Hello all,

I am new to this board, but not new to RSD.

I developed RSD in 2002, although not diagnosed until 2004, but in total have been dealing with the pain and debilitation for over 5 years. And although I have done self-research on RSD over the past few years - I have never been reached out on a web board before.

But at this time I am poking around the web trying to find answers on a specific issue -- and having some difficulty accessing this information -- so thought I might ask others who also have RSD.

This issue has to do with breathing exercises (long, slow, concentrated deep breathing pattern), which I believe works for me in attempting to calm down and relax my autonomic/sympathetic/parasympathetic nervous systems. I guess in a sense trying to re-set them from the over-active malfunctioning pattern it is clearly on. Obviously it's not a permanent 'fix', but will work for an hour or so ... but then my body slips back into the fast, quick, shallow pattern -- and when it does all my pain patterns seem to come back in full exacerbated intensity.

I know there is no research, anywhere, or at least I've never been able to find it that ties the onset of RSD to a mental/emotional component; however in my personal experience the time of my initial injury I WAS under tremendous stress (from issues going on in my personal and professional life) and I was NOT dealing with the stress very well. In saying that, I have always firmly believed this to be a contributor to the onset of RSD. The timing is too uncanny to be a coincidence otherwise.

And while I've tried everything modern medicine has to offer to deal with the pain of RSD, I have found it to be of very little help. The breathing exercises have actually been the most help (although short term). I am so sorry for the long story and explanation, but I what I am looking for is input from others:

Are there others out there that equate the onset of RSD to have to do with a physical injury + in conjunction with severe stress they were also currently going through? Also are there others out there that have found breathing exercise to be of benefit? In general what have most found to be the best treatment for them (aside from RX, which I am on plenty of)?

(Incidentally my chief pain seems to stem from vasco-constriction of blood vessels: causing frostbite-type sensations in limbs, discoloring, etc. This is present on all limbs, including hands and feet. The initial injury was in my low back.)

I've eagerly been checking responses to this thread ... but nobody has responded to me

If anyone has any thoughts or input to my questions posed to my first post on this thread I would greatly appreciate hearing

I keep up with all current research (medically driven: Dr. Oaklander's recent clinical research/findings, the work Dr. Schwartzman does with ketamine, etc, etc) ....

But none of this, or anywhere else that I have ever read, defines if the onset of RSD, which appears to be related to inflammation of nerve fibers, may or may not be directly related to ones personal stress during time of initial injury. Also if self-inducing, very volunteerily attempting to slow down nervous systems via breathing, meditation, etc has helped others (although very short-term help).

I've been inclined to think if research starts to point to inflammation - I wonder if the next steps for the reseachers would be determining *how* to break down inflamation; I wonder what this would involve. Anyway who has any input on any of these things, I would really love to hear from you and share thoughts, albeit maybe a bit rambling thoughts - at least on my end.

This condition can be extremely tiring, and with the snow/cold weather (at least where I live) -- my pain levels are very high, which causes frustration and some depression, and needless to say --- exhausted with it all

Hi Daydreamer,

So sorry to have missed your post...I haven't tried the breathing thing, maybe someone else has, though.

As far as the stress element goes, I can only tell you my own personal experience of developing RSD. Yes, I was very stressed at the time. But there were two particular incidents which I am 100% certain caused it.

I broke my arm (couple of hand bones and ribs too) in a bad fall on slippery ground after a typhoon 3 years ago; I was running at the time and fell across a step which snapped the arm. Colles fracture. Went to ER, casted, and then couple of days later it was reset by closed reduction (didn't open the arm, they just pull, ouch) and for about a week it was surprisingly quite comfortable.

Until I went for the weekly check and they decided the cast was a bit rough and changed it. Bad move #1. Started hurting like hell. No matter what they did, more casts etc, that's how it stayed, quite incredibly painful.

Came to the time to remove the cast. Arm was pale, dry and thin. Afterwards went straight to PT, where they put my arm in polar thermafrost ice for 20 mins. Bad move #2. Single most agonising experience of my life, and I knew something terrible had happened. But in those days I didn't question medics.

When they removed the ice, my arm was brilliant red, swollen, burning, oh that'll wear off, they said ...but that's how it stayed for the next 6 months, despite PT, despite everything. Hello RSD.

So....I just know that if they hadn't a) changed the cast and b) iced it, my story would be very different. Stress or no stress, for me these two mechanical "medical procedures" caused it. The changes were instantaneous and unmistakeable.

Also, everyone who has been injured is in a state of stress, aren't they? But RSD doesn't happen to everyone....so, don't know the answer to your questions, just giving you my input. I'm sure others will too,
all the best

Hi DD

... and welcome. Sorry you have to be here, But glad you found us.
We both developed RSD 2002. For me it will be 5 yrs next month.
You were slow in being answered because it is the weekend.
It will pick up tomorrow afternoon.
I get a lot of my answers from www.rsdhope.org or www.rsds.org

http://rsds.org/pdf/Recog_Undrstd_TreatRSD_530.pdf -
on the second page 1/2 way down there is info about a woman who the doctors said was
exaggerating her symptoms in order to get attention.


Depression does not cause RSD:
http://www.rsdhope.org/Showpage.asp?...8&PGCT_ID=1780

This is just a start. More people will come a long and answer you.
If your response gets too low on the page...just go into the thread, hit reply & write "Bump" in
the message area and hit enter. Your thread will bump to the top o f the page. Take care and be patient- others will be a long soon.
Hope

I was under a lot of stress when I developed RSD also. My ex-son-in-law was a SOB and my daughter was in the process of getting him out of her life and he was taking it out on me. I was also dealing with major depression from something that had come out of my past. Bill and I were trying to help raise our two grandson's and we were both sick at the time. Susan would go to work and her lazy husband would drop them off on us. At the time neither one of us was able to do it but we did it for the boys. They were just 2 and 3 at the time so it was hard. I ended up falling 10 times because of dizzy spells I was having from depression meds and meds for my back. I have often wondered about that. I was in such a bad way at the time, physically and mentally that I was so suicidal that my Dr. took over major care of me. I honestly didn't know wheather I was coming or going.

I have been taught meditation and listening to tapes to try and help me with the pain but it does very little for me. I tried every med out there and couldn't take any and was finally able to find Methadone that I could take.

I don't know if being stressed can cause this to happen but if I had not been in the shape I was in at the time I would not have ended up with the TOS and RSD.

It took years of councelling to pull myself back up to where I am at now and even now I'm not dealing too good with the depression but my stress has leveled out. As I said my Dr. taught me to meditate and he prayed with me many times to calm me down. I never was any good at handling stress. Bill took care of all of our stressful issues for the past 10 years or so. Now I hae to have the kids help me with them.

It would be interesting to see how many were dealing with really bad stress at the time of their injuries.

Welcome to our group.

Ada

Hello Hope, Thanks for response -- I am familiar with the RSDSA (have financial contributed to them for a few years) and am familiar with the other organizations, etc.....and am very current on the most recent scientific information.

But what I am looking for is input on if others happened to have been under stress during their time of injury (I was not "depressed" -- just very stressed out) + this was going on concurrently with a fairly signifigant physical injury I sustained. The other thing I was wondering if others have experienced help from breathing excercises...

I have found nothing on the web that substantiates any of the above: just my own conclusions, and wondered if others have made similiar observations/conclusions from their personal experiences.

Thanks for your welcome!

Artist -- it was so good to hear/read your comments in response to me.

I did have an injury -- a true bonfire physical injury (like your arm), but mine was in my lower back: went through tons of PT, chiropractor, prolotherapy, acupuncture, etc, etc -- including surgeries. And the initial injury was the onset of RSD....

BUT at the time there is no way I could deny that I was under a great deal of personal stress (in the middle of a messy divorce + going through a stressful corporate acquisition with my former employer). I was very, I mean very, stressed: to the point of having panic attacks -- I had never had panic attacks ever in my life prior, and have never since...

BUT doing the exact timeframe of the injury (a couple months prior and a couple months after) I was in this severe stressed-out period. I am absolutely convinced that it is too much have been a coincidence: unbeknownst me I had my sympathetic system so stressed out, on overdrive, that I do believe my body just simply could not properly heal from the injury. End result: excessive permanent inflammation of the peripheral nerve fibers: persistent "Reflex Sympathetic Dystrophy".

I know the 'were you under stress at time of injury' was one of the questions on the RSDSA/NIH online info. gathering questionnaire they were taking 1-2 yrs. ago, but I haven't read anything about what they have been able to access from the results of that questionnaire (actually, the results from all the questions they asked on it).

Essentially, I wonder if stress *was* a contributing factor to the initial injury not healing properly, and hence is a contribution to the offset of RSD. And no research I have found (and I've done a good deal of self-research over the years, as I'm sure many others have too) has ever definitively stated one way or the other *if* stress, or not handling stress well, is actually the over-exacerbation of the sympathetic nervous system to begin with (although at that point it is a temporary thing ... unlike RSD)


Re: your story, which you shared with me above, I was sorry to hear about your arm, the offset of RSD, and what you've been through -- I can identify: and I also had bad experience(s) with ice (ouch!) in the beginning of this situation a few years ago.

Ada -- so nice to hear from you!

I was sorry to hear all that you had gone through with your ex-son-in-law, hopefully that is all behind you now and he is out of your lives.

What stuck out for me, in your post, was that you too, were under stress at the time of initial injury/time of RSD onset. I truly believe it very well is a contributing factor in the complex situation....

Even knowing the first time RSD was documented (injured soldiers during war) ... well, can't think of anyone/anywhere who is under more stress than a soldier during combat: their 'fight or flight' system must be on mega over-drive = combine that with a physical injury = seems like the perfect recipe for RSD.
If this is the case, it seems scientists should be doing more research on this aspect. Clearly they will never fully be able to best determine *if* there could be a cure for this condition, until they fully understand *what* RSD is, and fully *what* causes RSD to happen.

In the meantime I guess I will stick with my breathing exercises: I really have found them to be amazing in slowing down the pain levels (it's really the only way I can get myself to sleep at night to be quite honest). I don’t take methadone – but do take narcotics: oxycodone (time released), roxicodone (not time released), as well as anti-inflams and meds in the anti-seizure family. I believe all to be a fairly common “cocktail” mix for RSD patients, and/or other chronic pain patients of various unspecific varieties.

Again, thank you for answering me – it was very nice to read your thoughts!