RSD Caregivers and Supporters Group

Hello! I am anxious to speak with people who suffer from RSD! I had a minor tear in my hamstring on May 16th and after a month of physical therapy I ended up in the ER after my entire leg swelled, turned red and hot and had a weird rash. They thought I had a blood clot, but an observant orthopaedic surgeon questioned RSD and called in a specialist. 3 MRI's, numerous ultrasounds and 2 CAT scan's later to rule out anything else, they made the diagnosis. I went in today for a sympathetic nerve block and don't really know what it has done for me. My leg is swollen and bright red and my glut is beyond weak, and my hamstring is contracting and charlie horsing beyond crazy. Is this normal? What were some of your experiences?

Hi New2RSD,

I had two minor meniscal tears in my right knee, the knee locked,my knee was swollen, the muscle above my knee was a hard lump, the knee/leg was burning,stabbing pain and tingling and numb at times. I had discolouration and shiny mottled skin with an ice cold temperature. My foot was sensitive to any weight of a sheet or blanket on it. I had several severe charlie horses in my calf, my foot,toes and my leg would twitch uncontrollably. It took 7 months for me to get a Dr. in the sport medicine clinic who knew it was RSD and the orthopaedic surgeon connected to the program concurred. Others Dr's( family Dr. and Rheumy) had done bloodwork,xrays, Mri's to try to find out what was going on. Is this normal for RSD -yes, not that anything about RSD is normal. Not all of us have the same symptoms and experiences with RSD, but we do share many common factors the most devasting being the pain and adjustment to living with chronic pain.I did 5 months of physio to get my knee to bend to 90-103 of the 130 range of motion I used to have. The good news is that nce you find a treatment that is right for you many of thes symptoms improve and/or disappear. My swelling is not as bad now(4yrs later) due to massage and lymphatic drainage which also keeps the muscle above the knee from getting large and hard. the burning is not as bad- still flares, my foot can mostly go under covers now,sometimes still sensitive,The charlie horses aree gone unles I really overdo exercise and the leg shaking and twitching is gone controlled by the meds. I am on Lyrica,which is a drug used to treat epilepsy,and nerve pain. Those are some of my experiences, hope this helps you.Talk to your Dr. about something other than the blocks if they are not helping you. Good luck!

Hugs,

scorpioj

Thank you so much!!! I think the best thing is just knowing that others feel this way, too! You're very kind and I'm so glad you seem better!

Thanks Again-

New2RSD

Please feel free to ask questions. I know when I was first diagnosd I had a lot of questions. please do not hesitate.. We are here for you

Even to this date, I still have questions.

pjs

My daughter was just diagnosed at age 13 with no trauma. She woke up and couldn't bear weight on her left foot. She was diagnosed within 5 days of onset and is beginning physical therapy today. I guess I had it first so I could relate to her. It's so hard to watch your child go through the same pain I did Please keep her in your prayers, and I'm doing 100% better! I've been off of Neurontin for almost a month now with only occasional flare ups. The pain is still there, but I'm able to function now!!

Thanks for talking!

Sorry to hear that your daughter has been diagnosed with RSD.Good to hear that the Dr. got her into physical therapy so quickly though, she has a very good chance at remission when treated so early and agressively. We will think positive thoughts for her and send prayers of healing her way.It is tough to see a child go through this when you know the kind of intense pain she is having.Glad to hear you are doing better!!Let us know how your daughter is doing and give her a gentle hug from us.

Blessings,

scorpioj

She goes for a nerve block on Tuesday. The doctor wasn't happy with how quickly this is taking her leg. Thank you so much for the prayers!

Scorpio, I just read your post and I thought this is me. I have all the symptoms you mentioned. Actually, I also read others and I am almost giddy to find out others have this. Like most, I have doctors who tell you very little except RSD and shake their heads. I also found out that others battle simple things like shaving your legs. My question is what is a normal day like...I find I barter my time . I love yard work and I am willing to push the task knowing I will pay dearly.. I am willing to spend the rest of the day in bed on pain pills. Family and friends discourage me but I love accomplishing something. What do you think? Does anyone have times the pain is controlled enough to do some things like mowing half a small yard. I do not want any set backs. Which is a other question....when your doing better are you ever pain free? I can't thank you people enough.....maybe misery loves company.

Hey sethsma,

It's always a comfort to hear you are not the only one going through the crazy things we have to cope with in dealing witrh RSD.

A "normal" day doesn't really exist in the world of RSD it is so unpredictable. Each of us experience it differently, respond to different medications and unlike many chronic illnesses,it does not have a treatment protocol or universal management plan. Most Dr.'s know very little about it and less on how to treat it.You can be fine one moment and the next have high pain for no apparent reason, but also the opposite is true, you can have high pain and then it has suddenly faded to a dull pain. The pain never goes away completely, but it can go down to levels where you don't notice it so much. The best rule of thumb is to do what you love. The joy you receive from it far outweighs the pain it may increase. You are going to have pain not doing what you love and will be depressed if you give up things that you are passionate about.Depression increases the pain. It is all a matter of doing in moderation,learning how much is enough as opposed to too much. This will be something you will come to know by trial and error. Pain that is only right after an activity that fades that day is fine. If the pain lays you up for 2-3 days-not so good. Sometimes we do it anyway when it is something we love and feel is worth the suffering.Most of the time we know our limits, find the balance and the line between enough and overdoing.So if one day in bed is what you have after doing half a small yard and it brings you a sense of acomplishment and joy - I say go for it!Rest the day before and after to help keep pain levels closer to even. Don't be too active for too many days in a row if you can prevent it.Keep positive, enjoy fresh air and sunshine and the benefits they give you.

Wishing you happy yard work and low pain,

scorpioj