Advice for Someone Newly Diagnosed?
 

Hi everyone --

I was recently diagnosed with early CRPS. After an ankle surgery 1 month ago, I began having burning pain at the incision site, followed by spreading, agonizing pain from toes to mid-shin. This was accompanied by what I now know are other hallmark symptoms of early CRPS -- increased swelling and sweating, color and temperature changes, decreased sensation, etc.

My orthopedist quickly recognized the symptoms, and started me on Gabapentin. I'm now up to 600x3/day. My pain became uncontrollable using Vicodin/Percocet/Oxycontin, so I'm now on a 25mcg Duragesic patch. The combination of the two meds has decreased the non-pain symptoms of CRPS noticeably (my sensation is much better) and seems to have improved, or at least masked, the pain symptoms partially -- I'd estimate a 30% reduction in pain on average, though it varies a lot from day to day. I find the side effects disruptive -- among others, I have significant memory loss and trouble thinking, and large and constant (but not painful) muscle jerks -- but I'm willing to be patient with them while I get used to the medications and focus on symptom management.

I am now weight-bearing on the affected leg, but will not be able to get my cast off and start PT for another week and a half.

My primary question (I'm sure I will have many more as I move forward, but I want to get a handle on what's already been answered 100x on the board) is this: Knowing everything you know now, what would you do if you had been diagnosed very early in the disease progression? I am in my mid-20s and EXTREMELY motivated to do anything necessary to achieve remission or at least a high degree of improvement -- no matter how painful, inconvenient, or expensive.

One more thing to add: As my username implies, I am in D.C. -- but I can travel anywhere on the East Coast if there are doctors people recommend. I have an appointment with Dr. Moskovitz @ GW next week, and one in August with Dr. Horowitz at Mass General. I've tried to make an appointment with Dr. Schwartzman in Philly, but I've been told he's booked until 2015 -- and that others in his office also have very long waits.

Here's my answer to what I would have done if I had known in the beginning what I know now:

1. I would never have allowed the doctors to immobilize my ankle or treat with ice.

2. I would never have allowed doctors to bully me into treatments that I did not believe would help me (payed the price for this when said treatment caused my RSD to spread).

3. I would have dumped doctors at the very first sign of their lack of knowledge about RSD.

4. I would have started treating with tDCS immediately. This has been a miracle for me after experiencing spread and I wish I had known about it much sooner. It is effective, non invasive (no risk of spread), has had no side effects for me, only cost $300, can do the treatments at home myself, and aims at the root cause of the condition vs just covering up symptoms.

I want to make clear that these are the things that I personally would have done differently knowing what I know now. Everyone has to do what they feel is best with regards to treatments and such. Educate yourself about the many different treatment options and be an active part of any treatment plans. If the doctors you see don't respect that then they don't respect you. Keep your focus on getting better and stay positive (as much as you can...we all have bad days). And don't ever, ever, ever allow yourself to be pushed into doing a treatment that you don't want to do. It's YOUR body and you ALWAYS have a choice.

I am also relatively new to the disease as well- diagnosed last Nov. but believe I may have had the disease a bit earlier than when it was diagnosed. You are lucky your doctor picked up on it so quickly. I've read that it takes, on average, seeing 7 different docs before the disease is recognized.

I agree with everything else posted above but would like to add one thing- try to avoid stress. I know this is very hard to do given the diagnosis. When I hurt my foot I was under a lot of stress because of a loved one's situation. I did not recognize what my worry for him was doing for my own health. Stress is known to contribute to this disease so whatever you can do to release stressors from your life (easier said than done) will help.

Another couple of things- I wish I had been put on Vit. C when I injured my foot. They are doing studies to see if Vit. C can help prevent the dev. of crps. I now take a multi-vitamin everyday- can't hurt I guess.

Additionally, I try to avoid any other injuries so as to not spread the disease. When my first LSB was ambiguous as to the results- I didn't have any temperature register on the strip before or after the block, I wish I had not had the second one done b/c my symptoms immediately were increased after the second block. Note to self- try to avoid any surgeries that might spread the disease. If the surgery is absolutely necessary, be sure to get an anesthesiologist experienced with crps so the appropriate drugs can be given to avoid a spread.

[QUOTE=SleeplessInDC;879802]Hi everyone --

I was recently diagnosed with early CRPS. After an ankle surgery 1 month ago, I began having burning pain at the incision site, followed by spreading, agonizing pain from toes to mid-shin. This was accompanied by what I now know are other hallmark symptoms of early CRPS -- increased swelling and sweating, color and temperature changes, decreased sensation, etc.

My orthopedist quickly recognized the symptoms, and started me on Gabapentin. I'm now up to 600x3/day. My pain became uncontrollable using Vicodin/Percocet/Oxycontin, so I'm now on a 25mcg Duragesic patch. The combination of the two meds has decreased the non-pain symptoms of CRPS noticeably (my sensation is much better) and seems to have improved, or at least masked, the pain symptoms partially -- I'd estimate a 30% reduction in pain on average, though it varies a lot from day to day. I find the side effects disruptive -- among others, I have significant memory loss and trouble thinking, and large and constant (but not painful) muscle jerks -- but I'm willing to be patient with them while I get used to the medications and focus on symptom management.

I am now weight-bearing on the affected leg, but will not be able to get my cast off and start PT for another week and a half.

My primary question (I'm sure I will have many more as I move forward, but I want to get a handle on what's already been answered 100x on the board) is this: Knowing everything you know now, what would you do if you had been diagnosed very early in the disease progression? I am in my mid-20s and EXTREMELY motivated to do anything necessary to achieve remission or at least a high degree of improvement -- no matter how painful, inconvenient, or expensive.[/QUOTE

Hi Sleepless,

Been where you are. Very sorry you have received this diagnosis but great that it is early!!!!!! My list of what I would have done is only one item. I would have immediately begun treatment with tDCS. Even though you can only focus on pain control at first it is important to understand the nature of the CRPS beast. The pain is promulgated by brain reorganization. Just about anything you do to manage the pain will not address the root cause of it. Additionally, the CRPS continues to progress. tDCS addresses what is causing the CRPS.

tDCS can be used with other treatments so you don't have to abandon a treatment plan to try it.

By the time I learned of tDCS, (through my own research rather than any doctor) my CRPS was quite progressed, severe and "old and cold." Still I have had a miraculous response to it. Given the condition I am in now I truly believe that had I tried it early on, tDCS would have put me in remission.

I suggest you review the tDCS thread for more specific information and the contact number for the top tDCS doctor in the US.

It is puzzling to me how many patients spend months even years trying treatments that are risky, invasive, costly and have severe side effects rather than trying one that is painless, low risk, cheap and has very low side effects such as tDCS.

It is disturbing to me that many newly diagnosed make post after post asking for help with each new symptom as the disease progresses, but don't try a treatment that can prevent progression and reverse the course of the disease.

Hoping better days are ahead for you.

My advice is to be as active as you can and aggressively persue treatments. Do not put it off hoping that the CRPS will just go away because it's not going to. Don't let your life pass you by because if you do you'll look back at all the time you "wasted."