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    Old 12-11-2003, 04:14 PM   #1
    Pranayama
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    Question Vitamin B & RSD

    I have recently been diagnosed with RSD and I am wondering if anyone can help me regarding any information on vitamin B & nerve regeneration. My specialist has prescribed Amitriptyline and I am not that keen to take it. (If anyone has any information on that too, that would be great). I have heard that large doses of Vitamin B is good for nerve regeneration, but I am not sure how much to take. I do already take it & a magnesium supplement with vitamin B, but I dont think it is enough. Doctors are not all that willing to give extra vitamins to help, but are more than willing to prescribe brain altering drugs. Any help would be really appreciated.

     
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    Old 12-11-2003, 06:46 PM   #2
    sharon1030
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    Smile Re: Vitamin B & RSD

    Hi,

    I just wanted to welcome you to the board. You have come to a great place if you're looking for support and information about RSD. Everyone here is very nice so feel free to ask any questions you have. I don't have answers for you regarding the B12, but I'm sure someone here can help you. I just wanted to say "hi."

    Sharon

     
    Old 12-11-2003, 06:57 PM   #3
    Pranayama
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    Re: Vitamin B & RSD

    Thank you so much Sharon I am also very keen to see if anyone has had any luck with magnetic therapy products, so if anyone has any info on that also, it would be great to hear from you.

     
    Old 12-11-2003, 09:38 PM   #4
    saluki
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    Wink Re: Vitamin B & RSD

    Hi Pran,
    I'm sure there are others onthis board with much more experience and info but for what its worth this is what I can
    tell you. If you take the B it's probably best to take a b
    complex since they work together. As to the amount you have to be careful because I think B6 in high amounts can
    atually produce nerve damage. So if you find out the proper amount let us know.
    As for Elavil it can be a very good drug. First if you take it before bed it may actually help you sleep which is something hard for us with CRPS/RSD to get much of. Secondly it has the ability to mask pain so not a bad thing. Make sure to take a stoole softener and watch your weight sometimes
    tricyclics can put on some pounds. But it is a good drug.
    Let us know how you are doing- fondly Susie L

     
    Old 12-11-2003, 09:53 PM   #5
    Pranayama
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    Re: Vitamin B & RSD

    Thanks for the info saluki. I haven't yet decided whether or not to take the drug. I've had bad reactions to others before and am therefore very weary of anything. But if the pain doesn't ease up, I may have to. I didn't know that about B6 in high amounts, so thank you.

     
    Old 12-12-2003, 05:24 AM   #6
    Horsie Nutt
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    Re: Vitamin B & RSD

    Hi. I just wanted to welcome you to the board. This is a great place to come for support, for answers to your questions, and to vent should you need to get something off your chest.

    I saw a show on a well known cable network that did an experiment to test the trueness of magnetic healing powers, and I'm sorry to say this, but they found it to be a bunch of hogwash. But I also know people who swear by them too.

    I also found this next bit of info on a web site. I can't say which one, so i'll paste what it said:
    What about vitamins for RSD? Vitamin B? Other supplements?

    We haven't yet found anything on vitamin B and RSD. In prevention we have listed a study done on RSD patients with vitamin C but that's it. Even there, it is said that vitamins are not treatment. A balanced diet can always help and this should be very important to people with chronic conditions. However, a good meal and vitamins are no substitute for treatment.

    There are a number of very healthy things and not just for RSD. Foods with natural anti-oxydants (scavenger treatment, vitamin C, vitamin E) are to be recommended. Things like: bananas, green tea, tomatoes, green vegetables, carrots. A daily dose of fiber is also important, exotic fruit (more about this on this site in future updates).
    -----------------
    You said you were just recently diagnosed. Does this mean that your symptoms have just started recently? (some people are misdiagnosed for years). If so, early, aggressive treatment is the best thing you can do to try to get this monster into remission.

    Also, I don't know if anyone has ever told you this, but in case no-one has, NEVER put ice on your affected limb OR let anyone start an IV in it. These can cause flare-ups and possibly even spread.

    I hope you have a pain tolerable weekend,
    Cathy

     
    Old 12-12-2003, 07:34 AM   #7
    mimi7
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    Re: Vitamin B & RSD

    Pran,
    Just last week my PCP Dr. said I could get a B-12 shot every 2 weeks for nerve regeneration, so I am. Obvisouly it cannot hurt me, she KNOWS all my problems VERY well.
    hugs,
    mimi

     
    Old 12-12-2003, 01:33 PM   #8
    ejames4773
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    Re: Vitamin B & RSD

    [B]
    Hi Pran...welcome to the Boards. I haven't heard of treatment with Vit B. but here in the UK trials are underway with VitC. As yet there is nothing conclusive. There are so many subsets of RSD, and each needs different treatment. The antidepressants work on the brain itself to make you less aware of the pain, and the vit supplements esp. calcium and magnesium feed and stabilise nerves. Perhaps if you told us a little more about your symptoms we could say more. One thing we are all agreed on and that is in the early stages exercise is vital.
    Best of luck.

    Hugs,
    Edna[B]

     
    Old 12-12-2003, 10:06 PM   #9
    Pranayama
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    Smile Re: Vitamin B & RSD

    Quote:
    Originally Posted by mimi7
    Pran,
    Just last week my PCP Dr. said I could get a B-12 shot every 2 weeks for nerve regeneration, so I am. Obvisouly it cannot hurt me, she KNOWS all my problems VERY well.
    hugs,
    mimi

    Hi Mimi, I would be extremely interested in knowing how you go with the B-12 shots. I am seeing my GP on Monday to discuss exactly that. Have you tried any of the drug treatments? If so, how did you go?
    Pran

     
    Old 12-12-2003, 10:14 PM   #10
    Pranayama
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    Smile Re: Vitamin B & RSD

    Quote:
    Originally Posted by Horsie Nutt
    Hi. I just wanted to welcome you to the board. This is a great place to come for support, for answers to your questions, and to vent should you need to get something off your chest.

    I saw a show on a well known cable network that did an experiment to test the trueness of magnetic healing powers, and I'm sorry to say this, but they found it to be a bunch of hogwash. But I also know people who swear by them too.

    I also found this next bit of info on a web site. I can't say which one, so i'll paste what it said:
    What about vitamins for RSD? Vitamin B? Other supplements?

    We haven't yet found anything on vitamin B and RSD. In prevention we have listed a study done on RSD patients with vitamin C but that's it. Even there, it is said that vitamins are not treatment. A balanced diet can always help and this should be very important to people with chronic conditions. However, a good meal and vitamins are no substitute for treatment.

    There are a number of very healthy things and not just for RSD. Foods with natural anti-oxydants (scavenger treatment, vitamin C, vitamin E) are to be recommended. Things like: bananas, green tea, tomatoes, green vegetables, carrots. A daily dose of fiber is also important, exotic fruit (more about this on this site in future updates).
    -----------------
    You said you were just recently diagnosed. Does this mean that your symptoms have just started recently? (some people are misdiagnosed for years). If so, early, aggressive treatment is the best thing you can do to try to get this monster into remission.

    Also, I don't know if anyone has ever told you this, but in case no-one has, NEVER put ice on your affected limb OR let anyone start an IV in it. These can cause flare-ups and possibly even spread.

    I hope you have a pain tolerable weekend,
    Cathy
    Hi Cathy,
    Thanks so much for the information. I've definately come to the right place. Sometimes you can feel so alone, even with family & friends support. My RSD symptoms have only started since September, so hopefully I may be able to get on top of it early. I have however, had a pinched cranial nerve for six years on my left side and have now had an accident with my right shouler and hand fracturing the hand and dislocating the shoulder, which has triggered the RSD on the right side. So it's a fighting battle for me at the moment. I'm just looking for anything and everything that may help. The thought of brain altering drugs really does frighten me a little though. But I'll just see how I go.
    Keep Smiling
    Pran

     
    Old 12-12-2003, 10:32 PM   #11
    Pranayama
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    Smile Re: Vitamin B & RSD

    Hi Edna,
    I haven't heard about the Vitamin C, but I would be interested to know if anything comes of it. I have RSD in my right shoulder/arm/hand. I fractured my hand and dislocated my shoulder which has triggered it. However, I also have a pinched cranial nerve in my left side which I have had for 6 years. The only thing the neurosurgeon could suggest was to cut the nerve (as the pain blocks did not work). I'm not keen on that, so have been trying for many years to find alternatives. So far I have been finding magnesium in high doses helps a little. I do have alot of trouble sleeping though. I've been through stages getting maybe an hour or two in bits an pieces a night for weeks & months at a time. It's hard to explain to people that I have so much trouble concentrating and functioning throughout the day because of the pain. Do other people find it hard to concentrate?
    I do enjoy my exercise though, so at least that may help. I have been a bit weary of exercise until now. Just not knowing what is good and what isn't.
    Thanks so much.
    Keep smiling
    Pran

     
    Old 12-13-2003, 05:17 AM   #12
    ejames4773
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    Re: Vitamin B & RSD


    Hello again Pran One of the difficulties with this site is that we cannot give out urls to other sites and so info has to be passed on , which often takes ages. However, there is a very good article which asks the question...Why is your RSD different from mine?.. Perhaps I can type a little each day, because I am not a proficient typist and it would take me all day to get through it LOL.

    "The person writing this article was asking why their syptoms were different from others. Why it was that with blocks the sympathetic symptoms disappear but the pain doesn't. Why car vibration exacerbates others' pain, but doesn't affect mine" Below are some of the answers written from the papers of prominent researchers.

    Different syndromes of sympathetic pain have been described. Dr Ocho was first to discover and describe the ABC syndrome. He conducted some very fine studies that showed that some people who were diagnosed with RSD actually were suffering from pain and symptoms that were being caused by the Angry Backfiring of the C-nociceptor nerves. These people has warm limbs n the third stage, nerve blocks were ineffective for these people, they used cold compresses rather than warm ones and when it is warm outside, their limbs were painful, and many had swellings during the third phase. There was an even smaller group of people who also fall under the ABC syndrome category who have limbs that can be hot or cold or even hot and cold at the same time. They are affected by hot or cold environmental temperatures. This smaller sub group have the ABC syndrome with cross temperature modulation.

    Ok, what does this have to do with the questions asked at the beginning of the article? Dr Ocho claims that the ABC syndrome is not RSD it is a disease of it's own. Whether or not it is a subset of RSD or a separate disease is not as important as the knowledge that nerve blocks will not help this pain. Knowing that someone has the ABC syndrome effects how that person is treated and scientific sudies must separate those with the ABC syndrome from those who respond as the text books predict.

    Dr Robert Schwartz has defined 5 separate syndromes that are now called RSD. I haven't seen this described in this way before but as I discuss the syndromes, you should know that other physicians have also identified these syndromes as being part of some of the cases of RSD. Take a moment to think about CRPS. Maybe it makes a little more sense when you consider the possibility that there may be more than one disease uner RSD. It also explains why the scientific studies have not been able to be produced , because without eliminating the different syndromes, researchers are trying to use one treatment to care for multiple conditions. Each syndrome or subset under RSD has pain that is being created by the misfiring of different nerves and may be using the sympathetic nerves to help carry the pain signals.

    That's it for today Pan. Myself, I keep going back to this article, because further on it it sets out the different treatment for each syndrome. My son has had RSD for five years, so you can see that now it has spread to all four limbs I would dearly love to find out more and look at the latest research.

    Hugs,
    Edna

     
    Old 12-13-2003, 08:16 AM   #13
    Lindaa123
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    Re: Vitamin B & RSD

    Hi,
    Welcome to this board. I just wanted to let you know that I am taking a low dose of amitriptyline - 10mg at night. According to one of my doctors and my P/T they found out that lose doses of this helped the rsd pain. The amitriptyline wasn't originally precribed for the rsd when this discovery was made. The low dose doesn't seem to affect me very much. I also take neurontin and lortab which affect me more.
    Best wishes,
    Linda

     
    Old 12-13-2003, 09:10 AM   #14
    Jewel2
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    Re: Vitamin B & RSD

    Welcome Pran!
    I'm almost 4 months into my RSD in my left hand and I'm learning lots from the responses to your query. I've learned so much from my new friends here on the board. In fact they are the ones who strongly urged me to seek aggressive intervention immediately (that was in mid Nov.). I followed their advice and have had one stellate ganglion block already and am scheduled for my 2nd one on Tues. The first one helped tremendously and I'm looking forwarded to beating this thing.

    We all have a fight on our hands and every contribution to this board is more ammunition in our arsenal. Thanks Edna for that excellent article you retyped above. I'm looking forward to the next installment. (Maybe you could highlight and 'copy' [ctrl c] and 'paste' [ctrl v] the text instead of retyping it...?)

    Pran, your taking magnesium intrigues me. What dose do you take and why do you think it helps?

    Thanks everyone!
    Julie

     
    Old 12-13-2003, 03:33 PM   #15
    Pranayama
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    Re: Vitamin B & RSD

    Edna your amazing! From the bottom of my heart thank you for the time you have taken to pass on such fantastic information. I had no idea that I even had symptoms of RSD for some weeks as I had no pain (apart from my fractured hand). It wasn't until my PT asked if my hand sweated alot. I said yes, but I thought it was because of my bandage and exersice (walking) and I was just getting hot. Then I mentioned that it changed colour a lot to blue. But again I thought it was because of the bandage perhaps being to tight. I would loosen it & sometimes even take it off, but it didn't seem to help. Then of course there was the hypersensitivity. I couldn't even touch my hair, it was like nails on a chalk board to me. And there was the coldness through my arm. I just thought the blood was not circulating because of not moving my hand. I had never heard of RSD. I am very thankful my PT new all about it and referred me to my GP straight away, who referred me to an Orthopedic Surgeon for upper limbs. However, I am no longer getting some of the above symptoms. It is mainly just pain now. And I now get both the hot and cold sensation in my arm.
    I sincerely hope to hear more from you. And my thoughts go out to your son also.
    Keep smiling
    Pran

     
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