[aj822]

I am new to this forum so please forgive me if this is too long and boring.
I guess I just need a place to express what I have been through to others who have already made this journey. I need some way to let this out!

I was recently diagnosed with RSD after 2 1/2 year battle with a serious knee injury. I know now that RSD had set in after my first surgery, but my former doctor had no clue. He told me nothing wrong with me and that he couldn't do anything else for me. I set out for a second opinion knowing something was wrong! I found a great Ortho who had to perform two additional surgeries on my knee but he caught on quickly after my third surgery that I had full blown RSD, referring me to Pain Management Doctor. I went for my initial visit which was both psycological and medical exam with Pain Specialists. They confirmed 1) I am not crazy! 2) I have RSD with nerve damage. I have since had a sympathetic nerve block which appeared to have helped for about 5 hours. I am waiting to be scheduled for the actual block.

Left leg from hip to toes... cold cold cold, purplish, shiny and very little hair and nail growth. I have spasms just below my knee and feel like ants are crawling on me most of the time. I take Lyrica, Effexor and Talwin NX daily.

After researching this EVIL disease, I am amazed how uneducated the medical community is but how the public has no clue. This disease has changed my life completely and has tossed me into a state of mental exhaustion. I can't walk with my crutches, have to use a wheelchair and I never know if my meds will let me function or if my leg will keep me in bed.

Family is supportive but they really don’t understand what I am going through. I am only 43 and determined to beat this! I need a group that understands because they are suffering too!

I hope I can bring something to the forum too! Knowledge can be the best medicine!

[AintSoBad]

AJ
You found the right group!
I've had rsd since 83, and it's gone full body.
It is unfortunately, progressive.
Read all you can on this site, and PM to those of us who have posts who interest you.
Not all will reply, timely or at all, but most will.

I'm still a newby here myself. But, even as an "old timer" with this monster,
I'm still learning everyday.
You will too.
Then, you'll start helping!

Glad you found this great place!

Pete
Asb

[GalenaFaolan]

Welcome! Sucks it's because of RSD, but this board has lots of great people on it. I've had it for 6 years after a broken kneecap when I injured myself at work. Like Pete, I'm full body as well. I keep busy, research, just launched a new career in writing and find something to laugh about everyday.

Freel free to ask any and all questions you may have. Welcome again.

Hugs,

Karen

[Abbie]

Hi AJ and WELCOME to our little corner of the world!!!

I am sorry we had to meet you under such "sucky" circumstances but so glad that you found us!!!

There is a wealth of information here!!! Please don't hesitate to ask ANY question that you need!!!

Also... it may help if you have your family members read here or maybe print out some things for them to read... I finally got my family to understand a little after I left articles laying around their houses....

The people here are some of the nicest and most caring people I have ever had the pleasure of meeting!!!

I have had RSD for a little over 5 years with full body spread after the first year... I'm no expert and not a doctor but I will help in any way that I can.

I hope to see you around the forum!!!

gentle hug...
Abbie

[RSDLynnie]

I'm so sorry that you're having to deal with RSD. As you've experienced just getting a diagnosis can be difficult when you KNOW your pain is not normal and, of course, the delay in treatment is not a positive thing. I just found this forum a little while ago but feel like I've found a home...a place that is comforting, informative, caring. For the first time I don't feel like I'm fighting this thing alone. So welcome home. My RSD started with a tibia plateau fracture which didn't help the knee any. I bought a "bed bar" that lifts the bed linens the whole width of the bed keeping them off my leg and use a heating pad in the space to warm it up. Didn't know if you'd heard of this but it's been a godsend when the pain gets bad. Lynnie "ONE MOMENT CAN CHANGE EVERYTHING"

[Dew58]

You have support here. I am sorry that you have RSD;however, happy that you found the forum. As a newly diagnosed RSD patient, you will have many questions. We research RSD articles, and blog to each other in a manner which uplifts by positive reinforcement. This forum has many wonderful members to assist you, Nice to meet you,

[loretta]

Originally Posted by aj822

I am new to this forum so please forgive me if this is too long and boring.
I guess I just need a place to express what I have been through to others who have already made this journey. I need some way to let this out!

I was recently diagnosed with RSD after 2 1/2 year battle with a serious knee injury. I know now that RSD had set in after my first surgery, but my former doctor had no clue. He told me nothing wrong with me and that he couldn't do anything else for me. I set out for a second opinion knowing something was wrong! I found a great Ortho who had to perform two additional surgeries on my knee but he caught on quickly after my third surgery that I had full blown RSD, referring me to Pain Management Doctor. I went for my initial visit which was both psycological and medical exam with Pain Specialists. They confirmed 1) I am not crazy! 2) I have RSD with nerve damage. I have since had a sympathetic nerve block which appeared to have helped for about 5 hours. I am waiting to be scheduled for the actual block.

Left leg from hip to toes... cold cold cold, purplish, shiny and very little hair and nail growth. I have spasms just below my knee and feel like ants are crawling on me most of the time. I take Lyrica, Effexor and Talwin NX daily.

After researching this EVIL disease, I am amazed how uneducated the medical community is but how the public has no clue. This disease has changed my life completely and has tossed me into a state of mental exhaustion. I can't walk with my crutches, have to use a wheelchair and I never know if my meds will let me function or if my leg will keep me in bed.

Family is supportive but they really don’t understand what I am going through. I am only 43 and determined to beat this! I need a group that understands because they are suffering too!

I hope I can bring something to the forum too! Knowledge can be the best medicine!

Hi AJ822, and welcome to your new family of compassionate caring friends. Please don't ever feel what you have to say or ask in boring or too long. We all have times when we are in flares or whatever where we can't respond as we would like, then other times we can be pretty gabby in our replys!
I so sorry about your RSD, but at last, you are diagnosed and can now deal with it. It was 4 years for me to get diagnosed. It's full body and 13 years now. Thankfully, I did get physical therapy right after my surgery that caused the RSD and massage therapy. I do have partial paralysis in left hand, but thankfully other limbs mobile. I swim dailey and stretch to keep mobile. Went thru desensitizing, so that was worth all the torture during the therapy.
Have you had physical therapy? I do hope you are able to get out of the wheelchair.
I was on Neurotin and then Lyrica for several years. They stopped the jerks, electric jolts, spasms, etc. but caused weight gain. I slowly went off with my Drs. oversight and it's gone well. I'm surprised all the spasms didn't come back like I thought they would. I've had a couple during extreme stress of learning of the death of a friend. Cymbalta has helped me with the nerve pain and Vicodin for the pain.
Do you have problems sleeping? Several of us do. I'm hoping the swimming exercise will help me with that. I am sleeping better since I started swimming.
We live in Arizona, so the swimming has been helpful. GotRSD while living in Oregon. Alabama is a beautiful state- we used to love to go down to Destin.such a beautiful white sandy beach.
The RSDSA just had their annual meeting here in Arizona and I got to go to it. Was wonderful. More educated Drs. learning about this devastating disorder all the time. They said 50,000 people get this every year in the US. Hope more people get informed! Sooner getting diagnosed the better.
Legally, we have two years from when we get diagnosed to file for compensation, if that is an issue. I didn't, but I was pretty naive as to the consequences monetarily and healthwise, family suffering, our own emotional toll and expense of ongoing care.
Hope the best for you and again, welcome, and let us know how you are, please, we really do care for one another. Your friend,loretta

[dreambeliever128]

You have found a great place to learn and also teach what you learn.

As far as family, it is hard for them to understand RSDS. Most of us look normal, I do and from what I have seen of the RSDer's around me, most of them look normal.

They can't understand the extent of the pain I don't think. Even at my worst, my daughter didn't. Bill did because he lived with me. He use to say he wish the Drs. could do something for me. Our PCP did, it just took a long time.
It does seem to take awhile to get the RSD to a point to where we aren't screaming in pain with it.

Feel free to say whatever you need to here. You will find good support here. We all have something in common here.

Ada

[michelles]

Originally Posted by aj822

I am new to this forum so please forgive me if this is too long and boring.
I guess I just need a place to express what I have been through to others who have already made this journey. I need some way to let this out!

I was recently diagnosed with RSD after 2 1/2 year battle with a serious knee injury. I know now that RSD had set in after my first surgery, but my former doctor had no clue. He told me nothing wrong with me and that he couldn't do anything else for me. I set out for a second opinion knowing something was wrong! I found a great Ortho who had to perform two additional surgeries on my knee but he caught on quickly after my third surgery that I had full blown RSD, referring me to Pain Management Doctor. I went for my initial visit which was both psycological and medical exam with Pain Specialists. They confirmed 1) I am not crazy! 2) I have RSD with nerve damage. I have since had a sympathetic nerve block which appeared to have helped for about 5 hours. I am waiting to be scheduled for the actual block.

Left leg from hip to toes... cold cold cold, purplish, shiny and very little hair and nail growth. I have spasms just below my knee and feel like ants are crawling on me most of the time. I take Lyrica, Effexor and Talwin NX daily.

After researching this EVIL disease, I am amazed how uneducated the medical community is but how the public has no clue. This disease has changed my life completely and has tossed me into a state of mental exhaustion. I can't walk with my crutches, have to use a wheelchair and I never know if my meds will let me function or if my leg will keep me in bed.

Family is supportive but they really don’t understand what I am going through. I am only 43 and determined to beat this! I need a group that understands because they are suffering too!

I hope I can bring something to the forum too! Knowledge can be the best medicine!

welcome to the forum... when i found this place a couple months ago i felt lost tired and had so many questions that not even doctors could or even would answer.. i got the answers here. this place is very supportive, kind, and keeps you going when you just want to give up, i am so very sorry you have rsd.. i have it in my foot and leg and i understand how hard it is somedays just one step. BUT YOU HAVE TO USE IT OR YOU WILL LOSE IT... for me not using my foot my toes or ankle wont move they are frozen. i do the best i can with it as i am sure you do also. take care and again welcome hope to hear more from you,, michelle

[angelrsd]

im glad that you have found us!!! and so sorry that we have to meet this way. and it looks like we are far from each other either !!
i think that its hard for family to even phatom what we go thru every day and realize just what one hour as us is like. hang in there . !! as for me i have full body RSD for the last 11yrs . and like you blocks dont last that long on me the longest was 8yrs.

hope to talk soon

carrie