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-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   Our Stories & Introductions (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/10725-stories-introductions.html)

NJsteve 07-11-2009 02:26 PM

Hello, my name is Steve and I have RSD from an ankle sprain a few years ago. I suffered the injury on the job, but my employer claimed they werent aware of this, so I was denied WC. I haven't worked since 11/2006, had to sell my home, and have spent nearly all my life savings. Worse yet, I have to live with my parents at 37 years of age.

nancyinLA 07-11-2009 08:27 PM

Stories & Intros
 
Quote:

Originally Posted by Jo*mar (Post 57571)
Feel free to post your story, your RSD history, or an introduction to the forum members.

Welcome to the RSD/CRPS forum.

i fell at wk in 4/08 & broke left wrist. came out of cast w/RSD. i see a PM dr, psychologist, OT ea. wk, orthoped. - & neurologist, as i have epilepsy, too! the "mess" has crept up my arm 2 shoulder 2 left should. blade! i take 1500mg neurontin, celebrex (hurts 2 type), & all my seizure meds. just saw my foot dr today as i thought my plantar fasc. was acting up...... oh no, he thinks it's worse than that! burning pain & knife pain in foot - all of the left foot. i know my worker's comp is gonna die! i've been blessed, tho. i've been home over yr & receive my salary. my family is great - my husb. is an angel! i know God has a plan 4 me..... i try 2 think every day: if i get up & have a pulse, God has a purpose 4 me that day! hope all of u hang in there!

suz66 07-14-2009 07:54 AM

On a reply to one of my threads, SBOWLING said that they went to Dr Schwartzman in Philly who is a RSD specialist. Don't know if that helps you, but there ya go. Take are and keep your chin up; we're here for you.

Quote:

Originally Posted by septmystic (Post 58773)
Hi - One of the worst things I have found with RSD is the non-support of medical professionals. It took 6 years for me to be diagnosed, test after test, attitude after attitude and finally confirmation. It started in my left hand/arm and face then moved to my right arm/hand. Both hands are effected now so I don't type long. But still, I am on 3 waiting lists for Ketamine (Any-one know a doctor?), one doctor will see me for 15k but he is far away and my current doctors say there is nothing they can do for me. Pain meds that barely touch the surface, no support and still a lot of attitude. Talk with people, search for help and reach out that is all we can do! Unfortunately, I have found that we must find answers ourselves. Don't give up! I made up a saying long ago that I think all doctors should adhere to...."For a man/woman to truly see, they must look beyond their own ego":icon_wink:


SandyS 07-16-2009 10:35 PM

Hi, My daughter is seeing Dr. Kirkpatrick in Tampa Florida, I got an appointment right away within a week and Ketamine infusions with in two weeks. The cost was $7500.00. He is the RSD Research Institute. RSD Foundation. They are located on Busch Blvd. Tampa, Florida.



Good luck to you,









Quote:

Originally Posted by septmystic (Post 58773)
Hi - One of the worst things I have found with RSD is the non-support of medical professionals. It took 6 years for me to be diagnosed, test after test, attitude after attitude and finally confirmation. It started in my left hand/arm and face then moved to my right arm/hand. Both hands are effected now so I don't type long. But still, I am on 3 waiting lists for Ketamine (Any-one know a doctor?), one doctor will see me for 15k but he is far away and my current doctors say there is nothing they can do for me. Pain meds that barely touch the surface, no support and still a lot of attitude. Talk with people, search for help and reach out that is all we can do! Unfortunately, I have found that we must find answers ourselves. Don't give up! I made up a saying long ago that I think all doctors should adhere to...."For a man/woman to truly see, they must look beyond their own ego":icon_wink:


cindi1965 07-19-2009 01:47 PM

newbie to the forum
 
[FONT="Comic Sans MS"][/FONT
Hello,
I am new to the forum and am so happy that I have found it. I was diagnosed with RSD/CRPS a year ago after having a staph infection in my lower left leg. It is now spreading and I have been to doctor to doctor trying to get them to listen to me. I finally found a good pain management dr. and he doesn't take my insurance. There are very few doctors in my area that will honestly diagnose and treat this disorder. I don't know what to do.

I also was born with Cerebral Palsy that has effected both of my legs, so now I have a double whammy with the RSD. I just need someone who will listen and a place to sound off when I get down, because as a lot of sufferers know you can't always get the support of their families.

My family is suffering because I used to have 2 jobs and now I can barely take care of my house. My husband tries really hard to make it easier on me, but he misses the way I was before. He continues to be wonderful, but I would like to make friends on here who understand why I don't want certain material on my leg and arms, and why some days are good and some days are really bad.

Thanks for listening.:)

nancyinLA 07-21-2009 10:55 PM

Welcome!
 
Quote:

Originally Posted by cindi1965 (Post 539712)
[FONT="Comic Sans MS"][/FONT
Hello,
I am new to the forum and am so happy that I have found it. I was diagnosed with RSD/CRPS a year ago after having a staph infection in my lower left leg. It is now spreading and I have been to doctor to doctor trying to get them to listen to me. I finally found a good pain management dr. and he doesn't take my insurance. There are very few doctors in my area that will honestly diagnose and treat this disorder. I don't know what to do.

I also was born with Cerebral Palsy that has effected both of my legs, so now I have a double whammy with the RSD. I just need someone who will listen and a place to sound off when I get down, because as a lot of sufferers know you can't always get the support of their families.

My family is suffering because I used to have 2 jobs and now I can barely take care of my house. My husband tries really hard to make it easier on me, but he misses the way I was before. He continues to be wonderful, but I would like to make friends on here who understand why I don't want certain material on my leg and arms, and why some days are good and some days are really bad.

Thanks for listening.:)

welcome to the forum! i've had this horrible mess 4 a yr now. i know how u feel & understand the good days & bad days!! r u on meds? i take 1500mg of neurontin/day plus meds 4 epilepsy. it's good 2 have so many friends that understand...... b strong - take care! :grouphug:

hutch 07-26-2009 08:29 PM

rsd
 
Quote:

Originally Posted by Denise G (Post 57835)
I've commented some before. I'll fill in some details. First though, I want to say I'm so glad to find this site. I've had "the beast" for over 5 yrs but have never met anyone else with it. I'm hoping to get a chance to ask some of you more questions.

I was just leaving work on a Fri evening when a large room divider fell on me, trapping me under it. I'd seen it coming & "blocked it" from hitting my face with my right hand. Thought I'd broken several bones at 1st. Finally someone heard me yelling & pulled it off. My hand/wrist felt sprained, & my neck felt a little sprained. But within a couple of weeks (I kept working) I felt like monsters were attacking my right arm, hand, shoulder & neck.

I was sent to an Orthopedic Hand Specialist, who just shrugged when I showed him my swollen, deep blue hand & asked what it was. Even though my employer was furious that I never go a diagnosis, I kept going to this doctor (maybe I got hit in the head, too! :confused: ).

I had a torn ulnar nerve he said, & he put me in a splint & sent me for PT, too. The physical therapist kept saying something was "really wrong" with my shoulder, but the "hand specialist doc" just put off the MRI.

Two yrs later I got an MRI on my own & they found multiple torn ligaments, etc, etc. Fortunately I'd been seeing a Chiro who was GREAT with elbows & shoulders who kept it loose.

After the MRI diagnoses WC switched me to an Orhtopedic who was a "Shoulder Surgery" specialist. I told him I wanted to try injections before surgery & he went along with me (thank God!), because after 2 injections I could barely function due to the pain. I cried at work in the bathroom. That's when they told me I had RSD. Thankfully we didn't go straight for the surgery!

It took about another 8 months before WC would approve me for SGB's. But they worked fantastically when I finally did get them (total of 6).

My injury was in Aug 2001, and in 2002 I started having burning on the bottom of my feet. It slowly moved up my legs. They both now burn to just above my knees. I don't know if this is RSD or not. And, since WC only authorizes my doctors to look at my arms/hands (they've acknowledged it's moved into my left arm too, but not nearly as severe as right), the doctos just sort of change the subject when I ask what the pain is in my feet and legs.

Maybe someone has had a similar experience.

After I went to an Agreed Med Exam last Feb, not knowing 18 months of my medical records were not sent to him, he P&S'd me, so I have had to live on $720 a month "advances" from any settlement. I'm in dire financial straights! I've had to "live" on my credit card, now I can't afford the minimum & was on the phone arranging stuff with them today. But something always works out! I just thought my settlement would come through at least 6 months ago!

I live in a guest house that's just perfect, even though my family are all far, far, away. My landlords are my friends, & let me go without rent a month or two, even though they've had problems. But they just got a notice that their house is in foreclosure!! I feel so bad for them. So I'm trying to arrange to move....somewhere. I have about $75 to pay toward rent these days. So, I shouldn't have any problem, right? :D

If I didn't hurt so much & feel so tired, I'd dress up & go see if I could find a "Knight in Shining Armor"!! :)

I love to laugh, that's why I love reading some of the stuff on this site. You funny guys, KEEP IT UP PLEASE!

The way I try to look at it is that my life is kind of an adventure right now! I'm praying & waiting to see what opens up!

Take care all you precious people!

Denise

I am so sorry you are dealing with all that. I got rsd 2 yrs ago following surgery on my thumb. I could not believe how painful it was. I received nerve blocks for a few months and physical therapy. The blocks worked at first, then it stopped working. The pain doctor suggested a Vagus nerve stimulator but another doctor told me I was not a candidate for this. I continued physical therapy with great relief. It all but resolved. I had some residual stiffness, and could not quite close my right hand all the way---but was tolerable. I had surgery on my left hand in March, although I was very worried about rsd, I did fine. It is taking my left hand longer to recover then expected, for some reason. I have cervical dystonia and had my second treatment of botox on July 10th. During these injections he had doubled the botox amount because it wasn't enough last time. He puts most of my shots on my left side---(neck and upper back muscles). This last time he also gave me some shots in my right side of my neck. That evening My right hand started feeling like my rsd was coming back. It was better in a few days, but now hurts when I use it?? does it return? could it of been brought on by my botox shots?? I have it slightly in my left hand, and a get alot of burning in my feet, and a swollen feeling, which comes and goes??? Have you or anyone had a recurrence of symptoms like this?? I also have many other neuro problems, so I am not sure what is what. I have not seen a doctor about these new episodes and I am thinking that I should. I am just soooo tired of going to the doctors for another problem!?? If you or anyone has insight to any of this please let me know. I hope that your situation improves for you sooon. Take good care----hutch

maryam71 07-29-2009 07:32 PM

Quote:

Originally Posted by Sheri (Post 57573)
Just diagnosed 6 months ago, not much support or experience for the medical community in the area where I live.

i was diagnosed 2months ago i had surgery on my foot for servere tendinitis i agreed to have the surgery but i never thought it would turn out to be this way 3 days after surgery the doc said you have rsd and all he could say is he is sorry i really dont know when i will be able to wear a shoe again.my calf muscle has waisted away it very weak there are days when i cry myself to sleep at night i really dont know when i will be able to go back to work i really need to research more rsd from what i read on the internet there is no cure for rsd i dont believe i can live with this i hope and pray there is a cure :hug:

Jimking 07-30-2009 12:47 PM

Quote:

Originally Posted by maryam71 (Post 544552)
i was diagnosed 2months ago i had surgery on my foot for servere tendinitis i agreed to have the surgery but i never thought it would turn out to be this way 3 days after surgery the doc said you have rsd and all he could say is he is sorry i really dont know when i will be able to wear a shoe again.my calf muscle has waisted away it very weak there are days when i cry myself to sleep at night i really dont know when i will be able to go back to work i really need to research more rsd from what i read on the internet there is no cure for rsd i dont believe i can live with this i hope and pray there is a cure :hug:

Welcome maryam, very sorry about the diagnoses. When you do your research look closely at ketamine infusions. This may be the way for you to go since you are in the early stages in which this procedure has had good results. Get as many friends and family to help you and move as fast as you can manage.
ttp://rsdhealthcare.org/Institute_Announcement.html

nancyinLA 08-01-2009 06:54 PM

Quote:

Originally Posted by maryam71 (Post 544552)
i was diagnosed 2months ago i had surgery on my foot for servere tendinitis i agreed to have the surgery but i never thought it would turn out to be this way 3 days after surgery the doc said you have rsd and all he could say is he is sorry i really dont know when i will be able to wear a shoe again.my calf muscle has waisted away it very weak there are days when i cry myself to sleep at night i really dont know when i will be able to go back to work i really need to research more rsd from what i read on the internet there is no cure for rsd i dont believe i can live with this i hope and pray there is a cure :hug:

so sorry ur so miserable. u have joined a great support group! i've been diagn for 15 mos. now. i think there's control - maybe remission - & not complete cure! everyone has great advice...we've all "been there kinda thing"! my prayers r w/u. get a good dr., helpful meds & depend on God! :hug:


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