New RSD member

Hi everyone,

I don't know where to start besides saying thank you to those of you strong enough to be there and speak about your experiences and really follow through with communicating some seriously difficult issues.

I am a new member, signed up today. I am fairly new to the RSD world, as my initial injury was only six months ago, and my actual diagnosis by my neurologist was only two weeks ago. I am thoroughly upset and confused and lost and appreciate any guidance.

Everything started on Nov. 11, 2011, when I tripped over my dog, and while falling, stepped on my left big toe with my right heel. Instead of just removing the heel from the toe and falling, I gracefully ripped the left foot out from under the right foot... felt a "pop" and silently cursed while hopping up and down, to not wake up my sleeping husband and daughter. Next day, went to ER... pain was moderate... ER DR gave me X-rays, which he took almost two hours with to tell me that I had a hairline fracture, but I need to see a podiatrist asap. Then, the wonderful DR put a fiberglass piece around the top of my foot (wet it and made it so tight I could not bend any part of my foot) and that's when the pain really hit. My husband was next to me, and when they put that piece of evil on my foot, my eyes started tearing uncontrollably, the pain went from a 2 to an 8.

I went to a podiatrist, who put me in an orthopoedic boot told me I had no fracture, and that my "pain was inconsistent with a fracture anyway" so he sent me for an MRI.

MRI was "unremarkable." minor contusion and small ganglionn cyst. He told me that it would heal on its own and to take the oxycodone for the pain.. barely cut through it...

January, started feeling relief, so I thought the "bone bruise" was healing... two weeks later, the evil night pain came back. My skin looks shiny, red/purple/blue/ spotty bruising, horrible swelling, I feel like a machine is inside my toe grinding my joint to dust... my throbbing and burning seems like a pleasant memory... so I go back to the doctor, who is totally unavailable until March 1.

Then, four months later, he says "your pain is inconsistent with your injuries (duh, you said that in December), You may have something called RSD"... finally reality.

Went for second opinion to orthopoedist. FInally got in with a neurologist, who diagnosed RSD without and EMG due to color/swelling/temperature difference/ shiny skin/..... Diagnosed at 5 1/2 month.

Pain is moderate at times, manageable during the day ( I don't usually end up in tears or choking at work)

Pain has spread from toe to entire foot. I can see something popping out of the bottom of my foot before the pain escalates.

My husband is maybe out of denial and on board?

I am going for Calmare treatment Monday, with hope of something.... Anyone have advice?

I am just lost and depressed. I am also completely unwilling to let this take over my life and I will not let this beat me. I will fight until the end and I will stand by anyone who needs an advocate.

Just looking to make contact.

Right now, I am on gabapentin. just started, so at 600 mg/day. DR has me doing a bone scan... pain is variable, mostly happens at night, and gets to the point that I feel like I am breaking apart on a sub-atomic level, but it is localized thus far to near the initial injury.

Any input is welcome.

Thanks for listening.

Thank you for welcoming me.. I am so glad to be able to speak and be heard. Thank you.

I do have a question that you, as an RN, may be more qualified to answer ... when the doctors gave me pain meds, they barely helped... the oxycodone barely cut through the pain. My question is this, I guess.. does neuropathic pain have a different means of transmitting pain and do traditional pain killers work as well for neuropathic pain as they do for physiological pain?

thanks for being patient with me.. I have so many questions. I am so glad to get a diagnosis, but so frustrated that there is no answer. I know that you understand.

Thank you for taking the time to welcome me and help me understand this.

What was your original injury, if I may ask? i don't even know if this is an appropriate question... I am sorry, I am lost.

Thank you Laura,

I think I want to try this treatment with a completely open mind, but I will gladly share my experience after. I am so thankful to have found this forum and am super thankful for you help and your willingness to share your experiences and link me to people who can help. In the future, if I can be the person who can help someone else, feel free to give them my email. I will send you an email off-board soon to give you my contact info.

Is it ok if I share a link to things I find about studies being done to help chronic pain? I looked at the forum guidelines, and it looked like this may not be allowed, so I thought I should ask for advice. I understand that this is a support network, and that some studies may be misleading and dangerous to follow, so I thought I should run it by a forum moderator. I want to stay involved, but I don't want to cross any lines.

Thank you for your advice and for being so responsive and open. Let me know if I can help anyone you communicate with, in any way.

I will be finding my PM dr in the next two weeks or so, and I have to say, I have had some frustrating experiences with other types of Dr's that do not know this disease. I would have been treated earlier if I or the doctors were more knowledgeable, so I have taken it upon myself to gain as much knowledge as I can. How else can I choose the right PM dr.?

Thank you for everything.
H.

. There's not one definitive test for RSD so most drs especially neurologists (my opinion of course), can't /won't diagnose it or they are totally unaware of this disorder which I find it to be mind boggling. 2008 injury to top of calf, lower thigh and ligaments around the knee on rt leg. I didn't think it was a complete tear but definitely more than a pulled muscle. I stuck it out for a few months and thought it was healing. Oops re-injury and w/in days swellled up 2xs the size of my other leg. GP doc put me on an antiflammtory between X-rays, MRI etc. Nothing according to a few specialists in the meantime part of my leg continues to swell and I literally could feel fluid dripping from the injured area. Eventually I developed all the characteristics that I now know as RSD. In about 2 weeks the same occurred in my left leg and lower back. In about 4 mos I still had no answers but my GP and PA were my support the entire journey. When each referral went nowhere, they remained intent on helping me find an answer. a 2nd ortho doc referred me to a neuro .. All 4 would diagnosed me with neuritis and a prescript. But no answer to the cause of the pain, sensitivity, swelling and color changes. Meds only helped w swelling a bit. Btw Mayos declined the referral....they werent sure how they would help me. Huh?very dissapointing. Aftr crying hysterically w a neuro nurse, i was referred to Iowa City. beautiful hosp and staff but a jerk neuro. He said I s diabetic....and he wouldn't order the glucose testing to occur there! Had test w/in 48hrs bc of my GP. Results..better than normal. After ongoing pain and little sleep, my PA had seen enough and went for the big guns...fentanyl. It was life saving...reduced the pain and kept my sanity. After persistent Internet searches and specifically following the IA debacle, I opened up my computer and went to work. I found it! After I saw the definition of RSD, I was 98% sure it was it! I then found a specialist at RIC in Chicago. Diagnosed and went 4 weeks rehab. Made some very modest improvement. The best thing was to confirm that I wasn't going crazy. Cont fentanyl for a total of 4 months. Doc was concerned about side effects. I'll skip the ups and downs to get to my point... Myofascial Release (MFR) was my answered prayer! A friend had gone thru therapy for her fibromyalgia in Sedona Az at the John Barnes Instiute and she came back an entirely different person! With her encouragement. I went for 2 sessions. I cried on the table but not from pain but from sensing Hope was on the horizon. when I came home I was in search of a physical therapist trained in MFR. AGain another blessing...a therapist in my same town! I've been seeing weekly, initially 3 times pr/wk for 1 1/2 yrs and I can wear socks and shoes and even wide legged very light material pants....I still wear shorts most often but ar least for weddings and funerals I can tolerate it for a few hours. That's a huge step! My partner has been unbelievably lovimg and supportive. We will be married this September so it is my hope that I can find something to wear and ..the biggest milestone being able to dance at my wedding. Please give physical therapy, specially MFR the John Barnes techniques a chance to make a difference. Keeping mobile is so important and it's so very helpful to have a knowledgeable PT along for the ride. My heart goes out to those who don't have the loving support b/c as you have read, this disorder affects you emotionally too so the ability to post your feelings and also learn about various effective treatments gives us hope.