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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • RSD and chronic pain syndrome

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    Old 09-02-2013, 10:04 AM   #31
    hurting24
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    Re: RSD and chronic pain syndrome

    Snowman2

    I have been researching for 6 years about this diseases. To be honest most doctors in the USA have little to know idea what it is let a loan what it is called.

    First let me clear one thing up before I go on. CRPS stands for ( Complex ) not Chronic Regional Pain Syndrome.

    Most doctors use RSD because that what they were told in med school when they spent a few days on this subject. The same goes for Causalgia as the old names. Most people do not understand that RSD is completely different than Causalgia because the doctors will tell you that the two are the same. jewlz67 has a post on here that gives everyone a better and clearer understanding about the 2 RSD, vs Causaligia. Where most folks get lost is on the new names. It took me 4 years to understand the difference between the 2. I was told by 4 doctors that I had RSD, but when I would research RSD it was nothing close to what I felt and how someone develops it. So I went to many forums looking for answers. What I found was to search the net and read everything I could fine from over seas mainly the UK. Because of the way their health care system works the drug co. along with the teaching hospitals are more open to looking into these uncommon diseases.

    Old name RSD. New name is CRPS I (1) What causes this is still a mystery as to how you get this. Most doctors think people that say they have this is a nut case. It is all in our head that there is nothing wrong us.

    Old name Causalgia. New name is CRPS II (2) This is caused from a nerve injury cut, compressed, twisted, ect.

    I now know that I have never had RSD. I have CRPS 2 and everything fhat is known about this is what I feel is spot on right.

    I I had surgery over 6 years ago to my right thumb to replace a joint only to find out 21 months after the surgery from a new doctor that I had a severed radial nerve.

    Let me just say that It was not all in my head as far as all the fiery pain I was having that the doctor that did the surgery would tell me over and over that it was all in my head there was nothing wrong with me. The doctor was trying to buy him time so that the 2 year SOL would pass so I could not sue him.

    I went from only having this in my right arm to 80 % of my body. This after having 2 surgeries to repair my nerve but It will not take and regrow this 11-12 inches from my wrist down into 3 fingers, and 1 thumb. After they cleaned and fixed up the 2 ends my nerve was 1.5 inch short. The graft did not work. Each time they go in and mess with my nerve the pain goes up and stays that way. All my meds I still have a 9+ during the day just sitting. At night it goes out of site. Anything they do like blocks give me permanent pain. I have been told by 5 doctors that a SCS will not help me because I cannot take any type of vibration sound, riding in a car, dog barking and more. A/C kills me so I live in the heat where it gets up to 90 + in my house. This is not fair to my wife but she accepts it without saying anything. I live in a chair 24/7 because I cannot lay down in a bed.

    Sorry for the long post it's my meds. I hope that I was of some help to some of you. Good luck to everyone and their treatments.

    Hurting 24

     
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    Old 09-05-2013, 03:28 AM   #32
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    Re: RSD and chronic pain syndrome

    Quote:
    Originally Posted by hurting24 View Post
    Snowman2

    I have been researching for 6 years about this diseases. To be honest most doctors in the USA have little to know idea what it is let a loan what it is called.

    First let me clear one thing up before I go on. CRPS stands for ( Complex ) not Chronic Regional Pain Syndrome.

    Most doctors use RSD because that what they were told in med school when they spent a few days on this subject. The same goes for Causalgia as the old names. Most people do not understand that RSD is completely different than Causalgia because the doctors will tell you that the two are the same. jewlz67 has a post on here that gives everyone a better and clearer understanding about the 2 RSD, vs Causaligia. Where most folks get lost is on the new names. It took me 4 years to understand the difference between the 2. I was told by 4 doctors that I had RSD, but when I would research RSD it was nothing close to what I felt and how someone develops it. So I went to many forums looking for answers. What I found was to search the net and read everything I could fine from over seas mainly the UK. Because of the way their health care system works the drug co. along with the teaching hospitals are more open to looking into these uncommon diseases.

    Old name RSD. New name is CRPS I (1) What causes this is still a mystery as to how you get this. Most doctors think people that say they have this is a nut case. It is all in our head that there is nothing wrong us.

    Old name Causalgia. New name is CRPS II (2) This is caused from a nerve injury cut, compressed, twisted, ect.

    I now know that I have never had RSD. I have CRPS 2 and everything fhat is known about this is what I feel is spot on right.

    I I had surgery over 6 years ago to my right thumb to replace a joint only to find out 21 months after the surgery from a new doctor that I had a severed radial nerve.

    Let me just say that It was not all in my head as far as all the fiery pain I was having that the doctor that did the surgery would tell me over and over that it was all in my head there was nothing wrong with me. The doctor was trying to buy him time so that the 2 year SOL would pass so I could not sue him.

    I went from only having this in my right arm to 80 % of my body. This after having 2 surgeries to repair my nerve but It will not take and regrow this 11-12 inches from my wrist down into 3 fingers, and 1 thumb. After they cleaned and fixed up the 2 ends my nerve was 1.5 inch short. The graft did not work. Each time they go in and mess with my nerve the pain goes up and stays that way. All my meds I still have a 9+ during the day just sitting. At night it goes out of site. Anything they do like blocks give me permanent pain. I have been told by 5 doctors that a SCS will not help me because I cannot take any type of vibration sound, riding in a car, dog barking and more. A/C kills me so I live in the heat where it gets up to 90 + in my house. This is not fair to my wife but she accepts it without saying anything. I live in a chair 24/7 because I cannot lay down in a bed.

    Sorry for the long post it's my meds. I hope that I was of some help to some of you. Good luck to everyone and their treatments.

    Hurting 24
    I want to say thank you for sharing your story and it wasn't to long I'm sure we could rite a book if I wasn't in so much pain I would say more but ill be in touch as this health board has been my savior and all that send messages makes me feel less alone as I spend my days fighting pain I somehow get hope from everyone to keep up the fight

     
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    Old 10-02-2013, 07:27 AM   #33
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    Re: RSD and chronic pain syndrome

    Quote:
    Originally Posted by kyparesia View Post
    I too have RSD. CRPS, or chronic regional pain syndrome, is the old name for RSD. They are one in the same. I use Neurontin 3 times a day and valium when it wakes me up EVERY night around 3 or 4 am. you might want to try an SSRI(anti depressant) also. I have had some success with stellate ganglion nerve blocks, my problem is in my arm and shoulder. they can block nerves all over if your pain is some where else!
    How have you been doing with handling the RSD CRPS just checking in to see snowman2

     
    Old 04-24-2015, 07:17 PM   #34
    Grandmalori
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    Re: RSD and chronic pain syndrome

    Hey I'm new to this, and I just put my grandson to bed... Im 53 and I'm grandma lori . Anyways, if u see my vent for a mn doctor on this board... That's me. :/. I'm 8 mos from falling and breaking my hand, 6 mos from being told I have RSD/crps.

    Do you know if most RSD people get better over time? I'm sorry that you all have this same headache... I just like to know what am I dealing with? The unknown can be unsettling. Take care ...

     
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