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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Re: Vitamin B & RSD
Dec 12, 2003
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
Re: Vitamin B & RSD
Dec 12, 2003
[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]
Re: Vitamin B & RSD
Dec 12, 2003
[QUOTE=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[/QUOTE]

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 :wave:
Re: Vitamin B & RSD
Dec 13, 2003
[B]
Hello again Pran :wave: 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 [/B]
Re: Vitamin B & RSD
Dec 13, 2003
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 :wave:
Re: Vitamin B & RSD
Dec 14, 2003
[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
Re: Vitamin B & RSD
Dec 15, 2003
[B]
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[/B]
Re: Vitamin B & RSD
Dec 17, 2003
[B]
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[/B]
Re: Vitamin B & RSD
Dec 18, 2003
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
Re: Vitamin B & RSD
Dec 19, 2003
[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]





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