Hi There!

I was diagnosed with RSD in my left foot in 2008. In 2006, myfoot had one day mysteriously swelled up and became really painful. I could barely walk. After 7 doctors, I finally found a one that listened to me and my symptoms, who didn't know what I had, but at least knew it was real. I found a great rheumatologist who treated me, and a great chiropractor who had experience in treating RSD.
I like to call my left foot my hobbit foot. We all know that RSD can make the area grow thick hair, and it was really swollen! I looked like I was related to Frodo

Come to find out, I have probably had RSD for more than 8 years, because I had the same symptoms in my hand in 2002, but it had been treated quickly because my brother's a chirpractor and although we didn't know what it was, he had the foresight to treat it with PT and TENS. It went down after about 6 months and hasn't come back.

In 2009 (whiule I was pregnant), I was released from care because my foot was so basicaly cured. No more sever pain, although the 3 years of swelling damaged the facia and cartlisdge in my foot, I no longer have extremem pain.

However, last week, I've started feeling the twinges of RSD pain in my right foot. And today, I can hardly walk. I'm going in two days to confirm. I'm hoping that with quick care, I'll be able to nip this flare-up in the bud!

Hi, all!

My name is Kerry and I'm 23 years old. When I was 13, in 2000, I was diagnosed with RSD in my left foot. At the time, I was the 2nd pediatric in the state of Maine (where I grew up) to be diagnosed with it, since it was so uncommon 10 years ago for kids to have it! It all began while training for my cross country team in high school, all I did was twist my ankle, and then all hell broke loose!

After a few years of tried and failed treatments and medications, I finally went into remission in 2003. I was able to get back to most of the things that I loved to do prior to my diagnosis. In 2006, I had a remission, and was able to get it treated almost immediately. By 2007 I was back into remission, and thought things were going great. Last June (2009) I was working with a client and she kicked me and broke my ribs. My RSD has since spread to my chest, and I have yet to get any treatment that works, which is so frustrating! I'm working on getting into new doctors, since I have moved away from my neurologist that I had been with for 9years.

I try to keep a smile on my face, while trying to block out the fact that every breath I take reminds me of the fact that I have RSD, and that it has spread away from my foot. I'm trying to get through graduate school, but it's going very slowly, as it is difficult to get up in time for class, and difficult to stay awake long enough to study each day.

Here's hoping for new and better treatments out there that will come our way soon!

Hi Diane, I am new and trying to write this has been a problem. I keep being thrown back to an earlier website. I will try one more time to write you. I do not understand how to manuever and communicate with other members. I have a user name (DebDog) and password that I registered for last night so I am not a visitor. Our story is somewhat similar. I have a 31 year old daughter and live alone. I am divorced and my mom died July 24, 2009. She was always the one who took care of me and believed in me and was always the one who was there for me. I am feeling the grief more than most. I was a supervisor with our local school system and my dr. forced me to retire in Sept. In addition to those changes, I also sold MY house yesterday and have to clean it out. The pain is out of control and everything in my life has changed. My SCS is moving around and is not stable. I am in acute pain with it and continue the chronic pain with the RSD. I have trouble walking and my headaches,etc. are getting worse. Every hair on my head hurts. I am having surgery on June 1st to have the SCS stablized.They are going to find the fatty area b/c I have lost so much weight that I only weigh 112 lbs. and it has affected the stablity of the SCS. Have you lost weight since you dev. RSD? Thanks for sharing your story about your family. It's good to know that other family members do not accept this disease. I don't feel so alone. Deb Dog in Louisiana

I spoke with my Sis Terri today about the forum. She asked that I try to share her story with you since due to the RSD she has endured starting with diagnosis in 1995 she has ultimately been losing her sight along with all of the other things others among humanity tend to take for granted. Due to RSD affecting her with numbness in her fingers as well, she is compromised both as to sight and the means to type well. She chuckled, chuckled mind you, when I asked whether she would join the Forum, because she cannot use the computer. I should have known, I just didn't think.

Terri's saga began with knee surgery back in the day before knee replacements were even dreamed of, and then a second, third, fourth, and then her fifth. All of this occurred before 1995. She was a chef and artist keen with a brush. She enjoyed running a kitchen. She was queen, and she cooked very well. No, she did not study at le Cordon Bleu, but Terri prepared many a dish pleasing to the palate. Physical therapy was her lot after surgery, some think too aggressively at the time, but she pursued it with gusto so she could return to work. That's what she did. Work hard. Work harder. The fun experienced being among people. The RSD struck.

Pain, swelling, lots of swelling, and infection set in. The knee work might have been OK had she been able to avoid the infection. Gangrene was the follow on. This is 1995. Meds were tried at the time even though it seemed the docs were struggling to understand her affliction. She held on until 1996, and we were there when Terri, 5'8" Terri lost her first leg at the hip. The RSD, of course continued. Pain, lots of pain. Always burning. Never stopping. And it didn't stop with one leg, symptoms spreading to the other leg, which Terri lost surgically in 1997. Her RSD was of such an advanced state, that her docs included her in medical journals and texts regarding the complexity of her disease saying she is one of a kind in this fabric of humanity. The symptomatic osteoporosis which invaded her courtesy of RSD had reduced her legs prior to each amputation to gangrenous flesh only, to the docs' amazement neither cartilage nor bone remained in the removed limbs. Terri became 2'6" tall. She now weighs 70 lbs. But you should see her pop a wheelie on her electric wheelchair. Awesome. And the smile that creases her cheeks, Priceless.

Now her demeanor has remained a bright spot of cheer for others as she has continued to paint or draw for the sake of sharing her blessings among those around her. Recently, she participated in a prescribed chemotherapeutic treatment generally reserved for oncology patients in an effort to stem the RSD tide. That trial failed her; nevertheless, Terri befriended many on the floor during the several days she was in residence. They had been searching for artwork to adorn posters and T-shirts for their floor so Terri set about to do it. They liked her ideas! The shirts are now in silk screen production for that hospital floor. Terri's cheer has stricken home again to the aid of others.

Sis has certainly not been without her trials as her body has continued to fail her. Symptomatically she has fairly defined RSD and the spasms she has endured reach ALL aspects of her body, even her blood vessels. Her heart has taken a toll due to the RSD spasms, and she has been resuscitated from an appointment with St. Peter 7 times, yet she persists. I told her today it has to be, HAS TO BE, because she was meant to do something more before "going home." Terri pointed to her t-shirt oncology project with a smile in her voice as she agreed "**** right!" [I deleted the profanity, but you get the point]. She doubts she could be revived again because her bones are too brittle from the osteoporosis to be pressed in a CPR maneuver.

I cannot reveal her full name or location because the meds she takes are far too controlled to risk it. She is prescribed 17 different meds per day, among which she takes for pain 30mg of morphine sulfate every hour, 400mg of what she calls pure morphine twice dailiy, AND the fentanyl for those times when pain is so excrutiating that she just can't take it. Sleep no longer comes except in fits and spurts, as she cannot rest and even the sleep meds I take would not begin to phase her. Heart meds a plenty, and on and on, but Sis prevails.

We have become accustomed to Terri being Terri as she is. So skinny now, her bones protrude everywhere. I tried designing a seat cushion for her to sit more comfortably and it seemed the trick for a few days, then the bones were making holes in her skin. Memory foams are more forgiving, but don't give her what she needs. I so wish I could help. We all wish we could help. She feels ready to meet God face to face, but His agenda is otherwise for now.

So, here I type, writing on Terri's behalf, thinking as I do about her that she has dealt with so much more than I, surely I can help bring her smile to you. Surely her grief has been much. Mine, not nearly so... if you have touched any of my prior posts, but then how can one compare the pain of any sufferer to another? Simply stated, pain is so subjective as to evade real quantification or comparison. Terri's circumstance serves to humble and to render me SO MUCH MORE GRATEFUL for the SCS implant I approach. She has been through the screening to determine whether SCS could possibly help her and the answer was a reverberating "I am sorry, this is not an answer for you, Terri."

She is willing to participate as she can, through me, to help any with their thoughts, questions, perplexity about the RSD she knows so personally. Her faith is strong, and she is a testament to one who, though stricken, has striven to help others. Thus, the hearty "Howdy" from Terri to you all!

Proud of one whom I love,
Mark56

Mark, what an amazing tribute to a beautiful person that you have been blessed to know. Thank you so much for sharing the gift of Terri with me. Lisa

Mark,
Please tell Terri that I am strengthened and inspired by her spirit and by your love and appreciation for her.
Sending hugs of gratitude
Hope4thebest

i've read alot on this forum, but just decided to join. I was dxd with RSD about 8 weeks ago, although i believe i have had it since foot surg November 2009. I have had 2 epidural sympathetivc blocks, the first one affected the wrong leg lol., and the second went horribly wrong. The nurse forgot to give iv fluid, and my bp crashed, had to get injected with amphetamine to bring it back up. Also, only about an hour and a half of relief. Got MRI of foot done, it shows bone marrow changes in my heel, toes, and fibula. This is freaking me out. I have been complaining of something "wrong" with nerve since surg. Have not been able to put my foot in water, wear a sock/shoe, and my surgeon just kept telling me that iat would probably get better. Now my foot is purple, ice cold(I call it the creeping death) and color/cold is moveing into my calf and knee. Just had a second opinion for my foot problems and found out that I need another surgery, I have several torn tendons again, probably caused from bad surgeon the first time. They wont do it though untill I get the nerves under controll. My new doc wants me to see another PM to have some sort of electrode thing implanted in my spine. I am scared to death due to bad spinal blocks before.
AND, now i have noticed in the past week that I have a really large, painful, moveable mass(breast tissue?) in my left breast, Same side as my RSD foot. I have also had a constant headache for 22 days now(on the right side of head), and 2 days late on period. Basically feel like crap. My husband just got home from Iraq a few weeks ago, and I feel terrible for him to come home to me having all this going on.

I know this is alot, and Im new to this so hopefully you will be kind enough to read and reply, even if it is just to tell me to keep it simple lol.
The main thing is this electrode implant thing, and the bone marrow, and the breast thing that has me scared to death...

Hi! I am so sorry that you have been inducted into this circle of RSD, but please be assured that you have brought your fears to the right group of people. I have found many angels here who have helped me so much, and have taught me how to better live with this disease. RSD is a scary thing and it is really ok to be frightened. Your body is undergoing many changes that you have never expected to have to deal with. I am also waiting for approval for a spinal chord stimulator (WC), and there is a good place in this forum to get education about this. The main thing is to learn all you can about this disease, find a good and caring doctor, and not to be afraid to take control of your health. The cold feeling and skin color changes are part of this. I am having a difficult time even tolerating any air conditioning this year, and always carry a shaw or sweater with me. I have RSD in my left arm, shoulder, creeping up my neck and head and in my right foot and leg. Hypersensitivity is also a big part of this. I always joke about having to have "big arm" clothing so that nothing touches my arm. I do not know about bone marrow changes, that would probably be a good question to direct to MrsD. I would probably make an appointment with an OB/GYN about the breast mass and also the late period. These may just be connected to a hormonal thing and that could be what is causing your headache. Glad you found this site and hope to hear more from you, Lisa

Hi Jane-

You are in a good place here where care abounds and folks will openly share their thoughts and concerns from the perspective of lived experience. Lisa offers wisdom in regard to the matter of taking all of this carefully in front of your doctors for their recommendations. If there are questions I can refer on to my Sis, I will be happy to do so.

I imagine your husband is just happy to be back in the states with you, and I hope and pray he is alongside you with love, concern, and help to deal with your health needs. Thank you to both of you for the service your family has given through the Army. Our son is mid-East Army deployed right now, and we have a bit of an understanding about the family cost associated with long distance connectedness.

All the best to you!
Mark56

Hi. Just joined here...

Been seeing a number of consultants. Rheumatologist suggested, and the Neurologist agrees that I have RSD/CRPS.

I'm not completely convinced. The diagnostic criteria seem a bit too vague. Seems you could squeeze quite a lot in there. For example, I don't have any oedema, and the pain I have is not burning.