It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • Wondering if RSD is spreading?

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 08-05-2007, 12:01 AM   #1
    nichole72
    Senior Member
    (female)
     
    nichole72's Avatar
     
    Join Date: Jan 2007
    Location: Las Vegas,NV,USA
    Posts: 139
    nichole72 HB User
    Wondering if RSD is spreading?

    Hello Everyone,
    I havent been on for a awhile since I had my ceverical SCS. My question is my upper right arm where my RSD originated , I had swelling,nevre pain,senseitivity and of course the massive pain. It was like the muscles and bone just hurt to the core. Now I'm finding that my left upper arm is hurting just as bad as my right. The muscles and the bone just hurt and I'm starting to get nevre pain there. Now I'm wondering if it has spread to my left. Does anyone have any stories similar to when their RSD spread? I dont see my pm doctor for a couple of months becuase right now I'm dealing with the doc that did my cerical scs, I'm still in the recovery stage. Any insight would be appreciated. I do hope everyone is doing the best that they can with this RSD hell.

    Thank you, Nichole

     
    Sponsors Lightbulb
       
    Old 08-05-2007, 06:00 AM   #2
    mixtinn
    Veteran
    (female)
     
    mixtinn's Avatar
     
    Join Date: May 2007
    Location: Warminster Pa
    Posts: 371
    mixtinn HB User
    Re: Wondering if RSD is spreading?

    Nichole,
    To me it sounds like its spreading. Is it the same type of pain?
    My RSD had spread from my neck to my right hand then my left to my feet.. Its now spreading to all my joints. When it first started it was just the swelling, burning pain... Now I have the deep bone, join pain that your discribing.. Since your not going to see your dr for a while.. I would put a phone call in at least and ask them their opinion..
    Good luck and let us know how you do..
    Michelle

     
    Old 08-05-2007, 11:00 AM   #3
    jaxobean
    Veteran
    (female)
     
    jaxobean's Avatar
     
    Join Date: Apr 2007
    Location: Massachusetts
    Posts: 351
    jaxobean HB User
    Re: Wondering if RSD is spreading?

    Nichole,
    I am so sorry. I got my scs and mine spread to my legs from my right arm. I was trying to get the info. out that I was told the stim. has been known to take the rsd from one nerve and pass it too another I have been told that from two docs. Who did not even know my story. I am trying to let people know of the possiblility and as we all know everyone is different. I know you are probably mad right now and need your space. I remember when I was going through it I was like I do not want to see anyone and you I will send you pics so you can see what's going on but right now Jaxobean needs my space...They understood exactly what I was trying to say and looked at the pics and when I was ready to talk about it I would contact them. The stims can make them spread that I am 100% convinced of the stim making it spread.It stayed in the right arm and elbow area for 10 years and boom I get the stim and it is in my leg- sorry that is not a coincidence...I wish you the best...Nikki

     
    Old 08-05-2007, 12:47 PM   #4
    nichole72
    Senior Member
    (female)
     
    nichole72's Avatar
     
    Join Date: Jan 2007
    Location: Las Vegas,NV,USA
    Posts: 139
    nichole72 HB User
    Re: Wondering if RSD is spreading?

    Hello Nikki & Michelle,

    Yes, the pain is deep into the muscle and it feels like its down to bone. My upper right arm right after the doc's hit my nevres, I could not use it at all, I couldnt lift it or anything. Now after the SCS I have noticed the joints are get sore and stiff. I'm having trouble lift my arm up. I can lift it up but its hard and very stiff when I try. I wonder why the doc's dont tell you that a SCS can cause your RSD to spread. I would think that would be very important info. I have noticed in my left arm in matter of weeks the pain has just intensified and came out of now where! Well thank you so much, I wish the best for you two.
    Nichole

     
    Old 08-05-2007, 11:45 PM   #5
    jaxobean
    Veteran
    (female)
     
    jaxobean's Avatar
     
    Join Date: Apr 2007
    Location: Massachusetts
    Posts: 351
    jaxobean HB User
    Re: Wondering if RSD is spreading?

    Nichole,
    I tried to get the message out about my spread and some guy named SoCal was shooting me down all over the place and I think it as Michelle that said I thought that any surgery or even an IV could cause it to spread. I was like I know but as stupid as it sounds I never even thought about it. I never did and I think they do not tell you because they do not know.
    My PM and neurosurgeon had never seen a stim. cause it to spread and never as bad or as quick as mine (believe me I am not bragging). I have been doing a lot of research and what I have learned Nichole is that all the stim does is take the rsd and move it from one place to another. It kind of zaps it to another area. I contacted a dr. in Vermont Dr. Vreeland. I told him a brief history about the arm-one stim. then to the legs-2nd stim and I stopped there and then what he told me after that made me bawl. (Not my intention to do to you, or anyone else).
    He said hun I do not mean to frighten you but you might start experiencing symptoms like infections, problems with vision, hearing, sex organs, allergies, hair loss, and went on and on. These have been things that have been going on with me since the 2nd implant. I have had a bladder infection that I cannot get rid of. I am allergic to things that I have eaten all of my life, I have awoken three times unable to breathe, one week after surgery I was covered with blisters ( one so big it was the size of a half dollar and filled w/blood, I keep getting lesions on my chest, back, face, and leg. I cannot hear, My eyesight changed for the first time in 10 years. The doctor was like you need to see a dermatologist and an allergist. We might also have to look into a possible infectious disease. I know very little about infectious diseases but I have had intercourse with my husband, shared drinks with everyone in my family, kissed my family would they not have had soemthing yet? So know what this doctor is saying and I tend to believe him is that it is rsd and it is starting to attack other systems in my body. He thinks it is in the bladder, could be in the sex organs? gall ballder since I told them they saw a blockage on a C-Scan. You call him up and he calls you back ( mine was within 24 hrs.) and dicusses what is happening. He takes your fresh blood, saliva, and urine, and analyzes it and tries to balance the systems. Only thing is is that he is homeopathic and it is $750.00 initally and he only will take the most extreme cases. This is why he talks to you first. He has been doing it for 30yrs. and there is info. that he has even helped people that Dr. Shwartman could not help and he is considered among on of the top rsd docs in the country so that has to say something. I hope this helps and I wish this info. got to you before so at least you would of known before going in-that was my goal anyway. I had to cancel Vegas to get the 2nd stim. implanted...
    Nichole Best of luck and I hope this helps...My prayers are with you!!!

     
    Old 08-06-2007, 03:54 AM   #6
    Sunnycal
    Veteran
    (female)
     
    Join Date: Sep 2004
    Location: California
    Posts: 368
    Sunnycal HB User
    Re: Wondering if RSD is spreading?

    Oh, Nikki, I am so sorry all this is happening to you. I can see why you have hesitated to post about it, with all the people getting their stims now. I hope this doctor can give you some answers. It really sucks to have it working for you to walk but with so many horrible side effects. You are in our prayers.
    Sunny

     
    Old 08-06-2007, 06:43 AM   #7
    mixtinn
    Veteran
    (female)
     
    mixtinn's Avatar
     
    Join Date: May 2007
    Location: Warminster Pa
    Posts: 371
    mixtinn HB User
    Re: Wondering if RSD is spreading?

    Just a quick question for all of you that had SCS.. Doesn't that affect you entire central nervous system? Its placed in our spinal column right? I am just curious.. I was just wondering if thats why some people have problems and others don't.. cause your dealing the nervous system.. I guess that just freaks me out some.. I don't think I would ever be able to get that.. Ive had alot foreign objects implanted in me do to an auto accident when I was 16.. My body has rejected every single one of them.. They decided to use my scar tissue etc. instead.. Is this what they mean by you can get infection? Your bodyhas rejected it?
    Michelle

     
    Old 08-06-2007, 03:30 PM   #8
    jaxobean
    Veteran
    (female)
     
    jaxobean's Avatar
     
    Join Date: Apr 2007
    Location: Massachusetts
    Posts: 351
    jaxobean HB User
    Re: Wondering if RSD is spreading?

    Sunny,
    Thank you for your kind words, I am terrified. None of my systems seem to be working right. I really think he is right because he told me to possibly expect. I did not say a thing that was going on. The last thing I said was the 2nd stim was helping me to walk.
    He was not trying to scare me he was doing what no other doctor has ever done and that is prepare me for the possibilities.
    I am sure not everyone has this I am sure there are plenty out there that the stim has helped and they have had no other spreading or problems.
    It is what it is I just wish I had a family who cared. They cause me more stress then the disease and I have had it for over 11 years. I mean I am sure I am a miserable person. I am terrified. My dad keeps telling me to think of other thinks when I occasionally complain and it is like I am in bed staring at one wall, not even four and I have lost all control. I feel hopeless and yet they want me to smile and not burden them when there is nothing else I can think of I just do not know what to do, I really don't. I pray noone has to go through this ever. It is so lonely and terrifing.
    I am sorry I do not mean to bring anyone down I just cannot vent anywhere else. I hope you all have a great night...Nikki

    Michelle,
    I do not know much about the infection but it sounds logical to me that the body would reject it...
    More things are coming out. I just dread the day when we see one of those mass recalls about the stims making your condition worse and a lawyer saying contact me now...I am starting to think that day might come...
    Nikki

     
    Old 08-06-2007, 06:34 PM   #9
    numbing hands
    Senior Member
    (female)
     
    numbing hands's Avatar
     
    Join Date: Jul 2007
    Location: redwood city, ca
    Posts: 173
    numbing hands HB User
    Re: Wondering if RSD is spreading?

    Hi Nikki,
    Who is this doctor that is helping you? Where is he located? Can he help out of state patients? How long have you seen him and has he helping you?
    Thank you for sharing this very important information!
    Take care!
    Anita

     
    Old 08-06-2007, 11:28 PM   #10
    jaxobean
    Veteran
    (female)
     
    jaxobean's Avatar
     
    Join Date: Apr 2007
    Location: Massachusetts
    Posts: 351
    jaxobean HB User
    Re: Wondering if RSD is spreading?

    Anita,
    The problem is he only excepts stage IV patients and he is in Vermont. His name is Dr. Vreeland and he is a chiropractic/neurological/kinetics-he is homeopathic and my cousin found him on-line. I called and left a message all is info is on the website but if you cannot find it I think we can post that I have it. I called whe the office was closed. They called mid-day the following day and he asked me for a history.( his secretary calls before and says he is going to call in about 1/2 an hour and is that good. Then she asked if I was in a wheelchair and told me it was $750.00 @ the time of visit w/no payment plan-which really sucks, but this guy knows what he is talking about and I will tell you why. So he call- really nice down to earth guy, talks lots of medical terms which I wish I wrote down so I could have looked up. SO I gave him a brief history and stopped at having the 2nd stim and that I could take steps whereas I could not before.
    He then tells me the problem with the stims is that it is now going to start spreading to another system? Where he described EVERY symptom I was having and I bega to cry, he also named more so I have a bright future for sure. I told him I was already having all of those things and he says that is the rsd spreading. I told him I was broke and asking him if I was going to be ok and if I was going to die.He says no hun I can help you, I said I have no money but I will do what I can, he switched me over to the secretary and gave me three appointment dates surrounding me going to Vermont for my sis-in-laws 30th b-day and said they would fit me in and gave me a definite appointment with the son who is only $350.00. I have a good feeling about him and for him to confirm what I have been trying to tell my doctors tore me apart it was bittersweet, and for him to go up front and tell his secretary to just get me here was so awesome. He helps the most complicated cases. My sis lives in Morgan Vermont and he is in ? I forget and the sec. was going to look it up and I said no I can do it no problem and she said thank you and was telling me she is used of telling people how to get there from California.
    You know when you have that feeling? I contacted that Eric Philips guy about Dr, Hooshmand and I got a bad feeling and look at them. They tried to accomadate me said they were handicap accessible so I would have no prob getting there. Oh I will share any info with you all for sure right now I feel useless and if I can save one person some crap I have been through or make it easier than at least I have a purpose right...Anything you need Anita...call him who know he might take you tell him your story if nothing else he can steer you in the right direction or something...Good Luck and Big Hugs Nikki

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    IS RSD Spreading in most CASES? Kyma4 Reflex Sympathetic Dystrophy (RSD) (CRPS) 7 03-06-2006 11:14 PM
    Acne Spreading While you Sleep! Accutane Dude Acne 4 06-21-2004 05:27 AM
    Chances of Spreading to Uninfected Partner veryworriedguy Herpes 11 04-19-2004 08:37 AM
    Surgery / flaring-up and spreading of RSD babydolltahiti Reflex Sympathetic Dystrophy (RSD) (CRPS) 11 08-18-2003 07:14 PM
    RSD pain & spreading caused by EMG babydolltahiti Reflex Sympathetic Dystrophy (RSD) (CRPS) 6 08-12-2003 12:23 PM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 11:50 PM.





    © 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!