have how many conditions and illnesses and how much medication they can take. You take a lot and have a lot of issues. And I'm so sorry they're adding another one on top of it all. I don't know what's going on with your feet or my feet and the pain in them It's just incredible I feel like I'm not getting full use of the B12 that I'm giving myself. I just don't know anymore. I wish I had answers for you JulliMo. Is there some kind of medication they're going to give you for Raynaud's disease? Right now I'm going to put one ample of B12 in one thigh and another B12 ampule and the other thigh so that it gets to my legs instead of sitting in the fat of my belly. Hopefully more B12 in my legs will keep my feet from hurting so bad. I just don't know anymore. I'm grasping at straws like you are. I wish you all the best
You made me laugh with the I will inject into each thigh and hope it gets to my feet ! Draw and arrow on each thigh pointing at your feet so that it knows which way to go. 🤣
I'm laughing but the pain in the legs and feet is unbearable and debilitating. I have doubled up on injections but as yet of no benifit. I do mine either in the thighs or tops of my arm's.
It has got to the stage I dont know what is doing what anymore. 😭
It's a good job we still have a sense of humour.
I hear you jillymo! Who knows anymore!!! I just think I have too much fat on my belly for the B12 to get throughout my whole system. And the part that needs it the most is the lower extremities so that's where I inject. Who knows if it makes a difference but it seems logical.
We must continue to laugh. It's still the best medicine. 😉
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