Shari what part of Western Canada are you in? I am also in Western Canada-Castlegar BC.

New Here
 

My names is Kathy and was diagnosed with CRPS in early OCtober 2011. I had arthroscopic shoulder surgery on April 1, 2011 to repair a labrum tear, rotator cuff tear and an impingement. The surgery went well. However, afterwards, I had severe swelling and pain. This prevented me from progressing in PT. I had been given 3 months of anti-inflammatories and 2 cortisone shots but nothing really helped.

In July, the surgeon suspected a nerve related issue and sent for an EMG. The results were normal. I then had a ultrasoind guided cortisone injection in the shoulder joint. This did absolutely nothing. My surgeon still felt that it was nerve related and referred me to a physiatrist whith whom he works closely with. While I was waiting for my appointment, my spain spread to my forearm and hand and the horrendus burning began. I was immediately placed on gabapentin. ird day of the 2nd week, I was disoriented and confused so I weaned myself off. My doctor was not happy. He realized that I am very sensitive to medication so he changed me to 25 mg of Lyrica and upped it twice to 75 mg. My new doctor sent me for an EMG of the brachial plexus. It showed low amplitude but the doctor felt that it could be due to the swellimg so he then sent me for a cervical MRI and brachial plexus MRI. The result were 2 slightly bulging disks that had nothing to due with the pain.

I am not able to touch anything with my right hand without pain. Of course this is my dominant arm. My doctor escalated me up to a pain doctor in late October. I have had 1 stallate ganglion block that only produced relief for a few hours. The pain doctor also doubled my Lyrica to 150 mg daily.

The burning now has spread to the back of my bad shoulder and has become very painful. I am scheduled for another stellate ganglion block next Wednesday 12/21.

Welcome to the family Kat,
I've been dealing with this monster for a little over 4 years and I sympathize with you. Some in here have been suffering for much longer.
But this is a great place to come to even just to vent, yell, scream or maybe get some advice.
Stay in touch...:grouphug:

New to the site
 

I have been diagnosed with RSD in my left forearm and hand since Sept. 2011. This was a result of a distall bicep tendon repair, with a radial nerve decompression. I have a lot of pain in my forearm and hand with intense burning up and down the forearm and thumb. The swelling in my arm comes and goes along with red dots down at the wrist. I was put on Gabapentin, Naproxen, Cymbalta they seemed to do little for me. Then the stellate ganglion blocks were tried. I had 8 of these and only had relief for a few days with each. I had an EMG done with normal results. They are now trying a slow release gabapentin called Gralise. This seemed to take out the up and down pain level and made it more constant. The pain is still more than what I consider livable and I still have sleepless nights. I am also on Percocet twice a day that the Pain Management Doctor wants to take me off of. Without them though the pain is unbearable. They are also saying that the only recamendation that they have is for a peripheral nerve stimulator. It was described to me as more specific than a spinal cord stimulator. I am glad to see that there is somewhere that there are others with the same problem.

living with RSD
 

Hi everyone,

I was told by 2 doctors that i have RSD. Last December i had a slip and fall accident on the ice and i broke the tib/fib in 3 places. They had to put 2 bolts, 11 pins and a plate in to hold my ankle and leg together. Since then i've been in terrible pain, Swelling and discoloration to my foot and lower leg and very senesitive to touch along with being cold all the time.

I've been too so many doctors and they all tell me they can't help me and i don't know where to turn i was told that this spreads very fast and i can tell a difference in it everyday. i hardly have any range of motion in my foot because i've tried for almost a year to get a doctor to treat me and no luck.

I live in upper michigan (harrison, Mi) and at this point i cant take it my family doctor has no idea what to do but make me wait for different doctors that all tell me the same thing (i cant help you)..

Does anyone know of any doctors that caan help that are in michigan or anywhere for that matter....

Thank You Betty

Default living with RSD
Hi everyone,

I was told by 2 doctors that i have RSD. Last December i had a slip and fall accident on the ice and i broke the tib/fib in 3 places. They had to put 2 bolts, 11 pins and a plate in to hold my ankle and leg together. Since then i've been in terrible pain, Swelling and discoloration to my foot and lower leg and very senesitive to touch along with being cold all the time.

I've been too so many doctors and they all tell me they can't help me and i don't know where to turn i was told that this spreads very fast and i can tell a difference in it everyday. i hardly have any range of motion in my foot because i've tried for almost a year to get a doctor to treat me and no luck.

I live in upper michigan (harrison, Mi) and at this point i cant take it my family doctor has no idea what to do but make me wait for different doctors that all tell me the same thing (i cant help you)..

Does anyone know of any doctors that caan help that are in michigan or anywhere for that matter....

Thank You Betty

Hi Nnklynn,
I'm not in Mi but I read your post and wahted to welcome you to the family. I know how living with this monster sucks and being up north like you are doesn't help because cold weather makes things much worse. I hope you find the help and relief you need...:grouphug:

I'm to the point now where i'm getting very discourged. every doctor i have seen tells me the same thing (i cant help you) i have no pain control my family doctor has no idea how to treat me and as the weather gets colder. the pain gets worse to the point i bairly get any sleep. i'm in severe pain 24/7 either they cant help me or they wont take my health plan which is a community health plan......can anyone help me

Betty

Just a little about my fight to win!
 

Hello Everyone,

I am new to the site, but definitely not new to the beast we all know as RSD/CRSP. My life changed a little over 3 years ago when I had a fall down a flight of stairs injuring my right great toe. Like most nurses I didn't seek medical attention right away; I thought it was just a stubbed toe. Six months into it I noticed I still could not wear any shoes other than my work shoes and only those I could slide my feet in; my foot also had this bone growth on top. I consulted one of the surgeons in my department (I am an operating room nurse); she told me she that I had turf toe. Turf toe is sprain of the joint in the right great toe usually in foot ball. I did indeed have this and had to wear a boot for some time. The however did not fix the problem, so I was placed in a short leg case for a month. After the month was over I was taken to the operating room to remove what was bone spurs and a bunion that had grown on the anterior portion of my foot from the joint being stiff. Now the fun begins; the surgery miraculously got rid of the pain I was feeling, but not oddly a few weeks post-op I begin to have numbness, swelling and sensitivity to touch. My foot just wasn't getting any better and it was getting close to time to go back to work. I had all the x-rays, EMG's, Lumbar studies to see if it was my back; you name it. I started noticing that my foot would change colors red then blue and the wind would even hurt; I begin to think something is really wrong here. Finally one afternoon while I painfully hopped along at work after being forced to come back or be fired one of the Anesthesiologist with a history of pain management asked to see my foot and I showed her; she then wrote three letters on a piece of paper and told me to go look this up and come back to me. All I can say am I sat in front of the computer screen that night crying because I said finally I have an answer. I took that piece of paper to my doctor and my RSD journey began. I must say it has not been fun now that I have a diagnosis in had how do we treat it. I have yet to find anything that helps me. I have done the blocks; they helped for a while. I can't take a whole lot of meds and work too. The work thing is a whole other story I am now down to 2 days a week and barely can stand a whole 8 hour shift. Oh did I mention the RSD is now in both my feet, legs, hands, right arm and scapula; yeah it’s moving fast. I don't know if it is because I refuse to take it easy or what. Well that's it for now if anyone can offer advice as for as it goes for treatment I would really appreciate it. Thanks in advance.

New Member
 

Hi! My name is Shelby. I am 38 and have had RSD/CRPS for 8-9 years. I am on day 5 of a 7 day spinal stimulator trial, which for me, has worked amazingly well. I came across a post earlier where someone said one the trial was over, the pain returned almost immediately. Is that true? Not that I really expected it to "go away" but I was hoping for more of a break in between. I've been told my permanent surgery will not be for 2-3 weeks. I honestly only first heard of the stimulator a month ago when I went to a new doctor in town on my own (this is a work comp issue - and that's a whole other story) and have "survived" somehow on stellate ganglion nerve blocks, radiofrequency ablasions and numerous meds.

Any advice, thoughts, suggestions would be greatly appreciated!

Thank you!

Shelby

I don't know that much about scs but i jumped in to welcome you go the family...:grouphug:

Welcome Shelby!

So sorry you are joining our "club" but you have come to the right place to educate yourself which will make you a better self advocate.

Unfortunately, radiofrequency ablasions and spinal cord stimulators are two of the most risk producing procedures you can undergo with CRPS. Please put a hold on your permanent SCS implantation until you thoroughly educate yourself and conduct your own independent research. Once permanent damage and spread is caused by SCS it cannot be reversed.

Please consider other more state of the art and non-invasive treatment prior to undergoing a Spinal Cord Stimulator.

If you physician is unfamiliar with other treatment options, consider a second or even third opinion.

What else is out there? I've been to 3 different pain specialists, at least 10 different pt/ot, done the nerve blocks which give minimal relief and as of today am on 13 different medications. I really questioned doing the SCS but I personally have had such great results already that I can only imagine they would improve with a permanent implant that isn't moving around. My pain level is consistently at least an 8/10. My RSD/CRPS is in my left hand and arm, luckily not my dominate arm, but I cannot button, tie, shave with that hand, blowdry my hair, straighten it, open a package, nothing. Did no one else have any positive results with the SCS?

Dear Shelby,
Please see below.

http://neurotalk.psychcentral.com/thread161951.html

http://neurotalk.psychcentral.com/sh...timulator+CRPS

Have you tried tDCS. It is non-invasive with no side effects. If your doctor does not know about it maybe it is time for a second opinion.

Please give yourself time to thoroughly research the very real danger of SCS and CRPS.

Take care and Thinking of you!

P.S. You might consider starting a thread on the RSD Forum asking for input from folks with CRPS who have had spinal cord failures for examples of the risks.

Welcome Shelby!

I have RSD/CRPS in the right side of my face, both hands, left arm, left leg and possibly my right leg. I was losing the use of my hands. I had the trial on my left side and it was successful, so I had the SCS implanted in June 2011...actually two of them implanted (cervical and thoracic). My pain was reduced drastically and I regained the use of my hands. I am by no means pain-free, but pain reduction is huge when I was a 9/10 all the time.

Now, the thoracic SCS has not given me as much relief. In November, they went back in and changed the leads to paddle leads since they moved and were causing more pain. Right now I am having some increased pressure in my lower back and the dr is going to do a RFA procedure (if the anesthetic injections help). I still use the thoracic SCS and it helps, just not as much as it should.

The dr recommended the SCS for me since we had exhausted everything else. I do not regret my decision to get either one implanted. Yes, we are still tweaking one of them, but my pain is reduced. As soon as the stimulators are turned off, the pain is more intense. I was miserable when the trial was over and couldn't wait for the permanent to be implanted!

Everyone is different and responds to each treatment differently. You just need to take all the information you have been given and research it. That way you can make the best decision you can for yourself, and one that you can be comfortable with.

Wishing you all the best,
Nanc

It is a

Hi Shelby,

I don't know the manufacturer of the device you have chosen but Boston Scientific is a good example. Boston Scientific gives lots of grant dollars to prove the safety and long term effectiveness of their Spinal Coed Stimulators. They have rejected all proposals to put their device to the test for CRPS because they know that there is no long term benefit and the risk of spread and failure rate is high.

Boston Scientific is currently funding research for failed back syndrome, which has been a mainstay of their advertisements for years. It is already well documented that SCS by Boston Scientific and other manufacturers are safe and effective long term for failed back syndrome.

Boston Scientific's application to the FDA for approval of their device included research that did not support their SCS's safety and long term effectiveness for CRPS. Their own physician's clinical manual does not recommend the device for CRPS.

When reviewing success stories as well as failures for Spinal Cord Stimulator implantation to treat Complex Regional Pain Syndrome, please be mindful of the length of time the device has been in place for the successes as well as for the failures. Also be mindful of the fact that Spinal Cord stimulators do not stop the progression of CRPS and many times can ignite a spread. Additionally, spinal cord stimulators only disguise the pain signals and do nothing to reboot the nerves. A positive SCS trial has no bearing on future success with CRPS, unlike other conditions like failed back syndrome, which has a very low failure rate.

Please consider tDCS which deals with the root of the illness, has no side effects, no tolerance build up and is not invasive.

You have nothing to loose by trying it prior to SCS implantation.

Hoping that better days are ahead for you!

Ketamine infusions changed my life. You should definitely do more research before having any surgery performed.

Thank you Nanc! It was a relief hearing from someone that this worked for. I realize that this isn't going to be an "easy" fix per se and that I will have a lot of tweaking to get things right, but for me, living at a 10/10 every day and not being able to function in the least little bit helps me feel confident that I'm making the right choice. I truly appreciate you sharing with me!

need helping finding CRPS doc on west coast
 

My daughter is 19 and was diagnosed with RSD last summer and we have been treating here in Hawaii with no success. We are prepared to travel to get her better and would prefer a west coast city but might travel further. Can anyone give me a recommendation?
Thanks in advance

Hi Shelby!

Happy to share with you! You know you have to make your own decisions and choices. And everyone has their own opinions and experiences that are certainly worth hearing about, that helps in making those choices easier. But there are good results from the SCS that should be heard. If it was so horrible, they would be off the market! I researched and thought long and hard before I got mine. It truly was the last resort for me and luckily I have insurance coverage. You and your healthcare provider have to be comfortable with your choices, and you have to be comfortable with him/her.

I read the good stories and the bad stories of its use for RSD/CRPS before I made my choice. I would do it again as I have regained the use of hands. As I said before, I am not pain-free but I can use my hands again. St Jude told me that they shoot for at least 50% pain reduction, if you go from a 10 to a 5, that's huge!! If I am a 6/7 today instead of a 10 in my hands and I can do my job, I am doing great!

I had my first set of injections Tuesday in my lower left back and right hip and they helped, so I think we are on the right path to getting the thoracic SCS working better now too :)

Wishing you all the best,
Nanc

New Diagnosis
 

Please find a person who is experienced w treatment of disorder, you may have to travel to a big city. MDs who are not trained with CRPS, may do more harm than good, even with the best of intentions.
You found this site, use the internet to find a pain management specialist that you can access, who has treated folks with CRPS. Especially, early on,
as you want to minimize possibility of spreading!!

New to all of this
Don't know the 'rules' for posting yet, so bear with me.
Bought 4 books after receiving diagnosis 6 weeks ago. Not what I'm looking for.
What I'm looking for is some statistics, example:
What are the chances my RSD will advance/stabilize/remit? Does everyone eventually wind up in "stage 3"?
At age 62, I was hoping that my chances of keeping my right leg/ankle "as is" (not much worse) is at least 50-50? I can walk without a cane and find that wearing compression stockings underneath my socks prevents excessive swelling at the end of each work day. My right ankle is still 40% bigger than my left, and my whole lower leg and foot is reddish-purple every morning when I get out of the shower.....but otherwise, life's pretty good (so far).

Which thread should I read first?

Thanks!

Hello, I m new to this forum, and also new to CRPS was diagnosed about a month and a half ago. I had my L5 removed due to a pinched S1 nerve, 2 months after surgery i felt like my left leg was on fire, like little fireworks were going off inside my leg, as well as swelling strange colors and the feeling of being stabbed. I am beyond frustrated, the pain levels are so high i feel like i should be put under or my leg cut off. I have a marine for a husband who believes i need to push through this pain, i can't or i just dont know how? I have had 2 children and would gladly pick labor everysingle day over this pain! What is even more concerning is I have had to go to the emergency room twice and both times not one nurse or doctor knew what CRPS stood for! They were asking me to describe my condition. I am at a loss. I have tons of pain medicine and lyrica , first i am told to stay away from narcotics then im told take them regularly.I can't do much and have to have a lot of help with my kids. But the worst feeling of all is having nobody in my life who understands. My husband has been taught there is nothing we cant exercise our way out of and I feel like thats not the answer , he tells me push through (w/out meds) work out as hard as you ever did suffer and in a week you will be better. HAS THIS WORKED FOR ANYONE???? Because it seems insane to me but i will do anything to rid my self of the pain. I am going to Stanford to see a specialist next month but meanwhile i take at least 1 walk a day and never spend the entire day in bed but i want to rest im so tired from being up all night trying to get comfortable, Well I guess im lost in the beginning and hope someone can help me find some reasonable answers?

hi Hill,
I just wanted you to know that I, as well as others I'm sure, read your post and is welcoming you to the family. Here we listen, support and try to comfort one another. Even offer some helpful insight at times. At least we can find comfort in knowing that we understand...
:grouphug:

I don't know where you are in relation to Atlanta but I would highly recommend Dr. James Fugedy, www.transcranialbrainstimulation.com

New to Group
 

My 37 year old daughter has severe RSD/CRPS. She has had it since fracturing her wrist about 18 months ago. It quickly spread through her body and she is now bedridden and uses a wheelchair. She participates in another group on the internet and would like to keep her privacy with her friends so I came here to search for friends and answers.

She has had quite a few Ketamine infusions. A few one day treatments at the Univ. of Miami, however they feel that she should have the Spinal Stimulator and we are totally against that. So they have basically told us that there is nothing left for them to do.

There is a Dr in Philadelphia who I called and the next appointment available is in 2014.

She has had two treatments in Tampa. One was a four day treatment which helped for about 2 weeks and then a 3 day booster two weeks later which didn't help at all.

Now we are looking for anything that we can afford. Tomorrow morning we are taking her to an MD who specializes in Hypnosis.

We have also heard about a Dr Cantu in Monterray, Mexico who does a five day in hospital infusion. Then we heard that Monterray in 2010 was one of the safest places in the world and in 2011 it is now very unsafe especially for American's.

We don't know where to turn. Any help would be appreciated.

Dear ahill
 

I want to welcome you to Neuro Talk. There are quite a few people here who experience CRPS. I hope you get alot of responses from others in how they deal with it. For sure, compassion for your pain is number one. There is not much worse than constant pain, and to be told just to push through it. I don't think it is that easy to do. A good attitude always helps, but this pain you endure, I know from others, can be over the top. I so hope you can find a physician that knows about CRPS and can give the kind of answers and pain relief that you need. Please continue to look for that kind of doctor. If you post what state you are in, sometimes there will be a person who can tell you about a doctor in your area. I sure wish you all the best, and that your pain level is down today. I am glad you found Neuro Talk. There will be others that will try to help you with this condition. ginnie

crps
 

Ihave had crps in the whole body for 17 years. I was able to contain it with a tough exercise program. Now I have a wrecked back from training so cant stop the crps. Its now gone mad and into my spine and brain. Can anyone offer any ideas other than drugs as they only work once as the brain seems addicted to the pain.I,ve tried most drugs on the market a seretonin enhancer was good for thepain but gave me stage 3 in arms and legs after 2 hours. I only joined this site yeterday but I already feel better and finally not isolated in UK.My prayers,thanks and good luck to you all.It,s a tough battle but easier with friends.

Im sorry to hear of your daughter. RSD can be a strange character sometimes spreading fast sometimes slow. I am not sure what type of dr. you are looking for but there is a dr. in Newark, Delaware that does it all.

its midatlantic spine and pain

21, in college, and suffering
 

I have recently been diagnosed with RSD and found this forum to be the best source of info! It all started when I woke up the weekend before Halloween with what I thought was a charley horse in my left foot. I did pointe ballet for years but haven't done it in about 3 years so I figured it was an old injury. When it didn't get better I went had x-rays which were negative but was waiting on a MRI so was in a boot and on crutches. The MRI showed I had a Morton's Neuroma (a bundle of nerves in between your second and third toe) but by now my pain was in my big toe. I was sent to another Dr who told me that the bones in my foot weren't in the correct positions and my arch was too high so he sent me for orthotic inserts and gave me a cortisone injection into by toe to bring down the swelling (which worked for a bit). Over the months of December and January my foot continued to get worse and then started turning blue/ getting freezing cold to the point where I thought I had frostbite and my foot was going to fall off. All this time I had been seeing Dr's at college so I then saw a Dr when I was home. He finally diagnosed me with sesmoiditis (after a second MRI showed that the bone there was abnormal) and a mild form of RSD. He suggested physical therapy. I am now back at school and went to physical therapy but the therapist took one look at my foot/calf and told me a needed to see a specialist because my foot/calf/ankle is atrophied. My calf is two inches smaller than the other and my foot is visibly smaller as well. At this point I'm using one crutch to walk and "shape up" shoes to roll in since my ankle muscles are nonexistent. I am currently looking into specialists but since I have only had the symptoms for a couple of months they are hesitant to say this is definitely what I have. From reading these posts I now know I need to act quickly as treatment in the first couple of months is crucial yet the waiting list for Dr's is certainly longer than the time I need treatment in. If anyone has any advice I would love to hear it because my situation is becoming unbearable and this is not how I wanted to spend my last semester at college or my first year of being 21! Thanks for everyone here for understanding and I'm excited to see there are others out there that understand exactly how I feel.
xo
Genna

Gennipenni,

Welcome to the group. This is a great place to rant rave or just be a part of a group of people who understand what is going on with you. I noted you said you are recently diagnosised with rsd and you are hestitant to find a dr. but it is in your best interest to try and find one early on. RSD can be stopped if caught early enough. I would also like to say I am sorry to hear you have this monster. But key again is early intervention.

Thanks
 

Thanks for the welcome! (sort of!) I actually just called Dr. Schwartzman's office and was put on the waiting list of course. I wish they would've directed me to another specialist who would have time to see me sooner than two years from now. If anyone knows any in the tr-istate area that could work with Dr.S. I would really appreciate it!
Thanks again,
Genna

genni,
I recently found some dr.'s in Newark, DE they are at the Mid Atlantic spine and pain physicians they seem to do a full array of treatments and there is several dr.'s in the facility.

Hello Genni
 

I just wanted to say hello and Welcome to Neruo Talk. I am sorry that the RSD brought you here, but you will around real compassionate people. If you are having trouble getting into the doctor of your choice, sometimes a primary care physician can call and get you in earlier. Also keep posting and request if others in your area have RSD and the name of their doctor. Perhaps you can find someone quicker. I would hate to be told to wait two years either! Thats crazy. I also was told by others, that early intervention is really important too. Don't give up. Come back anytime you need to talk. NT will be here for you. ginnie

I was diagnosed a week ago. Angered after I had complained for 6 months of horrendous pain following my cervical rib removal for TOS in August. Finally I saw a physiatrist and said you need injections ASAP. My questions on the forum: I have CRPS in neck area, shoulder, and right arm as surgery was in C7 spine, does anyone here have it in the face. Am super worried about it spreading there. Am young, cute, was active (active volleyball, pilot, forester, fisherwoman) trying to get off pity party and found this site to be helpful. Was told by my pain clinic they shouldve put in a nerve block prior to my surgery to prevent this god awful thing. Didn't have one, and am furious. They need to put better information on their "What to Expect from Thoracic outlet surgery" pamphlets, or any pre-surgery pamphlets!"

New here, have had success with tDCS
 

I have been reading posts for some time and finally decided to join, hoping to help others. I have CRPS and I am a Spinal Cord Stimulator surviver. I say surviver because I unfortunately had a stimulator implanted before I knew of the dangers and risks of SCS with CRPS. Even more unfortunate my doctor suggested a second stimulator to control the spread to my wrist that occurred as a result of a revision surgery of the first SCS, which worked great for 20 months and then just stopped working.

I decided that one spread and one limb with dystonia as a result of a SCS was enough. My doc responded by telling me there was nothing more he could do for me.

I was very lucky to discover the posts on Neurotalk regarding tDCS. The SCS left me in a wheelchair. Although skeptical about tDCS, I read every clinical trial I could find, (unlike what I did with the SCS, that research was basically reading posts on forums of SCS "success stories" which consisted of a few people with CRPS who had not had their SCS for more than months or a few years, in addition to my doctor and the Boston Scientific rep who assured me that the procedure was effective and safe for CRPS patients.)

I have been using tDCS since the first week in January and I have regained full use of my hand and the alodynia in the wrist is gone. I am now on a walker and the dystonia on my foot as well as the spasms are greatly improved. My physical therapist believes we can now make some real progress. Also, the constant headaches and irritability have greatly lessened.

I so much hope that other's who have found failure with every other treatment try tDCS-especially consider this treatment before ever risking greatly worsening your condition with a SCS.

i am young and was in 3rd grade when i was found out about my rsd it was scary but went away thanks to dr. sheri:D

Welcome CRPSJames!

So happy that tDCS has helped your recovery from your failed spinal cord stimulator. It is nice to have tDCS company. I know how encouraged you must be that your dystonia has improved. Congrats on getting out of the wheelchair!!!!!! What an accomplishment!! It is wonderful that your wrist pain is abating. Please share anything about your tDCS treatment that can help others, including me!!!!!!

Dear James,

Wow, you have made my day. I am so looking forward to my daughters
treatment with TDCS in April.

Best of luck with your continued sucess.

Joydee :)