I am new to this forum. I recently had a total shoulder replacement and after the surgery I developed RSD on three of my fingers and have 25% nerve and muscle damage of the medial nerve. It is now 5 months and I have been on Lyrica and Percocet for the pain. The pain is not as bad as the extreme swelling of my fingers and I can not bend my pointer; my middle and thumb and swollen also but not as bad. I am so frustrated with this condition and don't know where else to turn. I am told to "Deal with the situation" which I cannot accept. I am going for hand therapy where they massage my fingers with a cream called Traumeel to help with the pain and swelling. I went for accupuncture for a month but that did not help. I am now going to a Homeopathic and taking ARNICA 10M for the pain and swelling which I know helps, but people say I am crazy for going. I feel like I am going crazy and hope someone has some information as I do not wish this on anyone. To hear there is no cure is not in my vocabulary. Does anyone know of a similar situation to mine.

I am so sorry that you have to deal with this...it is not an easy thing. I can tell you that with the right mind set you can accomplish miracles. You sound like a fighter and that is a very good thing. The reality is that you need to "deal with the situation" but that doesn't mean that you ever stop fighting for something better. Learn to live your life and still enjoy life right now...but keep working towards your goal of getting better.

I've recently been working on changing my diet to help with swelling and stuff. I don't know whether it's working or not yet...but it certainly can't hurt, right? There are lots of things you can try besides meds and procedures to make your daily life better and help with the RSD. I find that heat helps so I've tried a variety of heating pads, space heaters, warm clothing, hot baths, etc to help with the pain and function. Physical therapy hurts but it helps so I keep pushing to do as much as possible. I have pain in my hands but I force myself to continue to do my stitching or work on puzzles...my physical therapist said those sorts of things would be good for me. I work really hard on my exercises every day throughout the day and that's a big help I think. It's a lot of trial and error, but worth the effort when you find something that helps at all.

Keep fighting for the things that you need to get better, keep moving, and don't give up.

Thanks, Everyone tells me I am strong but I do not really feel that way. I have changed my diet to Gluten Free and I feel better as far as my digestion. The Occupational Therapy does help, but very frustrating as I have no feeling in my three fingers. Your idea of heat sounds good as I tried moist which the pad goes in the microwave and is just the right temperature. One problem I havr is that my fingers are swollen by my nails which is painful and I can not even cut may nails. Since I am taking meds I can't feel my thumb or index finger I am not able to drive but have tried with my boyfriend with my as I don't trust my ability or if I start to feel I can not drive at least I am not alone.

My situation is not my right hand which is a good thing but doing the simpliest thing like cooking or washing my hair or cooking I am unable to do. I don't know if Homeopathy is a right route but I am trying every avenue.
I hope that things get better for you and would like feedback as I care and have empathy for your situation as well.

I am glad you do puzzles as that is very theraputic.

We will both keep fighting and stay strong as this disease is so unpredictable.

Thanks, Everyone tells me I am strong but I do not really feel that way. I have changed my diet to Gluten Free and I feel better as far as my digestion. The Occupational Therapy does help, but very frustrating as I have no feeling in my three fingers. Your idea of heat sounds good as I tried moist which the pad goes in the microwave and is just the right temperature. One problem I havr is that my fingers are swollen by my nails which is painful and I can not even cut may nails. Since I am taking meds I can't feel my thumb or index finger I am not able to drive but have tried with my boyfriend with my as I don't trust my ability or if I start to feel I can not drive at least I am not alone.

My situation is not my right hand which is a good thing but doing the simpliest thing like cooking or washing my hair or cooking I am unable to do. I don't know if Homeopathy is a right route but I am trying every avenue.
I hope that things get better for you and would like feedback as I care and have empathy for your situation as well.

I am glad you do puzzles as that is very theraputic.

We will both keep fighting and stay strong as this disease is so unpredictable.

Hi, It's not just the pain in my fingers, but the swelling by the nuckles and burning on the tips of them. Next week I am having a Nerve block done to hopefully alleviate the pain and swelling.

I have changed my diet and am taking supplements to try to help with the pain, however, it is a long process. i am unable to do projects with one hand. I am finished for the time being with occupational therapy as they are unable to work on my hand or massage it. I have been looking for support people in my area who at least know hwat i am going through as my friends don't understand just how intense this situation is.

I will try to keep fighting but sometimes it is so difficult.

I'm sorry things are not going well for you right now. I know it is the most difficult to keep fighting when things just seem to keep getting worse...the past year has just been horrible for me and I know well the temptation to just give up. But just the fact that you haven't given up says something.

I really hope the nerve block helps that that it gives you the chance to get more therapy so that you can keep moving your hand. No matter how small that movement is...you do need to try to keep doing it. And believe me...I KNOW how hard it is to do that. Just do what you can, when you can, and keep trying any little thing that might help. Many members on the forum have given me ideas of new things to try. Some work...some not so much...but every time I see something new I give it a try (well...the stuff I can do without a doctor's order anyway).

What other things have you tried so far? Someone here might be able to suggest something other that the stuff I have mentioned. RSD didn't start in my hands...so I am still learning about things to try with my hands too. It's crazy how many things we take for granted when all our limbs are working...devastating when we can't do them anymore.

There is hope out there...so just keep reminding yourself about the things that are important in life (family, friends, relationships, etc)...keep trying to find whatever good things you can in this world to smile and laugh at. That may be even more difficult than moving your fingers...but you need to remember to keep yourself focused on the good stuff so you know what you are fighting for.

I do hope the blocks are successful. Good luck!

Thank you for reading my posts.
Sometimes I wonder what is happening as every day is different. I hate the feeling of my fingers feeling like they have floating pebbles in them. I don't know how else to explain it except that they really hurt and I can't explain the exact feeling.

I have 2 nerve blocks, one which the burning stopped and that was 9 months ago and tthis past Feb another one which helped with other pain; now I am thinking I might have another one to stop this rocky or pebbly feeling in my fingers. Who knows as this is all a guessing game.

The Lyrica didn't seem to work and my pain management is weaning me off it. By the way I have a new pain management doctor who is more knowledgeable and has done other tests. And yes we do take things for granted as We need our thumbs and pointer fingers. What a bummer...so frustrating.

Still hoping...still have support...trying to keep busy but too many doctors I am going to...this is a fight I need to win and so do we all.

I hope you are doing better.

Best of luck and best wishes.

It is critical to find professionals and assemble a TEAM of them to help you. CRPS absolutely responds best to a multi-disciplinary approach.

I have CRPS in my foot. I use my podiatrist as my primary doctor for CRPS. Along with him, I use a chiropractor, physical therapist, pain management doctor and massage therapist.

And I would recommend you check out this link which has some excellent complementary techniques that may help you. Click on the link and scroll down to "healing practices A-Z".

http://www.takingcharge.csh.umn.edu/

This condition is so very unique. What works for one may or may NOT work for another.

Things can get better. I remember the day I came down with CRPS. September 11, 2008. It took me one year and a half a dozen doctors to diagnose it (not good as I was in a boot which made the CRPS spread), one year to figure out how best to treat it, one year to get it to settle down and I am now in my 4th year and it is better than it ever has been, although still a pain in the ***! (or foot for me). I'm off of percocet, but have a cocktail of other medications that control it. Gabapentin (generic for Neurontin), amitriptyline, trazodone for sleep, naproxen sodium for inflammation, ultram for breakthrough pain.

Good luck and be sure to keep us posted.

I can relate to you. I have been participating in a experimental program with some new non invasive technology that has already decreased my pain from a 9 to a 4. I can let you know when this goes to market. Swelling has reduced considerably and skin color has changed almost to skin color. I haven't been on nerve blocks or pain meds because this has really managed my pain levels. I went thru 5 mos. of hand therapy. I did hot springs hydrotherapy, some mirror therapy, and this experimental device has got my doctors excited and my pain specialist advised me to continue using it daily because she saw firsthand it really works. I can sleep thru the night now and do more movement with my fingers than before. My tissues are healing nicely and I am able to go out with my husband. I have a hard time turning my wrist over because of the elbow. My shoulder was frozen for six months and now is not. My digestive tract is getting better too. Things will heal and the body just takes time. Nerves take longer to heal than other things. I am taking msm, siberian ginsing, Vitamin C, 1000 mg 3xday. No drugs to hurt my liver, and I am feeling much better. have hope hang in there it will get better. From someone who knows.

flo

Flo, am so happy you have something that is helping you!!! What is the treatment you are doing? What kind of device is it? I got RSD following surgery-had frozen shoulder and a year of physical therapy to get range of motion. (not diagnosed for 5 years though) Then it moved into other shoulder and more physical therapy. How did you get frozen shoulder? Then moved to hand- frozen like a board-swollen-unable to use it at all. Dr. said I had arthritis- didn't seem right so went to a well known sports injury group across the country and the hand dr. said rsd in 1-2 minutes after seeing me. went for nuclear med testing and comfirmed it. started physical therapy next day . Came back home and saw neurologist and continued therapy with ortho doc. got partial use of hand back-well hand is like a claw, but is desensitized now and able to type, etc and swelling is down. So glad I did the therapy.
Please give us more details what is helping you. loretta