Re: Introducing Myself and J - Long!

[Guest guest]

Welcome , and J...

Glad that you found us... I am sure you'll find that everyone here will do what we can to help.

I've never experienced black outs from the pain, though at times I have wished it. It does not sound "normal" to me, and it is something that I would explore with the pain management Dr. Thank goodness he's finally seeing someone who will actually treat him as he needs to be.

Unfortunately, it is not just military Drs. that have no clue, there are so many Drs. around that do not even know what RSD is..

With a diagnosis, at least, he can get treatments that will help him deal with the pain.

As for spreading, that is one of those things that varies upon the individual.

Please let your husband know that although he may need a wheelchair or something NOW, that does not mean it is for life. We've had numerous members go into remission, or rehab themselves to where they are walking again, after years on crutches or in wheelchairs. Hope and a positive attitude are so important in dealing with this. Hard to have most times... but a good psychologist can help with that.

Hope to get to know you better!

Hugs,

Jo

[Guest guest]

I'm sorry for going on so long, but as everyone knows, this is not aneasy disorder to deal with - physically and emotionally. I think thehardest thing for me is that I feel helpless in helping him. It's sohard to see someone you love in so much pain and not being able to doanything to help them. I do what I can, but he's the type of personthat tends to overexert himself and tries to do more than he should. Anyhow, I just wanted to introduce myself and let everyone know ourstory. I look forward to getting to know everyone, and I wisheveryone a "good" day (as we refer to it when the pain isn't worsethan normal). Take care :-)

Welcome ,

I am sorry that it is this monster that brought you hear. I don't think there is anyone in this group that has been thought of as a pain pill junkie, that it is all in your head, or my personal favorite you need to quit dwelling on the pain.

I don't really have any advice except that I think it is a good thing to wake him up from a black out, is there no ER type place on the base?

Anyway, I hope your husband gets some answers today I will keep him in my prayers.

Lin

[Guest guest]

Welcome and J,

I have found everyone very supportive and informative in this group so I hope you can find out some answers to your questions and advice that will lead you on the right track to recovery. I was dx about 3 months ago...and am less knowledgable about RSD then some of the people who have lived with it for years. The thing that concerns me moth is J's blacking out..I would definetly mention it to a dr as soon as possible. I am glad that he is now with a dr who knows about RSD and is a pain management dr. good luck and a warm welcome...Ginny__________________________________________________

[Guest guest]

- Welcome. I'm sorry for what you and your husband are having to endure. Re the blackouts, I believe it can happen with severe pain. I know that I have vomited from pain and on a rare occasion come close to passing out. Be sure to have him tell his doc.

There's a huge difference of opinions between docs around RSD. Some believe in the "stages," some don't. ly, I don't think the stage theory matters as much (it sure doesn't change anything) as making sure that he is getting good aggressive treatment. There are some good websites out ther with a wealth of info.....you'll find that some of it is conflicting and some of it is wholly inaccurate. If you see something written A LOT then chances are it's probably true . i'm glad that they've started him on blocks and hope that they've got him set up with medications too. Feel free to ask questions. Many of us have had this for a looooooong time and have been through the mill and back. We're here for you. Barbara wrote:

Hi everyone,I just joined this group because I was looking for a support group tobecome involved in. My husband, J, has been diagnosed with RSD. Hehas been suffering with RSD since February 2004 but was only finallydiagnosed about a week ago. The pain started in his right knee,spread up through his entire leg (and occasionally his right hip),spread into his forearms, wrists and hands last week, and as of lastnight, it spread into his left leg from the knee down through histoes. He has also been experiencing blackouts from the pain. Lastnight when he was *trying* to go to sleep (I say trying because sleepis often hard for him to come by), he started experiencing extremepain in his left leg. He blacked out about 8 times in less than twohours - each time he would be laboring and suffering in pain and thenall of the sudden black out,

only to joly awake anywhere from 2-5minutes later. He first started blacking out about 2.5 weeks ago, andthe blackouts have ranged from 2-15 minutes in general.The situation that he developed RSD by is pretty messed up. He isactive duty Air Force, and in May 2003 he injured his right knee. Itwasn't until January 2004 that they performed a surgery to repair hismeniscus and remove tons of scar tissue. Less than a month later, hewas forced to do a Physical Fitness test (push ups, sits ups, running)and 2 push-ups in, his knee gave out on him. At the time, he had beenon a medical profile restricting him from testing which had justexpired. Since it was expired, he was threatening on being written upif he didn't do the testing. After the event occured, we found outthat there is a rule that says even when a profile expires, it isstill valid for another 6 weeks - thus, he should never have beenforced to do it. The worst part was, it

was a Practice Test anddidn't count for anything, yet none of his supervisors were willing tostand up for him. As a result, he started experiencing pain worsethan before his surgery and it has progressed since then. In theperiod of time between his reinjury and his diagnosis, he experienceda plethora of Military Docs who treated him like a pain pill junkiebecause none of their "tests" showed any major physical problem thatthey could see. About a month and a half ago, his surgeon begantossing around the possibility of RSD, but it took them 42 days toapprove his referral to see an outside doctor for a Pain Managementdoctor.Now that he's seeing a Pain Management doctor, things are starting tolook up...to a degree. He is being scheduled for Sympathetic Blocks,electrical stimulation Physical Therapy, and knee injections of ananti-inflammatory. My fear is that with the pain spreading at therate it has been in the past month,

it has progressed too far for theblocks to be effective.I have a few questions for anyone willing to help. Does anyone knowwhat stages are involved when it starts spreading that far? Hasanyone (or their loved ones) started experiencing black outs? Is thisnormal and what should I be concerned about? Should I be allowing himto black out or should I be trying to wake him back up? J has an appointment with a military doctor today as a result of thepain spreading last night. It's excruciating for him to walk now, andthey're trying to figure out if he can even work at all. I'm justconcerned about his mobility...he has been using a cane, but with thepain in both legs now, he might need a wheelchair. However, with thepain in his arms and hands, he can't be pushing himself in awheelchair, nor can he use crutches. He is a very proud person, andI'm afraid that he might need an electic wheelchair but he won't allowthat to

happen. I'm sorry for going on so long, but as everyone knows, this is not aneasy disorder to deal with - physically and emotionally. I think thehardest thing for me is that I feel helpless in helping him. It's sohard to see someone you love in so much pain and not being able to doanything to help them. I do what I can, but he's the type of personthat tends to overexert himself and tries to do more than he should. Anyhow, I just wanted to introduce myself and let everyone know ourstory. I look forward to getting to know everyone, and I wisheveryone a "good" day (as we refer to it when the pain isn't worsethan normal). Take care :-)

[Guest guest]

Welcome & J, I think you will enjoy this group and find it very helpful for both of you. We all have something in common here. The group is wonderful and understanding when others are not. Many friendships have been developed online and even some members have had the opportunity to meet each other. We are from everywhere. I live in Monroe, Louisiana and I am 48 years old (Dec. I will be 49) and I have RSD but I know how I have seen it affect my married daughter and mother. I live alone with 2 golden retrievers so this group is my only rel support system. Sometimes family and friends mean well but do not understand. Feel free to contact me here at the group site or my personal email address:ducotedm@... Good Luck and hang in there with our husbsand. THere are other spouses on line. Welcome again to this wonderful group.

Love ya,

DebDog

wrote: Hi everyone,I just joined this group because I was looking for a support group tobecome involved in. My husband, J, has been diagnosed with RSD. Hehas been suffering with RSD since February 2004 but was only finallydiagnosed about a week ago. The pain started in his right knee,spread up through his entire leg (and occasionally his right hip),spread into his forearms, wrists and hands last week, and as of lastnight, it spread into his left leg from the knee down through histoes. He has also been experiencing blackouts from the pain. Lastnight when he was *trying* to go to sleep (I say trying because sleepis often hard for him to come by), he started experiencing extremepain in his left leg. He blacked out about 8 times in less than twohours - each time he would be laboring and suffering in pain and thenall of the sudden black out,

only to joly awake anywhere from 2-5minutes later. He first started blacking out about 2.5 weeks ago, andthe blackouts have ranged from 2-15 minutes in general.The situation that he developed RSD by is pretty messed up. He isactive duty Air Force, and in May 2003 he injured his right knee. Itwasn't until January 2004 that they performed a surgery to repair hismeniscus and remove tons of scar tissue. Less than a month later, hewas forced to do a Physical Fitness test (push ups, sits ups, running)and 2 push-ups in, his knee gave out on him. At the time, he had beenon a medical profile restricting him from testing which had justexpired. Since it was expired, he was threatening on being written upif he didn't do the testing. After the event occured, we found outthat there is a rule that says even when a profile expires, it isstill valid for another 6 weeks - thus, he should never have beenforced to do it. The worst part was, it

was a Practice Test anddidn't count for anything, yet none of his supervisors were willing tostand up for him. As a result, he started experiencing pain worsethan before his surgery and it has progressed since then. In theperiod of time between his reinjury and his diagnosis, he experienceda plethora of Military Docs who treated him like a pain pill junkiebecause none of their "tests" showed any major physical problem thatthey could see. About a month and a half ago, his surgeon begantossing around the possibility of RSD, but it took them 42 days toapprove his referral to see an outside doctor for a Pain Managementdoctor.Now that he's seeing a Pain Management doctor, things are starting tolook up...to a degree. He is being scheduled for Sympathetic Blocks,electrical stimulation Physical Therapy, and knee injections of ananti-inflammatory. My fear is that with the pain spreading at therate it has been in the past month,

it has progressed too far for theblocks to be effective.I have a few questions for anyone willing to help. Does anyone knowwhat stages are involved when it starts spreading that far? Hasanyone (or their loved ones) started experiencing black outs? Is thisnormal and what should I be concerned about? Should I be allowing himto black out or should I be trying to wake him back up? J has an appointment with a military doctor today as a result of thepain spreading last night. It's excruciating for him to walk now, andthey're trying to figure out if he can even work at all. I'm justconcerned about his mobility...he has been using a cane, but with thepain in both legs now, he might need a wheelchair. However, with thepain in his arms and hands, he can't be pushing himself in awheelchair, nor can he use crutches. He is a very proud person, andI'm afraid that he might need an electic wheelchair but he won't allowthat to

happen. I'm sorry for going on so long, but as everyone knows, this is not aneasy disorder to deal with - physically and emotionally. I think thehardest thing for me is that I feel helpless in helping him. It's sohard to see someone you love in so much pain and not being able to doanything to help them. I do what I can, but he's the type of personthat tends to overexert himself and tries to do more than he should. Anyhow, I just wanted to introduce myself and let everyone know ourstory. I look forward to getting to know everyone, and I wisheveryone a "good" day (as we refer to it when the pain isn't worsethan normal). Take care :-)