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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • Vitamin B & RSD

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    Old 12-13-2003, 03:39 PM   #16
    Pranayama
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    Re: Vitamin B & RSD

    Hi Linda
    Thank you. The dose I have been prescribed is 25mg at night. When you say it doesn't affect you very much, does it at all? Or is it hard to tell, because the others do. How does the neurontin and lortab affect you? I hope to hear back from you.
    Keep smiling
    Pran

     
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    Old 12-13-2003, 04:02 PM   #17
    Pranayama
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    Re: Vitamin B & RSD

    Hi Julie
    The support here truly is amazing. The magnesium helps to relax the muscles, which I find tense up because of the pain. It is the bodies defence mechanism. I have found over the years (not so much with the RSD yet, but with the pinched cranial nerve) that by keeping the muscles relaxed, that I can minimise the effect the pinched nerve has. The more tense my muscles, the tighter the nerve is pinched and the more pain is felt. Each day I was taking - 280mg Magnesium and drinking "Unique Water" 3 times a day 600ml each which has 125mg per bottle. (I'm not sure if this is available o/s). Until recently I have switched to a magnesium with B6 in it also. I am now taking 480mg of magnesium, plus the water. I have yet to see the effect it has with the RSD, however I still take it because of the pinched nerve on my left side, and if I run out, I definately notice the difference. If your interested in it, perhaps you could try talking to a naturopath. I find GP's aren't to keen on vitamins.
    I to am also looking forward to beating this thing! Keep Smiling Pran
    P.S Would love to hear from anyone who has beaten it!!!

     
    Old 12-13-2003, 07:22 PM   #18
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    Smile Re: Vitamin B & RSD

    Edna,

    Thanks for that article. It was very interesting (so far )

    Sharon :cat-head:

     
    Old 12-14-2003, 08:05 AM   #19
    Lindaa123
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    Re: Vitamin B & RSD

    Hi Pran,
    The amitriptyline make me a little groogy in the morning. It also helps me sleep. I take 1200 mg of neurontin a day & do okay on that. My PM doc tried to increase it to 2400 mg a day (I was showing signs of spread to my other hand) but that made me too groogy. I take 1/2 a lortab at a time. If the pain is still too bad in half an hour, I take the other half. With the new TENS unit, I have been taking only 1 and half per day. I still have pain but try to find a happy medium between the pain and the drugs. We are different in what helps us and what we can tolerate. Some people can't stand the neurontin because of the ringing in the ears and other side effects. I do have some ringing but it's okay with me because I don't have any other side effects. You have to find the drugs that work for you.
    Are you doing any physical therapy? My new physical therapist has specific exercises for RSD. She has seen people go into remission after doing these. What about never blocks? I have had 5 and took a break two weeks ago to see what would happen. I see my PM doc tomorrow. I hope he gives me more because they were helping & there has been no improvement during the break.
    I have had RSD since August 14th and am trying everything I can to kick this nasty disease into remission.
    Good luck & let us know how you are doing.
    Best wishes & hugs,
    Linda

     
    Old 12-14-2003, 02:39 PM   #20
    ejames4773
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    Re: Vitamin B & RSD

    [B]
    Guys...I wish i could cut and paste the article, but it was given to me by David's first Pain Consultant and I have never been able to access the site it came from. So here comes another episode. LOL

    " Each subset acts quite differently and is treated differently. Only one of these subsets is what is called RSD, which is why we have so many different symptoms and presentations even though we have all been dignosed as having RSD.

    Now I want to back up and follow the lecture given by Dr Robert Schwartz when he described how the different syndromes cause different symptoms and how to treat each syndrome. Remember there are two different nervous systems: The somatic system and; the autonomic system. The somatic is controlled by our thoughts. We tell a muscle to move and it does. The Autonomic system controls the functions that our mind cannot or doesn't control (the size of our blood vessels, sweating, etc ). A good example is when your bladder needs emptied, your brain doesn't tell you to empty it, you just feel you need to go.

    The sympathetic nerves come from the spinal cord, they join the nerve root and they end in the blood vessels, hair follicles, the brain and muscles. They interact at the ganglion which is near the spinal cord and they go to the limbic system of the brain which moderates endorphins and emotions. The sympathetic reaction is the fight or flight response.

    A nerve fibre has negative ions inside and positive outside. A stimulus allows the unions to move back and forth. When the system doesn't work right the ions don't go back. When it doesn't recharge it will refire more easily. Nerve membranes can be irritated by a virus, lack of oxygen, or something pushing on it.

    RSD is what the text books call it. RSD is what we have all been diagnosed with, but what exactly is RSD. The text books describe RSD by it's symptoms. The latest definition is CRPStype1. This more general description doesn't speak about RSD coming from the sympathetic nervous sysytem because many of those who are diagnosed with RSD have sympathetically independant pain. ( Edna interrupts here to say that David now has SIP, and blocks and scs are no longer of use to him ) Let's review the five syndromes and the way in which Dr Schwartz feels they should be treated.

    The RSD Syndrome.
    RSD occurs because the sympathetic system reacts to an injury and the nerves continue to fire, long after the original injury has healed. The nerves never return to a normal state after reacting properly to the signal that part of the body is in danger. The pain is described as burning, achey, and cold. Movement and touch causes excessive pain(hyperalgesia). The limb wll suffer from vasomotor changes causing the skin to become bluish. Sudomotor changes cause either too much or too little sweating and usually some swelling in the beginning but none once the RSD advances to a higher stage. A limb may be cold even although it is sweaty. If left untreated contractures may occur and there is loss of movement and muscle atrophy. Bone begins to lose calcium and the RSD may spread. As one nerve misfires so the one next to it is caused to misfire. This causes an effect throughout the body's nervous system.

    The treatment of RSD includes: Sympathetic Blocks which will stop the symptoms by allowing the nerves to return to resting stage. A few years ago the Nobel prize was given to a physician who discovered that all drugs given by mouth cause an electrical change. Vasodilators increase blood flow by relaxation or dilation of blood vessels. Antidepressants work on the brain itself to make you less aware of pain, anxielytics decrease the effects of stress and anxiety on the body, and physical therapy increases mobility and maintains muscle tone of the injured limb.

    That's all for tomight guys.

    Hugs,
    Edna xx

     
    Old 12-14-2003, 04:31 PM   #21
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    Re: Vitamin B & RSD

    Dear Edna,
    Thank you so much for typing all of that information for us. It is very interesting and helpful. I can't wait to read the next installment!
    Big hugs,
    Julie

     
    Old 12-14-2003, 06:11 PM   #22
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    Smile Re: Vitamin B & RSD

    Thanks, Edna. You are too sweet.

    Sharon :cat-head:

     
    Old 12-15-2003, 05:48 AM   #23
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    Re: Vitamin B & RSD

    I wanted to thank you too Edna. That's alot of typing to do! I'm copying it and saving it in a .doc for future reference.
    <Hugs>
    Cathy :woot:

    Last edited by moderator2; 12-15-2003 at 07:48 AM.

     
    Old 12-15-2003, 07:57 AM   #24
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    Re: Vitamin B & RSD


    Bless you Cathy, that would be wonderful.

    Next installment.

    ABC or Angry backfiring C-nociceptor Syndrome

    The c-fibre is a type of nerve that has the same properties as the sympathetic nerve. The C-fibre actually causes the pain instead of the sympathetic nerve. The C-fibre and the sympathetic nerve travel the same course, and act the same way, in terms of ther chemical and physical propertirs.

    The ABC occurs because c-nociceptor nerves , not the sympathetics are backfiring. Because these nerves run through the body close to the sympathetic nerves, the backfiring and chemicals that are released diturbs the sympathetic nerves causing them to fire inappropriately and thuslt they they also caryy pain signals to the brain. Symptoms include: Red skin (Erythalgia ) : allodynia (light touch is painful); Warm things hurt (warm hyperalgesia). Cold relieves the pain (not ice). The nerves spit out chemicals such as substance C, which causes tissue damage. There is no dystonia, or bone loss, and there may not be much muscle wasting.

    The treatments for the ABC syndromeare: Capsacin cream(Zostrix) which actually pulls out the P substance through the skin. Vit supplements (esp calcium and magnesium and free radical binders) to feed and stabilise the nerves. Kinen and prostaglandin inhibitors to stop the nerve axon from spitting out the destructive chemicals when it backfires, vasoconstrictors decrease the blood flow to the limbs and anti-inflammatory drugs stop the swelling Electroceuticals are used to retrain the nerves not block it.; anti-epileptic drugs help stop the misfiring of nerves.

    With the ABC syndrome , nerve blocks will not stop the pain. The stages of RSD do not apply to the ABC syndrome and there may not be much muscle wasting and/or bone loss.

    Just three more syndromes to go guys, but i have a party tonight, so next installment tomorrow.

    Hugs,
    Edna xx

     
    Old 12-15-2003, 10:08 AM   #25
    Jewel2
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    Re: Vitamin B & RSD

    Once again, thank you Edna!!

    Hey Woot,
    I thought the info was so helpful that I was copying the article into a .doc, too! I was thinking that once it is done we should make a new topic with this article, your interesting facts article and my emotional impact article and make a special post called "Helpful Information for the RSD Sufferer" or something like that. Perhaps we could ask the moderator to make it a permanent topic at the top of the RSD page. We could also include the sticky note information from the Pain Management board about how to get help with meds. We should probably include a disclaimer that this information does not take the place of seeing a doctor... blah, blah, blah.

    What do you think?

    Daisy

    Last edited by moderator2; 12-15-2003 at 12:22 PM. Reason: If someone wants to put this together we will make it a sticky post. Also, new information can be added to a sticky post just like any regular post as a reply. [email protected]

     
    Old 12-17-2003, 02:13 PM   #26
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    Re: Vitamin B & RSD


    Right...here I go again guys.

    The Triple C Syndrome.

    The triple C Syndromes's symptoms are: Cold Hyperestesia is when (the limb cannot feel cold sensation even though it can be felt as pain). Cannot distinguish cold as cold; Cold Hyperalgesia or burning pain: Cold skin may be present in a localised area or throughout an entire limb. Blood clots may be found. "A delta" nerves are damaged which makes vibrations painful; The anterior smooth muscles constrict causing the blood vessels to constrict; the sympathetic nerves that run next to the A delta nerves become unstable and may carry some pain , and there are localised thermographic changes. There will be no stage 3 and the muscle damage and bome decalcification may not occur. May not get muscle and bone degeneration. Do not go into stage 2 or 3.

    Treatments for the Triple C syndrome include: A delta fibre nerve block which may settle the nerves from misfiring. Vasodilators are used to increase the blood flow. Oral Lidocaine may be given orally and IV Lidocane treatments can be used to help stop the nerves backfiring. Vit Supplements because they help stabilise nerve fibres. Electroceuticals are used to retrain the A delta nerves to work correctly( Edna interrupts here...not aware of what these are...possibly an American treatment) Anti-epileptics, and anti- platelet drugs help to prevent blood clots. Serotonin blocking agents help keep the blood vessels from constricting and calcium channel blockers and Parkinson drugs help stimulate growth hormones to regrow nerves and repair damage.

    That's it for today guys. Only two more to go, but they are longer than the others LOL.

    Hugs,
    Edna xx

     
    Old 12-17-2003, 03:51 PM   #27
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    Smile Re: Vitamin B & RSD

    Hi Edna,

    You're the best! Thanks for doing all of that. It's a very interesting article. I'd have to say it's the most interesting I've read about RSD in a LONG time so thanks. How was your party?

    Sharon :cat-head:

     
    Old 12-17-2003, 04:49 PM   #28
    Pranayama
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    Wink Re: Vitamin B & RSD

    Edna, once again - your amazing! This information is fantastic. I am absorbing so much from this site. By the way, I have started on the Amitriptyline. First day wasn't that great, but I think my body is adjusting to it. I'll just see how it goes. It hasn't stopped the pain yet. Can't wait for your next instalment. Keep smiling
    Pran

     
    Old 12-17-2003, 07:25 PM   #29
    Lindaa123
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    Re: Vitamin B & RSD

    I've been so busy I've been missing all these good posts.
    Edna, thanks for all the info. I'm going to copy it, too.
    Julie, How did your block go?
    Pran, How did the amitriptyline affect you? Were you groggy the next morning? All the drug affect me. I don't like taking them but the pain is worse. I just take enough to get the pain to a smaller level.
    Hugs,
    Linda

     
    Old 12-17-2003, 07:43 PM   #30
    Pranayama
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    Smile Re: Vitamin B & RSD

    Hi Linda,
    The Amitriptyline made me very groggy the first couple of days. People were actually asking me if I was o.k because I sounded slow. But I think my body has adjusted to it after only a few days. It hasn't had any affect on the pain yet though. It's still as bad. I know it makes you sleep (which is great) but does it stop it during the day also eventually?
    Pran

     
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