Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 02-26-2010, 02:02 PM #1
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Originally Posted by Feel the Burn View Post
The medical community just wore me down,,I was labeled somotaform,, and also one tag of having monetary motivations,, ya,, just what i want,, more money so I can sit in a chair barely able to move or walk,, God I am loath of the medical community,, I have met maybe three that were somewhat compassionate to my plight


Know your not alone! Sometimes when Doctors hear there is a Accident involved they think that there might be a Motive involved. Also what I have found sad but true, when you have a Complex Medical History as I have had by the Time I was in my Late 20's. Which in Part started in my late Teens when I was involved within a Car Accident. It was settled but I found my Doctors would Start treating me differently, when I noticed this attitude of listening but judging instead and then asking where the Lawsuit was at, which it was something that settled years before!

Please know your not alone! Pain is such as I know myself is hard to Explain at time, It sad But true its not like a Bleeding wound, with GUSHING SQUIRTING BLOOD that ER Staff comes RUNNING, in FACT I've been asked the First Question If my Pain was a RESULT of a Accident? WOW!!! Talk about GRRRRRRRRR~ I've been treated as thou I was their to Get Stronger Drugs as A Drug Seeker! When I had & Have plenty of Pain Meds!

What I have found is to Mention nothing more than the Symptoms, and PAINS! To Show the Doctor and tell him or Her where I'm having Pain! Rather than Stating my Anger to my Injury.

I've even had a Doctor who ignored me when I went to see him 3 Different times because of terrible Stating Nothing was wrong and if it was Insurance would not Pay! The Pain in my Thumb Joint was so Bad even my Husband asked why I didn't see the Doctor, sadly explained what I was told! This was 9 mos Later of time and such pain as I could not hold my Husbands Hand, who I was married to less one year, he took off work too go to go with me.

It took my Husband going with my 3 times before My Husband said Look this is his 3 Visit at time of 1st visit, Dr Stated, he would take X Ray, well second visit nothing, but finally 3 Visit the Doc took X Ray and Stated Ummmm your Thumb Joint is GONE, you'll need to go and See a Ortho Guy and You'll need Surgery!

Also its Important to find a Doctor you connect, who will Listen, rather Than Pass Judgement. Keep all your Doc's connected to your Main Doctor, informed about all going On's as this.

Is something I've Found Must be, as its a Major Plus that he or Her is Well Informed!

I've had Chronic Bone, Joints, Back, Fusions. Dislocation, RSDS, Broken Bones, Sjogren's and a Slew of Medical Problems!

I've also come to UNDERSTAND SAD BUT TRUE, Insurance Companies have Financial Strong Arm on what they ALLOW!

Sad, as before really not all that long ago if you had a Problem they would address it! Not like that today!~

Stay Strong! State the Facts and explain what your feeling!

ALSO FYI~ What I found Worked WONDERS for ME as I call IT MY MIRCLE DRUG! I was already on Neurontin which every time I tried to get off increased my Leg Pain which was 1st area where I had RSDS, anyways the Medication I was put on was Cymbalta! SAVED MY LIFE!

I was Having Chornic Burning Shoot Pain, from my Back! I was at the END of my Rope from Back Pain!

Cymbalta SAVED MY LIFE! ~ I know some have tried it and have not had any results ~ With me One Full Day On, I actually Smiled ~ 2 Day I laughed! Unbelievable how this helped, but I guess it works wonders on reducing Nerve Pain on Some! With me it saved my LIFE!

HTH to see your Not Alone and Hope some of this Info is Helpful!

Cyber Hugs and Know your Not alone.
Cindy C.
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Live each day as though its your last and always take time to stop and smell the ROSES!"
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Last edited by Jomar; 03-01-2010 at 02:35 PM. Reason: I copied from original post to here
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Old 02-26-2010, 10:46 PM #2
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cindy
where all is your RSd at ,,and how long have you had it and are you able to walk without crutches?/ Im glad the cymbaltra worked,,,what else are you taking,other than the neurotin , and does it really help??? bobber
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Old 03-01-2010, 02:04 PM #3
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cindy
where all is your RSd at ,,and how long have you had it and are you able to walk without crutches?/ Im glad the cymbaltra worked,,,what else are you taking,other than the neurotin , and does it really help??? bobber
Hello Bobber;

Well I 1st Developed RSDS in my R ankle, which they feel I had developed due to preexisting problem and that then Husband had just started a Job but not insurance. It was found to be in my 2-3 Stage and was realized, after my Ortho Surgeon taking of X-ray found a Bad Problem with the Condition of my Bone that was from my Foot Going up my leg. This happened they feel as a Results of the Delay in having my Leg Problem worked on and having surgery. This was in the Leg were I had to have my Ankle Fused. After 1 ½ years of Unrelenting Pain and the Inability to Put any weight on my R leg, but after my Doctor taking updated X-rays. He Noted that my Bone was as he put it turning into Mush Spots had developed and the Fusion was not taking. He was not aware of RSDS, as were not many Doctors in the Late 80’s. It just so happened that the Doctor he sent me to, happen to be a Teacher who was Aware of RSDS.

Contacted my Doctor and explained I was at a Tipping Point, and after trying some Nerve Blocks on my Foot OMG! I thought I was GOING TO JUMP OUT of my SKIN! The Pain was so OUTRAGOUS! Because of such I was referred to A Newly Formed Department within Our Hospital the Doctor was Very well Versed on Treating RSDS. And explained Just what damage was done and How he planned on getting me on the Way to help get me Healed.

I had to Go thru 6 Months 3 times weekly for Sympathetic Nerve Blocks, I thought GREAT! They think I’m feeling sorry for myself! As with Sympathetic Nervous System it was explained that I had no control over what It does but that it was my Body reaction. Here I thought they felt I was feeling Sorry for myself!

As to your question, I was on Crutches for 6 years. Also I was Just Starting to Get better as I was Told, and because of the Damage done to my Bone I slipped and Fell, I Broke my Leg, from the Tips of my Toes all up to my Knee Joint, including 3 weeks in the Hospital 3 surgeries, Blood Clot, then within one Month of being Home, it was realized I also Tore Ligaments within my Knee Joint. I was Concerned in my Bones Heeling But Since the Nerve Blocks where so Successful, I was Luck, as when my Ortho guy came to the Hospital I remember asking if my Broken Bones would Heal, at which he didn’t know. I was Lucky as it had. I have since broken my Foot many times and its healed. Also broke My Tib bone again and at which time it had healed.

As to your Question on my Medication I had been put on to help with my Leg. Back then and Still it had been Neurontin, and the Medication that made a Big Difference from being able to walk was Voltaren aka ~ Diclofenac which is a Anti Inflammatory Arthritis Drug ~** ~ its considered ~ Diclofenac is in a class of medications called NSAIDs. It works by stopping the body's production of a substance that causes pain, fever, and inflammation. At that time it was a Big difference it made with helping me being able to walk. I also was told to always told to inform Doctors of this Condition. Since this is a Situation I’m predisposed to.

Also I had this happen after having the Surgery to Put my Thumb Joint Back together. And it set in even thou they took some precaution to Avoid this from happening it still happened. I have had doctors who have told me they don’t believe that there is this Disorder, and that its just a Excuse for some they tend to have More Pain. Needless to say, I never seen that Doctor again!

Also After having been put On Cymbalta, I call the Miracle Drug I noticed that before when I would stub my Foot that was affected by my RSDS, before being on my Med of Cymbalta I would feel OMG for the 1st ½ the Pain OMG! It would feel like I broke my Foot! Well 1st thing I had noticed Different was the Medication and How it helped in regards to how I felt Pain With my RSDS.

In Short what Helped with my RSDS:

Sympathetic Nerve Blocks. To Area Affected.
Preformed by Knowledge Pain Clinic.

Including the Realization I needed to push Past the Pain.
Medications that helped:

Neurontin
Voltaren aka ~ Diclofenac
Cymbalta


I was very Lucky as not many knew about RSDS

I do still have pain in the affected Foot Ankle, But as I like to Say Hiccups in Life as I also Say {Stuff Happens!} A Nice way of Putting it!


HTH: Cindy C.


My Favorite QUOTE:
Live each Day as thou its Last and Always take time to Stop and Smell the Rose's!
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Old 03-01-2010, 10:29 PM #4
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Thank you Cindy for the info,
Im sorry to hear about all the boken bones,,One thing that helps for which RSD owners,cant do much of or feel up to doing is a weight training plan,that helps build bone density,I dont feel up to working out anymore,too much pain,but I pray that I can return to the gym,,I really enjoyed it when I was working out,,it also wards off osteoporosis[sp],,,,May the Lord be with you and your family,,,,,,,,,,bobber
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Old 03-02-2010, 02:00 AM #5
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Quote:
Originally Posted by bobber View Post
Thank you Cindy for the info,
Im sorry to hear about all the boken bones,,One thing that helps for which RSD owners,cant do much of or feel up to doing is a weight training plan,that helps build bone density,I dont feel up to working out anymore,too much pain,but I pray that I can return to the gym,,I really enjoyed it when I was working out,,it also wards off osteoporosis[sp],,,,May the Lord be with you and your family,,,,,,,,,,bobber
Hello Bobber;

Thank You but as I call it Shiltz Happens or better yet Bumps in the Road of Life. Better known as Life's little Detours. Or Hiccups in Life it happens as I had the Honor of meeting a wonderful person I'll call her my Guardian Angel as thing in Life happen, as we never know where lives Challenges will take us! I've gone thru a lot as some might say but as I've always have seen their seem to be others that I can say have had a Much tougher road then I.

For that I'm sorry to hear that you have not been able to enjoy the things you wish you could. When I was at my worst stage of RSDS I was in a Bad Marriage with a Young Son as well. I was not able to keep a Job down because every time I tried I broke another bone or dislocated another Joint.

You really need to work on getting your pain under control from what I understand the one thing I found it took years and of Course what has help relieve some of my Bad Leg Pain is the Nerve seemed to be at best then was that of the Voltaren. I was not able to walk with out it. And I'm never really asked if the Damage has or not reversed its self as I have not wanted to know.

I also have Continued to be Active as I could up until my back problems have kept me from even Driving at this point. Because of Spinal Fluid Leak which I was told at my last Doctors appointment may be permanent.

But before my Back problems became such I've considered myself a Professional Volunteer, which was within my Son School as Room Mother, Then when my Family was Helped by a Hospice Organization, which I think I was probably the One that was helped the Most and was so very Impressed by the Gentle Spirit that was so Kind in Helping Our Family with a Loss that was that of My Mother IN Law, I thought Gosh If I ever could give back. Well I looked into it and started getting involved with IN Patient and Out Patient Volunteer Work for Hospice, and had done that since 1996 up until the Past 2 Years. I've done my Best to try and Keep things Pushing forward, Not letting this Darn Albatross get the Best of Me!

Also I kept involved as a Volunteer within my Son School. When I was Very Bad and the 1st time I was separated from my Son's Dad, my son was in K-1. It was during that time that my RSDS was in Full Bloom! My Son is Now 23 years Old. I remember my Son as being 2 1/2 years old and Him having to ask him for help to get the Laundry Done.

Their are many as I'm sure I could say even with yourself. If I could say One Major thing is to find something you Love and Stick to it! What I work with is My Jewelry Crafts and that of Photography of Scenic Picture as living here in the Ozarks we have Beautiful Scenic Area throughOut the Ozarks. And with the Digital Age of Endless Photo..... I've been blessed to get some awesome Pic's

SO in short I've found it Best to Push forward and find the Proper thing to Occupy My time and have always tried to Focus on How to get past this Bump in the Road rather than Focus on whether it was permanent. I've been told to make sure I explain about having this History, as its important that it is that of I could have it much worst.

So as I call it as Bumps in the Road and that if could have been much Worse.

God Bless you and Know that its Important to know Everyone Deserves to Go forward with the Understanding we all can have crosses to live thru but should also be understood without having this Pain that know as we all do the Pain with that Of RSDS.


Gods Blessings to Us All!
Cyber Hugs to all that have beard the Cross of Such from RSDS.
Cindy C.
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Live each day as though its your last and always take time to stop and smell the ROSES!"
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Old 03-02-2010, 11:40 PM #6
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Quote:
Originally Posted by Cindy C View Post


Know your not alone! Sometimes when Doctors hear there is a Accident involved they think that there might be a Motive involved. Also what I have found sad but true, when you have a Complex Medical History as I have had by the Time I was in my Late 20's. Which in Part started in my late Teens when I was involved within a Car Accident. It was settled but I found my Doctors would Start treating me differently, when I noticed this attitude of listening but judging instead and then asking where the Lawsuit was at, which it was something that settled years before!

Please know your not alone! Pain is such as I know myself is hard to Explain at time, It sad But true its not like a Bleeding wound, with GUSHING SQUIRTING BLOOD that ER Staff comes RUNNING, in FACT I've been asked the First Question If my Pain was a RESULT of a Accident? WOW!!! Talk about GRRRRRRRRR~ I've been treated as thou I was their to Get Stronger Drugs as A Drug Seeker! When I had & Have plenty of Pain Meds!

What I have found is to Mention nothing more than the Symptoms, and PAINS! To Show the Doctor and tell him or Her where I'm having Pain! Rather than Stating my Anger to my Injury.

I've even had a Doctor who ignored me when I went to see him 3 Different times because of terrible Stating Nothing was wrong and if it was Insurance would not Pay! The Pain in my Thumb Joint was so Bad even my Husband asked why I didn't see the Doctor, sadly explained what I was told! This was 9 mos Later of time and such pain as I could not hold my Husbands Hand, who I was married to less one year, he took off work too go to go with me.

It took my Husband going with my 3 times before My Husband said Look this is his 3 Visit at time of 1st visit, Dr Stated, he would take X Ray, well second visit nothing, but finally 3 Visit the Doc took X Ray and Stated Ummmm your Thumb Joint is GONE, you'll need to go and See a Ortho Guy and You'll need Surgery!

Also its Important to find a Doctor you connect, who will Listen, rather Than Pass Judgement. Keep all your Doc's connected to your Main Doctor, informed about all going On's as this.

Is something I've Found Must be, as its a Major Plus that he or Her is Well Informed!

I've had Chronic Bone, Joints, Back, Fusions. Dislocation, RSDS, Broken Bones, Sjogren's and a Slew of Medical Problems!

I've also come to UNDERSTAND SAD BUT TRUE, Insurance Companies have Financial Strong Arm on what they ALLOW!

Sad, as before really not all that long ago if you had a Problem they would address it! Not like that today!~

Stay Strong! State the Facts and explain what your feeling!

ALSO FYI~ What I found Worked WONDERS for ME as I call IT MY MIRCLE DRUG! I was already on Neurontin which every time I tried to get off increased my Leg Pain which was 1st area where I had RSDS, anyways the Medication I was put on was Cymbalta! SAVED MY LIFE!

I was Having Chornic Burning Shoot Pain, from my Back! I was at the END of my Rope from Back Pain!

Cymbalta SAVED MY LIFE! ~ I know some have tried it and have not had any results ~ With me One Full Day On, I actually Smiled ~ 2 Day I laughed! Unbelievable how this helped, but I guess it works wonders on reducing Nerve Pain on Some! With me it saved my LIFE!

HTH to see your Not Alone and Hope some of this Info is Helpful!

Cyber Hugs and Know your Not alone.
Cindy C.
Welcome Cindy, I'm sorry you have been thru so much.. What a beautiful attitude you have. I'll treasure your wise words and attitude.
I'm sure you have taken some beautiful pictures. My mother was born in Deere, Arkansas I'm not sure the spelling is right.
I live in Arizona, 15 years RSD full body and internal. Have a wonderful Dr. -having good and bad days like most of us. We have one child also, a daughter-married. She was 15 when I got RSD following surgery, but not diagnosed for 4 years.
Thank you for sharing with us. One of your new friends, loretta with big soft hugs
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Old 03-03-2010, 08:10 PM #7
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Nice Post Cindy and ditto loretta
Im Glad That Gods grace has been given to you both to be able to focus on the silver lineing , Its so sad tho, with me being a God fearing man, to be so weak and scared and worry , {as cindy said} when her RSD is in full bloom{thats where im in muddy waters } and its not leveling off out of the agressive spread since contraction a little over a year ago,,I need to focus on good things and not monoriting the bad,,It will jsut increase the stress and get worse to my own demise,,,You both [as others here} are a breath of fresh air,,,thank you all for being role models of true strength in dignity,,,,
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Old 03-03-2010, 11:04 PM #8
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Nice Post Cindy and ditto loretta
Im Glad That Gods grace has been given to you both to be able to focus on the silver lineing , Its so sad tho, with me being a God fearing man, to be so weak and scared and worry , {as cindy said} when her RSD is in full bloom{thats where im in muddy waters } and its not leveling off out of the agressive spread since contraction a little over a year ago,,I need to focus on good things and not monoriting the bad,,It will jsut increase the stress and get worse to my own demise,,,You both [as others here} are a breath of fresh air,,,thank you all for being role models of true strength in dignity,,,,
I am personally honored to know each of you and have you as my friends!! Love, Kathy....
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