Hi everyone,

I introduced myself at the introductions thread, but here it goes again, in short:

My wife broke her left hand 22 days ago. 2 days ago she was diagnosed with CRPS.

I have been reading non-stop every possible site, but the info is getting repetitive and I still do not have some answers, such as:

- how early is early diagnosis? is 24 days early?
- starting OT "early" helps to prevent crippling, or is crippling inevitable?
- she is already having muscle spasm in her legs and arms. Is that a sign that it is spreading?
- I have heard about stages, but could not find the rank. How many stages and what means each stage?
- What can we do to stop it to spread and evolve?
- Most of the texts refer to pain killing, but the thought of crippling is killing us. Why donīt the texts address objective ways to improve physical condition?

We are still in the hospital. The more I read, the more afraid I am to leave the hospital. I havenīt told her all that I have read so far. One post by an 21 year old British girl in wheel chair that I found here devastated me.

Please, cheer me up with some good news. But please, be as scientific as possible. We are scared enough to hear wild guesses.

Cheers from Brazil,

Flavio

flavio,

Welcome to our group. Sorry we have to meet this way tho. We have a lot of people here with different things going on so far as rsd goes. I can tell you what I know. Please don't take it as gospel because it is different for a lot of people. I have had 8 surgeries on my left foot. that is how I got mine. My doctor said I had it over 2 years ago, but I had such bad infections going on in the foot, that it wasn't something that I could deal with then. 4 months ago I fell and broke the toes on my right foot. It has now spread to that one now. I'm going to get sympathic nerve blocks for the right foot, and am going to get the scs put in for the left. Pain meds can help, as can anti-depressants, and meds such as neurontin or lyrica. Just make sure you find a good Pain Management doctor who has experience in rsd. I know others will have links and all for you to go to. Some have had rsd in one area and it has never moved elsewhere. others have it spread quickly. It is so hard to find something specific about rsd as there are so many theries about it. Just keep being as supportive as you are now, and it will make it easier on her. stay with us and keep us posted as to what is happening.

Mary

Flavio,

Welcome, sorry it is because your wife was diagnosed with RSD. A few things you need to know, being an understanding husband I would say is number one. You should explain what you have learned to your family, so they believe your wife when she complains about her pain or the fact that she can't sleep and how tired she is. She won't feel like cooking some days or like doing any household chores. Most families say they understand but when this goes on for years, they make remarks such as you would feel better if you exercised more or do you think you really have to take all of those medications and there is also the if you got more sleep you would feel better. Believe me I think I have heard them all and then some in the 8+ years I have had RSD.

You had ask if 24 days was an early diagnosis, you bet it is. I was diagnosed 4 months after I fractured my right foot and I felt that was a fairly early diagnosis. You also ask how to keep RSD from spreading, the only way I have heard is to have nerve blocks done as early as possible, this doesn't prevent spread so much as could possibly put the patient into remission. The nerve blocks are done usually in a series of 3 or 6 depending on your pain management doctor. I personally had blocks done in a series of 3, I didn't go into remission but the only spread I have had so far is from foot to ankle and maybe the shin.

As far as PT or OT preventing RSD from becoming a crippling disease, IMHO it doesn't make any difference, if it's going to happen it will. Not everyone that has RSD is in a wheelchair, walks with a cane etc. There are some that are still working, I think it depends on the individual. I wouldn't worry so much about stages as your wife is very early into this. I think you should be honest with your wife, this is her body and she deserves to know what she may or maynot be facing.

Good luck and God bless. If you ave any other questions you can personal message me and I would be more than happy to try to answer your questions.

I am sorry to hear about your wife, every time someone gets this diagnosis it is truly devastating. However, you are off to a good start getting a diagnosis this early on, I have read that the first six months are "early", and I truly hope that your wifes condition is reversible. I donīt really know the answers to your questions since I only have my own condition to relate to, but as I understand it, there are a few things that you can and should do.
First, obviously, is to control the pain as good as possible, with the help of a good doctor. There are a lot of different medicines out there that can help, from normal painkillers to medicins developed for epilepsy, depression etc that help in managing the pain. It takes time to find the right combination, but it is so important to stop the pain, at almost any cost.
Second, it is very important to try to keep up the range of motion in the arm. Is your wifes hand/arm in a cast/immobilized? Again, find a good doctor that really knows about CRPS, and ask if it is maybe possible to have a brace that you can open, because it is really important to keep the blood moving in the arm and prevent the arm from swelling. Every little movement that your wife can do without pain is helpful, if it is rolling the shoulders or bending a finger - if she can do it without pain, then keep doing it as much as possible! If it starts to hurt, then stop. If she is able to touch her skin without pain, then make her do that, or maybe you can do it for her. Massaging the fingers, moving some soft cloth/textile over the skin, putting the fingers/hand in handwarm water and moving the fingers in the water could help reduce swelling. Using skinlotion to keep the skin soft and give painfree stimuli to the nerves can also help. These things might sound silly and you may not see results for a long time, but it is important to give the nerves stimuli/impulses from the arm that are not painful, and slowly convince the nerves that not every touch is dangerous.
A third thing that comes to mind is food. Avoiding salt or only using mineralsalt helps keeping the cells in the arm in the right balance, and reduces swelling since salt binds water. See the link http://www.rsdrx.com/four_f's_diet.htm for more info. Vitamin B is especially important I think.

I am absolutely no scientist, just a "normal" sufferer. Luckily I still after two years have full movement in my CRPS-arm, I can use it almost normally, I "just" have pain and sensitivity, and I got my diagnosis just ten months ago. Fortunately I have been in physical therapy all the time and forced myself to move the arm, my cirkulation is as good as normal now, I have some swelling but nothing severe. I am confident that I still can go back to my work again soon, even though my job is working with my hands. I really, truly hope that your wife will be okay! Have hope and stay positive, that in itself will help you both! Gentle to you both.

Hello Flavio,

I have been pretty weak during the last few days and didn’t read your post until today. I want to reply to you as quickly as possible, as you asked to about information that you haven’t already heard, and what you’ve read here is pretty much what you read everywhere else: It certainly won't say what you will read here.

how early is early diagnosis? is 24 days early?24 days is extremely early, and I’m guessing it’s based almost entirely on the physician’s observation of a spreading area of warm red skin (inflammation). I am only aware of one mention in the literature in which someone was diagnosed with RSD in less that 24 days.

I have heard about stages, but could not find the rank. How many stages and what means each stage? In the past there was a lot of talk about 3 stages of RSD, but hardly anyone mentions that stuff anymore. I divided it into two stages: The warm, red skin of inflammation, followed by the cold, blue skin of cyanosis.

I’m assuming your wife’s dx is based on a widening area of inflammation, as that is the only sign I can think of that could be identified to soon.

What can we do to stop it to spread and evolve?Almost everything written about RSD during the 1st (inflammatory) stage comes out of the Netherlands (Holland), and is focused on treatment with antioxidants: Specifically the topical antioxidant DMSO. This method has been so successful that Dutch law now requires physicians to provide DMSO to their RSD patients.

The reason DMSO has been effective is that it neutralizes inflammatory molecules called oxygen free radicals (OFRs). They are responsible for the inflammation spreading. By reducing the number of OFRs, inflammation can’t spread as quickly.

But DMSO is a topical antioxidant, and inflammation is taking place throughout the limb in places DMSO can’t reach. In order to really suppress OFR spreading of the disease, you will need a systemic antioxidant.

There are several different types of systemic antioxidants, but I will only talk about grape seed extract (GSE). This is because I’m not familiar with the dosages of the others but I do about GSE. I know what I would do if my child was diagnosed with this disease in only 24 days: I would have her start taking 600mg of GSE daily, and apply a scent-free DMSO to the red skin 3 to 4 times a day.

600mg of GSE is 6X the recommended dosage.

I expect that before you would accept such radical advice from a stranger, you would want to know more about antioxidants and RSD, and you would want to know about any adverse events involving GSE and DMSO. You would carefully search the information on the Internet about these two products.

I can tell you what I learned in a search six years ago: There has never been a reported overdose of GSE, nor could I find anything about interactions between GSE and any food or medicine, nor about any side-effects from taking it. Apparently, the only thing GSE does is neutralize OFRs

Frequent application of DMSO does cause nausea and flu-like symptoms. When it was first introduced, it smelled bad and left a horrible garlic-like taste and breath. You can now buy cream-scented DMSO that leaves no taste or odor. I personally believe that if it offers any hope of stopping this disease during the inflammatory stage, I don’t mind feeling sick for a little while.

I doubt her doctors would agree with my suggestions, so the two of you may have to decide whether you go along or try these two products independently.

I don’t know about prices in Brazil, but here in the U.S., you can purchase both the GSE and the DMSO for under $50.00 total.

Time is of the essence. I don’t know whether my suggestions will help because there is no research into this at all, but I do know that there is a very small window of time. I just don’t know how small that window is

I am not saying you should try my suggestions rather than the doctor's: Try both (unless you feel antioxidants might adversely affect what the doctor's are doing). I would love to learn whether antioxidants alone can stop RSD in stage 1, but your goal is to help your wife win this fight, not conduct research...Vic

Here are a couple of abstracts about DMSO and RSD. I have others and will be glad to email them to you: Just click on the rsd_hbot link at the bottom of this page…Vic


Title Treatment of acute reflex sympathetic dystrophy with DMSO 50% in a fatty cream. Author Zuurmond WW ; Langendijk PN ; Bezemer PD ; Brink HE ; de Lange JJ ; van loenen ACAddress Department of Anaesthesiology, Free University Hospital, Amsterdam, The Netherlands. Source

Acta Anaesthesiol Scand, 40(3):364-7 1996 Mar Abstract Acute Reflex Sympathetic Dystrophy (acute RSD) was defined using a reproducible classification. Elevated temperature of the affected extremity ("calor"), measured by the dorsal side of the observer's hand and mentioned by the patient, pain ("dolor") measured by the Visual Analogue Scale (VAS), redness ("rubor"), edema ("tumor") and limited active range of motion ("functio laesa"), all contributed to the classification system. Patients scoring 4 to 5 positive symptoms were considered to have acute RSD. A prospective, randomized and double blind study was performed in 32 patients, all suffering from acute RSD. In all of these patients the primary injury was the result of a previous accident. One patient was taken out of the study because of his surgery. The study involved treatment with a fatty cream with 50% dimethyl sulfoxide (DMSO, group A), or without DMSO (placebo, group B), both for 2 months. All patients received physiotherapy applied within pain limits. Application of the creams resulted in both groups in an improvement of RSD-scores and VAS-scores after 2 months. However, the improvement of the RSD score in patients of group A (DMSO-group) was significantly (P < 0.01) better compared to group B. The results suggest a certain activity of DMSO 50% cream in patients suffering from RSD and is, therefore, recommendable. Language Eng Unique Identifier 96284595

* * * * * * * *



Cost effectiveness and cost utility of acetylcysteine versus dimethyl sulfoxide for reflex sympathetic dystrophy.

van Dieten HE, Perez RS, van Tulder MW, de Lange JJ, Zuurmond WW, Ader HJ, Vondeling H, Boers M.

Department of Clinical Epidemiology and Biostatistics, Vrije Universiteit, Amsterdam, Netherlands.

OBJECTIVE: To determine the cost effectiveness and cost utility of acetylcysteine versus dimethyl sulfoxide (DMSO) for patients with reflex sympathetic dystrophy (RSD), from a societal viewpoint. DESIGN: An economic evaluation was conducted alongside a double-dummy, double-blind, randomised, controlled trial. Patients were followed for 1 year. The primary outcome measure was the Impairment-level Sum Score (ISS). Utilities were determined by the EuroQOL instrument (EQ-5D). Both cost-effectiveness and cost-utility analyses were performed. Differences in mean direct, indirect and total costs were estimated. Corresponding 95% confidence intervals were calculated by bootstrapping techniques. RESULTS: Both groups (DMSO, n = 64; acetylcysteine, n = 67) showed relevant improvement; no differences in effects were found. Only the total direct costs were significantly lower in the DMSO group for the period of 0-52 weeks. The incremental cost-effectiveness ratios showed that, in general, DMSO generated fewer costs and more effects compared with acetylcysteine. Post-hoc subgroup analyses on cost effectiveness suggested that patients with warm RSD could be best treated with DMSO and patients with cold RSD with acetylcysteine. These results were based on small subsamples. CONCLUSION: In general, DMSO is the preferred treatment for patients with RSD.

Hi Flavio here is an article that I hope puts you more at ease.

http://www.rsds.org/pdf/AZ%20-%20Eas...%20Tribune.pdf

Vitimin C has been shown to stop a large % of emerging RSD after a break, Vitimin C is an antioxident but not as strong as the grapeseed extract that Vicc's speaking of, though it has other propertys as well I would advise both and this is something you can request of her doctor. The above RSD article cites RSD as a nerve disorder but emerging research shows an inflamitory process perhaps responsible for the origional process starting, and spreading, and so I think represents the best chance along with a multidiciplined (combined) aproach to therapy..

http://www.nutraingredients.com/news...7-vitamin-c-to

But I am no doctor, just done alot of research.

Stay strong bud a positive outlook can help her tremendously right now.. and we are all diffrent in that RSD/CRPS is a bunch of diffrent syndromes lumped together because they have in common so many signs and symptoms, so what has happend to one person another may never happen to another.

Just don't let them ice her limb at all.. and types of casts are important as well as she will need to keep some mobility going there. we are our own best advocates so continue to learn more, ask and do your research, you just do not see many people who HAD RSD and are over it posting because they have a life again.. lol almost funny aye (Canadian humor).. But seriously bud with early diagnosis she has a great chance.. and you are helping her.

Sandra

Thank you so much for your kind attention.

I am taking all your thoughts and advices in consideration.

She started OT one week ago, with visible improvement in range of motion.

VICC, she might be one of those rare cases indeed.

Her symptoms occurred really fast. The enormous pain came right after the accident and the cyanosis, swelling and stiffening of her hand came within a week.

All this made us fly to Sao Paulo, our biggest metropolis, to find a specialist in hands. His dx was instantaneous, and he dx her with severe CRPS. Her hands were rock hard, with shades of green and blue all over. Luckily we stumbled upon a great doctor. The only downside was that he flew to the USA the next day to a congress, leaving us orphans...

Thank you once more for your support and kindness.

Warm hugs,

Flavio

Hi Flavio,

I do hope that things are improving for your wife. It is wonderful that she had such early diagnosis as this makes the chance of remission/cure great as long as treatment is carried out as soon as possible by a Specialist Pain team.
I have actually had some discussions with a physiotherapist who is a member of a team which appears to successfully treat CRPS/RSD in Brazil.
The "noigroup.com" and "somasimple.com" websites have a couple of regular members from Brazil also, it might be a good idea if you can make contact via these sites as they will probably be able to direct you in the direction of the specialists.
Wishing you luck
Tayla

Dr. Hooshmand's book states that the window of diagnoses and treatment is 6 months. I misread the book last week and stated 3 to 7 months but it is 6 months according to him. On that I disagree because I have seen people get better after not being diagnosed for years. If that were the case why would blocks be given later on in the diagnoses.

He also says there is 4 stages of RSD.

The first one is characterized by constant burning pain. It is aggravated by emotional stress.

The second one occurs between 3 to 7 months after the inury. The second stage is accompanied by vasoconstriction and coolness of the extremity. He states that the temperature difference is not as obvious in state 3 as in stage 2.

Stage 3 is advanced so that it is more easily diagnosed. It covers smooth and glossy skin, pale or cyanotic and dry skin, brittle nails, hypertrichosis, osteoporosis and pathologic fractures.

He also states that in the third stage that the patient can end up with depression, suicide, or unnecessary surgery which further aggravates the pain.

The 4th stage is caled the disastrous stage.

These stages are out of his book but came from a man named Bonica.

As far as treatments he talks about triggerpoint injections, nerve blocks, physiotherapy, early mobilization and goes on to talk about the meds used for RSD.

He says team work is the essential. Physiatrist, Anesthesiologist, and a Neurologist.

I think any Dr. that knows about RSD can help with it though. My PCP is my treating Dr. for the RSD. I also have a Anesthesiologist that does blocks if I need them.

I think councelling is important if a person is dealing with depression.

As far as PT I think a person must have a good one to help them with the RSD.

I was fortunate to have very good ones. I had 2 that started taking care of me and the girl was great then after they left I ended up with a Husband and Wife team that studied in Holland where they said that they believe more in massage and other things then physical therapy itself.

I do consider myself as close to remission as possible. I didn't get here overnight though. It took 4 years of PT to deal with the Fibro, TOS, back problems and the RSD. I had blocks that did help me a lot.

I realize a lot of people don't agree with a lot of Hooshmand but my Dr. used his book to do my medical care.

All of us on here have different ways of getting better and that's what it takes to get us each to where we need to be.

I'm on a small dosage of Methadone for the pain which helps most of the time.
Last winter was the hardest winter I ever had so I worry about this one. This summer I was miserable because of the heat. I sweat really bad from the RSD and if I get too hot I go into a pain cycle also. I stayed in most of the summer. We had a unusual summer for Co.

You asked these 2 questions and I wanted to give you some answers that I knew of.

Good luck in helping your wife with this. She is very lucky to have such a wonderful person in her life. I know how that is.

I hope she starts seeing some better days soon.

Ada

By the way, mine started in the right arm and hand from TOS surgery. I believe I had it before the surgery but the surgery just multiplied it and showed the other signs of it.