Keeping the faith in our battle of CRPS
 

In what feels like a never ending road trying to put out the pain of CRPS, we are still searching. It is almost the 1 year mark for my 17 year old daughter Maddy and her fight against CRPS. It started in her left knee and after almost 1 year of treatments including 3 months at RIC in Chicago, 5 nerve blocks, countless PT, OT, massage, tens, Micro Frequency Specific Microcurrent, and most recently a 4 week stay at Boston for the Children’s PPRC program where the pain was not in her knee, ankle and foot. After all this, it seems as if it only has progressed. After we came home from PPRC we had such high hopes, her pain as the same but she was so much more functional, running, going to school, attaining social functions and her sensitivity was getting a great deal better. This lasted for almost 2 months. In beginning of Dec, the pain spread to her left arm and shoulder, which was a setback but she is strong and continued on. Because there was no change in pain, we decided to try the Calmare treatments in Rhode Island which meant she had to wean off of Lyrica. During this time she was having really bad side effects which included terrible anxiety, a bad case of the flu, panic attacks and itching all over, all this resulted in a terrible flare which lasted about 2 weeks and during that time she did her pain management program every day. We stopped weaning her off of Lyrica, and for other reasons canceled the Calmare treatments. Just after the flare calmed down, mid January we went to our follow up appointment in Boston. They pushed her really hard and had her do a cartwheel and round off (both cheerleading jumps), looking back this was such a mistake. Coming home on the plane she started to complain of hip pain, YES, sure enough the next day it had spread to her hip. This spread was a real setback. That, along with a new heightened flare led to a total relapse, she is in so much pain, and all her sensitivity is back. She has RSD in her left side of her body now and the pain is out of control. She can barely walk, is homebound. She currently is taking Lyrica, Trazadone and Norico when she is in a flare. It breaks my heart seeing her miss her senior year. Okay, Moving on…it takes all my effort to get her to do her pain management program. We are still doing desensitization in her arm and hip. She sometimes lets me do her leg. We have started PT again 3 times a week and I found a chiropractor who does cold laser therapy and will be doing that too. We went to see Dr. Lubenow at Rush in Chicago today. He has recommended and we have scheduled a 5 day hospital stay epidural infusion for February. He also does Ketemine treatments, so that may be an option for our future. It just doesn’t make since that we are worse off after almost 1 year of battling this or maybe I just haven’t come to terms with this disease yet. No questions….just needed to put this out there. Please keep my daughter in your thoughts and prayers. I hate that this has happen to her.

I am sorry about your daughter and also the mental impact this takes on you as a mom. I know how it has for mine. I also know the ups and downs of this condition. So much I feel is about finding what is right for the individual with RSD which is different from person to person and unfortunatly takes trial and error. For myself I am very careful in a procedure etc that I do now since many have made me worse that were supposed to make me better. It is hard to know what to do because the current is so bad and hope a procedure etc will make things better but yet have to be cautious. I wish I had answers for you. I do feel it just takes 1 med or 1 procedure to get to a better point. I hope your daughter feels better

Wow. You guys have been through a lot.

I truly wish you the very best and will keep you in my prayers. Your daughter is lucky to have you.... (we ALL are blessed to have our caretakers).

Ketamine gave me an edited form of my old life back. I highly recommend it. Good luck.

xoxox. Sandy

Hi,
Im so sorry to hear that your daughter has had a tough year. It wish I could give you an answer as far as the next step in treatments but I can help you with some information relating to Rush's Pain Center in Chicago and more specifically Dr. Lubenow. Last year I was treated by dr Lubenow and the treatment plan started with 3 out patient ketamine treatments. The 3 treatments provided a lot of relief and I have tried almost every treatment for rsd. The dr requested I do the 5 day in patient treatment and I said no because of the catheter that they place in the spine for 5 days while performing the ketamine 5 day treatment. The catheter is used to provide a continous nerve block for cases that have pain from the waste down and I my case it's in both legs. My voiced concerns really set Lubenow off and he became extremely rude. I just want to warn you of his possible bedside manor because even at age 27, I was left speechless as to what ge said to me the last time I saw him. He told me I would be dead by 30 if I did not do exactly as says and he would not talk about the invasive part of Rush's 5 day treatment. In my battle of rsd I tried numerous spine invasive treatments which caused the rsd to progress.
Long story short: I think the ketamine treatment will work well for your daughter especially since she is at year 1 so she is still in the time frame for a significant remission with the proper treatment. Just be careful of how you approach Lubenow. Also, at the time I did the out patient treatment I had been fighting rsd for 3.5 years and I had great results so I can only imagine what it could do for your daughter and the out patient treatments are non-invasive and only cost 300.00 per treatment. Hope this helps you and your daughter, my heart goes out to you both.
Sarah

Outpatient ketamine for $300 per infusion!!! You have got to be kidding!!That's wonderful!!

I'd LOVE to know why it costs $1700 or more here in RI!!....

Sandy,
I couldn't believe it either! It was by far the cheapest treatment I have ever done. Heck, just one of my meds cost more than the ketamine treatment. Im not sure why it cost so much in RI especially since Illinois has one of the highest costs of living #. I wish treatments had a flat rate like ups :)

I am so sorry
 

Dear Mom and Maddy,

Wow after reading your post, it left me speechless. I know this has to be traumatising to watch your daughter live in this pain. You have done so much this past year to attempt to heal your daughter and yet she is the same maybe worse. Mom, maybe too much, and I hope you don't take this personal, but with this disease comes desperation. The pain is so intense we will try anything to get rid of it. I do know that remission is completely possible especially for children if caught early and treated properly, so you are on the right track. I mean a cartwheel with a round off...what were they thinking...and now she is bound to the house and can barely walk, I am so sorry.

I can tell you from personal experience about four years ago my PM doc sent me to a group of specialist, this included weekly lumbar injections, pt, ot three times a week, a pain specialist psych and a surgeon. I was working at the time and I felt worse than I had ever felt. I could barely walk and every bone, joint and muscle in my body hurt. My physical therapist had me doing exercises that created enormous amounts of pain, I kept telling her but she insisted this was what I needed to do. My anxiety got so out of control I was having constant panic attacks and this only added to my pain. Thank God, my pain psych, who was not in it for the money, told me "you look terrible" and that I needed to listen to my body. He suggested, actually demanded, I stop all treatment. He called my PM doc and insisted that I be taken off of work due to a mental breakdown (from all of the stress of the appointments). He worked with me on relaxation techniques and changed my pain medication to get the pain under control so I could make better choices to manage this disease. This was probably the best advise throughout my ten years I had ever gotten. The appointments, injections, pt, ot, opinions, were actually making me sick mentally and physically.

I took a huge step back, I did get my anxiety and pain under control, and that was just the beginning to where I am today. I am not healed, but my life is much more manageable. I listen to my body even now, I know when I can push myself and I know when I shouldn't and I respect that. All I am saying is be sure that when a doctor asks Maddy to do a cartwheel with a round off... Maddy has every right to say NO. Your daughter has a great chance of remission, and that begins with her having choices, dignity and respect. Take a deep breath Mom, and ask God to lead you to the place that will best heal your daughter. God Bless you both,

Jeanie

Wow.... if it weren't for the mother/daughter aspect of your post, I almost could have written it myself. I've told my husband before that my only saving grace in all of this is that I got the disease rather than my daughter. I feel for you, having to watch her suffer. It must at times be almost more than you can bear. :hug: It brings tears to my eyes just thinking of it.

I'm so sorry to hear about what you're going through. I can't imagine your poor daughter going through this at such a young age. She's so fortunate to have a mom like you on her side.