New here
 

Hi everyone :Wave-Hello:

My name is Shelly. I am 39 and was diagnosed with RSD around 6 months ago. It is in my left arm/hand. I know it may spread. I also have some post surgical nerve damage in that hand. I am right handed so at least at this point my dominant hand works correctly.

Prior to my doctor diagnosis I had 3 separate surgeries on my arm. It all started from a median nerve entrapment at the elbow. A year later I also had carpal tunnel in the same arm. The 3 surgeries were all in less than a year and a half.

I won't bore you with all the details of surgeries, therapies, etc. As time goes on I am sure I will fit in parts of the stories here and there.

I am an animal lover I have 1 dog a pit bull named Khan. I am training him to be my service dog. I have 5 cats ranging in age from 13 yrs old to 1 year old. I also have a chinchilla and a red eared slider turtle. My animals have really helped me keep it together.

Hi Shelly
 

Welcome to the Board!!!! :Wave-Hello: On behalf of a whole bunch of folks here, I am waving back at you. The bain thread pool of the RSD CRPS issues is found here, just click it and away you go to the forum.

http://neurotalk.psychcentral.com/forum21.html

My Sis has had the dread RSD for many years now, and some time ago, I posted on the RSD forum, above, at her request to share her history, ups, downs, trials of dealing with it. Now she has a dog who rides around on her motorized wheel chair with her serving her needs, and even helping her distinguish the proper pills to take at appropriate times throughout the day.

Your work training your Khan is Very Proactive and Brave as you approach dealing the ultimate needs for Khan to help you with a variety of issues.:) What a cool way to anticipate and cope!

The menagerie you have is VERY interesting sounding, and having grown up in the "West" where chinchilla's have been raised by many, I am glad to learn you are raising one as a cudly friend. Sounds rather like a Tribble from Star Trek fame.:) I will bet petting your little chinchilla brings comfort to you as well.

I am sad you have to cope with RSD and its post surgical manifestation, but you truly sound as though you have a good outlook! Kinda like Sis Terri. She still has the bright smile whenever I am able to make it to town to check up on her.

Wander on over to the RSD forum and check out the folks,
You will be Blessed that you did,
Caring deeply,
Mark56:hug:

Hi, Newbie here!
 

Hello,

My name is Emily (last name fake). I'm 29yrs old and a mother of 1 beautiful, sweet,smart,goofy little 7yr old.I was diagnosed with CRPS I, though i think it might be CRPS II. I've been having severe pain,cold,numbness, slight swelling. Mainly Just a LOT of pain. It seem to be progressing and getting worse not better. I know I am early in the "condition:" but this has started to severely impact my life.

ON 10/25/12 I (at my dr's office advice) went to the E.R. I was have Dysfunctional Uterine bleeding, possibly caused by a fibroid. Extreme cramps and SUPER heavy bleeding. TMI I know sorry. The doctor ordered a blood sample to see how much blood I'd lost and if I would need a transfusion. Well I didn't know it at the time, but it went horribly wrong.

3 different people tried to get a blood sample. The first did the most damage. He was either very very new, or still in training. Was very unsure of what he was doing and made me feel apprehensive. But everyone has to learn so I just tried to let him do his job. He put a blue rubber tourniquet on both arms. He put the left one on waaay too tight. I told him it was too tight but he said well it needs to be. He tried to get a draw from my right arm, but left the one on the left as well. I asked if we could take it off but he said he wanted to leave it one in case he needed to try that arm. I am no stranger to venipuncture so was confused at this. He fished around a bit in my right arm a ended up "blowing" my vein. A silver dollar sized bruise was left , and did not go away for a week or two. He started apologizing like crazy and went to go get someone else then came back and took off the tourniquets.
The second person was a female nurse. She was almost as bad and in a few ways worse then the first guy. She didn't wrench the tourniquet on, she fished around for about 10-15mins in my left elbow trying to shove the catheter tube into the vein. She kept saying "I don't understand. I'm getting flash back but it's not going in" I was complaining about the pain. I think she kept tapping a nerve (radial). I felt like an electric knife was stabbing my elbow.She was unsuccessful in my elbow and moved to the back of my left hand. Tried, fishing around more, for about 5 mins and finally went to get the charge nurse who was able to get a good draw from my right arm. I was given a shot of Dilaudid for the severe cramping so I didn't really notice my arm until it wore off the next day.
I'm sure you all can guess or relate to the following weeks. Being bounced back and forth from doctors to E.R. Getting the run around from the
hospitals insurance/risk management. Trying top get approved to see a Specialist for CRPS in Spokane. Their office wouldn't see me without approval from the claims department....ya. So that's my story insofar. Right now I just really want then to get my medication combination figured out, so I'm not in constant pain. It is really interfering with my life. My daughter is not getting her "normal" mommy. I try to keep a strong face for her but sometimes it;s really difficult when the pain is strong enough to make you cry. She really is a sweetheart and said "Mommy I'm prayering for you to get better" I wish she didn't have to see me like this.

I will say that having this forum. Has been an invaluable tool! It's so great to have a group of people who understand, Who know the the pain isn't all that CRPS does. It effects your family, work and relationships. Or just how other people either see you as overreacting or faking it for drugs, when you have legitimate (severe) pain. And even though the medication combo's are different for everyone, having different suggestions to what worked for them might be something that works for you. I had never even heard of this condition until this happened. Oh boy, do i wish I had the funds to make people aware how serious this condition is and start a foundation for those who need help recovering. Or some Center for research and treatment that could discover exactly how this condition starts ans how to cure it!! So even though I haven't gone through the total gambit yet, wow that feels daunting, I empathize a lot more with nerve disorders!! Nerve pain just plain SUCKS!

So thank you for reading the "book" lol and I truly want to say a great big THANK YOU!!!! To everyone out there lending and "hand or "ear" or just plain empathy.....truly THANK YOU!

It's nice not to feel alone!
:grouphug: :circlelove: :You-Rock::Thanx:

hello redraidermommy
 

I did read your post. I am glad you found Neuro Talk. Lots of understanding goes around on this site. There even may be more information about CRPS to direct you to better help. I have heard of Ketamine infusions, are starting to show some promise.
I answered you as well because I was not in the greatest health when my children were young either. You can only do your best. Your child will grow up with compassion. I really hope there is more help for your condition. Neuro talk will be here to listen anytime. ginnie:hug:

Hasty Introduction
 

Keeping it short ...
Diagnosed February 2008 with RSD/CRPS Type ii Stage 3 from my lower back to my toes (both sides) as a result of a fall in November 2004. It has progressed to me barely walking. I use a chair for anything beyond a few feet. Some symptoms include spasticity, Dystonia, week left side, eye pain I call eyegraines (my Doc calls migraines), bladder disfunction requiring regular catheterization, as well as other typical RSDCRPS symptoms. Have many heavy medications, as well as a baclofen pump in my belly that feeds a constant drip into my spine. Shouldn't, but do seek pity occasionally. I know; I am working on that.

Am a young Grandmother of 2 with one more on its way in January. Beauties and blessings each one.

Retired on Disability from the National Park Service in 2010. Loved that job. It took me many beautiful places and introduced me to numerous interesting and dedicated people.

Was a novice but chronic traveler, hiker and biker prior to 2008.

Deborah Hasty
Omaha Nebraska
Type ii Stage 3

Welcome Djhasty, I am sorry you have such a time with CRPS. May I ask how far you fell? Please feel free to look around, post questions, or answer others. We are all freinds here and learn from one another.

:hug:

Fell while roller blading
 

Sure. I fell while roller blading on the paved trails near my work (at the time). It really wasn't a big fall. I got overly confident while zipping along on the blades. I hit a twig or rock and went down on my left side. I landed on my left hip and caught myself with my hands. I did have all my safety gear on: helmet, elbow and knee pads, gloves. Yes it did hurt, but I figured the pain was my price to pay for trying to learn to roller blade at 40. Other than just plain being beat up, I had fractured my hip and squashed out some disk tissue at L5S1. That was in 2004. My diagnosis with RSDCRPS wasn't till 2008. Looking back though, I can see a lot of the earlier symptoms were dismissed as other ailments. My first diagnosis in 2008 was Dystonia. I couldn't control my left leg. That diagnosis was later changed to RSDCRPS. It took the right Doctor to figure it out. I was fortunate to have picked her out of the Yellow Pages. The diagnosis hit me from the blind side. I hadn't ever heard of RSDCRPS. I could add a lot more detail, but I believe all of us here can attest to that.

Glad to have found this forum. Hoping I can learn a few things. Doesn't seem to be very many, if any, RSDCRPS patients in the area where I live. In fact, not many of my Doctors have heard of the thing either. Looking to share too.

So the answer to your question is a few feet then a tumble.

Thank you.

New Member daughter with RSD for years
 

Hello,
My daughter has full blown RSD head to toe. She just saw a dr at Drexel in Phila who wants to put her in a 5 day coma in a South American Country. Insurance will not cover. It took 3 years to get this appt, (was orginally for me, I was misdiagnosed with RSD for 10 years. My RSD was really Chairi.)

My daughter has been ill since middle school and is now in college. She needs relief. S/S: full body pan, rash, mottled skin, feet bluish, cold extremities, headache nonstop for at least 5 years. She has been to the "best". One dr at NY Presby said she will never be able to work FT nor would she be able to go to college. NEED ANSWERS.

I am brand new and finding it difficult to navigate around.... I just saw a dr.... re: spinal implant consult of St. Jude Model... and am very confused and concerned

Welcome, I am new also. Sorry I cannot answer your question, but I am sure someone here can. Hugs

Welcome newbees
 

Welcome to Neuro Talk. This site has lot of different forums. Just take your time with navagation. After three years I am still learning. Nothing you tap can hurt anything so go ahead and explore. You can answer any post you want.
I understand your both have CRPS or RSD. I have PN which isn't as painful, but not so good either. Lots of support here, and if you need questions answered just post them. Newest therapy I know about for this was done by our military, with infusions of Ketamine. Some remissions reported. Many folks who have the condition will answer you in time. You make some friends here for sure. I wish you all the best in the New year, and less pain. ginnie:hug::grouphug::)

Hello I am a Newbee...A quick BIO- I was in a car accident in 2008. Ended up with a very rare disorder in my right foot. Fast forward... too many surgeries & Ice Packs and I was sent to a Pain Specialist by my frustrated Foot Dr in 2009. After a triple Phase Bone Scan I was diagnosed with RSD. Kdoser

Welcome to neuortalk. Sorry to hear you have RSD, but you are welcome in our group (family). Feel free to chime in.

hello!
 

My story started in 2004 with a simple left knee operation that refused to heal. I am one of the lucky ones who got a dx within 3 months, by going over my orthos head for a second opinion. Even so, I'd experience such rapid atrophy that my thigh muscles were producing near zero electro activity and it took 18 months of pt for me to learn to walk again. Since then, I've had 12 lsb, sometimes with remissions; developed allergies to neuronin and lidocaine; lost and regained use of my hamstring; and as the rsd moved upward, developed asthma, tummy problems, and allergies to everything.
My latest flare has encompassed my whole body and the neuros have decided it is fibromyalgia. Just started adding cymbalta to my drug cocktail. I still work, though do little else these days. My husband is a saint! I miss riding my horse and gardening, and hoping for better days ahead :-)

New member introduction
 

I have been reading posts on this site for the last 3 weeks when my insomnia and high pain kick in and have finally decided to post about how my diagnosis of CRPS came about.
I had 6 ankle/foot surgeries (same leg) in about a 12 year time span, The last surgery was a double arthrodesis. Did fine for about 5 years, then fell off the walkway to my house ( only 2" tall) and really twisted my ankle. Had the usual x-rays, MRI scans, in a boot for 6 wks, casted for 8 wks, still not healing.
I was then sent to a trauma surgeon who then told me I was in BIG trouble. Oh Yea ! When all was said and done, I went in to surgery#7 for 7+ hours, had 13 screws, 8 fractures, 5 bone fusions and now a triple arthrodesis.
Now I have no wt bearing for 16 wks, went in to get cast removed, bones not healing, 4 more weeks in cast. After that time he took the cast off and I started PT. Only allowed to WT bear in the pool. Well I spent 53 weeks in therapy, at the end I could wt bear/walk for 15 mins max with crutches. Next 3 visits to surgeon no change, x-rays a tiny bit better, the fusions did take well. So now I can walk 10 ft without crutches but need things to balance against, since I have no balance at all.
My surgeon sends me to an Anesthesia pain Dr. 4 weeks ago, after a physical and review of all tests, diagnosed with CRPS. I have had 3 lumbar sympathetic nerve blocks, and the 3rd block was a breakthru, 15 mins later you could see my blue foot actually get pink and instantly warmer.
So, where I stand( well no, actually sit in my wheelchair) I will have the nerve blocks once a weekfor now and started on Lyrica 300 mg day and have had good results with the nerve pain and burning. Unfortunately the deep i call it dark pain is still present, even with Tramadol 6x a day. So I am going to ask Dr about meds for the break thru pain. He wants to start PT again while I have the nerve blocks so that will probably start next week, My BIG concern now is that my left knee is now getting really stiff and if I flex to much painful, concerned that the CRPS is creeping up. So now for the past 18months I have been dependent on my wheelchair for any activities outside the house, and am very fortunate that I can get out of the house of course usually for Dr appointments. :)
Sorry for such a long explanation but this is my story.

Try This!! New Treatment!
 

So happy that I am able to spread the word to fellow RSD/CRPS'ers. :)
My mother suffers from CRPS in her left leg. Cannot explain to you how badly this has changed her life and ours. Her pain is just to much to handle. Up until now the pain and depression had taken over her life. We were researching Ketamine treatments, we're desperate. It was that time that I prayed and received an email the next day!
Has anyone heard of Calmare Pain Therapy Treatment!?
Its new, developed in Italy.
There are currently only 20 of the machines in the US.
I was lucky enough to get my mother into the only doctor located on the West Coast.
She had consult yesterday
and her first treatment today!
She literally went from a 8-9 pain to walking out pain free!!
Wow is all I can say.
You can research it, but basically it scrambles the brain. It re-programs the brain that there is no pain there.
Its non invasive, no side effects and ITS NOT PAIN FULL!
Usually it consists of 10-12 treatments 45 min
these are done every day.
The pain is gone immediately and lasts for a few hours.
Gradually the pain comes back
However, each day the therapy is done it comes back less and less
until finally, its gone completely or at a 1-2.
Some people have gone 3 months pain free to 1 year!
If the pain comes back, you simply go back in for a booster treatment!
This is such a MAJOR breakthrough for people with the chronic pain condition and my mom is proof!! SO exciting I had to share the success. and did I mention its something like 91% effective!! :D:D:D:D:D:D:D:D:D

New Member Intro..
 

Hello,
This is my introduction to the board.. and CRPS is what brought me here, so this is where I’ll introduce myself. I’m 29 years old and I was diagnosed with CRPS about 3 months ago, although I’ve had symptoms for about 6 months. I’ve had a series of injuries that relate to this.. I’ll attempt a cliff notes version.

In Feb 2012, my great dane took a flying leap onto my bed from 6 feet away and landed on my left knee. (Feel free to laugh!) For all the swelling and bruising, some popping, many diagnostics later.. the diagnosis was a bad contusion with fat pad impingement – which is a common runner’s injury but can occur with trauma. Steroid injection, 6 weeks or so of PT and I was ALMOST walking normally again.

I went from “light duty” to normal function at work, and was almost instantly injured on the job. A large dog dragged me, resulting in an MCL injury on my right knee, and a re-sprain of my left. My employer (who thank goodness I no longer work for) gave me a very hard time about filing for W.C. and treated me differently from that day forward. Same things.. MRI, joint injection, more PT this time on BOTH “KNEES & HIPS”. Following the incident at work, I was using crutches like a walker. Both of my hip joints were popping constantly (still do). Finally, I did the things that helped strengthen my legs and get me back to as close to normal as I had been. I took a leap and after some really horrible things happening at work, I left that job to begin searching for greener pastures. I then began riding my horse again- the thing that makes my happier than anything in the world.

After a month or so, I was strong enough to attempt the focus of my discipline – jumping. A freak accident resulted in a very bad fall. When I landed, my 1400lb horse galloped over my left knee. My first thoughts were “This can’t be happening..”. My boot was cut off my leg, and I was carried into the car and off to the ER I went. Somehow, she did not fracture anything. I also learned that I had attempted to catch my fall with my left thumb.. bad idea. That was casted. I lived with an immobilizer on the leg and cast on the hand (same side) trying to use crutches for the first week (Does not work very well). The pain and swelling in my leg was intense.
If you’ve read this far.. you’re amazing.. so I’m going to fast forward. My surgeon was very slow and conservative about everything. I finally started PT formally after 3 months and my CRPS symptoms had started.. but he had not diagnosed it as such yet, because he was focused on the fact that my pain could be coming from my crushed saphenous nerve (runs along the inside of the knee). I asked for a referral to pain management and he asked me to wait and see what PT did for me. (What does that have to do with anything? PT is great.. but it is great in combination WITH pain management..) 4 months later I FINALLY had an MRI. Findings were: severe bone bruising of both tibia and femur, sub-q fluid in the tissue all over the inside of my knee, fluid under my patella, damage to my medial meniscus, and bone marrow edema . (Two of those consistent with the crushed saphenous nerve). By this time, my symptoms were becoming far worse and at an alarming rate. The symptoms were also spreading to my right leg, and within the next month started to move to the left thumb. I have burning pain, swelling, intermittent color changes, electrical sensation (like BAD pins and needles or being stung). On the left leg, the entire are that was crushed is very abnormal and hypersensitive. Blankets, tight clothing, shaving, lotion – hurts HURTS.

Worst of all and this ruins my nights is HEAT. I know that not all of us CRPS patients are alike and some of us have sensitivity to heat & cold. For me, it is heat.. and I am greatly helped my icing my knees.. JUST my knees. When I shower.. my legs turn into an interesting water painting.. flaming red at the knees, then splotches of red, purple streaks, and very purple toes. When I’m cooking.. standing at the oven brings on the causalgia and suddenly I’m on fire. I can’t put heat on in the car on my feet, no matter how frozen, because it will ruin me for hours – potentially the rest of the day. Starting in the afternoon, as the pain worsens, I ice whenever I have to. At night.. to get to sleep.. I literally have to ice both knees to the point of being numb.. then hope to get to sleep before they start burning again (5 minute window).

I am finally in treatment with a great Anesthesia trained Pain Management doctor who I’m liking very much.. her whole staff has been wonderful. My Therapy at the moment is formal PT once per week but twice more on my own, weekly Lumbar Sympathetic Blocks (bilateral - I just had #2), and medications. The results of my first LSB were extremely good, and second one not very good at all despite great pictures on the fluoro and temp readings (all proof of success in technical terms). I’m trying with all my might not to be discouraged.. but I don’t know how to stop myself. Tonight is a very bad night on the pain scale.

Meds are: Gabapentin.. still being titrated. Frustratingly my surgeon had me at a stupidly low dose that wasn’t touching my nerve pain. So I just got up to my therapeutic dose of 2400. Tramadol which I take as needed at night only. Zanaflex for muscle spasms in my back. Amitriptyline + Topamax for migraines. I have athsma as well.. and I found it interesting to hear from my doctor that both migraines and athsma are shown to be predisposing factors for CRPS.

I tried to make this “Cliff Notes” and it ended up as a novel. My apologies! If anyone else is going through or has gone through LSB’s.. would love to hear some more feedback. Also interested in others that have CRPS in knees. Happy to have found this board!

Cheers,
A

Welcome to the boards, I also am fairly new. I did laugh when you described your Great Dane jumping on your bed. I have a Newfoundland puppy who just turned 1 yr old last week and right now is about 140 lbs and still has about 30-40 lbs to grow and he thinks it is totally acceptable to be a lap dog. However in his defense he has never seen me without using crutches or my wheelchair so he is very gentle when I am upright, but no rules seem to apply if I am sitting on the floor.

10 Days ago I had my 4th LSB. I have had great but short lived results, it is kind of like magic to see my blue foot turn pink and warm up within minutes of the treatment. My CRPS started in my foot and ankle and we have concerns that is is spreading up the leg, will have a better answer on Wednesday. I do therapy 2x week one day in the 100 degree heated pool.

I wish you luck and support with your treatments.
Bye, Kim

Also laughing..
 

Hi Kim,

I love newfies. : ) I'm sure your big lap dog makes you smile and laugh plenty, on days that you're hurting, as my dane does for me. These gentle giants are very perceptive about SOME things.. knowing their size-- not so much. I'm glad to hear that you have had good results with your LSB treatments. I went back and re-read your story.. absolutely terrible what you've been through! May I ask.. why the first 6 ankle surgeries? You must dread the thought of surgeons in general, at this point. Or at least I might.

A

A,

Welcome to the forum, this is a great place to be for RSD'ers. There is a special group here. We learn from each other. Feel free to ask questions, post reply's or just read threads.

I am sorry for the continous injuries to your knee's and overall sadden by the fact that you have ended up with RSD. I would like to point out to you that "ICE" is a big NO NO for people with RSD, because it can cause spread and ultimately increase pain. I know you are heat intolerable for now, but try and do without it to limit further spread.

As far as LSB's I have had lots of them and it wasn't until my doctor started doing them weekly. The bad thing is there is a limit to how many you can get and eventually they just stop working.

Hello Alt..

Thank you for the welcome and the kind words. I have just begun to understand (yes, through this forum) the dangers of ice therapy with CRPS. I feel sick realizing what I've been doing to myself. All along I've felt that it was odd how much of the ice I felt I needed.. and how "responsive" the swelling and pain was to it. I checked again and again with each surgeon and physical therapist that I've had. "Keep icing if it helps and as long as you avoid thermal burn". Now that I have a pain specialist.. I would have hoped that she would have warned me from my dangerous habit. I made her aware of my need for ice as well, weeks ago when I started to see her. I will be contacting her about this.. as I'm quite upset.
I've just read this article.. and the last paragraph or so in particular makes complete sense, in a very real and painful way to me. I am very concerned about damage that I may have already done.

(Ice and Crps article on the RSD hope site.. I'm not allowed to post a link yet and had to remove it. : (

Again, however disturbing.. every bit of information is powerful. I want to fight this with everything I have.

A

Hi Djhasty..

I insist on being sock-less around the house until extreme cold.. then just thin socks. I can only wear very thin pants at night.. my scrub pants, due to the burning.. and I have to pull the blankets completely away from my legs. My doctor just prescribed a Ketamine topical cream.. it was in combination with a few other things.. my insurance wouldn't cover what she wanted, sadly. So they suggested something "similar" and are asking the doctor if she'll OK that. Waiting.. waiting waiting.
I love hearing that many of us have a dog at home to cheer us up. They're so amazing. I love your dachshund's name! : ) My dane is not an assist dog at this point.. but I know that she would certainly try. I can lean on her shoulders on the icy driveway and she doesn't mind.. so I do appreciate that.

A

Djhasty

The whole concept do CRPS developing in stages (called "staging") is out of date. It worries me somewhat that your doctor has told you that you are in"stage 3". All of the modern texts and thinking on CRPS is that the myriad of different symptoms will develop in different people at different times and they don't follow a pattern which correlates in any way to the historically defined different stages. I raise this not to be smart but because it raises a question mark about how up-to-date and current your doctors knowledge actually is.

I can't recommend strongly enough that you do a bit of reading up from reputable sources like the RSDSA.org website and you will understand where I am coming from. Over the past few years there has been quite a bit more research and effort that has gone into CRPS and larger studies have taken place looking at the way in which the condition can progress over the short, medium and long term. This has increased understanding of the condition and is one reason why staging has been discredited. It's really important that your doctor is fully up to date with the latest thinking so that you can get the best care.

You also need to expect that you are going to have to be your own advocate. You will sooner or later discover that doctors' hearts sink when they have CRPS patients because they don't have a nice quick cure to offer that gets rid of us!! It's important to get rapidly familiar with the condition and the various treatment options. Places like this are great but its important to get the basics and refresh your knowledge periodically from reputable, medical sources. If you don't feel up to reading the research papers or medical journals then i think the next best place to look is RSDSA.org - they have recently expanded their resources library and it has a wealth of reliable information.

A properly informed patient is much harder to fob off or ignore and you are less likely to miss out on potentially helpful drugs or other treatments because you can be suggesting them to your doctor rather than waiting and hoping he will mention them - the worst thing you can do is assume your doctor actually knows best! You will also need to be able to tell when a doctor or other health professional doesn't actually know much about CRPS - many profess to be knowledgable but aren't. The more knowledge you have, the easier it is to spot and then get rid of these people because they will be no help to you and may actively make things worse.

Stages of severity not time
 

[QUOTE=Neurochic;952342]Djhasty
The whole concept do CRPS developing in stages (called "staging") is out of date. It worries me somewhat that your doctor has told you that you are in"stage 3". All of the modern texts and thinking on CRPS is that the myriad of different symptoms will develop in different people at different times and they don't follow a pattern which correlates in any way to the historically defined different stages. I raise this not to be smart but because it raises a question mark about how up-to-date and current your doctors knowledge actually is. /QUOTE]

I agree with much of what you said here.

I realize that government run institutions can be behind. Unfortunately, this NIH site describes me quite well. ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm

In stage three the syndrome progresses to the point where changes in the skin and bone are no longer reversible. Pain becomes unyielding and may involve the entire limb or affected area. There may be marked muscle loss (atrophy), severely limited mobility, and involuntary contractions of the muscles and tendons that flex the joints. Limbs may become contorted.

I believe the stages noted on this NIH site and used by my Neurologist indicate severity of symptoms, rather than measurements of time. Short, medium, and long-term periods of affliction are not a consideration. Most likely acute, dystrophic, and atrophic are at issue, with the final stage also in the atrophic stage but involving the internal organs. A quick search on the web brings back lists of sites noting the stages of RSD/CRPS. The accuracy of the information can remain a debate here. As you note, it is up to each of us to do our homework, and not everything we read on the net is up-to-date and accurate. Also, in my case, when being considered for disability, stage (severity) of the disorder was taken into consideration by the reviewing committee. That was 2 plus years ago.

The RSDSA.org site does contain a lot of really good information. I agree. I have used it extensively, especially at the time of diagnosis. Anyone can use this resource to find valuable information.

Here in mid-size Omaha, I feel my best bet is with the University of Nebraska Medical Center and my Doctor who is a Board Certified Neurologist. She diagnosed me before I had heard of it. I believe her view to be up-to-date. As far as being on the cusp with experimentation regarding CRPS, maybe not. I do believe she is providing me the best care that Omaha has to offer.

I admit I am not always my best advocate. Much of it was my own denial. I left the Doctor's office stunned and confused. When I look back, I believe I have had CRPS for much longer than anyone has expected. I had/have many of the symptoms. Medical tests showed it. 2 plus 2 didn't happen for me until it was almost too late. Without proper medical care, what started in my left foot, took over my left side including my eye, both feet, legs, hips, and bladder.

Neurochic, your input is always valuable. I enjoy reading your responses. Thank you for taking the time.

Hi neurochic
 

Thank you for your post. I just want to add one thing.
What you said about being an informed person, goes for all conditions. As patients we owe it to ourselves to talk to our physicians armed with all the knowledge we can muster. You are right, they are less likely to push us aside. I learned this lesson the hard way by not questioning a neruosurgeon and reading my own records. Your post was great. ginnie

Hi my name is mike and i am 28 years old. I was currently diagnosed with Rsd of having it for the better part of 4 years. Everyone i talked to didn't believe me when i was telling them of how badly my pain was i mean in fact the funny part one orthopedic doc i had laughed at me and said to me i didn't know what i was talking about and that i was lying to his face! He said there is no way possible that i could have all these pains in random places at my age, that i was just milking the process because i was reluctant to work. Well that was 4 years ago like i said from the start so after that i was transferred to another orthopedic doc and he said that i had a little tear in my right shoulder of my labium i think that is how you spell it, well anyways i had surgery before on my right shoulder before and had 2 anchors placed in there to hold my rotator cuff in place. So at this point the doc thought that this was just a recurring injury so he tried to send me back to work while sending me to a RA Pains specialist. While seeing the specialist they sent me to physical therapy and aqua therapy and all the mean while my pain was intensifying and getting so much worse with my mobility. So they cut me off and said that i am just at my maximum treatment that they couldn't do anything further. So now i am still fighting the oh so reluctant Workman Comp trying to get my benefits back and stop them from fighting me to get these treatments down that i need. I am currently inline for keteamine infusion and blockage or the spinal infusion thing with the blockage with a pump implanted in my abdomen. I am in so much pain but i have gotten so used to the pain over the 4 years of having this but i just get so depressed because of everything that i used to do i am not able to, my rsd has gotten worse to the point to were i have a hard time taking a shower because of my pain. It has gone from just one hand and arm swelling and color changes to both arms, hands, and both legs now. There times that i just feel so helpless and all my friends just say i am just being mellow dramatic plz if u have anything opinions anything please tell me what i can do about this. Thank you for listening to me.

Our Stories & Introductions
 

Hi all!
I'm 53, married with 2 sons, 1 grandaughter. I'm a professinal female in a customer service job.
I fell & broke my wrist 12-22-12 & had surgery on 12-28-12. I developed "complications" within 1-2 weeks and was diagnosed with CRPS finally 4 wks later with help of my P.T. alerting my surgeon.
I have all the "classic" symptoms. I was referred to pain mgt. Dr. but later found a better one. I have been given a whole coctail of drugs to take of course and am waiting for my 4th nerve block. However, the 1st one failed because they hit arteries twice (only x-ray guided) and caused too much bleeding. That's when I searched out another pain Dr. who uses both ultrasound and x-ray guided nerve block.
I'm horrible and slow at keyboarding now and that is a main portion of my job so I have not been able to return yet and I'm really afraid about that among other things.
I hope to offer support to fellow sufferers here and learn from others and share what I'm learning. CRPS is so frustrating!

Hi, everyone!

I am new to this forum, so hope I don't mess up trying to send my message...

I am 66, married with 3 children and 5 granddaughters. I now live in Ocala, FL, after growing up and living in the Washington, D. C. area for most of my life.

I am new to CRPS. Let me say right away that I feel very fortunate that I have a very, very mild case after reading some of your postings.

I had thumb joint replacement surgery 7/31/12 on my left hand. I started with hand therapy 2 days after surgery. After a month, both of the hand therapists I had seen suspected I had CRPS and started me doing the exercises that would help treat it. One of them called my surgeon and moved my appointment with him up a whole week so he could see my hand and confirm their suspicions of CRPS.

My surgeon started me on Gabapentin (Neurontin) and increased the dose very slowly to 300 mg 3xday, which I understand is pretty much a normal dose. I had a very shiney hand that would sweat with any exercise, even my individual fingers, which was really weird. The pain and swelling I was having were more than I should have been having from this surgery, which I had just had 7 months earlier on my right hand. My hand was usually very hot and a mottled red. I had sensitivity around the scar and on my forearm near my wrist. Those were pretty much all the symptoms I had. Oh, yes. I did have some weird hair growth on both forearms with dark hair growing wildly. It isn't that noticeable, so short of shaving my forearms and hoping the hair grows in normally, I don't know what to do about that. I also had 3-4 hairs on the outside part of my left eyebrow that grew straight up towards my hairline and were very coarse. I yanked those suckers out as soon as I noticed them!

Now, 7 1/2 months later, the only symptoms that are left of the CRPS are a shiney and waxey looking left hand with minor sensitivity around my wrist, and sometimes my hand will get very hot or very cold. Also, those same symptoms have now spread to my right hand. My surgeon told me the best treatment is to use my hands as much as possible, which I am doing.

I also notice that since my last surgery, my face will suddenly get very hot (it feels like a high fever coming on) and my cheeks turn bright red. Looks like I've been out in the hot Florida sun, but I haven't. This will last for a few hours and then goes away. Does anyone else experience anything like this?

I'm hoping my surgeon will transfer me to another doctor closer to my home at my next visit to him. My pain management doctor would probably be best.

I learned here that you never really ever get rid of CRPS once you have it. I'm wondering if any of you have had it spread to another part of your body? I have severe arthritis in my left knee which I've been successfully getting shots for, and a really bad back which I have had 3 epidurals and 2 shots in the facet joints over the last 10 months. I'm going to have Radiofrequency Lesioning in my back in 6 weeks, so I just have to get through that time the best I can using what coping skills I have learned. I do wonder, and I have asked my pain management doc, if the nerve pain I'm experiencing caused by my back could be from CRPS. He says no, but I know that not a whole lot is known about CRPS, so while I do trust my doctor, I just keep wondering.

I also have something called Interstitial Cystitis, which is a bladder disorder where the nerves between my bladder and my brain are not communicating correctly. I started taking Gabapentin just in time to keep me from having to have an Interstim device (like a pacemaker for your bladder) surgically implanted in my back.

Sorry this was so long! It's just so nice to have a place where I can kind of unload some of my worries and pick your brains about how to handle some of my problems/worries.

Thanks for listening.

Janet

Hello everyone!

I'm a 22-year-old third-year student at UC Merced, recently diagnosed with RSD. My pain started about four years ago in my right wrist from overuse syndrome. After enough time had passed for me to get decent at writing with my left hand, it spread to that wrist too. In both arms, I have overuse syndrome, tendinitis, de Quervain's syndrome, carpal tunnel, and cubital tunnel. I saw an orthopedist today and got a cortisone injection in my right wrist's tendon sheath, and was referred to an orthopedic therapist.

Nucynta and Lidoderm are my current pain medications, with Mobic to help with inflammation.

I'm here to learn anything I can in the realm of coping skills!

Orthopedic therapists may not be very knowledgeable about RSD. Do some research urself *admin edit*and don't be shy about taking information to your therapist. Any good therapist will appreciate adding to her knowledge. and remember NO ICE. cailinruaidh

Frustration
 

You sound so tired of all the fighting to get what you need and the frustration of doctors being ignorant about RSD. We all hear you and sympathize. Many of us have been through it. It seems that you are on the cusp now of finally getting the treatment you need and I hope that you do.
You can justly be proud of this achievement. Being a fighter will stand you in good stead with this disease. Hopefully it won't always be so difficult to get the treatment but you will always have to fight the RSD. If you feel you need an anti-depressant, I have found Cymbalta to be great, not just for the depression but for pain too. Just a thought. cailinruaidh

#513 re Therapists and RSD. The RSDSA has resources for therapists which are great. They also have a therapist called Melanie Swan who has done a lot of work putting RSD protocols for other therapists together and videos of her work are available.
The biggest no-no as I said is ice which is often usually used to reduce inflammation and swelling, or alternate immersion in hot and then cold water for the same reason. An uninformed therapist could unintentionally do a lot of damage, so it is important to work with them and share your knowledge. Kind regards, cailinruaidh

Podsantus I've had some further time to think about your dilemma, Mike. I've had the same problem with the shower. I stand back from the stream of water and use a baby sponge (pharmacy). If' I'm tired, I sit on a stool or shower-chair (medical supplies/internet), and use a plastic jug to rinse my hair. But whenever I can now, I take a bath with 2 good handfuls of Epsom salts to relieve inflammation (pharmacy or some grocery stores). Add some lavender from the health food store for relaxation/sleep or sandalwood to raise your spirits. Experiment with other oils. Keep warm after the bath and get to bed quickly for a good night's sleep.
Arn't you on some drugs while your doctor decides what to do next? There are Ketamine creams you can rub into your skin, various pain drugs in patches, anti-seizure meds etc. You don't mention any drugs.
Get a referral to a psychologist or counselor who specializes in pain to talk over the big changes ans in your life.This is especially important if you're not getting support from friends and family. The RSDSA keeps a list of Support Groups in different areas. If there isn't one, find out if the American Pain Association or Fibromyalgia or Trigeminal Neuralgia have support groups who meet. Your local hospital may have a list of groups.
Show your friends some information from the RSDSA to see if that opens their minds a bit. Take them to a support group meeting ot even to a doctor's appointment.
Unfortunately I tried all all of the above with my family and best friend and nothing worked. But at least I tried. I don't see much of them now. You will make friends with new people who understand your situation. In the meantime, use the internet to share your life. There are many good pain groups who will be delighted to hear from you, and people like yourself on Twitter and Facebook.
RSD is a life-changing event but strangely I'm happier now than I was 5-10 years ago in spite of leaving a husband, friends and family behind. cailinruaidh

Podsantus
 

[QUOTE=cailinruaidh;969235]Podsantus I've had some further time to think about your dilemma, Mike. I've had the same problem with the shower. I stand back from the stream of water and use a baby sponge (pharmacy). If' I'm tired, I sit on a stool or shower-chair (medical supplies/internet), and use a plastic jug to rinse my hair. But whenever I can now, I take a bath with 2 good handfuls of Epsom salts to relieve inflammation (pharmacy or some grocery stores). Add some lavender from the health food store for relaxation/sleep or sandalwood to raise your spirits. Experiment with other oils. Keep warm after the bath and get to bed quickly for a good night's sleep.
Arn't you on some drugs while your doctor decides what to do next? There are Ketamine creams you can rub into your skin, various pain drugs in patches, anti-seizure meds etc. You don't mention any drugs.
Get a referral to a psychologist or counselor who specializes in pain to talk over the big changes ans in your life.This is especially important if you're not getting support from friends and family. The RSDSA keeps a list of Support Groups in different areas. If there isn't one, find out if the American Pain Association or Fibromyalgia or Trigeminal Neuralgia have support groups who meet. Your local hospital may have a list of groups.
Show your friends some information from the RSDSA to see if that opens their minds a bit. Take them to a support group meeting ot even to a doctor's appointment.
Unfortunately I tried all all of the above with my family and best friend and nothing worked. But at least I tried. I don't see much of them now. You will make friends with new people who understand your situation. In the meantime, use the internet to share your life. There are many good pain groups who will be delighted to hear from you, and people like yourself on Twitter and Facebook. Write to us again.
RSD is a life-changing event but strangely I'm happier now than I was 5-10 years ago in spite of leaving a husband, friends and family behind. cailinruaidh

Hi,
My name is Pepper and I have CRPS in my left ankle and foot, and I have a suspicion it is moving to my right ankle and foot. I say I have a suspicion, since neither my podiatrist nor pain management doc agree with me, although my right is feeling a bit stiff from day to day. I knew absolutely nothing about CRPS a year and a half ago, when I developed it after I broke my left ankle and foot for a second time falling down some hotel stairs. The first time was just before a job interview when I fell down some cement stairs, which also caused me to sprain my right ankle. I have also torn ligaments in the left ankle back in high school, which was many years ago.
When an orthopedist saw me the second time I broke my ankle and foot, he declared me "cured" after wearing two different boot casts for 4 months. My ankle and foot were still swollen, but he said he saw nothing interesting or anything to worry about and told me to go back to the shorter boot (up to my knee), and try wearing that for another couple of months. Okay, I took nursing classes at university, and I knew there was something else going on, so I sought out another orthopedic doc. He put me in an unna boot for a week, and took x-rays he said showed nothing. After a week my swelling was still there, and my foot had red splotches on it. He said I had CRPS, and he didn't know what to do about it! What?
So I went to a podiatrist I found who put CRPS on his treatment list on his website. He took x-rays right away, and found there was a "body" (piece of broken bone) in my ankle. Neither of the other docs caught it, but it was obvious in his x-rays. He said normally he would remove it, but he also said I had CRPS and didn't want to make things worse, so he referred me to another doc in his office who only dealt with CRPS. She then gave me a nerve conduction test, which was negative, a bone scan that was negative, and an MRI that was negative. I met with both docs after all the tests, and even though they found nothing, they agreed it was CRPS, since my foot and ankle were still swollen, very painful (even to the touch), and had red splotches on it. They said, and I have learned, even though those tests came back negative, CRPS could be and was still present.
I was then sent to an anesthesiologist who has been giving me sympathetic lumbar blocks for over 14 months, and prescribed a cream, with ketamine, lidocaine, clonidine, gabapentin, and some other meds, which I was using about 6-8 times during the day. There was some relief, but we kept up the nerve blocks, since I would get some relief for about 4 weeks at a time. The last time I had a lumbar block, about three weeks ago, I didn't get hardly any relief at all, and I had an appointment with the podiatrist, so I mentioned it to her. She then gave me a most painful shot of cortisone in my ankle, slapped an unna boot on it, and told me to see her in 4 weeks, even though she didn't think she could do more than that for me. The shot caused a great deal more pain than I already had, so needless to say, I won't be going back to her.
I called my pain management doc and left a message for his nurse regarding the last lumbar shot and the cortisone shot, and included I was in some severe pain. I didn't get a call back for several days, so I called again, and when she called back, the same day this time, she said she had given the message to my doc and they would get back with me when he responded. When I finally got a call back, a few days later (this took a week and a half!), I was told he wanted me to come by his office for a consultation on what to do next, what my options would be. The kicker is the appointment was a month later! I have no oral pain meds (he doesn't believe they work), and I have been in pain, though the degrees of pain vary dependent upon my activities, or just when I'm not sitting with my ankle and foot propped up. Once I even got out of bed, just after a four hour sleep (I don't sleep a lot, which oddly doesn't bother me), and I couldn't walk on it.
I do have my cream, which I have been putting on about 6-8 times a day, but my pain just continues, although at different levels.
I have heard about ketamine infusions, outpatient and inpatient, and I don't believe my pain doc performs them, but I'm not sure till I see him about three (OMG) weeks from now. I did get in the internet to see if a doc in Nashville performed these infusions, since we have Vanderbilt Hospital, which is always on the cutting edge and performs lots of procedures most hospitals around the country don't.
After searching the Vanderbilt website, I found nothing about ketamine infusions. I have searched ketamine infusions in the state of Tennessee, but find nothing. I have read about others in Florida, Oregon, and California, and I think one in Pennsylvania, but have yet to find one here.
I am pretty desperate right now. I also have fibromyalgia, which has been flaring up (no surprise there), and so I have quite a bit of pain every day.
Does anyone here know of a hospital or doctor in Tennessee who performs the ketamine infusions? I have read they have a high success rate, and I have responded well, up until recently, to the lumbar shots, even if it was for only 4 weeks.
I have been reading the posts here for a while (sorry I didn't sign up till now), and on other sites these infusions really have helped quite a few people.
Any advice or information would be awesome!
Seems there are some really great people here, so that is why I've joined this board.

BTW, so sorry that was a long story! I also haven't been able to find a support group in the Nashville area, so I guess I had to spill it all out here. Also, my husband is tired of hearing about all this, and I don't have any real friends here; Long story cut short, I have lots of interests, but one isn't church or religion (which is huge meeting place in my area), although I wish it was, might help, and the other interests, my love of different types of music, movies, my love of writing, and so forth, don't appeal to women in my age group, or anyone I've met here period. I feel a bit lost.
Thanks for reading! :)

Oh sorry! I forgot to mention I don't tolerate Lyrica, savella or Cymbalta.
I got no relief from oral gabapentin or clonidine. I haven't tried opiates for over a year, since I took them for fibro, but I gave them up since the dosage got higher and higher, and I was afraid I was beginning to get too dependent on them. I have also read a lot about how they don't really help.
So I have gone through some meds to be sure!

Hi Pepper
 

I have several Ideas for you to find out about Ketamine infusions. If you have a teaching hospital, contact the patients advocacy person. Also on the internet, there may be a contact for American Medical Association. There also may be help through your local library to find resources. I can't believe your state would not have this type of medicine available to you.
I had two ketamine infusions in my neck which did help. Different problem, but I did get some relief before my spinal fusions. I wish you all the best. ginnie

Thank you ginnie! I should have thought to contact the patient's advocacy person! Glad you brought that up! :)
I will also look up the AMA. I didn't think of that either. I was busy just Googling where to get a ketamine infusion in TN, and other thoughts along the same lines.
Thank you for responding! I have heard good things about the infusions.

Hi peppercross
 

Let me know if you find something out about Ketamine. Somebody on Neuro Talk always has some ideas. It is important not to run out of hope. Keep plugging away to get the treatment you need. Ketamine has been used alot in our military, for wounded vets. There have been some good results for RSD and CRPS. The American Journal of Medicine also has published some results. I am in your corner. ginnie:hug: