[looking4help]

Hi,
My wife has had rsd in her knees for about 5 years and over two years ago she injured her left index finger (blunt force injury) and that developed into rsd (classical signs, texture change in skin, finger sweating, burning pain, etc.). She cannot bend her left index finger and it is very sensitive and it prevents her from doing much with her left hand (and we are both guitar players, it is how we met, so the hand injury was especially difficult).

About a week ago she injured her right index finger. She was just getting ice cream out of a container with the spoon pushing against the right index finger and it is probably a small sprain that wouldn't have much effect on a person without any issues. However, she has had intermittent burning pain in the finger (not as serious as the pain in her left finger after the injury) and is having difficulty moving the finger. When she has asked some doctors about this they act like she is overreacting and not to worry, but that is easier said than done. Does anyone have some advice on what to do... especially to make sure this finger doesn't develop into rsd?

A final question is about sleep and water. She has a great deal of difficulty moving the rsd finger on her left hand, but she finds that when she first wakes up in the morning she can move it more easily for about 5 minutes and then that ability is gone? Does anyone know why this could happen? She is experiencing the same thing on her injured right finger, which is also part of what is worrying her that it could turn into rsd. She also finds it easier to move the finger (the right one) after it has been submerged in cold water, which was similar to how she was with her left finger for a while after the injury. Has anyone had any similar experiences? One doctor has suggested a digit block for the newly injured finger to prevent it from becoming rsd. Does this sound like a good idea? She doesn't want to do anything that could make it worse. Any advice would be greatly appreciated and my heart goes out to all of you dealing with rsd and all of you trying to help someone with this disease. Thank you for taking the time to read this!

[loretta]

Hi Looking for Help and Welcome,
I'm so sorry you and your wife are dealing with this too. You have some very good question and valid reasons for concern. I'll give my thoughts on your questions one at a time.
1)I also injured my left hand, actually the 4 fingers about 4-5 years after getting RSD following surgery, left breast surgery. I got frozen shoulder in left shoulder. Wasn't diagnosed with RSD, but right away was sent into physical therapy to get the use of my shoulder and arm. It took about 100 treatments and I decided to do massage therapy to speed things along ( insurance didn't pay for massage therapy) But felt it really helped. About 1/2 way thru therapy, they sent me to orthopedic surgeon who wanted to operate and break my shoulder. I said NO Thank YOU and at that time didn't know that would have been a huge disaster. Anyway, about a year later, the RSD moved to right shoulder-more therapy and massage. got use of arm and shoulder back. Then about a year later was water skiing and felt nerve pull in my left hand getting up out of water. Swelling , burning, frozen fingers like a board. New Doc, New State thought Rheumatoid Arthritis, didn't make sense, saw a ortho doc back in Oregon and diagnosed RSD, started therapy next day, tens unit, tests at hospital to confirm. Went back to Arizona, saw neuro, more tests, saw ortho hand doc, went into therapy, best thing I ever did. Had absolutely no use of fingers. couldn't cut my own food, or button a button, etc. besides getting movement back,they desensitized my finger. That means dailey running it thru different textures, which I also did at home. You get several different plastic bowls-fill them with cotton balls, coffee grounds, rice, unpopped popcorn, sand, etc. several times a day run your fingers thru the textures. It's difficult, but only I know of to desensitize. A small sponge squeeze ball will help you to get movement in your fingers gradually. Because of delay of treatment, I didn't get full use of fingers back, I can bend my left hand to about 4'0clock, which is good enough for typing , peeling potatoes, general house things. I did get shoulders back at least 95 degrees because of EARLY treatment. I don't know why, but RSD moved into my right hand, again therapy again and full use of right hand. Then One foot and then then the other foot, both legs, full body. A couple years ago, my toes in one foot started curling upwards off the floor, my Dr. said to dailey get in the pool and exercise my toes while swimming, squeezing them and after maybe 4 months they were touch the ground again. Swimming has been the very best thing for my hands and feet, it's kept me mobile. out of a wheelchair. The water needs to be 86 degrees or warmer. Cold water or ice is NOT good for us. I've also used the bath tub to work my feet and hands in warm water-not hot or cold.
2) Regarding the right finger- it sounds like she already has RSD in it. They say never to inject a needle into a RSD limb. There are preventive procedures for block treatment. I've never had blocks as it was 4-5 years before I was diagnosed with RSD. A person on this forum just had surgery on her RSD ankle and her surgeon called a RSD specialist at the Cleveland Clinic Dr. Swartzman, and he gave the Doc the Criteria for preventive measures. But p.t. by someone knowing what they are doing and not too aggressive is important to keep movement and desensitize.
3) Not sure what your question was about sleep and water, but most of us have sleep problems. RSD affects the LIMBIC part of the brain, that causes insomnia, depression, Water- many medications cause dry mouth. It's important to drink a lot of water because of the sweating =dehydration and protect our kidneys and liver from the meds.
4)Everything is easier to move in water. A warm bath with epson salt is very good for us. I swim and find it easy for me, but to take a shower and wash my hair, I almost pass out from exhaustion.
I really sorry about the guitar and how much joy that must have brought you both. Don't give up- I've had massage therapist work on my fingers and toes and am grateful I can use them. I've had this 13 years. I miss Tennis, water skiing and snow skiing, aerobics, hiking, so much sports I loved to do, but grateful for the years I had.
There is a good website with a lot of information www.rsdrx.com The Dr. is retired but still has good questions and answers on the puzzles section. This wonderful group of friends are like family, a wonderful source of comfort and information. I would suggest reading reading reading-go back to even some of the older questions. I've learned so much and am so grateful. Everyone on here is always willing to help when they can. We all are affected maybe a little differently, react to meds differently, always listen to your Dr. Get a new Dr. if the one you have isn't listening to you. I have a neurologist, psychiatrist, pharmacologist (1)Doc. The RSDSA organization is wonderful, they had their annual conference here in Scottsdale this year and I attended. The HBOT is working for some people, I'm trying that soon. My Dr. just build two clinics here, with one in each clinic. It gets the 100% oxygen to the tips of your toes and fingers. We all have problems with circulation and inflammation. RSD is an autonomic disorder, that's why we have issues with sweating, blood pressure, burning up and being ice cold. It affects the
involuntary organs in our body, like the heart, lungs,bladder, kidneys,etc. Take precautions before dental work, as it can go internal.
Thank you for your kind words at the end of your message. Again welcome to Neurotalk and hope you can find encouragement and answers to your questions. Your friend, loretta

[daniella]

Hi. I am sorry about your wife and it is very nice of you to be so helpful to her by looking for answers. I am sorry if I repeat the other response I am little off today. I do know how hard it is when new pain develops or something happens like with your wife to not fear it turning into rsd. I will say for me yes my rsd has spread but I also had a very severe back issue and pelvic that was here for a long time but was not rsd. Does your wife have a good pain doctor who deals with rsd? I am not sure of that block but possibly meds or a treatment can help her overall with all these symptoms. As for waking up do you think it is cause she has rested it all night? See to me I could never tolerate cold water it would send me into a flare up for a days I need very warm but everyone is different. I am not sure about the water part either but I do feel she needs to follow up with someone cause if it is a spread then quick treatment is so much better but also if it is not then you want to check that as well.