My little Hobbit Foot
 

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!

New Here!
 

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!

New to Site- Diane
 

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

My Sister-in-Law Terri
 

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. :Blush2:

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. :D 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:hug:

hi there
 

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...:eek:

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 Q
 

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!:hug:
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.

...can't we edit posts?

Anyway, whatever is wrong with me, it bloody hurts.

Anyone else think the diagnostic criteria are a bit too inclusive?

just a note:

you can edit posts, but there is a 24 hr window allowed. Past 24 hrs, the option closes.

My story so far
 

Hi all, my name is Maree, i was working as a personal carer, when i was hurt by a woman who has demtia.

My left forearm has not recovered, this happend in Dec 08, so nearly 2 years ago. I was bought up to be strong, so i soldiered on , no matter how bad the pain was, continued to go to work , right up until the 23 Dec 08, walking around like a wounded bird, with my arm held up to my chest.

I finally got to the Dr, who put me on compo, i was off work for three months, had physio, accupuncture, exrays and ultra sounds done, these did not show anything, even though i have a lump on underside of my forearm, the treatment only made the pain worse.

I carried on for 12 moths, with the pain, having good days and bad, then in Jan , i hurt my arm again, this time it's a lot worse. I have been to several surgeons, who treated me like im a bung on, and i think this is partly because when they ask about the symptoms, there is so many , i end up not saying much for fear they think im not telling the truth, anyway, i have had an mri done, as well as xrays, and guess what, nothing showed up.

Only one specialist said he would not rule out CRPS, and said i must be going out of my mind, him and my own Dr are the only 2 who have taken me seriously.

I am seeing a phsycologist for depression, not only is it caused from the pain, but also from the disbeleife i have been bombarded with, from my manager, some co workers, and Dr's.

There needs to be more awareness about this ondition, its not fair we have to go through this sort of thing, the pain and the debilitating effects of this condition is enough for anyone to have to bear.

I have not worked since Jan , i cant drive my car much, i have only driven 5 times since Jan, my manager made it quite clear she did not think there is anything wrong with me, told me there would be no light duties, if i came back to work. The pain has prevented this from happening, and even it didnt, i would not be working there anyway.

I am on Valpro to help manage the pain, they tried me on LYRICA, and another drug, but neither of these agreed with me, i also have strong pain killers, but as you would all know, pain killers dont really do much. I am blessed with a wonderful hubby, and great kids, and good friends, and these sites, where i can talk about this , and wont be thought of as an idiot.

Cheers, Maree

New & looking for doctor in my area
 

My name is Shelly
I was involved in an auto accident/roll over on the interstate freeway in mid May. As a result I have now been diagnosed with RSD in my left hand.

I was wondering if anyone knew of a good neurologist in the Tacoma/Seattle area who specializes in CRPS/RSD. I been blessed with pretty good doctors so far (was diagnosed within 2 months) but as I educate myself about this disease I now feel I need a neurologist who can help me with the next steps.

I was thinking of the UW (had sinus surgery earlier this year w/good results) I can call that doctor and ask him if he knows anyone. I thought I would try here first as I am hanging on to everyones coat tails. I have never been down this road before, and I keep stumbling.

Thanks in advance for any help

My story
 

I was recently diagnosed with RSD/CRPS even though I might have had it for 6+ years.

When I was 17, I fell and dislocated my right knee. From then on my life has been a living hell of pain and doctors just telling me that is was in my head. I also noticed this large (growing) bump on my right foot that would swell up and hurt every time I walked. Of course they did x-rays and told me I had a bad case of a bunion. They told me when I was close to my mid 20s I could get it removed.

Now I am 23 years old, that bump was actually a broken sesamoid bone that was fractured in 4 places. I lost all feeling in my right foot due to the pain never being treated. I had surgery to remove the now dead bone and still have severe pain in my right foot and lower leg. That was when the doctor finally diagnosed me with RSD. Pretty much I wouldn't have RSD if some dumb doctor could have read an x-ray right, but who knows.

My RSD has spread to my leg and right now it has stopped at my knee. I can barely walk because the pain is so severe. And rely on others to drive me around. I normally use a wheelchair when the distance is more than 10 steps.

I have been looking for a support group for numerous reasons in the san diego area and have found none. So I am hoping this site might help me with all the questions i have.

So far my treatment is:

Lumbar injections every 2 weeks
Acupuncturist 2 days a week
Physical therapist 2 days a week
Physcologist once a week
marriage councelor 3 times a week
pain meds (percocet) every 2 hours.

So far the pain has yet to be decreased. :mad:

Skj
 

Hi, My name is Mary. My husband was dx with RSD/CRPS august 2009. He was waxy skin (although his color is "dusky" ), long, yellow curvy nails, long black hair on his arm, and edema in both legs. His RSD appeared after surgery, in his left arm, and it has moved into his chest and back and starting on the right side. We are currently trying to connect the edema to the RSD. We lnow it is connected, we just have to convince comp. Good luck to you!:grouphug:

Better late then never, sort of
 

Well, after years on this site in the spinal surgery forums, I finally find myself here. I had my first ACDF on two levels in 2005, followed by a posterior fusion in 2008, lumbar laminectomy and then hardware remove from the cervical region in 2009.

I frequented this site as my pain continued all these years and seemed to worsen despite my surgeries. In addition, I had my gallbladder and a basal cell removed this past December.

After trying countless medications & procedures, I finally met with some excellent Dr's in NY and was told I had severe CRPS and they were shocked that no Dr I'd ever met with over the years had ever suggested it.

While still a bit in shock over the diagnosis, I have my 5 day infusion treatment scheduled for November and am pretty much scared to death but trying to keep going and keep smiling (not so easy most days). I've been to the ER 4 times in the past 5 wks and am praying ketamine can bring some relief.

I see alot of stories of strength and courage here and it does give me hope.

Hope to get to know you all better,
Dawn:)

Frogga --- I dont know when you posted your story but it was the most disheartening thing I have ever read. I cannot believe the torturous pain you must be enduring! I am so sorry for what you are going through. It sounds like you have the worst case of RSD/CRPS that I have ever heard about! But I am so impressed with your positive attitude. It makes me feel like I have no problems at all compared to what you must be enduring every single minute... I am truly sorry about what you have to go through! But you have a great attitude. And you are strong! You are an inspiration to me. You had the courage and strength to continue living, going to school, making friends and it is so encouraging.
Hang in there! I hope you continue to get better.
Hugs!
Lauri

Hello
 

I've been reading through the posts and already have found much inspiration here.

My story is not as painful as most, yet more painful than I wish to admit too. About 8 years ago I suffered pain, redness, burning and swelling in my lower left leg and foot. I don't remember having any injury during that time so went to my doctor who sent me to a vascular doc who did some tests and diagnosed me with primary lymphodema. I was told there was "nothing that could be done" and to wear support hose, elevate legs, take meds for swelling and basically live with it. I found a therapist who specialized in lymphodema and with the help of lymph massage and wrapping helped to get my leg swelling down but he wasn't convinced that I had lymphodema. Ok, I know this forum is about RSD but bear with me :o

Four years ago, I woke up with a sudden pain in my left shoulder. For the next few days the pain persisted and I did what I guess most would, I favored the arm and shoulder and protected it. After a couple of weeks I could no longer raise my arm and the pain was worse. I was diagnosed with frozen shoulder. I had tons of pt and two surgeries to manipulate the shoulder (one with some repair work) but I formed scar tissue easily and kept ending back up at square one. Plus the pain never went away. I switched doctors and after another surgery to repair and manipulate and yet another physical therapist, after a few months I did gain motion back and less pain (total time was over two years, two doctors and three therapists) I do not have full range of motion and I do still have some pain but finally that got better. Ok, I still know this forum is about RSD but hang in there! :o

Two years ago I was diagnosed with cubital tunnel syndrome in my left hand and shortly after that I had a nerve transposition which helped to clear up the pain in my hand and remove 99% of the numbness in my fingers. I know...still nothing about RSD.....

In January of this year I took a hard fall down a flight of steps. I injured my right wrist and both thighs had multiple contusions. I still have a hematoma on my right thigh along with three nasty little scars and some pain there. I was soooo thankful that the xray showed no fracture and figured in a couple of weeks I'd be good as new. That wasn't to be the case though :( After a couple of months the therapist was the first to mention RSD to me. The swelling was going down slowly and movement was "frozen". My wrist and knuckles were like stone and didn't want to move. My doctor confirmed I had RSD (two doctors actually as one was my ortho (the last frozen shoulder doc above) and the hand doc (that did my nerve transposition). I've been on Lyrica and Voltaren as well as some other meds for pain and vitamins for the past 8 months. Shortly after my fall, about a month, I also developed frozen shoulder on the right side which had made my movement very limited with that arm. The swelling is under control now, I still have some minor swelling at times in my hand area and although movement has improved I still have limited motion in the shoulder, wrist and knuckles. I just completed a serious of three stellate ganglion nerve blocks which seem to have helped a small amount. I still have pain but the colorization is better.

I have had continuing problems with my left leg and ankle with turning red and burning and swelling. I mentioned to the therapist that I thought perhaps I did not have lymphodema and thought perhaps that had been my first sign of RSD. She said that RSD is usually from surgery or some injury so she didn't think so. I talked to my primary care doctor (not the same one that treated me for the legs before) about the swelling and he said he thinks I have veinous insufficiency. An ultrasound came back as normal. After reading posts here I'm more than ever feeling that my leg also has been affected by RSD and I plan to discuss that with my ortho doc next visit to see what he thinks. I noticed from some posts that frozen shoulders and cubital tunnel, nerve issues were mention which is why I mentioned mine as well.

My worse problem is that I hate to complain so when asked how I am by family, docs and therapist I tend to always say "okay". I've been trying to work on that but it's hard to express how the pain feels and if I'm not in any severe pain at the time then to me I AM "ok" at that moment.

Well, sorry for the long post but it felt good to just say all of that to someone. I wish you all the best and look forward to chatting.

Take care,
Kathy

RSD maybe
 

Hello All
I would like some info from the people who really know, those who have it. It has been suggested that I might have RSD. It all started with knee surgery, then a second surgery. After the second surgery PT suggested to the DX that they thought I might, then it seemed to go away. I would have flare ups every now and then. When I say flare up I mean the pain increases as does the swelling. Then about a month ago I had burning pain up the back of my leg. But after a few weeks it lessoned to just once in a while. I also have a knee that will not go straight and no one knows why. Sometimes my calf feels tight and stiff. I also get something that feels like electric shocks. I also have weakness in my thigh, can't lift my left knee like I can my right. My new DX said I might have RSD tend. What I would like to know is does it sound like I have it, after reading some other post I don't have it so bad.What I want to know is does it start out mild? Is there any way to find out for sure? I would like to also add my second surgery was 1/13/2010, and I'm stillnot back to normal. And if you look at X-rays of both knees my good knee looks as though it should be the bad one. Has new DX puzzled. ANY ANSWERS. Please Help

A Newbie
 

Here I go...
 

First of all, I'd like to thank all of you for this group- Even though I have just joined today, you've been my cyber "home away from home" nearly 24/7 since hearing the term "RSD" grace the lips of my podiatric surgeon a week and a half ago.

I first heard the term reflex sympathetic dystrophy mentioned at my six week post-op visit after a bunionectomy w/osteotomy on my left foot. At that appt, my foot was still incredibly painful, and apparently the pain I was still in was much more than it should have been at that point. It was also discolored, and "splotchy" (for lack of a better word), swollen, and freezing cold to the touch. My doctor calmly said that these things concerned him, and that reflex sympathetic dystrophy could be something to be considered, and that I'd be scheduled for an MRI (although the xrays looked good, just to confirm the bones were indeed healing well), and for a consult with a neurologist colleague that he's consulted with in the past.

Of course, I asked him what this RSD business was all about, and he very briefly gave me the gist of it- but tried to keep it low key (I imagine to keep me from panicking... which is precisely what I did when I got home and google'd it, but that's my own fault). I started losing it at this point...what I was reading about RSD was devastating to me, and I kept thinking that I was overreacting, "there's no way this can happen to me..!" I prayed that the MRI would come back showing something wrong- hoped to God that the pins would show up to be too long, but they weren't. (My mind's dialog: one step closer to RSD confirmed dx...)

Then I saw the neurologist, by this point (just a few days later) my leg was starting to turn blueish too.

*Note: the discoloration really only happens when my leg has to be "down" for more than a minute or so...such as sitting in a chair, or ESPECIALLY when taking a shower, or when sitting on a doc's table, w/legs dangling- makes the leg look like it's about to be amputated due to hypothermia! but once I'm back in bed, or somewhere comfortable that I can prop up my leg, the color comes back within minutes- pain stays, unfortunately.*

Anyway, back to topic: at the neurologist, he notices my leg discoloration for the first time (was limited to foot prior to this). He also agrees that it is likely RSD / CRPS I (they seemed to use the terms interchangeably). He started me on Topamax, (both for the RSD and also to help my long history of migraines). He also ordered an EMG/NCV study to rule out any other possible nerve damage. I also prayed for that to come back with something wrong- but again, it was normal (or at least it was as expected for RSD). Seemed to be an awful, painful test for nothing (but that's for another thread).

So that brings us to today. I saw my neurologist again today- I say "my" now, because the RSD is now confirmed, and I will be seeing him for that, and he will also be taking over my migraine treatment as well (as there is some evidence that there are links between RSD and migraine, at least as far as how they function, it's best to "attack" them together).

As a means to keep the migraines at bay, while we battle the RSD, he administered a round of trigger point injection blocks in my neck (this was no fun, but if it works, it will have definitely been worth it!) He also prescribed Neurontin- to take at night to help w/pain and sleeping, (as even the vicodin doesn't cut it at night), in additon to the Topamax that he started me on last week. From what I've read, Neurontin and Topamax seem to be fairly common in the RSD world, so I'm hoping the side effects that I've heard/read about them get better...they can't be that bad if so many people take them, right?? :confused:

Anyway, if you've gotten to the end, I'm sorry for rambling- and thank you for listening! :hug:

I have been so scared since hearing about the possibility of RSD...and since the dx, I've just sort of been numb. I don't know what to think about much of anything anymore. And even my closest friends (and family!), as much as they want to "be there" for me, they just don't get it, can't understand it at all... the few I've told- their mind's started to wander, and I'm pretty sure they think I'm nuts and/or being over dramatic. I'd think I was nuts too, if it weren't for all your posts...so again, thank you to all who've written before me...it has made this very dark, scary time for me a little bit brighter.

(and as you know by now, I'm brand new to this- so any suggestions or tips, please reply, or feel free to email me (it should be on my profile) thanks so much!!)

Hi Snow
 

I have posted on the behalf of my Sis on the RSD thread. Her name is Terrie, and she has dealt with RSD now for many years. It is serious business and you should keep on top of it with your doctors, working to manage it the best you can, as for Terrie, now she is on a strong cocktail of morphine which is intended to help her keep at peace the best she can, and all of this started years ago with a knee surgery.

Praying for you, and hoping the best,
Mark56:hug:

unhinged
 

i've battled fibromyalgia since i was twelve but only diagnosed a few years ago. being fed up with the weight that the lyrica had packed on i started jogging in april. a few days later i could bear weight on my leg. i pushed on. it got worse. i was working in a nursing home. i spent all day walking, lifting and squatting and the pain was unbearable. finally the dr told me i had pulled something. i got a full three days to rest. then back to work. it got worse. i'd slip off by myself and cry or vomit from pain. co workers said that i needed to suck it up. i insisted that the pain was worse so my dr sent me for an mri. a week later i'm told that i had an inch wide fracture in my shin. so i had to stop working. after a few months it just wasn't healing right. i wore a bone simulator. my leg just hurt and felt weird. btw this whole time i'm in so much pain i'm taking lyrica and tylenol. that's it. i endured a nerve conduction study with a jerk who yelled at me because i couldn't flex my quad with a needle shoved in it. nothing. physical therapy, nothing. then the dr just shrugs and says if we leave it alone long enough it'll get better. so in october i come crawling back in extreme pain with hot and cold water feelings and creeping. he suggests a nerve block. it worked for about four hours. then the pain came flooding back. he has given up on me and refered me back to my family dr. she has me set to see a nero but they pushed it back another month. now its spreading to my back in an old work injury and creeping down my arm. the same side that i'm forced to use a cane on. now the dr and the pharmacy can't work together to get my lyrica. i know ppl that whine about a simple strain and they throw pills at them. i'm in so much pain that i cry and loose my temper and can't work and they won't give me anything. i'm coming unglued. i need a place to be understood.

Dear Fairlight,

So sorry to here you are suffering. It sounds like you just might not be with the correct doctors. My suggestion is to try and get to a Pain Managment Facility, possilby with a big teaching hosptial. I see you live in TN maybe Vanderbelt in Nashville I believe they are medical teaching facility.

I hope this helps. Feel better.

Gabbycakes

rsd new phase?
 

I am new to this site and new to the computer so I'm not sure what I am doing. I'm kinda lost. I found this site and started reading about all these people with rsd and just felt I needed to join in and ask ?s too. I read so many of your stories and so much of it I can relate to. I was treated like a mental pt, and the pain was not acknowledged for the longest time, just more and more clonidine to bring my blood pressure down. I was finally dx the end of 2003 after suffering for almost a year. My husband would take me to the er and they would shoot me up with something, and send me home. I would sleep on the way home, and my husband would carry me in and then as soon as I woke up I would be screaming in burning pain. After i was finally dx, I was put on avinza 30 mg 1x day---baclofen--clonidine--and neurontin. The constant constipation from the avinza was the worst no matter how much fiber and stool softners, and magnesium that I took. But the pain subsided, and after about 4 months I actually started functioning substantially. About 8 months later I started being jerked awake, PM dc said it was the baclofen so was weaned off of it. The jerking stopped. was weaned off the neurontin. Any way was weaned off meds, using ativan, had a adverse paradoxical reaction to it, and it was dropped ct switching to massive doseages of benadryl. I started having horrible partial seizures, couldn't sleep, walking the floor day and night, so dr gave me xprexa, said it would help me sleep, made me worse, then trasadone, I'm still having violent jerking thrashing partial seizures and cannot stop moving, as when I do my body starts jerking me violently I still cannot sleep, getting only about 2 hour a night if that. I' literally going insane from no sleep. I tried the baclofen again but had a bad reaction to it, maybe because of the protracted benzo withdrawals and the gabba situation. I do not know what this is or what to do. PM dr says that it is akathisia, neurologist says just drug repercussion and should heal, and they are all trying to give me antidepressants, and I know that akathesia is reaction of dyskinesia from such so am confused. In the meantime, because of all the trauma and no sleep my body is trying to burn again. My cns and metabolism is in over drive, as i cannot slow down, rest, relax or sleep. I was put back on neurontin but started moving uncontrollably, as my head would be pulled backwards and my mouth would open wide and my tongue would stick out. I looked up information on pubmed and there is a case of neurontin causing a condition called oculogyric crisis. I asked my neurologist about it and she said that it was possible, so am weaning off of the neurontin now and mybe a little too fast. I'm still on cloniding and almost off the neurontin. In the meantime, still no sleep, and one violent jerk-spasm-thrash-yanking seizure after another. Is this the rsd? Any suggestions on what to do? elmarita454

Hello-
I'm new to chats and RSD. I was diagnosed in 12/10. I had a crush injury to my right wrist and the pain has never gone away. Most of the time I can "feel" all the bones in my hand and shoulder (if I close my eyes I can picture the bones/joints). I also have pain in the arm (feels like it is being squeezed). I have faint pains in my left arm and my legs go numb often (feel heavy and like they can't hold my weight). There are times when I have pain on the bottom of my feet (pins and needles) and I have been having migraines for 2/3 weeks.

I have recently moved and my primary is questioning the diagnosis. It is so frustrating that I have to start all over again. Can anyone tell me if these are symptoms? I have no history of migraines or other health issues.

Changes in my life
 

Life has not been the same since involving in the accident on 11/11/2009. Sudden sharp pain and burning pain has been keeping me accompany 24/7. Was given an official diagnosis Stating that i have Complex Regional Pain Syndrome (CRPS) type 2 on 05/10/10 almost a year later; by the pain management Dr. Since then visiting to the pain management Dr., pain psychology and pain physiotherapist has been part of my life. Used to be a foodie, enjoy hunting declicios food; enjoy cooking and get my family members to be my geninny pigs wahahaha...., gathering and partying with friend in night spot such as St.James or having BBQ session followed by mahjong session and traveling to Genting Highland to enjoy the cool weather, to gamble and most importantly able to speed driving at 160 to 180 throughout the trip^^. Now it's totally different, has been trying hard to regain my life my lifestyle with the management of my pain with a 30% plus improvement. It's difficult, it's tough...... Has been living in pain riding on a pain roller coastal. To be honest I have totally lost the interest of staying alive; don't even mention about going back to my old lifestyle. Pain medications I am taking did help to reduce my pain but there are side effects. Taking my medications after dinner I will starts to walk in a manner as if I am drunk and by 9pm plus I am being knock out by drowsiness, if I take the medication too late, I will be very stone in the morning till noon. Pain medications don't always wins the battle. If pain monster wins, I have to endure the excitement of pain till the pain dies off on its own for 4 to 5hours my emotions my thought will be totally controlled by this monster. The worst is when it gets so painful that my tears starts to activate suicide thoughts will join in the fun. I don't*know when I will be totally defeated in this war. Lol...... No life at all. I wanted encouragements from my family and my friends but I don't have the courage to open up. Every time whenever I wanted to open my mouth to tell my family members I ended up swallowing my words. Afraid to bring disturbance to them leading them to join my misery.

Thank you for being here/Newbie/VERY long
 

Hello all -

My name is Vicky and live in Cadillac Michigan. I was just diagnosed today with CRPS type 1. I fell back in January and was diagnosed with a wrist that was fractured in 2 places. Was sent to a local bone specialist. After 2 visits with him, he sent me off for a MRI. About a week later, he called me personally to tell me that I had a torn ligament and he was sending me to Traverse to a hand/wrist specialist. This was about a month after my fall, and by then I was beginning to think that I was going crazy. My hand would swell, turn red/purple and my whole arm up to my elbow was on fire. It was bizarre, and I couldn't figure it out. This far in, it should not still hurt. Let alone hurt more then it did when I first fell. I was beginning to think that I was nuts. I would get comments from people about what a low pain tolorance I must have, even from my best friend. These are the same people that would mention that my hand was purple or red. I saw the hand specialist last week, and spent some time with him at which point he thought that the pain was from carpel tunnel, and wanted me to go for the nerve test. Meanwhile, I was asking my original specialist for a refill on my pain med (vicodine). I get a nasty message from his nurse yesterday about how this was the last time (please keep in mind this was the 3rd script at 30 pills per and 1-2 every 6 hrs as needed since the accident). And if I needed FURTHER narcotics that I needed to contact my pcp or the specialist. Here I didn't ask my specialist last week for meds. I was just trying to ride it out - thinking that one dr should manage my meds. That way there would be no confusion. It was like I was a drug addict. I type alot with my job, and yesterday (it wasn't the first but definitely the worst) day my arm was on fire! Nothing would make it feel better, I was crying - it was just awful. Today, I go to for my nerve test, and see a new dr. She listened, and examined me. At which point she proceeded to tell me that we would not be having the test, that I had RSD and the good news was that we caught it early. Now, tomorrow I am having the first in a series of 5 nerve blocks. Not to mention my mri did show some problems so now I still see the specialist, and have a new doctor. She told me this, and I started to cry because I really thought I was going crazy! She kept saying things like "remission" "agressive treatment" and so forth. Then I came home, and looked it up. Now, I am scared to death and freaking out about the block tomorrow. My other wrist hurts, and has been for a couple of weeks, thinking I was compensating and that was why. Not so relieved now that I have read a bit. More scared than anything. Wondering if anyone else has felt that way? Also, where would you go for real research and to get the facts. Thank you for listening to me. I appreciate it!

Vicky

newly diagnosed but skeptical?
 

Hello everyone, I am glad to have found a place for some answers (I hope). I have been battling severe chronic pain for five years now. Had every diagnosis told to me, then taken back you could think of, so you could understand my skeptisism in my diagnosis. I have read there is no definite diagnostic tool for RSD is this true? I ask because my story is so different then those above. While my pain is unmanageable, I do not have the "black&blue skin" nor did it seem to have started with a specific injury then spread. First I had horrible pain in the hip, no reason, just all the sudden couldn't bear weight. I had to wait a bit to go to docs (no insurance)all tests clear, then the pain started in the long bones (all right side) and the pain when I would get home from work would drive me to tears, you could actually see the throbbing in my right ankle. I haven't been able to work for two years now. Time has seemed at a standstill and all mushed together but either way, this pain has consummed my whole body now. I did fracture vertabrae in l-5 in a car accident but that was when I was far younger, then broke my tailbone and cracked the sacrililiac joint(sp?) due to the pain in my hip, sent me reeling down the stairs one day. When one seems to get a different diagnosis every year, not only do family members start thinking its all in your head, but sometimes I wonder myself. I know my pain is real, but I can see why people would think something fishy. The pain levels have now gotten to the point where normal "hermit" living isn't even doable anymore. When I first stopped working there was somewhat of an improvement, then a sympathetic doctor put me on some pain meds, at the time my dianosis was RA and FM. That helped take the edge off enough to allow me to walk up to store and back, which kept my joints moving, and care of the house. Now the pain is so out of control don't know much what to do. I started seeing a new family doctor very organized and up to date (old doctor told me I had "grown back my tonsils" when I had a couple growths on tongue/cheek, and asked him about them, when he siad tonsils, I said I had them removed at 23, lol let alone tonsils aren't on the inside of your cheek!lol. That was the last staw and sought this new doctor. Anyway after going over my records and taking an extensive history, I mean he mus have stayed with me a good hour! He started telling me about RSD and how he believes I have it but no way to tell for sure. Sorry so long and disorganized:( anyone out there have the same experience?

Rsd
 

You sound a little like my daugther. She is 18 yrs old and it took me ten years and so many doctors to get a diagnoses.
One doctor said it was all in her head and one diagnosed her with FM without even turning around to look at her. All we had to say was she hurts all over, so that meant it had to be FM. I finally went to a FM specialist (he wrote the book FM for dummies). He said it was not FM but it was RSD. My daugther does not have what you would call a text book case. That is why it was hard to confirm. There are not test to confirm the RSD. Just that she tested normal on all over disorders. We are not sure what caused the RSD to start. It started slowly in her legs. The pain was not consistent at first. Then over time it spread to her arms, both legs and back, even face and the bottom of her feet at times. But still not a consistent pain. The skin sensitivity was everywhere.
Just last week she had her 1st ketamine infusion treatment. 3 day of high dose ketamine. It was rough but the sensitivity is down 80% and pain down 60%. Dont know how long it will last but the relief is wonderful. In her case she has had the pain for so long that the brain is having trouble understanding what normal sensations are. She is having to learn what normal touch and normal pains are. There is a good chance she will need another treatment (very expensive)but I will do what ever it takes to help her. I hope you will find some treatment to make life better. God Bless

Oldie but newbie
 

Hi. I'm a new member and about to tell my life story. Hang on for the ride.
In Spring 2000 I fell at work knocked unconscious and when I awoke both shoes were off my feet due to the impact. I was rushed to the hospital and thankfully nothing was broken. Only a HUGE bruise on my entire thigh. Off work for a week. Within 2 weeks I felt electric like shocks in my ankle/thigh areas. Assumed it was just a result of the fall so I ignored it. 6 weeks later went to an ortho who promptly casted the leg due to soft tissue damage that was left undetected at the hospital.
6 weeks later cast was removed, still complaints of electric shock feeling and the leg was reddish. The doc then mumbled something about hoping I didn't have RSD. Returned to work.
4 months later still having the electric shocks, swelling etc so WC authorized an MRI showing the peroneal nerve by the knee was crushed. Off to a nerve guy in the city who recommended nerve surgery on the peroneal nerve and the femoral cutaneous nerve (which was also crushed). At this point the pain was almost unbearable. WC refused to authorize the surgery until a year had passed from the onset of the injury. The surgeon told my husband he did not feel the surgery was going to work after he got in there and saw the damage. He also said because the insurance company procrastinated the chances of nerve regrowth diminishes greatly after 1 yr from the injury.

FF to 27 doctors and IMEs. It's been a freaking nightmare. The RSD/CRPS has spread to include my back and the right side of my body. The redness has not gotten worse but I tore the meniscus in my knee requiring surgery in March 2010 and that has now worsened. I need a total knee replacment but they won't do it because of the CRPS. I'm left with drop foot and the sciatica is now damaged due to the crushed/severed peroneal nerve.
Sent to ankle specialist who couldn't believe I was still standing because as he put it, "there's nothing left in the ankle to perform surgery less much else".

They tried lumbar injections however I was the 1% that was left with temporary paralysis in my right leg so they put a halt to those. SCS is out of the question. I am anaphylatic to narcotic pain meds so that leaves me with Toradol (glorifed Excedrin as I call it).
I long for my old life and I'm now in pain counseling trying to deal with this mess. Add in Worker's Compensation and their games and it only makes it worse. I am thankful to have a drop foot brace and a back brace on the days I can stand them. I have a cane and a wheelchair but at this point I fight them every step of the way.
The pain can be unbearable but I'm working on it. Sometimes when it's so bad and someone touches me it feels as if they're bruising me and most days the right side feels like it's on fire. Does anyone else have that kind of pain with RSD?

RSD/CRPS dxed 1998
 

Hi all: I have been battling RSD/CRPS since 1998. My right foot and leg are constantly swollen, and shinny, and painful. I use compression hose when out and about to try and keep the edema down some.

I take tylenol or aspirin or aleve for pain, and if the pain gets to severe, I see the doctor to get a perscription for a few days.

Walking is difficult most of the time, and I use cane. On the days that my leg is nearly normal, I rejoice for the good days which are far and few between.

Hi Jenny
 

Even though I am not RSD Dxed, I have a thought for you regarding one whose Dx says RSD while she shows no outward symptoms. Her name on here is Rrae, and you can search her and visit her profile page, then leave a message for her there, and she will most assuredly be in touch with you. She is a survivor, a fighter, a humorist extraordinaire and a woman of deep and abiding faith that has helped her deal with the ups and downs. I will mention you to her as well!

Prayin for you,
Mark56:hug:ZZ

Hey Everyone,

Im Nigel from Malta, turning 21 this month and have a good chance im suffering from RSD and have been for the past 5 months, still without a clear diagnosis.

After doing research for over 5 months, I came across this forum last night and after reading many of your interesting stories, I believe that I have found the right place to get as much honest feedback and opinions as possible.

My Story:

April 2009:

Basically to cut a long story short, I underwent an ACL & meniscus reconstruction successfully 2 years ago after a fall from football. Although did not do the best rehab, I got back to a VERY active life - gym 5 times a week, work and heavy fishing without any trouble besides feeling my knee tired due to it being weak.

November 2010 (Injury):

Back in November I suffered a 2 day period of strong overuse of my knee and kept on pushing on it when my body told me to stop. Since those 2 days, my knee would always feel exhausted and swell from normal day to day activities like walking and driving. As time went by I developed a thin pain behind my knee which felt unusual. From the time of the injury till mid January I was always able to control the pain - as in I would rest and feel no pan sitting down for a few days then would be able to walk a little and the pain almost went completely for a few days. In fact a month later and actually went to the gym (upper body, no cardio) and drove without any pain, however deep down I knew it was still there but just much more manageable with every day activities. Crutches were used on and off.

(nb - The only position I would be pain free/rest would be sitting down with my knees bent at 90 degrees. Lying or elevating would feel uncomfortable and aggravate the pain)

December 2010 (Progress and setbacks):

I then strained my knee again in December by walking for 40min (was the stupidest thing I have done) and the same pain behind the knee came back, slightly worse than the first time. I then continued the rest period with small intervals of driving and fishing which aggravated the pain but up until mid January, the pain was in my hands and was able to control it even though I wasn’t living much of a life and missing a lot of work. Sleep was also never a problem. Crutches were also on and off.

January 2011 (Increase in pain):

The first 2 weeks of January were very similar to December, kept on resting the whole day and would make an effort to go to work (office work). Also went fishing on the weekends but would suffer afterwards. Around mid January things started to get quite bad and out of hand. The pain started to increase quickly behind the knee when out of a sitting position. The pain also started to develop into a shooting pain behind the knee like a tingling shock when lying down or moving round the house. Defiantly felt like a nerve pain. At this point it became difficult to sleep as laying down trigger the pain. I decided to stop all activity at this point and just do whatever it took to control the pain (sit down as much as possible and keep out of pain) and avoid going out of the house, fishing etc. Did this for 2 weeks and did feel an improvement and my sleep did improve and was able to walk more round the house with less pain. I felt as though the 'injury' was coming back into my own hands again but very very slowly.

February 2011 (Knee Arthroscopy):

On the 2nd February I underwent a knee arthroscopy although I was not for it however my parents though it was the best option. The surgeon found nothing wrong and just did a basic clean up of my previous ACL reconstruction, removing scare tissue and come minor cartilage etc... He claimed that the ACL reconstruction was in great shape also.

Things got very ugly after the arthroscopy, my pain had got much worse and I was not able to control it as i had to keep my knee straight for a week. I also had to force myself to do certain exercises afterwards as I lost even more muscle. I was getting very scary pain reactions at night and sleep was difficult. I also started to shake (like small seizures) in the first week afterwards and was taken to hospital 3 times in 10 days due to abnormal pain with nothing that relieved it, tramadol too. The pain also made my cry for the first time in a century. (The day after I ruptured my ACL and split my meniscus at collage, I was told it was just a sprain and had to walk up 4 stories of stairs to my room and lessons, shower etc frequently through the day and was not allowed to use crutches. So I know what ‘pain’ is and am strong in fighting it). This pain was not a pain I could muscle through or fight through. The more you try and fight it, the more it would fight you. My surgeon was also out of answer at this point and couldn’t explain my pain and advised me to fight through and continue with the exercises and stretching.

After 10 days from the OP I was able to start sitting down and bending my knee close to 90 degrees again with hope that the pain will disappear and subside like it did post OP. Unfortunately this was not the case however the pain did improve in this position.
I also took a decision to stop my exercises and get back to the rest phase and try to improve like I was before the OP. After around 1 week of complete rest and no exercises, the pain calmed down again and was able to sleep much better and was also able to walk round the house without crutches slowly a few times a day.

March 2011 (Roller Coaster):

During this month, I was doing my utmost to keep out of pain and stuck to my plan of complete rest. This was very difficult as during this ‘rest’ period I was constantly visiting a number of specialists (around 10 in all including physio therapists etc). I was also doing a number of painful tests. I was also being pressured into moving as much as possible by my family and also did some aqua therapy. The build up of all the tests, doctors’ examinations and aqua therapy got me into a bad state again and back onto the crutches with many sleepless nights. So much for my ‘rest’ period!

April 2011 (Physio Therapy…hospital)

After all the specialists I visited, they all told me that it was down to physio and that my muscle wastage was the problem. My parents also though this was the problem. Although I knew this was no muscle pain, I had no way out at this point as the rest was no longer working and just had to believe again that the PT would get me out.

We therefore decided to go to a Fifa PT clinic in Rome. I was put on an aggressive program of 2 sessions a day – aqua in the morning and gym in the evening (total of 4 hours a day). I decided to give it my all although the pain was indescribable but I was out of options to what else I could do. I followed the program for 3 weeks, increasing intensity everyday and the doctors and physios were all pleased with my progress although I was constantly complaining of sever pain and something not feeling normal in my knee. I was also experiencing many strange symptoms, especially at night. The doctors kept reassuring me that there is no reason to worry and its all normal and that soon I will be out of pain etc etc. This got me very frustrated as it was clear it wasn’t normal and that the pain increasing was not a good sign.

After 3 weeks of physio it was physically impossible to continue and the pain had changed into a devil inside me knee. I was then taken to hospital as I was not able to sleep for 4 days and the pain also travelled into my left hand causing my fingers to cramp up. I was examined by a team of expert and did every single test there, including full body MRI, EMG, blood tests, brain tests etc etc. Everything resulted normal. All they found were muscle inflammations behind my knee on the inside hamstring and calf muscle (7 cm in all). They also found a smaller inflammation on my left knee however they concluded that these inflammations were not the cause of all this horrific pain. The doctors are still working on my case and are suspecting it’s some kind of pain syndrome.

Current Situation:

Currently im stuck in a flat in Rome with my mother and have been put on a pain medication program by a top pain specialist including Lyrica, Amytriptalin, Oxycodine, Cortisone steroids, Paracetamol and Xanax. Although the medication combined with complete rest have calmed me down more, the sever pain and symptoms are still persisting after 10 days on them and it’s a constant struggle for me and my mother hear in the flat as we are both looking for answers from any direction as to what we should be the ‘plan’.

Symptoms:

• Burning pain behind knee, travelling down to feet. Increases severely when knee is straightened.
• Sting pain behind knee, travelling down to ankle.
• Shooting electric pain.
• Feet feel like they are on fire and change temperature cold and hot abnormally.
• Feet change colour and get red and purplish with motty patches. (Goes when elevated). Lately my feet have started to get more redish and dry and hot throughout the day compared to cold white and sweaty in the previous weeks.
• Veins in foot inflame and throb and feel pressured – leading to heating up my toes.
• Intense muscle spasms which build up into crap in my calf going down to my toes.
• Irregular hear beat.
• Sometimes I describe my blood feeling like acid passing through my vains.

My symptoms have started to build up very slowly since January, only experiencing burning, heating of the feet, colour change etc a few time at night every now and again. Since the PT these symptoms have started to creep up more often and even throughout the day not just at night. Currently my symptoms are being experience constantly 24/7 and keep growing on me as time passes.

We are very aware of RSD and although no doctor has clearly indicated that I have it, there is a very good chance that I have it. My main worry is that I have been just over 5 months now and passed through a lot which have aggravated my pain and symptoms and feel like im hanging on the wrong side of the fence with time not on my side if it’s RSD.

Im just looking in every direction at the moment for answers and advice as to what I should if it’s RSD as I don’t want it to get too late since treatment in the first 6 months is critical.

Thanks all for reading and willing to listen to any advice and or precautions I should take at this stage to make sure I do my utmost in trying to have the best chance for remission in RSD.

Thanks a lot,

Nigel

Hello to everyone
 

I realize that this response comes many years after the question was asked but YES, RSD can and does (for many) spread. Drs. Robert Swartzman and Anthony Kirkpatrick (you can search for them online) can most likely provide you with written studies proving this. Dr. Swartzman is in PN and Dr. Kirkpatrick is in FL. Sometimes the disease never spreads (lucky folks) and others may not spread for years...others (like me) have very rapid spreading of this demonic disease. Mine began in Feb '09 and was full body by Dec '09. I was hospitalized in April of '10 with internal bleeding associated with the RSD.

Good luck,
Kathy:)

Hello
 

I am 16 years old and I was diagnosed in March with CRPS only after one month of the initial pain. They still aren't sure of what caused the pain in my arm but already 3 months late I am a lot better then before.
However due to this two other medical problems have come up so I am having to deal with that and school work.

But for right now I am really just wanting a place to talk to people who understand the pain and everything I am going through. While I know my parents and friends love me and know something is wrong the second hardest part of all this is the loneliness.

Hello everyone: I have had 7 breaks and countless sprains since the age of 19; at age 35 the ankle would no longer support my body weight, the pain was excruciating and falling down stairs seemed to be my new past time. This is what triggered me to seek out medical attention from the VA. It was discovered the ankle was in pretty bad shape and was in need of a total reconstructive surgery. When recovery was finished and rehab began I noticed that the ankle did not feel quite right. It seemed to always be cold, stiff and painful. When I brought these symptoms up to the doctor, his response was “it’s all in your head” This was in 2008.

By 2009 a podiatrist came into the picture and determined another surgery was necessary to fix my symptoms. X-rays showed osteoarthritis was present. By this time I had lost my job and was losing my home. I moved out of state and took up residence with my parents.

6 months later I am back at the VA, this time a fusion of the Right ankle is necessary, no more maintenance surgeries. Approximately 3 months after the fusion the foot become very angry and turns a bluish/deep burgundy color, it felt like an ice cube. This is when the Doctor’s got a clue. An EMG was ordered and a never conductor test; Results: severe nerve and muscle damage; Diagnosis: CRPS/RSD (go figure) Next step pain management.

1. We began this step with aggressive sympathetic nerve blocks (every two weeks) FAILED.

2. Directly Blocking the nerve (every three weeks) FAILED.

3. Now a Spinal Cord Stimulator is desired, unfortunately the VA’s standard rule is: any elective surgery the patient must have a mental health evaluation and the Physiologist must approve the procedure. FAILED

Reason: The mental health department does not believe that I understand my situation to the full extent and because of depression in the past (which I believe all who live with chronic pain become depressed) the worry is that I will spiral downhill if this final step (SCS) does not work.

Requirements for Approval: I must begin individual therapy and join group therapy for RSD sufferer’s so I can get a better understanding of my situation.

When I first heard this news I was very angry; how dare they deny me the right to try; then tell I don’t understand my situation. However, after reading through some of your posts it has occurred to me that I am completely in the dark about this disease. I had no clue, and I don’t believe that I have stopped crying all day.

I am sorry that this is such a long description of my life but, I have no one else to talk to, the doctors either don’t know what will happen or they have been refusing to tell me truth for fear of hurting my feelings.

Please tell me, what is going to happen to my body? As far as I can tell I have had it for 3 years and have entered stage 3 recently. Things have been happening fast; the blue/red freezing foot; a rash of some sort is on my toes and on the ball of my foot (does not itch) but, have become scaly and I have spots of paralyses. Will this disease invade all of my body eventually? How deformed will my limb get? I’ve seen the pictures; does that happen to all of us? Please help find the answers. I am completely lost.

Thank you so much for your time:
Angelique

New to this
 

I am a 34 year old female that just got diagnosed with CRPS. I had wrist surgery for osteochondritis and then in physical therapy, started noticing extreme pain. The therapist mentioned this disorder and it has been crazy ever since...I also have Keinbock's which is a bone that is dying in my wrist. My pain doctor told me that is the least of my concerns right now because we have to get my pain under control. I am doing ganglion nerve blocks every two weeks and just started on neurotin. That is a wicked drug. I only have the pain up to my elbow so we are hoping we caught it early enough. This is a scary thing to live with. I just started reading the other stories and I am finding encouragement from them. Good luck to everyone in their journey. :grouphug: