Have had 5 LSB and now scheduled for RFA
 

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?

My Ongoing Battle
 

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.:hug:

New to this area of forum and CRPS
 

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 :grouphug:

Hi, I'm Charli
 

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.

olecyn here
 

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

Recently Diagnosed
 

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?

Lyrica
 

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?

New to this....
 

Hello everyone, my name is Sue and I was diagnosed with CRPS last month. I fell down the steps at work and had an evulsion fracture of the navicular, had surgery June 30 to remove the fragment. I had my first Lumbar Sympathetic Nerve Block last Wednesday. Within 5 hours the ice cold temperature change, the color change and pain worse than before returned.

I have been researching alot about CRPS/RSD and would love to chat with anyone dealing with this as I am having an emotional as well as physical problem with this disorder.

Thanks.

Gina
Do you have a primary doctor that you could see in the mean time while you are waiting to get into the pain program? I can’t imagine not being provided the medicines needed to deal and fight this disease. If you don’t have primary get into a neurologists office because the issue I think is the fact that the doctor you was an orthopedic doctor and they don’t treat nerve pain very well. I would start there because any doctor that is familiar with RSD knows there are many other medicines used to treat the symptoms of RSD than just Lyrica.

Hi I'm Charli
 

I'm 56 yo and have had TOS, RSD, CPS and a host of other things for about 13 years. I was injured at the Choice Hotels Call Center and permanently disabled by the treatment I got. I'm married to a wonderful man who stayed with me in spite of my injury and my change in personality because of the pain. We have a small ranch in Western Slope of Colorado. We have 1 dog, 3 cats, 2 tanks of fish, wild quill and pheasants and tons of wild rabbits.

I'm also a veteran and refuse to turn over and quit for these jerks at wc. They picked the wrong person to screw with. I'm like a pit bull. You kick me I go for your private parts and bite down. the more you kick me the harder I bite and if you kill me you'll have me hanging from your body until I rot away.

I'd just gotten to the point where I was so tired I hadn't been as active in the WC movement as before. That changed with this request for a new IME just 3 months after the last one. Don't they know to let a sleeping dog lie????:eek:

New Diagnosis & Hard To Accept
 

Hi everyone.

I think I got a firm diagnosis of RSD this week... well, I did from 2 doctors and have from about 6 docs before. The problem is that my pain management doc does not think I have it. He's the only one. I'm basically convinced that I do. My pain doc says that I have nerve damage from a surgery almost 3 years ago. I hate that I want everyone to agree on a diagnosis and plan of some kind. Anyway, I'm new here and don't know if this is where I should post. I have a question for any RSD people... can RSD be in a little toe only (a bit of the foot, too)? My pain doc thinks it must be in a larger region, thus the name complex regional pain disorder. I had a test by a foot doctor this week and I'm convinced and he is convinced that I do have RSD. I had 3 lumbar sympathetic blocks 2 years ago and the pain doc that did them said that my positive response to them was absolutely diagnostic of RSD. I don't know who to believe. I know that people can see many doctors to finally get diagnosed, but it's hard to accept because I had just met with a doctor in another city who could do an amputation of my toe and part of foot and he thought my pain would go away. I was so thrilled. But then the docs here said that "No... it would make everything worse." I'm so discouraged by all of this and have close to no support of any kind. I have a very strange question, but do any of you talk to each other by phone? I so wish I had someone to talk to by phone that would understand the pain. If anyone else wants to talk, let me know. Thanks for reading this.

New Member 1 cervical fusion, 1 lumbar fusion,emergency discectomy
 

Hi! I'm Robyn, I'm 39 and live in Maryland. I have 3 delightful yet sometimes devilish children, a wonderful supportive husband and 3 goofy boxers. I've had back and neck pain basically since high-school. It escalated as the years went on. Finally over the period of a 3 month time frame, the pain in my lumbar was way more often then not. Suddenly, while at the beach on vacation over the July 4th holiday, I stepped out of bed and had a incredible pain in my lumbar region that took my breath away. I waited a few minutes, took some ibuprophen and did my scheduled 2 mile walk. I popped the motrin like candy that week and just figured it would go away. By the end of the week, I woke one morning and realized my big toe and a portion of my foot were numb. I didn't really think much of that. By the end of the day it was numb up to my knee and again, I just let that go. I have a high pain tolerance and as mother's often do, I put myself on the back burner. Within days I started to realize I was tripping a LOT and that my left foot wasn't really working. I still let it go thinking it would get better. Finally I decided I should maybe see a chiropractor (which I had NEVER done before). I called and explained the loss of the use of my foot and made the appointment. Over the course of 4 appointments I mentioned everytime that I really wasn't walking normally and the pain in my legs and lower back was worsening. She stopped working on my back but continued my with my neck. Finally the next time she asked me to walk and she immediately sent me for an mri. The next day she said she couldn't touch my back anymore and that I needed to see a neurosurgeon. She continued working on my neck which was feeling worse with every session not better. I called the neuro and my appt wasn't for 4 mo. so I explained that the chiro believed I needed to be seen immediately so they asked me to send over my MRI report. Within the hour they called me back and I had an appt. the next day, a Tue. When the Neuro saw my MRI he was alarmed because apparently, a LARGE disc fragment had broken off and slid down my spinal canal and was pressing on nerves. The surgery was set for 2 days later, in August. I stopped seeing the Chiro because of my worsening neck pain. An MRI showed that I needed a cervical fusion for that, I had that done that Oct. My lumbar continued to be a pain issue and I then had an epidural injection. It lasted 7 days. I had a second injection (that resulted in an immediate sever spinal headache and major drop in blood pressure, then an emergency blood patch). That injection lasted 5 days. Finally, I had a lumbar fusion with instrumentation in May. My pain hasn't gone away and I'm extremely frustrated. I had 2 rhizotomy's, one on each side in the past month. I am actually in more pain now then ever. I can't explain how frustrated I am with this entire thing!

I'm new to this site and struggling with RPS
 

Not sure where to start....how can I help my sister?
 

My sister fell off a ladder on 09/07/09 and broke her shoulder and arm. She saw an orthopedic surgeon and he said she was healing quickly and that he wanted her to start physical therapy. She started therapy but instead of getting better, the pain got worse and worse. She kept telling him that something else was wrong because her hand started swelling and changing color and now she has difficulty using her right hand. She is in constant, severe pain - can't sleep or eat. Her primary care physician thinks she has RSD and she will get her test results tomorrow. She is a flight attendant and the mother of two teen age boys and this has brought her to her knees. Does anyone know of any doctors in the Phoenix, AZ area who specialize in treating RSD? Our family will do whatever it takes and travel out of state if necessary to get treatment. Do you start with medication or nerve blockers?

Crps
 

Hi :]

Well I am a 17 year old senior in high school and I was diagnosed with RST or CRPS 7 months ago. It all started in January when my foot was numb and I got up and some one pushed me causing my foot to bend in a abnormal way. It hurt a lot, but within 3 months it was better and I maintained walking on it throughout everything. Once it was better I still felt pain, but my doctor said it was just because I had flat feet. During the summer I started my color guard practice which involved ballet, running, jumps, etc. I was practicing for more than 5 hours each day and I still felt this horrible discomfort, but I went along with it. When camp time came it was 18 hours straight of non-stop dancing and running and I almost lasted two weeks.

The first day of away camp, after everything, I could barely walk. The pain was awful and the slightest touch caused me to flinch. I went to the ER and they said I had tendinitis and that it would be better within a week. So I got some crutches ( for the first time ever) and continued learning my color guard routine. I really couldn't stand the pain, but my coach told me I should try to join in because if I didn't, I wouldn't be able to join them in the Fall and I would be too far behind. So following his orders...I went to the extreme and didn't use my crutches and followed along. This lasted until day three of camp when I collapsed and couldn't get up. I told my coach I would have to sit from the sidelines and wait it out.

My foot was huge and purple before I ever went to the Er so now, you can imagine, it was the worst I had ever seen and I had this constant pain. When camp ended and I went home, I went to the doctor and she said I probably had a small fracture in my foot and I had to wait 3 weeks until I could go visit my new Orthopedic doctor. So I was still on my crutches and I toughed out high school and when I went for my first visit to the doctors, he told me to get an X-ray, MRI, etc but he believe it was RST and he wanted to make sure nothing was wrong, so I got everything done and everything came back fine. I had to go to Physical Therapy now.

I went to PT for over 3 months and although it was painful, my foot got better and I could actually touch it with a tissue- which was impressive. Still, A lot of things bothered it. Aside for the constant pain I had, it was always cold, my wrap made it sting, and I couldn't sleep because every time it touched the bed, I would feel this awful pain and instantly walk up. Over these 3 months I went from both crutches to one crutch and then a walking boot with an ankle brace. Walking without anything lasted a good..4 days because after that, that awful pain that I got the first week of camp came back and it was worse than ever. My PT couldn't even touch it or put anything hot or cold on it. My Orthopedic doctor thought it was time to go to the pain center.

Its was November by then and now I could barely walk on it and I was back on my crutches. During the duration of the month I got two sympathetic nerve blocks. The doctors plan was to give me one every week until the pain was at a good level and then spread them out. The first block I was completely out during the actual shot and when I woke up, my pain had subsided a bit ( on a scale of 1-10 probably a 8), but once I touched the floor that blaring 10 came back and stayed all week until my next shot which was the following week. The 2nd shot didn't go as well for me. It was on the 23rd of November and this doctor liked his patients to be apart of the actual "shot" and he got that from me. I felt everything and heard everything the doctor said and once I got the shot not only did my foot feel worse, I now have an awful pain in the lower part of my back ( lumbar region)< where they gave me the shot>

The doctor believes it was because my nerves aren't working well that I have this awful pain in my back and now I am in a wheel chair. Aside from that I can't go to school because of this awful pain and my medications make me sleep through most of the day( but they don't give me relief). Tomorrow will be my first time going to school with this much pain. Now I have to wait until Monday and I am hopefully getting either a Tunneled Epidural catheter or a Spinal Cord Stimulator.

So this is my story that is still continuing....and will hopefully have a good ending :]

Thank you for reading <3

My RSD
 

I am able, I am weak. I am some strength, I am none. I am being, I am thought. I am all things, said and done. I am born, I am died. I am dust upon the roots. I am grace, I am pain. I am labor of willed fruits. I am certain, I am doubtful. I am desperate for solutions.
I am a teenager suffering with Reflex Sympathetic Dystrophy or as I call it, RSD. You may know me personally or you may not, but who I am is not really important, only the fact that I live in chronic pain matters.
I need to tell you several things, including what I have learned from having RSD, but first I am going to tell you what it’s like to be a teen living with RSD.
Everyday, the average teenager wakes up, gets dressed, goes to school, talks to friends, participates in sports and other activities, goes home, does homework, and then goes to sleep. However, the RSD teenager is not able to do these things. Everyday I wake up and the first sensation of the day is pain. I get dressed slowly because clothes and socks are such agony to pull on against the skin. School is a blur and I go tiredly home since I can’t participate in any type of sports. When nighttime comes, the war between pain and exhaustion battle inside my body. Pain wins… sleep loses.
Are you beginning to understand me yet? Now, before you start making a stereotype of RSD kids, I need to clear up a few things that tend to be common misunderstandings…
RSD kids rarely look sick, maybe tired, but not sick. Please do not make comments such as, “ but you look like you feel better!” When I feel better, I will say that I feel better. Also, remember that like any other teen, I want to look nice I don’t want to look sick.
I have also received remarks like this, “ well you can’t be in too much pain if you’re still smiling!” Now, let me ask you this; have you ever been sick with a cold or flu? You are probably thinking about how grouchy and depressed you were in the five-day span of that cold. However, most of us with RSD have been in pain seven days a week, 24 hours a day for weeks, months, or years. I cannot be depressed all the time. I try to be positive and happy for my friends and family, even though there are times that I’m not as happy as everyone assumes.
I would like you to understand that RSD is a neurological disorder, not a psychological disorder. Remember that while depression may occur after RSD and might hinder recovery, depression does not cause RSD. Also, being sad or depressed after the onset of RSD does not mean that any of us are crazy… wouldn’t you be discouraged if you spent every day, every hour, and every minute in pain without ever knowing when or if you will recover?
Please don’t expect me to act the same and think the same as I did before RSD. Constant pain can make me annoyed and sometimes I get frustrated easily. Meds can make me drowsy, dizzy, or might give me headaches. I might miss school for doctor appointments or physical therapy. When I do come back to school I am often tired, so if I can’t carry on a conversation or concentrate in class, please try not to get impatient with me.
Have you seen me walking? Or have you seen me with shoes and socks on? Please don’t ask me absurd questions like, “ does that hurt?” Of course, it hurts. It hurts so much sometimes that I don’t think I can bear the pain anymore and I wish that I could just curl up and die. Please understand that I have to do things such as trying to wear a shoe or sock or walking to get even a little better. I know I have to do these things, but it is extremely painful because of the hypersensitivity. Please don’t act like you understand everything about RSD because you don’t. I don’t mean to sound so harsh, but reading an RSD brochure or looking through an RSD info site doesn’t make you and expert in pain until you have experienced it. Unless you are and RSD’er, please don’t try to keep offering me recent advice or a “miracle cure.” I understand you want to help me, but only I know what helps me and what hurts me.
An RSD’er once said that sometimes with RSD you have to take two steps back and one step forward. This statement holds a lot of truth to it. RSD is unpredictable and none of us who suffer with it ever know how we will feel from day to day. I think that is the hardest thing for anyone to understand though, except for those of us who suffer with RSD. Everyone thinks that once we get on the road to recovery, we should stay there… but RSD differs greatly from a football injury or a ligament strain and we are going to have many setbacks. One day, I might be able to move around a lot, the next I can barely get out of bed because the pain is so bad.
Don’t ever accuse me of not wanting or not trying to get better. You’re not with me all the time and you don’t know how much I have tried and continue to try to get better. Small things like trying to desensitize my skin and letting water from a shower flow over my leg or just lying my foot on the ground is an achievement for me, but of course no one ever sees that. They just want me to be able to jump one day and be healed. You don’t know the pain, the loneliness, the fear, or the nightmare RSD is. I remember the first time I was diagnosed with RSD. That was horrible.
It all happened late one night at homecoming in the seventh grade. I was running around having a great time watching football, and being with my friends. Then something happened that changed my life forever. At first it felt only like I twisted my ankle, then the pain spread up my leg to my knee. The pain was so bad but I didn’t want to admit defeat so I kept playing and trying to have a good time. I didn’t think anything about the pain until it got worse and worse, so bad I could barely stand. I was stupid. Instead of going home I stayed for the bonfire that was after the game. Then after that I got a ride with one of my friends and went home to see if rest would make my leg feel better. In the morning the pain was worse than it was the night before. I couldn’t go to school and my mom took me to the doctors. I couldn’t put any pressure on my leg so I had to hop everywhere until I got a pair of crutches. The doctor thought it was just a sprain like I had, so he wrapped an ace bandage around my knee. After a few days the pain was still just as bad so I went back to the doctors. Now they thought maybe it was broken so I was sent to the hospital to get X-rays. There was no break anywhere and that is where the RSD ‘theory’ comes in. I had to have a ton of tests and all of them read RSD. That was when I was diagnosed with the worst possible neurological disorder a kid could get. Life was not the same anymore. I blamed everyone for my problems even though they had nothing to do with it. But then I learned that my problems were mine and mine only. I learned that I had to be strong in order to keep my life semi-normal. It was hard but here I am today, I am resilient, a survivor and determined not to quit fighting…
And what I really need is for you to understand me. Remember it is still me inside this body filled with awful pain and I still like laughing, talking, and doing ‘normal’ things. Remember that I’m still me even though I have RSD.
I have learned that every child with RSD has a story almost exactly identical and if his or her name weren’t there, the stories wouldn’t be able to differ much. I have also learned that life should be taken in stride. So, my time on earth, on fate depends. But all that happens in the space we are meant to live depends on me and choices I face. For better or worse they’re mine to make. So my time on earth will be well spent and when I leave this world I’ll leave with no regrets. And I will continue to learn about what RSD teaches me…

my life in pain
 

My name is Crystal. I was diagnosed with RSD/CRPS 9 years ago. Only I have suffered since I was, well, born. Im 27 now. I walk like a 99 year old amputee, I move like molasses out of a freezer, I think like Im too old and wise for my age, and I love my life. I've peed myself because of laughing, inability to walk, and of course pain. I have no friends.. Or should I say, no friends have me? !?!?!?! I have a low tolerance for inept, lazy or just plain ignorant people. I refuse to live off narcotics. I found the man of my dreams and married him. I have 2 dogs that weigh more than most teens do.
I demanded my doc PROVE to me he was right when he said it was RSD. I've had 27 surgeries. Im a rare case of RSD, it has crossed paths of my body and infected both sides and now is working on my upper torso. I laugh in RSD's face. Unlike most women, who terrorize themselves over weight, beauty, popularity, I terrorize myself over actually cleaning the whole house in one day, cooking a meal for my husband, and going to the 12 docs in one month. I dont brush my hair daily, it hurts, I dont want to burn that little amount of energy on THAT one task, and my husband likes the "got stuck in a tunnel during gail force winds" look.:winky:
On a serious note, I know the pains and agonies of this disease, I've had it my whole life. 29 docs it took to find the right name/reason for my problems. I've had every diagnosis under the sun, including one dr telling my parents "she's just an overweight, unsociable, depressed kid." Partly true, I was overweight and depressed. BUUUUTT the inability to get up and go like the other 9 year olds does a number on one's head.
I suffer from many other health problems, R.A. O.A. Gout, arachnoiditis, salandiatis, sjogrens, lupus, insomnia, chronic sinuitis,fibromyalgia, osteoperosis, and of course depression.
AS you can tell I have the immune system of a turd.... But in the mist of all this I have a wonderful husband that cherishs me, loves me, spoils me, and puts up with me. He will cancel guys night out to stay home and play cards with me, he will run to the store for tampons even if EVERY person he knows is in the store at that exact moment. he proposed to me while I was on crutches (had been on them 14months by then) with a cast up to my booty cheek. He said it was the best time to ask, since I couldn't run. ( had him fooled, I've never been capable of running)
He is willing to have a vesctomy so I dont have to indure any other surgeries that arent "life altering for the better." He loves our fur babies like most would love their skin kids. he rushes to my side when I fall while walking on flat surfaces, and laughs when he knows he shouldnt.
I learned to deal with my pain and heartaches from my mother, who suffers from dibiltating disorders. She doesnt understand the RSD but sure tries. Nobody around me understands it. They dont go through it. I have had friends, and lost them. They are scared of me, maybe they think im contagious or maybe its too hard to deal with. Either way I understand. I've never asked why me. I am actually thankful that I, instead of my sis got dealt this hand. She wouldn't have survived 18 years, let alone 27.
I need support for the days I feel it the most, have tried shrinks, they just want to dope me up, or tell me that I am doing fine on my own, why spend the money to see them...
I went to an actual support group once for pain sufferers, but when your the only under 50yr old in the group, its disheartening. These elderly people worked and tortured their bodies for decades to end up in pain. I was merely born.
I only need 1.5 semesters to have my assoc in criminal justice. But I had to drop out because I am unable to get around the campus. I havent had the urge to go back, no time with the doc's and trying to live my life to the fullest.
I have not worn socks or real shoes in over 12 years. I would rather slam my head in a vault door than feel my feet wrapped in any fabric/constricting materials. I snap at people when Im in so much pain but refuse to give in to it.
My dogs are trained to the words "watch feet" and actually know what that means. One has not had his tail docked and is learning to "hold tail" so it doesn't wack my legs.
I've learned how to live in Illinois with freezing temps and unable to wear pants or any clothing that touches my lower legs or lower arms. Im almost always barefoot. During the winter my hubby has been trained to look for signs of frost bite, since I cant wear socks and dont have "true" feeling in my toes, he helps me watch to make sure I haven't deep froze any digits off.
I fall, alot. I cry at stupid things, Im obsessed with other people's feet. I watch them constantly. I hate feet.
I wonder what its like to have true feeling in my lower limbs, what is like to walk without pain shooting through me so fiercly that I want to rip someones head off, so that they may understand what I feel.
I answer "does that hurt" with " if I jabbed you in the eye with a hot stick, would that hurt?" I've learned that its better to misplace your wedding ring than have it cut off from being too stubborn to remove it when your hands swell. I've made little kids cry when they looked at my "multi-colored" legs with the scars and battle wounds. I've possibly prevented some tweens from doing drugs, when they asked "why your legs look like that" I've responded with "well when I was about your age I decided to try smoking pot, and the next day I woke up and my legs were like this."
The world as taught me to be hard and mean, and still be able to stop and help an elderly lady with her bags. I dont mind the people staring any more. I still get offended by lazy people, they have no clue what they are missing. One thing I can say is I cant wish for my life to be any other way, that could be the bad way. Without pain I could have turned out skinny and a slut, or an addict, or even *shutter* lazy. My life is mine, painful, but so full of love and trials that only I can live it. I do wish to find some common "grounded" friends or associates. There are things I dont handle well, and I think with the help of like minded (or should I say like-pained) people I could better handle some things.

Diagnosed w/RSD after foot Surgery
 

Oct 26 2009 I had a minor foot surgery removal of neuroma, a cyst on foot and shaved off bunion.

One month later my leg turned a different color. It would be red or blue; my foot was swollen and also discolored.

I had severe burning pain knife like in my foot and lots of sensitivity and needle like pain.

I have been taking Lyrica and getting Lumbar Blocks. It is better now my leg is not discolored. I can walk more normally. I still have sensitivity, tingling, discoloration of foot, skin looks shiny and swollen.

My story of RSD!
 

Hello! My name is Courtney and I am a 21 year old girl, who finally after atleast 4 years of searching for answers was diagnosed with CRPS! I am new to NeuroTalk and just wanted to tell my story and get started with a support team of people who understand what I am going through.

When I was in 4th grade, I was a competitive gymnast and was getting ready for a competition the next day. I was practicing my vaults and when running, felt a pop in my buttock area. After a doctor vistit and MRI it was discovered that I had avulsed my ischiam in my pelvis. Since I was so young the treatment was to stay out of gymnastics a few months and let the pelvis heal on its own. After a few months I went back into gymnastics and trained and then ended up quiting and started cheering competitively as well as as school.

My freshmen year of high school, I was dropped doing a stunt and landed on my butt. After going back to the dr. and another MRI, result's showed either a re-tare of the ischiam or that it never healed originially. I quit competitive cheerleading and layed off the activity. Pain worsened and worsened through out the years and my leg began to have tremors and shakes when it got tired and was hurting bad. My senior year of high school the pain overtook me and I basically became paralyzed, and in so much pain even to touch my foot would completely un-nerve me. I was taking hydro-codiene and morphine at home and it hardly even touched the pain. Every doctor I saw would take a look at x-ray's and tell me "they wouldn't touch me with a 10 ft pole." Finally, after many dr's, I found a confident orthapedic trauma specialist that said that he could make me better.

Surgery was perfomed. The bone that I had avulsed has entraped my sciatic nerve. The bone was removed and my nerve was released. The night after the surgery I could already tell that I was better! Within a week I threw out all pain medication and was begining to walk again.

About 2 months later I was jogging and felt the same familiar pain shoot down throught my toes. Back to the doctor for more MRI's. Results revealed heterotopic ossification in my muscle adjacent to the sciatic nerve. My surgeons exact words were to suck it up. Determined that I didn't HAVE to live in pain, I searched for doctors. I went from orthapedic surgeons, to neurologists, to back specialists, since my pain had began to go into my back as well. One orthpedica trauma specialist told me it was in my head and I was making up the pain.
Therefore, I decided to put myself with a psychologist and pain management doctor. The psychologist told me that I was fine, I was just in pain, and the pain management doctor put me on different medications that gave me headaches and horrible side effects but never helped with pain. I even tried one medication that gave me mood swings and suicidal thoughts.
Finally, after researching online we found a wonderful doctor at the hospital for special surgery in New York. We traveled to New York to see him. Which was the first place that RSD/CRPS was mentioned. Me, being sick of doctors ignored this, by my mother went home and researched it. The New York doctor prescribed a lumbar sympathetic block to be done at my pain clinic back in Texas. My pain management doctor was completely convinced that this was not the case and that this block would not help me, but he agreed to try it out. I had the block and felt immediate relief! It was like a new me, and I had never felt that good in my life!!! The temperature difference when the block took was a 10 degree difference, which my pain management doctor was pleased to say that it was afterall a succeful block.
The block lasted me about 9 months and I received another block in December of 2009. The second block took just as well, but my back pain was getting worse! I proceeded to go see back doctor at Texas Spine Team. Who took MRI's and referred me to another physiologist in his center. The MRI's came back nomal. Even the heterotopic ossification and dissapeared, which in our opinion was an unbelievable gift from God! Good news, which also confirmed the bad news of CRPS!

My physiologist talked to me about options, but listed me a favorable to recover! I know I have a long road ahead of me, and I am willing to do anything to get better!!! I am excited to have found this website, where I cant talk with others in pain, and we can give eachother positive feedback!

Anyways, that's my story! Can't wait to hear from everyone!!!

I am 28. I was diagnosed with RSD in March 08. I have had many sprained my right ankle many times through high school. Through most of high school I stayed on cruthches due to the intense pain in my ankle. I would have MRI after MRI to be told it was in my head. I would do physical therapy, and to no avail it made it worse. My doctor kept treating me like all I was, was a teenager looking for my next high. But the truth of it was that I was a straight A student that had never smoked, drinked, or did any kind of drugs. He told me just to take aleve and that should help. This continued for years until I fell again in December 07. When I fell, I went to the Er. They put it in a splint and told me to see an orthopedist. My ortho doc here in town did not take my insurance. At the time I was so upset but, it turns out it was a blessing. Since he did not take my insurance I had to start looking elsewhere for a doc. That is when I found my ortho I am now seeing who knows alot about RSD. After being in a cast for 6 weeks, the pain was still very much there. I told him of my troubles since high school and he said he believed it was RSD. He then sent me to a pain management doc. They are like very best friends and would talk about my case together. I had a triphase bone scan and some tempeature test done which then comfirmed the diagnosise that had been many years in the making and suffering. I then recieved a lumbar spinal block which did make temperature difference but not a pain difference. After many attempts and a epidural drip for 5 days inpatient, I had a spinal cord stimulator implanted in April 09. This has helped so much with the pain but the battery is so sore. They have me taking Gabapentin 800mg, Hydrocodone10-325, orphenadrine 100mg, meloxicam 15mg,sertraline 100mg, buspirone 15mg, and trazodone 50mg. I see them as well as a physciatrist to help with the depression that just comes with it. I am so glad to have people to understand what you are going through to talk to. I look forward to talking in the future!!

I'm new to RSD and this forum
 

Hello, all!

I am new to this RSD hell and new to this forum. I have spent the evening reading tons of posts and you all seem like a super bunch of people!
I look forward to sharing stories, tips, highs and lows and, most importantly, laughter!
Gentle hugs to you all,

Kelly: grouphug:

I am sorry for your loss by the way.. Wanted to state that first.. I was working in a nursing home.. Just been there 2 months and a resident got violent.. i got hurt on left hand.. wc put me on light duty for week. went back to nurse practioner and she released me after i told her it was still hurting badly.. went back on christmas day in 08.. what do u expect happens? reinjures the hand.this time it shoots up my arm.. now i have it all the way up in my shoulder and into right shoulder and feels like its moving down right arm.. and my doc says there isnt anymore i can do for you.. i have no pain meds that have ever helped me... I am suffering alone. work comp hasnt paid one dime for my meds.. and on the 1-10 scale i am way over 10 more like 30,,,
i lost my job shortly after my second injury.. 6 months later hubby lost his job.. we are living on my unemployment and 70 bucks a week.. walmart hired me with restrictions,, and now wants to fire me cuz of those restrictions.. so i feel for you.. i really do.. so if u ever need to talk email me and ill give you my number and u can call me or ill call u.. cus i just had to go on antidepressants

1 year old rsd victim
 

I recently became a victim of rsd..I had my first injury on 12*12*08 and the second on 12*25*08 and were not positive which one caused the rsd.. it is progressivly getting worse. it stayed in my hand for several months.. then it went to the elbow.. wasnt awful but it still hurt pretty bad. hit both shoulders.. now the elbow is worse than the hand ever was and the should on right is getting much worse..i have had stallage ganglion blocks,, no help.had a beir block no help.. have tried emla cream became immune..basically i have no meds to help me.. my last pain doc told me it was all pain med control and he couldnt help me. now this is all work comp. and from reading we all know that they arent paying for my meds. and lyrica is high dollar and i dont have the money to pay for it.. hell they fired me after i got hurt.. lost my house. hubby lost his jjob cuz of economy.. this has been horrible for us.. I finally had to go on antidepressants. just for left arm my disability rating is 59% for the whole body.. 99% for the arm. and so for noone has given me any hope.. so if anyone has hope please share.. or knows of a good doc that can help me please let me know...
thanks

The RSD Beast
 

Hi. My name is Anita and I was diagnosed with RSD in the left arm in Jan of '08. I fell at work landing on my left elbow which drove my shoulder straight up. At first it wasn't so bad, I was sent to physical therapy but after 2 weeks I wasn't improving at all. About 30 minutes after I would get home my arm would swell up, then it began to turn purple and get cold. At work it would turn almost black and it would be literally as cold as ice. I couldn't get the treating physician's assistant or the physical therapist to listen until it happened during physical therapy one day. I was taken around to the assistant who didn't have a clue so I insisted on being sent to someone who could tell me what was wrong. I went to an orthopedic specialist and he knew immediately what it was and sent me to another doctor to see what he thought. During this time I was still on full duty at work (which is heavy type of work) until the doctor realized that it truly was RSD and he began treating it. I went through a series of tests and medications, none of which seemed to work. Right now I'm on Lyrica, Mobic, and a Lidoderm patch which seems to help the most. Right before I was declared at maximum medical improvement I was sent to another doctor to see if he agreed with my doctor and he did. We all discussed doing nerve blocks but I wasn't really for it. My case isn't severe yet, it was diagnosed as CRPS II, and I didn't want to get a nerve block that they said would only last a few months and then have to learn to deal with the pain all over again. I was also told that often when the pain returns it is far worse than it was previously. Like most every one here, people just don't understand what you are dealing with and why you can't sleep and how bad that awful burning sensation is. I describe it as a bad 2nd degree sunburn that someone is scrubbing with scratchy wool, then there is that creepy sensation of spiders crawling up and down my arm (of course one time there really was, kind of funny), and the deep bone pain. I recently lost my job because of this, the workplace decided after 26 months to try to force me to violate my restrictions and when I wouldn't they said they are putting me down as a "no call no show" whether I show up or not. That's frustrating, my daughter, who is a single mother, is having to support me, she works 2 jobs and is just exhausted but really is wonderful support. It is great to have a place to go where other people understand everything you are dealing with. I look forward to getting to talk other people here.

Hello and HELP!!! Need information!!!
 

Hi! I'm Water Rabbit!

[QUOTE=frogga;57601]Hey;

Most of this is copied from earlier on - but as it took me days to write I don't want to have to retype it!

Basically (if you can't be bothered to read this as it is very long and boring). I got RSD when I was 16 after injuring my right wrist and I am 21. In that time it has spread full body and I have developed secondary dystonia which is also body wide. I have just started at university and am studying psychology. I am in a wheelchair and have a live in 24 hour carer. I love animals and have 5 cats and 2 dogs at home and unfortunately none at uni. I used to be very musical but now prefer hanging out with my friends or reading.

Take care and pain free hugs!

Rosie xxxxxxxxxxxxxx (a.k.a Frogga)

<snip>
Hi Rosie!

You history was not "boring" at all, but very informational and helpful!

I've had chronic pain since I was a child, am now in my 40's and yet the RSD is new to me. I NEVER thought I would be asking ANY doctor for a wheelchair, but in the last few weeks I've done just that!

I've considered having a live-in caretaker, and may not have a choice if this gets any worse.

Have you ever thought of writing a book on RSD/Dystonia and your experiences? feelings? treatments that worked for you, and those that didn't?

My RSD happened after I'd had the flu for about 3.5-4 weeks (H1N1 I believe, as a friend's children had just been given live H1N1 vaccine, and my immune system is, well... not the best.)

I've been tested for (and misdiagnosed, as the doctors gently put it) a few times now. My RSD started in the big toe joint (metatarpharengeal joint), and has now spread up my leg. I already had chronic pain problems, which are FAR worse now, as a result of bed rest I'm sure, and I too am concerned about this spreading.

I've had muscle jerking, like I had before, yet seriously far more pronounced, and harder to "hide" than it was.

The docs think my RSD started from an old back injury, a 20-year-old back injury, which I'm told is quite rare.

If I listed all the diagnosis I've had over the years, I'd pretty much cover about half the Merck manual it seems!

I am tired, and I too had vascular testing, which was thought to be a clot, until the cardiovascular surgeon saw the pictures I took at the hospital, the swelling, and realized the "non-compressable veins" were actually already compressed by the swelling. He's going to retest in a couple of weeks to be sure, and be sure my foot is up and hopefully not as swollen as it was for the next test, but the tech that did my duplex in the hospital didn't even measure my swelling (A common mistake), never noted it anywhere, and I was SO glad that I started keeping a photo diary. It's difficult for me to write by hand b/c nerve damage from anther injury (dog bite w/ open or compound fractures, and I too had lost use of my entire hand for a year and was told at one point amputation was possible.

I put my foot down, and it turns purple. I put it up, it looks pretty normal.
Still hurts, like you said, even with a fan, and sometimes even a breeze, or the doctor walking by, and not even touching my foot is excruciating. A podiatrist I was sent to early on purposely dropped a piece of foam on my foot AFTER I told him it hurt when he walked by, and then laughed... needless to say, I never went back to see him, and later was told by and Er doctor that this guy only was fit to make a "prescribe" shoe orthotics, and only had a 2-year degree! (some are actually doctors, this guy was not!)

Well, I hope you realize how much your post is appreciated! I'm not in a wheelchair, although there have been days, weeks and months of my life I've pretty well been in bed, so I know what that is like!

Grew up with Graves' disease, and spent much of my time in the hospital since I was 7 years old. I was able to work for a while, and thought I was over it, then got rear-ended in a car accident and have never been the same.

I wonder, of everyone here, how many others have thyroid problems (low or high levels)? Anyone have surgery and or radiation to treat thyroid? Been on synthetic and/or natural thyroid meds? I wonder, if like fibromyalgia, there might be a connection?

Does this run in families? (My mom had an injury while pregnant with me, I'm told, and she had some nerves clipped because the pain was unbearable.) A soda bottle fell at the grocery store on her foot, and she did have surgery while pregnant with me... Make one wonder if this might have a hereditary pre-disposition?

I want to know SO much more!

Any good articles, data, etc. from GOOD resources would be greatly appreciated! I have a strong medical background, and am published in the medical community as well. I did manage to make it through a lot of my schooling, yet would like to complete my PhD in Naturopathy, emphasis in herbology and kinesiology.

Frogga, thank you again for sharing! I left myself out of the relationship arena for SO long... seemed to take FAR too much energy for me... and I feel I do better alone, but do get a bit lonely from time to time.

Until a gal from my church came to work for me, and she'd only seen me on "good days" before then, she couldn't understand why I couldn't get up, or even why I was on disability... Now she kinda gets it, but I hid it pretty well. Few people in my life have any idea how much pain I'm in, the muscle jerking, etc., and I found I may have even held some of this back from my doctors. I might have told them about it, but I never really let anyone see me at my worst, nor did I feel up to being around anyone... too much effort when in a lot of pain to explain my heath issues to someone, or a lot of people. I've even made a form to email to new doctors with my medical history, medications, allergies (which I have MANY - food and medications, pollens, etc.) I quit going to most friends' homes because of food allergies (even someone cooking with olives or olive oil and some other foods can put me into anaphylaxis.

I've never seen a doctor's intake form that had enough room for my allergies or surgeries! Always had to attach it or write it on the back or the form.

Anyone else seem to be allergic to a LOT of things? Have a lot of surgeries?

So... Thank you and that's a bit about me.

I look forward to talking to others that are going through similar things, and if we help one another, perhaps we can unlock some keys to this painful nasty stuff we are dealing with!:grouphug:

Thanks again Frogga! You gave me the courage to share a bit about me!:hug:


Anyone else with thyroid issues? Back injuries?
RSD without a recent notable injury or no injury at all? RSD after illness? Flu? H1N1 or suspected H1N1?

Has heat or ice worked better for you?
TENS units? Help at all? Harm?

How do we keep this from spreading? (I've been told and read mixed things!) I want to prevent this from going anywhere else if at all possible!!!

Any good books?

I want to be an expert on this, and am more or less on fibromyalgia, CFIDS and post-Graves' treatment hypothyroidism - AND live with these three and more affecting my body... I'm NOT an easy patient, as if there is some drastic treatment or no treatment, I want to know why or why not, options, and work WITH my doctors, NOT be told what to do!

Anyone have short term memory issues? Cognitive issues?

New to this forum & RSD
 

Hi! I'm not really sure how these forums work, so I'll have to play with it when I have time. If I don't reply right away or do the fancy friend things, please be patient with me.

My 16-year-old son was diagnosed with RSD this last Nov. 2009. He actually had it before in his right foot when he was 10, and it was awful, but he was miraculously healed after only 3 weeks. We took him to Texas Children's, which was a miracle that he got seen right away, and to another ped. neurologist, and they both diagnosed him and started him on Neurontin. When he was healed, they both said it was a miracle and to thank God, which of course, we did.

He's been having some residual pain off and on since then, but few and far between and still very active and normal. He even had some sprained ankles and torn ligaments in his right anke and it took longer than most to heal, but he was okay, thank God. Then out of the blue, it came back in his right ankle. We took him to the orthopedic who put him on Daypro or Ultram and said he would be fine in a few weeks. After a few weeks, he was worse and said that it felt like the RSD was coming back. Whoever heard of someone getting worse after they've been healed? But he definitely has it, although he doesn't have that horrible alloydia that he had before, and he is able to walk with considerable pain. He had the first nerve block at the end of Jan. which worked immediately but faded to nothing after 3 days. He had a 2nd nerve block a week later because his pain was back up to a 10 with taking 8 Vicadin a day. It was also immediately successful but lasted only 6 days. He's only taking 3-4 Vicadin a day now and still doing physical therapy 3 times a week, but it hurts. He's started having headaches and disoriented thinking so we're going to see the dr. this Friday. I'm wondering if he'll want to do another nerve block. I'm hoping he'll think a ketamine infusion would help and that he's able to either do it well or recommend a dr. in Houston that does. Thanks for this site. It's really helpful and seems very supportive!

Have been lurking for quite some time trying to learn from all of you.

I'm 51 and am not diagnosed. My skin has been burning, sweating, skin hypersensitive, hands/fingers red/bluish at times, watery blisters, finger tips very sensitive, caffeine intolerant. Oh, and did I mention, a pain in the rear to live with?

Just started with pain center after seeing 2 rheumys, 4 neuros, psych nurse, etc. Drs have ruled out multiple sclerosis, rheumatoid arthritis, lupus, and fibromyalgia.

Thanks for this great forum!

Hi,

I have had leg problems since I was 11 (I am now 21), I had a series of relatively minor sports injuries. I was incredibly sporty, focusing most of my time either on athletics (the hurdles in particular) and on horse riding. By the time I was 15/16 they started giving me steroid injections every 3-4 months into my right knee, which kept me wallking until mid August (09). I had another steroid injection at the begining of September as usual however it didn't work. At that point they diagnosed RSD.

I have had problems controlling the temperature in that knee for a number of years, sometimes its really hot to touch other times it feels like a joint of meat you've just bought from the butchers. It also changes colour a lot and has done for a number of years.

I have now been on crutches for 7 months. I am in constant pain and on high doses of medication which I don't think is working at all, however when I don't take the medication I end up literally screaming my head off from the pain.

They have now said that they think I have got RSD in my right wrist from being on crutches (a couple of months ago they were saying I had tendonitis in both wrists from the crutches). So I'm having to wear a wrist splint a lot of the time.

My knee has reached the point where I am having to wear wither pyjama bottoms the whole time or linen trousers . On cold days I end up wearin the pyjama bottoms under the linen trousers. It is just too sensitive for me to have any other choices.

I am on a lot of medication and I'm not sure what is working and what isn't. In case anyone can make any recommendations having 'tried and tested' a lot of these no doubt I would love to hear your advice and opinions. Here is what I am on:

Naproxen- max dose,
Omeprazole- to deal with the side effects of the naproxen,
Lyrica- max dose,
Tramadol- max dose,
Paracetamol- max dose,
Quinine,
Citalopram,
Buccastem- max dose- to deal with the tramadol,
Oromorph- only when it flares up really badly.

I am also on a lot of supplements:

Dual Giinseng, Turmeric, Balance B-50, Multi Omega 3-6-9, Methyl B-12.

I would really appreciate any advice that anyone can give me.

Thanks,

Kate

I need help for my brother who suffers with RSD
 

My brother Mike is 38 y.o. and has had RSD for several years. He would get it in one limb then it would move to another. This past year, he did not have any 'flare-ups'. He had surgery a week 1/2 ago on his finger and now the RSD is back in that same hand he had surgery on. I dont understand why it was 'dormant' and now it is back? He lives in Buffalo, NY and sees a pain specialist, I don't know the name of the doctor though. Anybody have any advice or thoughts...it absolutely devestates my entire family when he goes through this. We feel so helpless...I just want to do anything I can to help. Any tips / advice would be great. Thanks....Judy

Hello everyone. I found this site by accident, but I sure am glad. My husband who had a surgery over a year ago on his left knee, has developed RSD, that has spread through out his entire left leg, groin and also starting to go to his left arm. What a painful road this has been, literally. After months and months and countless visits to various doctors, we are undergoing treatment at Johns Hopkins. He has already tried a nerve block, which lasted all of 1 1/2 days. We go this coming wednesday to discuss the possiblities of undergoing a spinal cord stimulator inplant. He is scared to death. He also does not want to continue on the medications that he is taking as it really makes him wacked out. Not sure what direction to take. Is there anyone who has had the stimulator and would you mind talking either by email or even phone to us about this?
Before all this took place, he was a very active, hard working carpenter. This has not only taken a physical, but also a mental and emotional toll on him and the rest of the family.

Hello bpkaper and welcome to Neurotalk.

We do have a forum specifically for SCS (Spinal Cord Stimulators) and Pain Pumps. Actually it's a subforum in NeuroTalk's main Medications forum.

I've copied your post over there as I thought more people who have an interest in Spinal Cord Stimulators might see your post if it was in that specific area.

Here's a direct link to your post over there: http://neurotalk.psychcentral.com/sh...d.php?t=117256

Hello & Welcome -

If you haven't posted in the main area of the RSD/CRPS forum, please do so, as sometimes new members get missed if they only post here.

Main area for the RSD/CRPS threads & posts-
http://neurotalk.psychcentral.com/forum21.html

Hi everyone - I posted this in the main forum I think, and Rrae kindly sent me in this direction so as I dont have the energy to re type it all I have copied and pasted my story in as well. I feel happier already as I dont feel so alone :)
************************************************** ********

Im Jo and turn 38 next week. I am a single mum to a lovely 8yo boy, Harry.

I have no lower right arm (since birth) and use a prothesis - this has never caused me any real problems more the odd challenge. In June, as a single mum, Harry & I emigrated to New Zealand, all was great until Dec 2007. I had an accident and splattered the brachial plexus nerve in my left 'good' shoulder and arm. The pain, over the days, became unberable - after many doctors visits and later specialist visits I was diagnosed with CRPS in my left arm and shoulder. Then in Dec 08 I kept getting pains like a hot poker shoot up my left foot and leg, and also I would get a pain behind my eye like no pain I have experienced before. My specialist told me my CRPS had spread, I was so gutted .

A few months later I felt that familiar burning, stabbing and hot poker pain come in my right side but at a slightly less intensity than on my left, and it hurt to use my prothesis. I saw my spec again and got refered to another spec that specialised in anaesthetics and he confirmed that the CRPS had spread throughout my whole body - I couldnt believe it.

I have been on so many pain meds. Most made me feel like a zombee and some, like the gabbapentin, put weight on that I didnt want which also didnt help with the pain especially on my leg joints and back. Now I am on Oxycontin 4x day plus antidepressants and meds to help me sleep as pain is not condusive to good sleep. My only possible option is the ketamine coma but it isnt recognised in this country and I dont have the funding to go abroad to do it and it scares me to be in a coma for days, but the CRPS and what I read about it scares me even more.

At the risk of whingeing, I then find if I do get any decent sleep then the morning is hell because my body is locked up. Harry comes and sits on my bed for a cuddle and I have to tell him to get off because it hurts like hell where he makes the matress squidge down where he sits on it, and if he cuddles me Im like 'be careful' and it then breaks my heart when he goes have you had your pills mummy? they wont work unless you take them - he shouldnt have to worry about things like that at 8.

My saviour are horses. I love horses. I love their smell and the softness of their touch. I used to get frustrated when Id see people brush them like a tickle, thinking horses like a good decent brush, now Im like one of those people that frustrated me, so now rather than hold a brush I just stroke the horse. I guess it is good therapy and I am learning to focusing my mind to try and bypass the pain but my it is not easy.

My horse Drago, was a huge part in my rehabilitation along with my good friend. It is great to ride as when my back locks up the gentle moving of the horse makes my back and body 'give in' as it is hard to fight half a ton of horse.

My aim is to ride in the London 2012 Paralympics, and possibly the World Equestrian Games (WEG) in Kentucky later this year. My own horse is sadly injured (looking permanent) and I have been riding my friends horse JD, he is such an awesome dude, he takes such good care of me as he knows when I feel wobbly and if I lose a stirrup he will stop until I regain my balance. I now have the ride on a mare called Ella who is like a female JD and we are training towards London and WEG if we can do it in time. It is a long shot and training is and will be extrememly challenging with many tears, too much pain to want to think about but I have to have a focus as I feel if I stop I will just shrivel up into non existence - I have also found that having spent an Easter sitting down lots I feel worse body wise - even though I enjoyed the time with my son and great friends

I am very happy to have found this site as I think that there will be others in a similar situation, and having read through some posts, it is an opportunity for empathy and support - to be able to give and help others having a tough time and receive it.

So hi to you Shannon and the other members on this site, and fellow CRPS sufferers - I look forward to being part of the community.

Thanks
Jo

ps how do you put the icons in please? Ta

Hello Jo
 

Glad to see you found the RSD forum! :)
Feel free to start a new thread of your own if you have any specific questions....I just want to make sure the RSD folks have seen your introduction! You've been through SO much!

You asked about how to post the 'icons'......
Are you referring to the little 'smilies' (funny characters) or are you wanting to create an avatar for your profile?

My brain is shutting down for the nite :o, so I'll try to help you with that tomorrow k! Or maybe even someone else will come along and shed some light....
When I first joined this wonderful forum, it helped me alot to look thru the User Control features and FAQ's.......I'm amazed at how many things are available here! If I'm not mistaken, you may be limited on what you can do until you reach 20 posts...... You can go to the FAQ page (at top) and use the 'search' feature and key in words that pertain to your questions and you may get good instruction there.
I'll be checkin back with you soon

Rae
:hug:

Hi Rrae
Thank you for offering hugs and support, I dont know you but it feels like I do and it is a great comfort. Re the icons I will read the FAQs tomorrow and as for the avatar I hadnt even thought of that lol. When I look more I will see if I can upload a photo of my son and my horse and maybe one of me riding. One thing that challenges me with the riding is the tightness of the jodphurs - it becomes one very tough mental game!

My brain is half asleep at the moment - I went for a lay down but now cant sleep so have got up again, I will have a cuppa then try bed again - I find DLS messes with my body clock - you wouldnt think 1 hour made such a difference!

Been a harder day today as it has been raining and I dont know how the cold and damp affects other RSD sufferes but I find damp days far more challenging. I always feel tentative at this time of year as we head into Winter (my friends I have in the UK I understand are having cold snaps and snow in the middle of their Spring!)

Another Q if you dont mind me asking do any of you get a deep and maddening itch that then becomes very painful to scrach? It drives me wild - showers exacerbate it and I hate the water touching my skin anyway but my feet, back and chest itch to the point I can make it bleed and I havent found a way to relive it yet apart from scratch. I do get funny looks!

I often get hot and cold sweats when I push myself and at the airport, on the way home, from Oz to NZ I did look and feel pretty rough, and the custom lady took one look at me and asked whether I had Swine flu! I hadnt but my gawd did the people around me stand back really fast. I felt eyes on me from every direction!

I look forward to reading more posts in this whole forum and thank you all again for your welcome. Id love to hear your stories, if they are in this site I will find them.....though I may need a point in the odd direction lol.

I have also passed this wonderful forum to a lady in USA (this lady leant me her horse for the Atlanta Paralympic games in 1996 - it was borrowed horses then) we havent seen each other since but have remained in touch and I believe the lady recently had to have a SCS implanted so I passed this on incase she hadnt seen it.

Enjoy your day, be strong, and for all those on a different time zone I wish that you have a bearable and hopefuly good night .
Cheers
Jo

Hi new here
 

Hi, I did post in the new member introductions but then found this so thought I'd do the same here.

I have had CRPS/RSD for over a year. I am here for information, answers to my questions (hopefully) and to talk to people that actually "get it!"

Thanks for the site, I look forward to talking with you :)