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Coping With RSD : what do I do now?
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 Message 1 of 10 in Discussion 
From: MSN NicknameLady_Discretion  (Original Message)Sent: 9/5/2007 5:24 AM
Hello All,
I hope this finds all of you having a better day with your pain lessened.  I learned last Friday (Aug. 31) that my systemic RSD has gotten worse and I am "in decline."  I have no idea what this means or what to expect.  Will I wind up in an ALS-like state with a respirator?  I'm already fumbling for words and can't walk -- not a good condition for a journalist turned writer.  The depression is here and I can't seem to wrap my mind around what not only this doctor but another doctor I trust implicitly said (same thing: I'm declining).  I go to get a wheelchair tomorrow if I didn't overdo it today, and I'm trying to get a piano so I can maintain my mind-hand coordination (otherwise I'll have to stick to PlayStation2 for coordination).  My family, other than my father, is completely non-supportive, pretending I don't have RSD, and many of my friends are saying, "Well, you're just getting worse."  One took the tact of pointing out all of the things I'm not going to be able to accomplish.  I feel as though I haven't accomplished anything, and now I only have five or ten more years (according to the doctors) to do anything.  I knew from my pharmacist father and my biochemist brother that because this affects the sympathetic nerve system, I would eventually not be able to perform actions such as breathing and blinking.  Anybody got any ideas about prognosis?  My father and my doctor in L.A. have done a lot of research on this, so I don't think they're out in left field; and at least they understand that few diseases illustrate the mind-body connection like RSD.  (In other words, stress equals pain.)  Thanks for letting me vent.  I'd like to hear from anyone.  Take care, all. 


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 Message 2 of 10 in Discussion 
From: MSN Nicknamemirage_angel_hopeSent: 9/5/2007 2:21 PM
 dear lady
dfirst off I am sorrry that this happened to you
from my research what you are talking about does not happen to everyone so you should not take it as a certainty that it will because rsd is unpredictable as to what you will be dealing with 5 years from now.Mine has gotrtten worse over the 8 years I have had it and even with my decline my breathing was never an issue I got woresing symptoms like pain but nothing like that.To be honest of all the rsder I have ever meet  I have never seen smptoms like that.You should go to rsd.org and ask them about it because it comes from you family no on fense I would talk to you doc before believe that true ,sympathetic nerve system is affected different in rsd than it is to most other conditions involving it, because even though  it mess up in all of us we are all very different and just becaquse you hasve it does not mean that you detearorate to such a place.
Even if that does happen which I will pray that it doesn't you can't let it stop you from trying to live the best life possiable try to enjoy life that what I did this smere did a whole bunch of things off my top ten list of things to do so I don't have any regrets.Trying to be happy is tough I batttle it every day but you have to keep trying
if you need to talk my email is
[email protected] feel free to use it
take care
and I hope you will continue to update us
love mirage

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 Message 3 of 10 in Discussion 
From: MSN Nicknameannie570111Sent: 9/5/2007 10:23 PM

My dear dear Lady,,,,,  So sorry that we all are looking for the same answers that U r.  We are all fighting to keep our lives such as they are dear one.. I playing the  organ n typing n such too keep all that I have going.. I have  rsd in my right leg n foot.    I have been having injections since moving too Texas,, each week...  I have had it for 7 yrs. since accident..  I have had steriod injections,,,  and everything else  I thot. Drs in Ne n Colarado did not know what else to do... This dr has put me on what they are calling  {{{prolo therapy }}}} so far,,,, the skin n coloring n swelling is almost all back to normal.... Skin is not looked this good since having rsd ....  This dr is seen the  different stages that  rsd comes on me with at times...  I am also in physcial therapy twice a week still.  after the injections of  3 of them,,,, the skin starting going back to normal... amazing ,,, the drs.  had not done this one for me at all. swelling is what keeps my pain levels up... swelling now is almost down completely...  except I over did the other day ,,, opzzz,z,,  started going back up again....  Not any fun... let us know more  if you can please... Thanks alot..   Hope that u r enjoying almost pain free days... Thanks alot for input.  Annie


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 Message 4 of 10 in Discussion 
From: MSN Nicknameannie570111Sent: 9/5/2007 10:30 PM

My dear Dear  Lady,,,, Our  dear angel,,,, is certainly correct.  With rsd affecting different parts of our bodys ,,, will certainly affect all of us differentlly.. With out question just like the different treatments that we all go thru,,, affecting us all differently... Not any kind of fun for any of us... So please do not think that rsd is n will affect u like that at all.  And we cannot say when things are going too get worse neither... some meds.. can throw us  into remission n we can go on till it hits us again...  Some of us has other things  like cerabal palsey,,, and MS,,, to go along with ms... So we are all dealing with  issues that are not any kind of funn at all for us...   We welcome  your input.. We most certainly do...  Please know that we all know that rsd is going too affect us  ,,,, n will not be any kind of fun at all for us... we have too fight on... n keep what we can during all of this time... Huggss dear...   Welcome to the group... Annie


Reply
 Message 5 of 10 in Discussion 
From: MSN Nicknamekjk18706Sent: 9/9/2007 5:05 PM
Excellent active support group: http://health.groups.yahoo.com/group/RSD-CRPSofAmerica/

Reply
 Message 6 of 10 in Discussion 
From: MSN NicknameA_Normalee_TSent: 9/15/2007 5:46 AM
There are many different kinds of RSD.  When it is systemic or the kind that I believe you are referring to it is called Dysautonomia, a severe form of RSD, a nervous system disorder.  RSD causes swelling, severe pain and discoloration.  Dysautonomia a.k.a. full body RSD can also cause immune system repression and a rapid heart rate.  
 
There is no known cure for RSD.  Some people who have RSD eventually heal, but that often takes years and many never heal, having to live with the pain for the rest of their lives.
 
RSDSA is a really good website to visit so is American RSD Hope.  A friend of mine is a mentor there.  Both of those places have hoards and scoards of information available just for the asking.  They both have a lot of information to read right online.
 
Through another organization American Pain Association another friend of mine finally got treatment after almost 8 years of substandard care.  It takes a lot of reaching out to others and a lot of asking questions.  I am really sorry that your family is so non-supportive, sometimes the only family you have left with RSD is the family you find in the online support groups, and just like family some are closer than others.  Don't give up hope EVER -- the cure is on it's way -- each one of us has to stick together and pray that each of of us is together racing for the cure -- arm in arm -- hand in hand -- so the day the cure comes we can hang onto each other and the tears are no longer tears of pain but tears of joy and we will know that we are the winners and we did it together.
 
By the way, anyone that has seen any of my previous posts and noticed the horrible spelling in all of them and not this one!!!!!!!!!!  I am now fitted with voice recognition software on my computer and I LOVE IT!!!!!!!!!!!!
 
Bless all of you!
 
Normalee

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The number of members that recommended this message. 0 recommendations  Message 7 of 10 in Discussion 
Sent: 3/11/2008 5:50 AM
This message has been deleted due to termination of membership.

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 Message 8 of 10 in Discussion 
From: MSN Nicknameannie570111Sent: 3/11/2008 12:00 PM

Hi,,,,, so gladf that you posted this.... I sure know what you are talking about.  I know that the nutrition issues has helped me in alot of ways.. takes while for it to show thru.... We all have the time too wait n see. And also too see the results....  Worth all the effort. Worth it in every way!!!!!!!!!  Helping in depression n  weight n energy tho we do not have much energy left... What we can keep is worth the time.... Always searching for more... All the chemicals in our bodies from the meds are not doing our bodies much good in nutrition that is for real... Not at all.  But worth researching n knowing what n how we can help our bodies is worth each n every minute that we can put into it... Annie


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The number of members that recommended this message. 0 recommendations  Message 9 of 10 in Discussion 
Sent: 3/12/2008 4:24 AM
This message has been deleted due to termination of membership.

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 Message 10 of 10 in Discussion 
From: MSN Nicknameannie570111Sent: 3/12/2008 5:55 PM

Hi there,,,,, JUST meaning that  low energy is there period. At times with the antibotics n infection happening weaker n energy is lower... No think that I am getting weaker. JUST tired  period..... Nurse n I was going thru my diary and found that the past yr is been solid antibotics the past yr... That is not healthy. Not good at all.  I am doing well with the nutrition is going well... I should have been a diabetic long long time ago..... So far thank you LORD,,,,, sure do not want tooo deal with all that.  Period....... No way!!!!!!!  With diabetis in family and sci being incomplete n having 3 of them.. makes what drs call a walking time bomb!!!!!!!  Hard really hard too eat nutritious when tummy will not accept food...  Reason for all the weight loss. So what n how body is doing on energy.... Lousy... PERIOD!!!!!!!  Thanks any information that you have is awesome help. Totally...  I get alot of my information from www.craighospital.org..... Where I went thru surgery n rehab and  all...  Hoping that all is finding with low pain days n enjoying the spring weather popping in... Huggzz Annie


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