After a simple slip and fall in Dec. 08 resulting in a sprained ankle and a long winter of unexplained pain I was finally diagnosed with RSD in June. At this point it is limited to my left foot. I have undergone 5 Sympathetic Nerve Blocks with short term success. I am now scheduled for RFA in three days. After internet research I am getting some mixed feelings about this procedure. I am most concerned about being able to work afterwards. I am an elementary school teacher and being off work is more trouble than actually being there. Anybody have any post-procedure information?

Hi everyone

I was recently diagnosed with RSD. It was in June that the Doctor's finally figured out what is wrong with me. I had a major flare going on and was a real mess. I ended up going to the ER down in philly (Hahnemann Hospital) because my neurosurgeon who performed my spine surgery recommended I go there immediately. Once there, i was greeted by the neurosurgeon team and they called in Neurology. I didn't even see the ER Doctor. I saw only specialists who decided to admit me for 4 days. They ran every test under the son. I was seen by Doctor's all day, every day. I was then seen by Dr. Schwartzman in ground rounds in the auditorium of the hospital in front of about 50+ Doctor's. I was basically put on display and Dr Schwartzman examined me in front of them all. They then discussed my case to come up with a diagnosis. It was CRPS/RSD. I was discharged to then see Neurology and they discussed Ketamine treatment. I have been to hell and back the last couple years. This all started wtih a work related injury...a repetitive strain injury caused by sitting at a desk keyboarding all day. I was diagnosed with thoracic outlet syndrome in January 2007. It then escalated from there. I had a scalenectomy for the TOS in January of 2008 after all treatments failed and I just got worse and worse. 5 months later I was back in the hospital with spinal cord compression due to herniated discs in my thoracic spine. Had surgery for that. Then I went down hill from there. I have been dealing with alot. I hate all of this. It's very frustrating. My life was taken away. I was such an active person before all this.

I have 3 teenagers and lots of stress which doesn't help. I do have a blog that gives more of my story and updates on everything. Please feel free to check it out.

http://updatesbytammy.blogspot.com/

I'm glad this forum is available. I have a hard time sitting and typing some days so I'm not always on but I will try to post when I can.

Take care!

This is so true. I do have to say that I have been on Morphine ER for years. Unfortunately, after many years I had to go off it because the nausea & constipation it caused was too severe. They switched me to OPana ER & for a year it worked well but then it quit working because my body had adapted to it. I am now back on Morphine ER but after only 2 weeks I am experiencing the same problems. I take Norco & Soma for breakthrough pain & I take them together. I found that the combination of the pain killer (Norco) & the muscle relaxer (Soma) is the best remedy. They work on both our main problems which is the pain & the constant muscle spasms from the nerve over-firing, which also cause the pain. The new doctor I have (after having to move to WA because my WC comp is 4 years + in with no end in sight & I couldn't afford to live on my own after not working for all this time)is horrible & unknowledgable about CRPS/RSD & has written down that he sees no signs & I am a chronic narcotics user. He has admitted that he knows little about the condition, knows no doctor to send me to & refuses to contact my former specialists in L.A. who had treated me for 4 years before I had to move. This is why I had to go back to Morphine, because he told me he doesn't know what to prescribe & I only could hope that going back to a drug that I used to have luck with. I am searching for doctors in Seattle now but it also means that I will have to drive 3 + hours over 2 mountian passes covered in harrowing snow & black ice once a month to get to them & god forbid I have a horrible flare & need a local doctor fast.
I guess I have got carried away ranting, but the bottom line was that for me, the short term opiates have worked best & I am in so much pain that I don't feel any rush, just relief. The long acting help alot, but also cause me other problems. What ever works for us is what we should be prescribed & I HAVE NEVER BEEN CALLED AN ADDICT UNTIL I MOVED HERE & HAD A DOCTOR WHO KNOWS NOTHING ABOUT IT & REFUSES TO LEARN. HE CALLED ME AN ADDICT IN MY RECORDS, NOT TO MY FACE OF COURSE, BUT ON PAPER. The fact that he has access to 4 + years of records by specialists in the field & reports from the 14 doctors whom have all diagnosed me with RSD & still had the nerve to call me an addict while admitting he doesn't know about the condition is deplorable, yet all too common for RSD patients. Sorry again for the long rant...I am just so furious with this kind of treatment & lack thereof that I had to get it out!

Hi everyone! I understand your pain as I have had CRPS type II for 8 years now. I have a pain pump implant with Dilaudid in it. I was on morphine since Nov. 2002 up until a couple weeks ago. My legs were red, burning and swollen badly with edema. It turns out for six months I have had an allergic reaction to the morphine. I thought I was having heart problems and it was causing a flare up that wouldn't quit. I couldn't afford to go see a doctor or pay for test. Then I started having minor chest pains so my brother took me to the hospital. The ER ran tests and took blood. The ER doc said he couldn't explain the edema because he couldn't find anything wrong with my heart. I felt like a fool. I went 2 weeks ago to have my pump refilled and showed the pain doc my legs and he said I was allergic to morphine. It turns out you can form a allergy to anything at anytime regardless of how long you been on it. After the Dilaudid was put in my pump my flare up became worse and then morphine withdrawals hit me. I'm finally doing better in general but tonight at 3am I sit here with my legs on fire and sit at my computer writing this. I just joined recently to this forum and more of my whole story can be found on my "about me" page.

I hate that any of us have to go through this. I lost my wife of 11 years to divorce along with everything else that I worked for my entire life because of this demon. I have good days and bad (like all of you). Today happens to be a bad one.
If anyone knows of a more active rsd forum please pm me with the url.
If you need someone to talk to (even if it's just to complain about the pain) feel free to email me or contact me on im. Thanks for listening.

Hi guys. I am new to the crps dx. (kids call it crap--lol) Anyways we assume that while in ICU in dec/jan and the severe bruising from use of the bp cuff to L arm continuously for that time is the probable "injury" that often preceeds the onset of the crps. At any rate.......I have been fussing for months at every one of my docs about the swelling and discomfort in that arm. Burning pains. Even a breeze from the fan caused pain. Very odd. My arm at the elbow had begun fixating as well as my hand. It was just written off essentially. No one addressing it. Then, about some weeks ago I went to hemo and had the arm wrapped. He of course inquired as to the reason, I told him about the pain and burning and swelling and discoloration from fingers to just below shoulder. The hand hurt so bad it felt like crushing pain to move the fingers. He ordered a series of xrays to wrist and hand and doppler study to ensure no clots were the cause. Both of course were negative. So things were dropped again. SIGH. I was telling a friend of mine about what was going on and she said oh that's RSD. HUH?? never heard that one before. Anyways she advised I see a specialist and have it looked into as the sooner the treatment begins the better the outcome. So I had my appt last Tuesday. The doc took a history and one look at my arm and said my goodness you have CRPS and a pretty bad case at that. She then ordered a tens unit lyrica topical analgesics and occupational therapy. She wanted to do the Stellate Gang block but I am on blood thinners and it is contraindicated. (but after my research for hours i have the idea that the concensus is that that part block has much to much negative attached to it) I am very blessed to have the doc I have. She is not into here take this narc and come back in a few months!! She beleives in aggressive early constant care to help effect the least amount of permanent disability.
I was a bit dismayed to learn of the poss of it cropping up in the other extremities though. It makes total sense from a physiology standpoint. However from a patient standpoint the idea that it could involve the other arm or a leg is daunting.
I also have MG and MS---so the level of disability is already high. I have been wc bound now for a few years. Without the elec chair I don't go. sigh. So adding to that disability by loss of the use of a limb is not a great idea at all.
The lyrica is a GREAT blessing. I started on one at bedtime and will add one in the morning this coming week. it really helps a lot with the pain/discomfort. The topical gel is not really adventageous at all. Didn't find ANY difference at all. The tens unit is great for the elbow/arm. Unfortunately it did nothing at all for the hand but irritate the wrist. So need to get with OT when she comes to the house Monday for our therapy and see if perhaps adjusting the lead placement more than I was willing to do without guidance will help. So I use it on the arm and not the hand.
Am concerned that the elbow is peeling and the new skin shiny as well as the nails being brittle and not growing. So i need to get those addressed next visit.
Well, I guess that is about all I have. I am looking forward to learning and sharing and suppporting each other here!!
Deb

I'm a 56 year old disabled veteran who is also a work comp survivor of 11 years. I'm married to a great guy who deserves much better then this. I just had my 5th IME and have just been referred to the pain clinic at the Denver VAMC. Hopefully I'll pass all the tests and get a real pain doctor.

My husband and I live on a small 2 1/2 acre ranch on the Western Slope of Colorado near the Utah border. We have 1 dog (down from 3, 2 just died recently of old age) and 3 cats (down from 5 and up from 2 having been recently adopted by another cat who wandered into our lives).

I've been a surviover of chronic pain for over 30 years now and worked up until 8 years ago.

I like MOMZPEACHY post I am a RSI patient which I lost ALL feeling in my right arm one morning at work June 2000. Felt like it was shot up with novacain within 1 hour of feeling all tingly like I slept on it. Absolutely no feeling, dead wight for months. PT helped get back the fingers moving & some of the swelling down. Then the pain severly set in. My dept had just had my work station evaluated by the Environmental Health & Safety Dept a month prior my injury set in due to neck pain. NO ergonomics found in my favor. Of course I was working 12/14 hr days coming in weekends & taking home work. It was a new position so I was determned to get it up & running. There were no lunches or breaks due to the circumstances of my position & dept needs. All I can say is... NO job, no matter your loyalty & determination is worth your health.

2 years undiagnosed from doc to doc. Then a Neurologist at Kerlan Jobe said you have TOS. I said what? Whats that? Years of incorrect PT, all the drugs & stress. 2 MRA's at UCLA with Dr. Collins 2 years later confimed the diagnosis & the damage was done. I couldnt take the pain anymore so I waved the white flag to see a surgeon. I refused large amounts of drugs physicians wanted me on unsafely driving to & from work & working while on them. Yes, & still working during all this. I still remember keyboarding all the HR, budget & payroll as my fingers were like sticks, no feeling. Why? I was the only person in the dept who did all the work while managing the information center on campus. The dept didnt have the $$ for additional help for me which was asked for 6 months prior. Funny how they found the $$ to hire 3.5 additional full time employees, me an assistant & a full staff of students to cover the info center after the injury. They had no choice. oops, O NO!

Since 2000 I have seen over 39 docs not all on my accord but due to the attorneys fighting over my case. Surgery in 2002 consisted of a Bilateral Costaclavicular DE-Compression & R Ulnar nerve decompression. Increased pain returned within a month or so. Then a RCTR. No help. I was devestated. Told I could go back to work within 6 weeks. As I look back all the CRPS aches & pains set in shortly after the injury happened, not after surgery.

I lost my job, my career, lost my medical ins due to the university enable to work with my/the surgeons limitions requested. The university's legal team fought me on my disability retirement so I had no choice but to hire big guns which only cost me $20k. 1 case down...overwhemingly found in my favor. SSDI appeal hearing finally in Nov & W/C case still ongoing 10+ years & 60k in debt due to the W/C not approving medical necessities. All sound familiar?

And I see on here, W/C & SSDI forum RSD/CRPS/FM is not a concrete dx. Social Security doc appt was an absolute joke. This is really getting long so I wont even go there.

Neurotalk has been my savoir, the friends I have made through local meetings & support groups. And now the ability to help others with our Foundation called TOSsociety.org was develpoed in my name by my husband to help others & educate the medical profession, complimentary professionals, caretakers & patient. TOSsociety.org is a non-profit 501(c)(3) foundation. The foundation has gone from an idea-reality taking big steps towards awarness. I am looking forward to adding an RSD/CRPS page on the site. Any ideas are welcome by all. As this is for you. And please note...NEUROTALK is our forum of choice for the injured & chronic pain patient.

Any more & I'll be able to hear you~all snoring. blah, blah, blah

Hi,

I have been recently diagnosed with CRPS. At first I was prescribed Lyrica and Lidocaine patches. I am not able to take the Lyrica, because it caused severe dizziness. I am now just wearing the patches every 12 hours as prescribed. Anyway, 4 days ago I went to an Orthopedic Surgeon (I went to him originally because I thought my finger was fractured based on the pain I was experiencing) to let him know that I was still experiencing pain, and cannot take the Lyrica. He did refer me to a pain clinic, but sent me on my way with no medication of any kind. He told me that the pain clinic would call within two weeks. I don't know what to do right now, because I'm exhausted from lack of sleep and still in pain with no relief. I have been reading posts here, and I am glad to have found other people with this disease, but I'm feeling very panicky because I don't have the energy to do the things I need to do. I'm also dealing with the people who don't understand this, and say things like "it'll probably just go away." I would love for that to be true, but in the meantime, I need to deal with the pain somehow. Anybody have any suggestions for me until I get to the pain clinic?

Hi Gina,

I know how the Lyrica can make you feel. It does make you really dizzy. I am taking 100 mg a day. I take it at night so much of those effects are gone by morning. It does take about two weeks for the dizziness to go away, but it is worth the wait. I also take 750 mg of Naproxen each day. I was taking two 500 mgs but we found a long acting 750 that works just as well.

The Lidocaine patches work for a while but I found that the Lidocaine gel that they use at PT helps a little more. Your doctor can prescribe to be used by your therapist, but they have to mix it with the ultrasound gel or massage lotion to dilute it a little. I wanted to try it straight but they said that it would make my foot numb (yeah, so what's the problem?)

Good luck with the pain clinic. Keep at it until they can help you. If you don't get the answers that you want try a different one. I have one in Ann Arbor that I love. Good Luck.

Good Morning,

I'm new to this group and thought I should give some background on myself. 2 1/2 years ago I was given a shot for a migrane. The shot hit a nerve and that is what started the RSD. The affected area started at the hip region and since has spread two both legs from the hip to my toes. I was not correctly diagnoised until six months ago and therefore the diagnoises in itself was one of the worse struggles of my life. I have tried what it seems like every medicine and nerve blocks and I still cant get comfterable in my own body for the majority of the time.
I try to stay positive, and I still am working as a public accountant in a very fast paced, high demands career. The doctors tried to get me to leave my job but I refuse to let go of one main things that gives me a purpose.
Looking to share my story and hear about others so that we can learn from one another and fight this horrible disease together. Strength in numbers, right?