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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • Vitamin B & RSD

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    Old 12-18-2003, 10:02 AM   #31
    Horsie Nutt
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    Re: Vitamin B & RSD

    Daisy-Head, I think it's a good idea. I'm not sure if the moderators will do that, but they might. We'll never know unless we ask. I bet we can find more information to add to it, like info on the sympathetic nervous system and what it affects, medications and their uses for RSD, side effects, treatments, info on blocks, etc. We can face a most asked questions part too, with the answers. I'm looking up the SNS now. I have a few things I copied/pasted into a .doc and saved, but I'm no-where near done. What do you think?

    Woot-Head

     
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    Old 12-18-2003, 12:13 PM   #32
    Jewel2
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    Re: Vitamin B & RSD

    Woot-head,
    I saw that the moderators did it on another board. I'll try to contact them and ask about it. If that doesn't work we'll just make an informational thread and keep bumping it up as necessary.
    Daisy-head

     
    Old 12-18-2003, 12:18 PM   #33
    Jewel2
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    Re: Vitamin B & RSD

    Cathy,
    I just saw that moderator 2 said on my first post about this that they can make a sticky note for us - we just have to get the info together. That makes me really happy! I think that this will really bless new RSD sufferers as well as the veteran sufferers.

    Let's get to work!
    Julie

     
    Old 12-18-2003, 01:30 PM   #34
    Saint
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    Re: Vitamin B & RSD

    Hello to you all. I am woman in my early 30's and took a fall at work back in August injuring my left leg. I've been dealing with workers comp. and am beginning to see some light as to my visits with doctors. I had been treated by an ortho. in the beginning that said I had a fractured calcaneous but come to find out (by a 2nd opinion) the xrays and MRI NEVER showed a fracture. I, of course, had been complaining about the other pains in my leg since after the 1st month. (When the "phantom" fracture should've healed) Their office considered me a complainer and the ortho was very frustrated! Anyway, as this has been going on for 4 months, I had also seen (and am still seeing) an Anestheseologist who specializes in Pain Management and he has been ordering me tests to rule out RSD. I had my 2nd opinion with an ortho on Dec. 16th and he said I am classic RSD. I have all the symptoms: leg purple, burning, cold, tingling, can't move 3 toes and 2 toes are slowly freezing up, not sleeping through the night, etc.

    I found your messages and texts very helpful and I agree with your idea of implementing a Q/A board for us new beginners and info area on this most mysterious syndrome. THANK YOU ALL. I look forward to reading as much as possible!!!!

    My Pain Management Dr. has me on Gabitril and Ultracet for sleep and pain. As I've read this message board, you all have not mentioned these drugs. What do you know about my medication? The people who are taking Anitriptolene.... Are you suffering any memory loss? My father was on this medication and we had to stop the dosages because of his memory loss.

    I, at this time, am feeling very scared. I am just now reading up on this syndrome and plan on getting as educated as possible but still am in a very nervous state.

    I'm still waiting on another nerve test (as the first one was done incorrectly) and then back to my Pain Management Dr.

    Any more advice would be helpful and appreciated.

    I also wanted to say how you've all touched me already and I wish all of you and your family who are suffering from this monsterous disorder the very best.

    Please continue to help educate me and others. What a blessed idea.

    Saint

    Last edited by Saint; 12-18-2003 at 01:31 PM.

     
    Old 12-18-2003, 01:42 PM   #35
    Lindaa123
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    Re: Vitamin B & RSD

    Hi Pran,
    I've gotten used to the amitriptyline & it doesn't make me sleepy during the day anymore. It hasn't affected my memory loss any more than the rsd did before I started taking it. The increased neurontin affected my daytime groggyness more than anything. My PM doc then agreed that I could stay with the lower dosage (1200mg) which I wasn't even taking while working but am now. I'm doing okay on it.
    Good luck,
    Hugs,
    Linda

     
    Old 12-18-2003, 02:20 PM   #36
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    Re: Vitamin B & RSD

    [B]
    Here we go again guys. Glad you are gaining more knowledge about the different syndromes. Hope it is of some help.
    The Dystonic Syndrome.

    The dystonic syndrome is another subset of RSD. This syndrome involves movement disorder. It used to be thought that RSD was just a painful condition and that it didn't affect movement at all. In the 1980's Dr Schwartzman and Dr Kerrigan showed that the sympathetic nervous system dysfunction of RSD caused different kinds of movement disorders. The disorders include: Decreased co-ordination and dexterity; decreased ability to initiate movement (the brain will think , "move foot" but the message is delayed in reaching the foot. It will move, but it doesn't happen immediately. If a person is walking and there is a delay in one foot moving, the forward movement of the body will cause this person to fall, because there is a delay in the foot moving forward; balance may be affected. Dystonia may occur causing the limb to contract or get stiff while the muscles are extended; a motor dystrophy may occur ( constant contraction and relaxation of large muscle groups )

    These movement disorders cannot be stopped. Remember that Dr Schwartz said that people with classic RSD would not get contractures if they used their limbs? If a person suffers with a dystonic syndrome no amount of physical therapy will prevent or reverse the movement disorder. I spent 5 hours a day, 5 days a week in hand therapy for 6 months because I was told that if I worked hard my contracture and my RSD would get better. I worked so hard and yet my contracture went from 3 degrees to 90 degrees.

    It is believed that the movement disorders are caused by the wide dynamic range neurons transmission (the static between two nerves). It is like having a broken traffic light when lots of signals are reaching the brain at the same time. Static that is caused when one or more nerve fibres fire so often and erratically that it causes the nerve fibres next to them to fire also.and/or it is in the feedback between the peripheral muscle spindle and the sympathetic efferent nerve fibres. I described the way it felt, as if metal wires had been put in the tip of my fingers and they ran through my fingers and hand, out above the wrist, back in at the elbow, then ran through my shoulder, and out through the centre of my head. Then it felt as if someone was pulling so tight that it pulled my fingers into my palm and my wrist to 90 degrees.

    Treatment of the Dystonic Syndrome may include: Muscle relaxers to help decrease muscle spasm/tension; NSAIDS to help with the pain response; Parkinson agents to help decrease muscle spasm/ tension; Anxielytics which help control the brainstem which controls muscle and tone; Botulinum Toxin may be injected directly into the contracture in minute amounts which makes the overtight muscles a little weaker to decrease tone and increase movement. Edna interrupts to remind you that Botox ( Botulinum Toxin ) is now becoming popular in the treatment field.

    Only one more to go guys. Thank goodness !!! Sorry about all the typing errors. LOL.

    Hugs,
    Edna xx[B]

     
    Old 12-19-2003, 02:22 PM   #37
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    Re: Vitamin B & RSD

    [B]
    Last post guys!

    Visceral RSD.

    The last syndrome of RSD is the somatovisceral syndrome or subset of RSD. This is when instead of a stroke or heart attack causing RSD, the sympathetic activity causes problems in organs. These people usually have problems with their bowels, urine, or even heart problems. This can affect any or all organs. treatments include treating the specific organ problem. Ganglion Stabilising Agents work on the ganglion and quieten it down. If the entire body is affected then a drug such as Belladonna can be used which quiets the sympathetic nervous system.

    As you can see, these 5 syndromes have significant differences in their symptoms. The nerves that are actually misfiring are different in each syndrome. RSD the sympathetic nerve; ABC the C nociceptor nerve fibres; Triple C the A delta nerves; the dystonic syndrome the WDR neurons, and the visceral which affects the sympathetic nerves. With the other syndromes the sympathetic nerves are only affected because they run so close to the affected nerves that are backfiring. Blocking only the sympathetic nerves will only lessen some of the symptoms but never cure the condition.

    I hope this hasn't confused anyone. I think it actually explains why we have such different symptoms, why no matter what you read, so many of us have different symptoms, and why research studies have not been able to be duplicated and the same results gotten. Different mixes of patients with different symptoms will respond to the same treatment differently. Do more than one of these syndromes seem to apply to you? This is because you can have more than one syndrome at a time.

    Again I must remind you that physicians haven't been able to prove the above information but these theories have developed from research and observations. Dr Ocho discovered the ABC syndrome by using thermography in 1986. Dr Robert Schwartxman refers to the syndromes as subsets. He discusses the different effects on RSD caused by the sensitivity of the A delta and C-nociceptor nerves, but he believes that the sympathetic nerves misfiring is the cause of the sensitivity of these nerves. He believes that first the sympathetics must be settled down, then the other nerve sensitivities can be addressed. Dr Dr Schwartz( different from Dr Schwartzman) believes that the sympathetics are only involved because of the misfiring of other nerves. It is confusing..but this is RSD, what else can you expect?

    That's it guys...for what it's worth. I know that David's Pain Consultant is a great fan of Dr Robert Schwartzman. Find all you can from the net, that he has written. He has done some great research.

    Merry Xmas to you all.

    Hugs,
    Edna xx[B]

     
    Old 12-19-2003, 06:48 PM   #38
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    Smile Re: Vitamin B & RSD

    Hi Edna,

    Thanks again for all that work. A long time ago, maybe fifteen years ago, the anesthesiologist I was seeing then wanted me to see Dr. Schwartzman. We called the hospital he was supposed to be at, but he had moved and we couldn't track him down. I've read his name regarding RSD many times. Thanks again.

    Sharon :cat-head:

     
    Old 12-20-2003, 05:04 AM   #39
    ejames4773
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    Re: Vitamin B & RSD

    Hi guys...Just type his name in between inverted commas and you will access some of his writings.

    Edna

     
    Old 12-20-2003, 05:36 PM   #40
    Horsie Nutt
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    Re: Vitamin B & RSD

    Good deal Daisy-Head. Let me know what you come up with, I'll keep looking up info for now.

    Woot

     
    Old 12-20-2003, 06:21 PM   #41
    Jewel2
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    Re: Vitamin B & RSD

    Woot,
    We could go ahead and post what we have. Moderator 2 said we can add to the sticky note thread later. I'm done consolidating Edna's article and have corrected the few minor typo's. We could start with that and the emotional article. Your important facts article should go in it, too. Do you have any additional info to add to it? I'll copy and paste the info on how to get help with meds from the other board.

    I know Moderator 2 said to go ahead, but I'm not quite sure how to initiate the post. Moderator 2...?

    This will be good! I know people will benefit.

    Julie
    Daisy-head

     
    Old 12-24-2003, 11:52 AM   #42
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    Re: Vitamin B & RSD

    Bump....Bumped this up because of the reference to botox.

    Edna

     
    Old 12-27-2003, 10:56 PM   #43
    Aly B
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    Re: Vitamin B & RSD

    Hi Guys,

    I am a little bit late adding to this..

    I have recently noticed that after never really in my life being bothered by mosquitos that this year they are biting me. I read somewhere years ago about this usually be due to a vitamin B deficiency. (I will get around to looking this up... I am too tired right now) I have also heard that CRaPS deletes your B12 stores.

    I was planning on getting full bloods done soon including hormonal levels and B levels.



    Aly

     
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