Reflex Sympathetic Dystrophy (RSD)

[Marissa]

Hello all. My name is Marissa, and my husband Jordan was recently diagnosed with RSD following an injury to his hand in May. He is currently very honorably serving in the United States Marine Corps, and this diagnosis could potentially mean the end of his career as a Marine, which would be absolutely devastating to both of us. He is doing physical therapy 4 days a week, and we are seeing improvement, but he is still in a substantial amount of pain. Is this a condition that can be reversed, or will he have to manage it for the rest of his life? I am so full of questions, but I won't bombard you with them all at once. I would like to be able to go to his physical therapy with him to get some answers, but being that I work 60 hours a week, that is nearly impossible. I just feel so lost and scared about what is in store for us if this condition doesn't start to turn around for him. If anyone can give me any answers it would be very greatly appreciated. Thank you and God Bless.

[reruho]

Welcome Marrisa,
The best advice I can give you is to learn as much as you can about this monster. The RSD doctor (www.rsdrx.com) is an excellent place to start. Learn the terminology and you find the doctors treat you differently. Have your husband keep a pain journal. Figure out what triggers pain and learn to avoid them. Air conditioning, stress and the weather are major triggers for me. I live in Florida and wear a sweater all the time to keep my arm warm and to keep the cold air off it.

If your husband's RSD/CRPS was diagnosed early (within 6 months of the symptoms starting) there is a very good chance of him going into remission. This condition takes a multi approach. Medication and PT is part of the plan. Also, relaxation techniques help reduce the stress, which can really increase your pain. Often a RSD sufferer goes to 5 or more doctors before getting a diagnosis.

My afflicted limb is left arm. I was in a car accident on Halloween, I had taken my son shopping and we were on our way home when this young mother pulled out of a school parking lot and turned left right into the middle of my grill. The airbag threw my arm against the window and I had three fractures in my wrist. I started having problems 3 weeks after the accident. It started with the burning pain and swelling. I was told to elevate my arm and take Benedryl. A surgeon I went to see for another problem gave it a name. His son had suffered from RSD in his foot. My RSD/CRPS has spread from my wrist to my arm and is spreading into my shoulder. Be aware it can spread, some doctors say it can't.

I am currently enrolled in my 2nd Pain Management (PM) clinic. I left my first doctor because he didn't talk to me. You need to trust your doctor and I should have trusted my first opinion. My 1st doctor did do three stellate ganglion nerve blocks, which brought me pain relief for several days each time and the returning pain was lower.

Also be aware that the pain can evolve and change over time and over the day. The pain can be constant and intermitant. His pain may be constant but at different levels during the day. I find the evenings are when my pain is the highest levels. There is a wide variety of pain meds too. I just started Lyrica. I am not sure if it is the right med for me. The side effects are almost too much for me. I will try and stick it out for 2-3 weeks to see if they subside.

I hope your husband has a PT/OT that has experience with RSD/CRPS. I had a PT undo my last nerve block with the treatment I got from him. told my doctor that I would not go back to him beI cause he inflicted a great deal of pain. The PT told me I didn't have RSD and he thought I had a neck/shoulder injury and that was what he was going to treat me for.

PT is very important to mantain muscle and blood flow. He will walk a fine line between too much and too little. I try to do do my PT 1-2 times a day. My goal is to work the major muscle groups in my arm, should and neck.

Do not let the ice his hand. Ice is his enemy and should be avoided. The RSD Doctor has a great explanation of why you do not use ice.

Be aware too that he may not all ways tell you about his pain. I tell my husband very little. You walk that fine line between toughing it out and looking like a wimp. My husband really doesn't like doctors, so there are times when he thinks I go to the doctor too much.

Please continue to ask questions. I have learned so much from fellow sufferers. It is so wonderful to have people who understand what you are going through and can share information. Face it, doctors do not have the time to educate you on the topic

My husband and I are both Navy vets. I did 6 years and he did 28 in the Submarine Service.
Reta

[dawnm]

I know it is very scary. I have been told the earlier the better. i was also told not to go to physical therapy because it will just cause more trauma. i have decided today to go on disability. I don't know how this will play out but my doctor thinks I am very early on and if I quit work and rest I will have a good out come. I am 40 years old with two children one 13 so I worry about being able to suport my family. I feel if I don't quit my job I will have life lasting problems. I am leaving it in Gods hands and I have taken a medical leave from my job.I paln on going back to school for now.
Take Care God Bless Dawn

[reruho]

Dawn
Who told you not to go to PT? That is bad advice. You don't work the muscle because it hurts and then you can't work the muscle because it is too weak. It starts a downward spiral into the lost of use of the limb.

You need to continue to work your affect limb to prevent the muscles from shriveling up. Also, continuing to work the muscles in the area will increase the blood flow to that area and thereby increasing healing. You must be careful not to over do it but you must work those muscles. I have to do PT daily or else I feel my pain level go up.

Have you worked on desensitizing the limb yet? That is hard but necessary to retrain those nerves. I developed a habit of stroking my arm that I still do today. I have to agree with my OT (occupational therapist) patient drive desensitation is the best way to go. You know how much you can stand and you can work on it several times a day.

I am not sure about disablity but I think it takes months to get. Do you have someone advising you on this? Good luck with school. Be careful, stress can aggrevate your RSD/CRPS.

Reta