Originally Posted by aj822

Welcome Bobber,
So far my employer and Work Comp have been great and are helping in my recovery.

Originally Posted by daniella

Dr S is in Philli. I have been to Cleveland Clinic for my rsd and know someone else to that has been there though she has had better results. I have a friend who is on prednisone for peripheral neuropathy and has found it super helpful. I think it is used a lot for auto immune but could be wrong. I am sorry and am confused you have to wait 6 months for the apt? That is so long can you make an apt with someone else till that one or you may not even need it? I really feel asap treatment is key. I wish I could give you an answer to when it will settle or what will happen but I know most docs have no clue either cause we are all so different. You are in my thoughts and please hang in there and try to get through today.

Originally Posted by aj822

Welcome Bobber,

I am truly sorry you have to deal with this monster. I am discovering so many people out there suffering from CRPS (“RSD”). You will find this forum is awesome and the members really care. This group has helped me learn so much about CRPS, how others are being treated and what medicines are helping or hurting. I hop on several times a day just reading posts and checking out links thirsty for knowledge and comfort. This crazy condition has changed my life completely and has tossed me into a state of mental exhaustion. Finding a way to express myself, share thoughts and concerns with others has helped me a lot.

Here is my story… I hope it doesn’t bore you too much!
I was officially diagnosed with CRPS this past April so I am only a few months into the treatment plan. After exhausting research on RSD and the symptoms, I know now that I have actually had it for over a year (undiagnosed). Original injury to left leg/knee at work in 2006, had a bad fall then re-injured again (at work) in 2007 which required surgery. Leg was never the same and continued to hurt. I asked WC for a second opinion, found a great Ortho who recognized that I had major damage to my meniscus and had to perform two different surgeries to try and repair (still need one more but is out of the question until RSD calms down). We didn’t recognize the RSD symptoms early on because the pain I was in was typical of the injury and surgery. However, three months after my last surgery, he began to recognize the RSD symptoms (cold foot and molten color leg) and sent me to a Pain Specialist to begin an aggressive treatment plan. The cool part is my Ortho actually sought out a seminar to go to so he could learn more about CRPS; he wanted to be better educated and able to treat me properly. So off I went to Pain Specialists, who discovered that I have nerve damage too which has changed the game plan again!

I am currently taking the following medications and supplements;
Effexor XR 75mg - Anxiety
Lyrica 400mg - Burning pain
Talwin NX – Pain (Only when absolutely necessary)
Vitamin C – 1000mg
Omega 3 Supplement
Whole Vegetable based Multi Vitamin

I have had two nerve blocks so far with minor relief - both have lasted about 5/6 hours. I will have another one next week (Wed) which will be the last one unless it works longer. Then they are going to plan B (Not sure what that will be yet). This last nerve block set off my knee and I had to have cortisone injection in bursa area of knee to try and get it to calm down. Helped a lot!

I suffer from entire leg freezing cold, knee stays hot with fever. Depending on how much I try and walk (one crutch) or use my leg will depend on how bad it swells and acts out. Leg stays molten color and toes are purple and numb most of the time. When I am able to put pressure on leg it feels like I am walking on rocks. My hair doesn’t really grow on my leg and toe nails don’t grow. I suffer from varying sensations from electrical shocks, vibrating feeling, twitching and spasms. Leg is always burning. Lower back and hip are now acting up now. Vision and hearing have also been affected. Sleep is interrupted. I could go on and on…

I do therapy at home everyday – ride stationary bike for knee and do exercises for strengthening. I am waiting on my TENS machine and hopefully will start Aqua Therapy soon. I can’t drive because my vision is fuzzy and my coordination & reaction level has been affected. Work is out of the question due too many factors - So far my employer and Work Comp have been great and are helping in my recovery.

I am still struggling with coming to terms with this diagnosis and what it means for the future. I went from a workaholic (loved my job), Mama to everyone, volunteered for everything, and gardened like crazy (love the sun) to a 42 yr old lady who wakes up each morning wondering… What will I be able to handle doing today? How hard will the pain be today? Will I be able to walk today? Will my leg ever stop hurting? Will this ever go away? Each day brings a new set of challenges both physically and mentally. Questions… Doubts… and Fear!

I am so fortunate to have such great family support and love, good doctors that listen and care. I pray for strength and guidance and try not to question why me, because I know there is a reason I have been given this challenge. I just ask for healing and will keep my faith knowing that God is in control. I fight the urge to be bitter or angry for what I am experiencing, because it will only allow doubt to shadow my faith.

My heart goes out to all those who suffer from this horrible monster. I know that there are others that are in far more pain and discomfort than I am, and those who have lost far more than I have. I am determined to learn all I can about this condition and be an advocate for those who suffer from CRPS / RSD.

My advice to you is learn all you can about your injury and RSD so you can work with your doctors on a succesful recovery plan. Make sure you get a good support group around you so you will stay in a good place mentally. I hope you find relief and comfort soon and I wish you the best in your fight to overcome this monster. Feel free to PM anytime if I can be of any help or if you just need an ear to bend.

Originally Posted by daniella

Dr S is in Philli. I have been to Cleveland Clinic for my rsd and know someone else to that has been there though she has had better results. I have a friend who is on prednisone for peripheral neuropathy and has found it super helpful. I think it is used a lot for auto immune but could be wrong. I am sorry and am confused you have to wait 6 months for the apt? That is so long can you make an apt with someone else till that one or you may not even need it? I really feel asap treatment is key. I wish I could give you an answer to when it will settle or what will happen but I know most docs have no clue either cause we are all so different. You are in my thoughts and please hang in there and try to get through today.

Originally Posted by aj822

Welcome Bobber,

I am truly sorry you have to deal with this monster. I am discovering so many people out there suffering from CRPS (“RSD”). You will find this forum is awesome and the members really care. This group has helped me learn so much about CRPS, how others are being treated and what medicines are helping or hurting. I hop on several times a day just reading posts and checking out links thirsty for knowledge and comfort. This crazy condition has changed my life completely and has tossed me into a state of mental exhaustion. Finding a way to express myself, share thoughts and concerns with others has helped me a lot.

Here is my story… I hope it doesn’t bore you too much!
I was officially diagnosed with CRPS this past April so I am only a few months into the treatment plan. After exhausting research on RSD and the symptoms, I know now that I have actually had it for over a year (undiagnosed). Original injury to left leg/knee at work in 2006, had a bad fall then re-injured again (at work) in 2007 which required surgery. Leg was never the same and continued to hurt. I asked WC for a second opinion, found a great Ortho who recognized that I had major damage to my meniscus and had to perform two different surgeries to try and repair (still need one more but is out of the question until RSD calms down). We didn’t recognize the RSD symptoms early on because the pain I was in was typical of the injury and surgery. However, three months after my last surgery, he began to recognize the RSD symptoms (cold foot and molten color leg) and sent me to a Pain Specialist to begin an aggressive treatment plan. The cool part is my Ortho actually sought out a seminar to go to so he could learn more about CRPS; he wanted to be better educated and able to treat me properly. So off I went to Pain Specialists, who discovered that I have nerve damage too which has changed the game plan again!

I am currently taking the following medications and supplements;
Effexor XR 75mg - Anxiety
Lyrica 400mg - Burning pain
Talwin NX – Pain (Only when absolutely necessary)
Vitamin C – 1000mg
Omega 3 Supplement
Whole Vegetable based Multi Vitamin

I have had two nerve blocks so far with minor relief - both have lasted about 5/6 hours. I will have another one next week (Wed) which will be the last one unless it works longer. Then they are going to plan B (Not sure what that will be yet). This last nerve block set off my knee and I had to have cortisone injection in bursa area of knee to try and get it to calm down. Helped a lot!

I suffer from entire leg freezing cold, knee stays hot with fever. Depending on how much I try and walk (one crutch) or use my leg will depend on how bad it swells and acts out. Leg stays molten color and toes are purple and numb most of the time. When I am able to put pressure on leg it feels like I am walking on rocks. My hair doesn’t really grow on my leg and toe nails don’t grow. I suffer from varying sensations from electrical shocks, vibrating feeling, twitching and spasms. Leg is always burning. Lower back and hip are now acting up now. Vision and hearing have also been affected. Sleep is interrupted. I could go on and on…

I do therapy at home everyday – ride stationary bike for knee and do exercises for strengthening. I am waiting on my TENS machine and hopefully will start Aqua Therapy soon. I can’t drive because my vision is fuzzy and my coordination & reaction level has been affected. Work is out of the question due too many factors - So far my employer and Work Comp have been great and are helping in my recovery.

I am still struggling with coming to terms with this diagnosis and what it means for the future. I went from a workaholic (loved my job), Mama to everyone, volunteered for everything, and gardened like crazy (love the sun) to a 42 yr old lady who wakes up each morning wondering… What will I be able to handle doing today? How hard will the pain be today? Will I be able to walk today? Will my leg ever stop hurting? Will this ever go away? Each day brings a new set of challenges both physically and mentally. Questions… Doubts… and Fear!

I am so fortunate to have such great family support and love, good doctors that listen and care. I pray for strength and guidance and try not to question why me, because I know there is a reason I have been given this challenge. I just ask for healing and will keep my faith knowing that God is in control. I fight the urge to be bitter or angry for what I am experiencing, because it will only allow doubt to shadow my faith.

My heart goes out to all those who suffer from this horrible monster. I know that there are others that are in far more pain and discomfort than I am, and those who have lost far more than I have. I am determined to learn all I can about this condition and be an advocate for those who suffer from CRPS / RSD.

My advice to you is learn all you can about your injury and RSD so you can work with your doctors on a succesful recovery plan. Make sure you get a good support group around you so you will stay in a good place mentally. I hope you find relief and comfort soon and I wish you the best in your fight to overcome this monster. Feel free to PM anytime if I can be of any help or if you just need an ear to bend.

Originally Posted by loretta

Hi Bobber,
I'm so sorry you are facing RSD. Please know we are all pulling for you and hope you go into remission. This is a wonderful supportive group with a combination of lots of experience. We all are in different place and react differently to meds, treatment. I agree on getting a very good Dr. I have heard very good things about the Cleveland Clinic with Dr. Schwartzman and another RSD Dr. there. A good neurologist and pain management Dr. is imperative. I've had this 13 years, but I did go into remission twice. Mine came after two benign breast tumors removal. the next day swelling, stabbing pains, frozen shoulder. Sent to physical therapy and after that along with massage therapy for a year, my arm came back nearly full use-remission. Then after about a year-other shoulder froze up=more pt. massage therapy and remission. Another year or two. Was water skiing and felt nerve pull in left hand. discoloration, (circulation is affected) swelling, frozen fingers-pain, sensitive. wrong diagnosis. wrong meds, went to another Dr. in different state, had no idea all along it was rsd from original surgery. Anyway was diagnosed with RSD and got back into therapy and pt. and massage, meds , tens unit. and got partial use of hand. They delay caused crippling of left fingers. Then moved to other hand, arm, one foot, leg, other foot, leg, full body, and internal.
Please read as much as you can. on this forum, old questions, answers. Another forum that I learned so much from was www.rsdrx.com This Dr. is retired now,, but information and answers to what RSD is etc. is excellent.
A little bit on meds-neurotin and or Lyrica are anti-seizure ,meds that help with nerve pain and spasms, jerks, jolts, electric jolts. I was on it for several years and gradually went off. For me, it was the only thing that stopped the spasms, and the full body electric shocks. I no longer have those symptoms. I did gain weight as others have, but am in the process of losing it. I'm on cymbalta, which I like, it's a anti-depressant drug, but works for me with nerve pain. Antii-depressants are a common med for RSD, as they work well for nerve pain. RSD is a sympathetic nervous system disorder, The sym. n. s.
has 3 major fuctions;1. Control of vital signs, (blood pressure,pulse, and respiration), 2. Control of internal environment (temperature control and control of other function of internal environment. 3. Control of the immune system. Many of us have high blood pressure AND low blood pressure-the para sympathetic nervous system makes that go down. I monitor mine nearly dailey as I passed out from a severe drop 60/40 and hospitalized.
A lot of us have excess sweating. Some of us switch between burning up and then turning ice cold. The normal balanced person doesn't have this. I personally feel diet is extremely important. There was a post I believe Friday on anti-imflammatory diet.
RSD affects the Limbic System in your brain and that is why depression affects most of us. Short term memory loss, a grasping for word, forgetting something in the middle of a sentence is common. Insomnia another sympton
Bone loss is part of this. That is one of the tests to confirm RSD. My left hand had a lot of bone loss.
Anxiety is another symptom for many of us.
Many of us have our ways of coping with pain, Distractions thru music, comedy, movies, reading, stretching, exercise, swimming, meditation, prayer, scented candles, really anything calming, our pets, I personally like to call friends that are ill, write cards,
My neurologist is also a psychiatrist and pharmacologist and that has helped me tremendously. The losses that come with such a life altering disorder is something we don't get thru alone. As will any major loss, grief is a process and takes time to grasp and work thru. I personnally like to journal or write my feelings down in a notebook. This disorder is not easy to understand, even by our loved ones so patience with them is important. Some of us have printed out a simple explanation off the interent or an experience by someone and given it to others. The RSDSA has a list of support groups . You can give your zip code and they will give you closest group and phone contact number. We learn a lot from others who have this.
Every year the RSDSA has annual meeting that we can attend. I think it's only $10 or $20 to join and receive quarterly flyers. The annual meeting this year was in my hometown and I enjoyed it very much. They sell DVd's of the meeting. One day is for us and one day is for Drs.
You will have good days or better days than others. Cold weather fronts affect us. Most of us like heating pads. Ice is a no no. Hopefully you can get physical therapy soon and off the crutches. It's important to move our limbs, so they don't freeze up. Desensitation is very important too. I had that in therapy and also did that at home. That's putting our feet and hands, for example thru different textures. like soft cotton balls, sand, coffee grounds, rice, Stay with us and you'll get lot of support and good suggestions.
My husband and daughter son in law and others are supportive. I'm gratefull for that and what I can do. I haven't given up hope of being able to do more in the future. Swimming has been the best for me=kept me on my feet and out of wheelchair.
Take care, your friend, loretta