RSD Outreach awareness

Diamond's Story

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Diamond's Story

Post  byrd45 on Sat Nov 01, 2008 8:43 am

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From: DIAMOND4185 (Original Message) Sent: 11/17/2007 3:54 PM
Hi, I have enjoyed listening to everybody's messages because they remind that everyone is going through so much more than RSD. I fell outside onto my elbow last Feburary on my way to school. I had finally gotten the time in my life to return to college, but life had other plans for me. The pain was excruciating, I was literally blinded by the pain. When I got to the hospital they told me they couldn't see any breaks but they were not sure so they shoved my arm in a brace and sent me home telling me to try to get x-rays whrn the pain died down. I attempted to get x-rays and bone scans over and over for the next two months and they could see nothing broken but the pain was still there and with the arm brace my arm was slowly freezing up. In May I finally went to see a new doctor after a very horrible experiance at the original hospital. I went back and they shoved two percocet down my throat and immediatly rushed me to xray and tried to yank my arm straight. I came close to passing out in the room. Well the new doctor immediatly got me out of the brace and with weekly nerve blocks and lots of painkillers and other pills I have managed to almost straigthen my arm. Meanwhile during the summer I started to get so much pain through my legs which the doctors all told me it had nothing to do with the RSD in my arm. The pain was so bad that I could no longer go on the walks that I enjoyed going on with my kids. On some days it was so bad that walking down the hallway was difficult. Luckly my chiropracter was able to calm down most of the pain and I found it was helpful to use heating pads on my legs at home. During all this I have had to deal with my spouse who can be nice and helpful at times but the other times he's calling me a junkie and trying to take my morphine pills from me he even tried one of my fentalyn patches. It seems that whenever something pisses him off I must be at fault somehow. Also I have a hyperactive fourteen year old boy who loves to hit my ten year old son and the ten year old loves to antogonize him causing him to hit him more. I find myself often wishing for a place to be alone without the weight of their crazy little world on my shoulders.I find myself like I hear you guys saying taking solace in doing hobbies such as knitting and reading. I hope I will soon get my arm straight and off these pills and probably I would best be away from my spouse but it is just to hard to deal with everything with all this pain



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From: Gillian996 Sent: 11/17/2007 10:25 PM
HI AND WELCOME SALLY,

I'M GILLIAN AND I'VE HAD RSD FOR NEARLY 6 1/2 YRS AND I'M ALMOST FULL BODY NOW. AS IT'S IN BOTH SIDES OF MY LEFT AND RIGHT SHOULDERS, ARMS, HANDS, FINGERS, NECK , FACE - EYES & TEETH, AND BOTH SIDES OF MY LEFT AND RIGHT HIPS, LEGS, FEET AND TOES AND UPPER BACK!

BOTH OF MY HANDS CLOSE AT NIGHT NOW AND I PRY THEM OPEN IN THE MORNINGS AND JUST TRY AND KEEP THEM OPEN DURING THE DAY WHICH GETS SO HARD SOMETIMES NOW AS, THEY ARE SO PAINFUL ALL THE TIME! MY LEFT HAND ( I'M LEFT HANDED) HAS BEEN SWOLLEN FOR OVER 5 YRS NOW AND IT NEVER GOES DOWN, IT'S ABOUT 4 TO 5 TIMES THE SIZE OF MY OTHER HAND. BUT NOW THAT THE RSD HAS GONE INTO MY RIGHT HAND, THAT HAS STARTED TO BE SWOLLEN ALL THE TIME TOO! PLUS I HAVE DISC PROBLEMS IN MY LOWER BACK THAT I INHERITED FROM MY MOM! CAN'T WIN!!!!

I'VE HAD 6 NERVE BLOCKS IN MY THROAT WITHOUT ANY FREEZING AND THANKFULLY I'M ALLERGIC TO THEM NOW AS THEY NEVER WORKED FOR ME ANYWAY! I JUST TAKE VERY STRONG PAINKILLERS NOW AS THERE IS NOTHING THE DOCTORS CAN DO FOR ME!

KEEP TRYING ANYTHING SALLY BECAUSE YOU NEVER KNOW SINCE YOU HAVEN'T HAD IT TOO LONG, IT CAN ALWAYS GO INTO REMISSION FOR YOU. YOU JUST HAVE TO STAY POSITIVE!!! I KNOW IT'S HARD BUT WE ALL HAVE THIS FOR A REASON AND I BELIEVE WE ARE STRONGER BECAUSE OF IT! JUST KEEP THINKING AND BELIEVING THAT YOU WILL GO INTO REMISSION AND YOU CAN GO BACK TO COLLEGE AND GO FOR WALKS WITH YOUR KIDS AGAIN!

THIS IS A WONDERFUL GROUP AND YOU'VE COME TO THE RIGHT PLACE AS, WE ALL DO UNDERSTAND! I SEE YOU LIVE IN CANADA, WHERE EXACTLY??? I'M IN VICTORIA, B.C. BUT, WAS BORN IN ONTARIO!!

SORRY THAT HOSPITAL DID THAT TO YOU AND HOW AWFUL THAT YOU WORE THAT BRACE FOR SO LONG. CASTS AND BRACES ARE THE WORST FOR US WITH RSD!

YOU ARE LUCKY YOU CAN USE HEATING PADS. I CAN'T USE ANYTHING LIKE THAT AS, HEAT, HOT, WARM ,COOL AND COLD ALL BOTHER ME. I CAN'T EVEN RELAX IN A BATHTUB AS, I SWELL EVEN MORE WITH MY RSD! AND IT DOESN'T MATTER THE WEATHER EITHER AS I GET NO RELIEF ANYMORE!

TAKE CARE AND WELCOME AGAIN!

TUPPY (MY DOG) SENDS WOOFS & I SEND GENTLE HUGS !

GILLIAN AND TUPPY


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From: Liz3079 Sent: 11/18/2007 8:30 AM
Hi Sally

My name is Liz and Ive been with this site for quite a while. Its a great site with wonderful kind caring people. There were times I dont think I could have made it if it wasnt for this site.I am always happy to see new members cause with rsd you really need something like this.

Rsd is sure a strange disease isnt it.Im sorry that your husband treats you so bad. You need to print him out all kinds of stuff about rsd.But when I was first diagnosed I myself found it hard to believe I had something that everybody described to be so bad.But 3 years later I found out what everyone was talking about. Mine did go in remission for a very short period but as soon as the dr took me off all restrictions it came back full bloom then some.I still cannot lift very much as the pressure on my wrist causes me to almost throw up from pain.i cannot use my wrist for any kind of repetitive work although my workplace forced me or threatened to fire me if i didnt keep up.thank GOd the place closed. WHat a relief.

Here you can come anytime to visit and talk about your feelings or what you are going through and you have lots of people to offer kind words and encouragement.

I have a friend who has rsd and the dr she went to apparrantly dont know much about it cause she hasnt moved her wrist now for over 2 years. He told her not to so she says.SO hers is frozen in place. All the drs I went to told me I gotta move my wrist no matter how bad the pain was.My fingers and wrist was freezing up but I had to go through aggressive intense therapy for a long time. But that was 3 years ago.Now my wrist is freezing up ,im losing use of my arm,and my hand is shriveling up.I dont have all the swelling,sometimes my wrist swells if i fold clothes though.i do have the pain and the fire.

I guess I will go. I cant type no more.I hope you continue to come here .It will be a great help for you and like i said before everyone here is really really super nice.

love and gentle hugs liz


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From: byrd45 Sent: 11/21/2007 5:59 PM
Hi Diamond,
I am so glad you shared your story with us thank you. I know how rough life can get with RSD it really does get crazy doesn't it. That is good that you have found some hobbies to help you push past the pain and aggravation of your surroundings too. All that stress is so bad but unfortunately with life comes stress as we all seem to understand around here in way or another. I'm sorry your hubby is givng you a hard time like that and I hope with time he will come around and be supportive instead of stressing you out which only causes more problems for you with the RSD and pain levels. Everyone reacts to all this differently and unfortunately some people act the wrong way to be helpful to the person going through it. It is unfortunate but happens alot that the loved ones of the person with RSD will go in denial and that can be real hard for everyone. They can act really awful too at least that was my experience with my relatives that did that. It was horrible until they faced facts and started supporting me instead of fighting me. I feel for you and hope he will in time come around before destroying the relationship you have both built together. I always advise people to try to calmly make your feelings known if you feel you can. That is what helped me and it took some time but things are so much better now. Welcome and if you have any questions or just want to talk please don't hesitate to post there is always someone around.
Love,
Robyn
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