Hi
I am 27 yrs old and my RSD diagnosis was confirmed a few days ago after it showed up on a bone scan. It is in my left lateral knee. I have had 3 surgeries in that knee. My 3rd being in Jan this year and a major one. I was on bed rest for 8 weeks. I basically woke up about a month ago in pain so severe it made me cry. I am usually not a crier with pain unless it is really bad. I am on lyrica, oxycontin, a cream containing neruotin among other ingredients, and the lidoderm patch. I am suppose to get a nerve block soon. I am hoping once I get the block I can go off the meds and try to get pregnant. I am basically so sick of my knee and I really want to get pregnant. I guess my question is can RSD affect pregnancy and how long should you be off your meds before being able to try. I am kinda over the pain and just want to ignore it and move on with my life. I have been off work since Jan. My husband is a marine and we are getting ready to move from maryland to north carolina a week from today. The move so far has been hard because I cannot help with much and when I try I am in a lot of pain afterwards. I am hoping to find a good dr. there and to get the nerve block asap. Has anyone had the nerve block, if so how soon did you notice it helping?

I am glad I came across this site so I can find answers and do the best I can to get through this. I know I have good and bad days and ups and downs emotionally as well. I hope to learn a lot more. I think the more I know the better I can get through this. I know now it is not cureable but it can go in remission. I am hoping I can get mine to do that.


Erin

I highly recommend the Carolina Pain Institute in Winston-Salem. I have been going there for the past 1 1/2 years. They are totally up to date on all the new treatments and research going on. If you google it you'll find their website. Not sure where in NC you're moving so hope this helps
Jeanne

Thanks I will check it out. I will be moving to topsail island near camp leguene. But I will definitely look into it. I am ok if I have to drive a little bit to go to a descent dr.

I don't know how else to describe how I feel other than frustrated. I have had shooting / buring pains off and on in my left wrist/hand for a few months now..I do a lot of computer work and thought that it was carpal tunnel. The last few weeks it has been worse so I was wearing a brace and trying to use it less then it began hurting so bad I couldn't function, I have a high pain tolerance and was just in tears it hurt so bad. So I scheduled a Dr. apt. a few hours before my apt my arm lower arm and hand got very cold and turned blue...this lasted for 4 hours then it warmed up for a few and went cold again...it does this constantly now. The Dr. tried somethings then sent me to ER to make sure it wasn't a bloodclot...6 hours and some tests later they said no clot probably RSD and sort of explained it to me...told me to follow up with my primary MD. I did that, they ran a bunch more tests bloodwork etc, still waiting for a few of the results but the Dr. said he really thinks this is what it is, that this is the only thing that accounts for everything...as I sit here my hand and wrist on fire I am in disbelieve...I didn't injure myself like I read about most...yet it swells and burns and freezes and just hurts like nuts. They currently just have me taking a lot of ibprofen and some vicoden for night when it's really bad...sometimes it works other times i scream and cry because i can't get it to stop no matter what i do...when it's really cold nothing can touch it without me yanking it away. Is there anyone else here who has this but never had an onset injury? I don't know if I accept this or get a 3rd opinion. I don't know if it will get worse, or better or spread or...I don't know.. sorry for ranting but I don't know what else to do...I'm hoping that I can find some answers, some help by learning more, talking with others. i have to stop now, it's going cold again.

Hello all. Thank God I found this site. My husband of 24 years developed CRPS II (causalgia) after a total left hip replacement in 2006. Immediately after the surgery, while still in the recovery room, he was complaining of his left foot hurting and asking me to be careful walking near his foot (he was afraid I was going to bump into it). I was totally confused because he had surgery on his hip, not his foot, and he was still numb from the spinal. It was like his brain knew what his body didn't yet know. As soon as the spinal wore off he was in agony!!!! He was screaming for me to help him he was in so much pain IN HIS FOOT. I never imagined that after a hip replacement his pain would be in his foot. He couldn't move his foot and had a foot drop. At first we thought he couldn't move his foot because of the lack of mobility in the new hip. We were just clueless, scared and so confused. The day after his surgery, I was getting off the elevator on his floor and could hear him screaming all the way from elevator. I was terrified for him. He kept complaining of his foot burning.

They did minimal physical therapy on the hip, with him dragging his foot, and sent him home 4 days later. The surgeon came in one day and told my husband that he probably had a stretch injury to his nerve and that 90% of people recover. My husband said "what about the other 10%" and he said "they never recover." He basically blew us off and was like you'll be up and about in no time.

When I got him home I swear he suffered a mental breakdown from the pain. He started hallucinating I think from the combination of oxycodone, oxycotton, backlifen, and whatever else they had him on and the constant pain. He couldn't get comfortable. The bedsheet touching his heel and wrinkles in the sheet drove him crazy because it caused such intense pain. I couldn't put any bed covers over him because he couldn't stand the touch and a breeze coming in the window was terrible. I could only stand him up out of a hospital bed once a day to wash him and get him straight back in bed.

Finally we got him to a neurologist who sent him to a Pain Clinic. The doc told us he thought it was RSD/causalgia and did two sympathetic blocks on him but they offered him no relief. The doc said it couldn't be RSD because he didn't respond to the blocks. But when I took him back a year later he again referred to my husband's condition as causalgia. This doctor then recommended a spinal stimulator to help reduce his pain but my husband is so afraid of another doctor performing a surgery on him that he's not yet willing to do this. Every month he has to go to his primary care physician for a refill on his pain meds (recommended by the Pain Clinic) and they act like he's a drug addict. He takes oramorph, lyrica, vicodin, celexa daily. He has a lot of trouble sleeping at night. He continues to try and do things around the house but what used to take him a short time now takes him days. He said he has not been pain free in 2 years -- it's been completely constant. The burning is not so bad now but it is more dull, searing and stabbing pain. Before he was diagnosed they put him through an EMG which about put him through the ceiling and they documented they couldn't continue with the procedure but it showed that he does have nerve damage. I had to quit my 25 year job to cash in my pension because he had no disability and work elsewhere. It has just about ruined our lives. We no longer sleep together because of the pain he's in, the intimate part of our marriage is nearly gone. I feel so bad for my husband.

Interestingly enough, my daughter also had to have a lymph node removed this past week in her armpit and while in the hospital the lady in the next bed told us she also had causalgia and she recommended her neurosurgeon to my husband. She just had the spinal stimulator implanted. Can anyone tell me if they are effective? What is the recovery time for an implant?

I was diagnosed with C.R.P.S/R.S.D a little over a year ago. It happened after an injury to my right wrist ulna impaction and a arthoscopic surgery. Have had 6 nerve blocks in my neck (not fun) they have offered me lidocaine infusion?? I have said no thank you to that. I am on Novo Norotriptyn right now (think I'd know how to spell it by now! lol) have tried Gabapentin and Lyrica.
They say it doesn't spread but my body tells me otherwise. The pain specialist says the nerves can do that sort of thing about the random stabbing pains I have been having in my left side, and my feet.
When I wake up in the morning I can hardly move, my shoulders, neck and back are very stiff. I can only sit, drive walk, lay down for short amounts of time, otherwise I start hurting and aching more.This condition does make life feel like hell. With all this going on I am dealing with WCB & money problems due to all of this. Stress does not help this condition at all.
But knowing that others with this condition know what is going on, and can understand helps ALOT. Being alone with this condition, feeling like you are crazy, or going crazy, and that Drs act like you are exaggerating is frustrating. So hellooo, hope everyone is having a painfree day!

I had a freak accident in December of 2009 where I broke my right hand and tore my posterior labrum cuff in my right shoulder (with 2 cysts that sit very close to the suprascapular nerve). The tingling, zapping, crushing, intense nerve pain started about a month later. It started in my shoulder and worked its way to my elbow then eventually to my right hand. My PCP was baffled, so she referred me out to neuro. The 1st neuro was a joke. He dx'd me with spinal stenosis and put me on gabapentin & did an EMG/NC study. He ordered a bunch of MRI's that showed three protruding discs in my C-4/5/6, and a herniation in my T-6/7. When I told him my pain started in my shoulder he blew me off. So, then my PCP referred me to Ortho. From ortho I had the shoulder MRI done and it confirmed my suspicion of the cuff tear. I was then referred to a new Othro surgeon because my 1st one retired. That Ortho was awesome and said that with the nerve pain, something else was going on. They did NOT recommend surgery on the cuff tear due to the chance of it tearing and fraying even more. Looking back I am glad, because I read all the stories here about RSD caused from surgery. Though, my shoulder causes immense pain. My right hand has an atrophy. It often feels ice cold, or burning hot, turns a dark shade of purple, gets edema, and loses total feeling.

Once the nerve pain made it to my hand, the nerve pain in my shoulder radiated to my neck and down my spine. My shoulder pops in and out of socket a lot. I can't type too much or write, or use my hand too much because of the numbness. The pain is ridiculous. There are days I can't even get out of bed. I am have damage to the Trigeminal nerve and it affects my lower and upper teeth. I am extremely sensitive to all weather changes, hot & cold, breezes, ect. My teeth are always so hypersensitive that I lost 80 lbs in 9 months (in 2010). From Ortho I was then referred to a wonderful, educated, Christian, caring pain mgt dr. He diagnosed me within 30 mins of his exam. He gave me a lot of info on it and started me on new meds and recommended PT. The PT helped a lot and I was put on Lyrica and the new Tramadol ER 300mg. They both worked great, but were too expensive, so I had to go back on gabapentin (which barely takes the edge off). I started a 6week long series of stellate and cervical nerve blocks that worked wonderfully. I can go about 4 months between blocks until I need them again. Last week I had another stellate and 3 in my c-spine. My dr is very compassionate and puts me under with light general sedation and fentanyl. I hardley feel a thing. We had to change my meds again because winter is the hardest time of year. I freeze like snow! My body cannot regulate it's internal temp correctly, so I am either freezing cold, or burning hot. I am not bothered much by clothing, except really heavy fleece or jackets that put weight on my shoulder. I am now taking 3,300 mg of gabapentin, 3 aleve a day, 150mg regular Tramadol, 60 mg of cymbalta (which I get for free from my dr), and 3 mg a day of xanax xr, and trazadone for sleep. I'll be going back next week for more blocks. It takes a few weeks of them to get to where I can function half normally without feeling like I am dying. My teeth are sensitive again, so I am not eating and losing more weight.

My husband walked out on my and our three daughters after 12 yrs of marriage (he cheated for 10 yrs and our marriage was ruined). I have no job and have been out of work for over a yr. My unemployment ended in July. We have started divorce proceedings, so the added stress of the divorce, the wintery weather, and trying to cope with my daughters has magnified the pain x1000000!!!!! I cannot type very long before I lose all feeling in my fingers and hand. My shoulder constantly hurts. I had to quit PT because my husband cut us off financially and our first hearing for the child and spousal support order was cancelled, so my dr is seeing me just for insurance and not charging me anything for copays or the injections! He is such a wonderful dr!!!!! I got really lucky with him! He is very familar with CRPS/RSD and treatments. He is always willing to play with my meds to find the most effective route of treatment.

Living with RSD is like living with a monster. It hurts so bad, drives me insane at times, and it's so not fair! None of us should be suffering like this! I hate it and I feel that other people do not understand what it is, why I am constantly in pain, or why I can no longer do activities I was able to do before. Right now because its so cold my neck and back are aching so much and I just want to roll into a ball and cry!!!!!! :-( Luckily, I found this group and enjoyed reading all the stories and the support. I though I would never find a support group. My tens unit used to help, but now it just puts my nerves on FIRE! I use my heating pad a lot, sometimes dry, sometimes moist. I am now a left side sleeper, with a body pillow, a memory foam beck pillow under my head, and an extra pillow to tuck under my arm so my shoulder doesn't "hang" down. That hurts! Now that I know that surgery can cause RSD to spread like a wildfire, I don't think I will opt for any kind of surgery anytime soon on my discs or the cuff tear. I do great with PT and am looking for a job (i'm a social worker, btw) so I can afford to pay my copays for PT.

Oh, I also get bad migraines that last for days and my face and head hurt so much. I suspect I have a slipped disc in my lumbar, but need an MRI to confirm it. If I do, i'll try the lumbar nerve blocks. Ok, well the hand is turning lavendar and going numb, and my scalp is tingling (the weirdest feeling ever), and it feels like someone just took an icepick to my teeth and crushed them, so I am off to bed now! Already took my meds. Sleep is the only break I get from the pain! It's to "meet" you all! I wish you all a less pain day tomorrow! Have a great evening everyone!

C

Hi C,
Welcome to the family.
After reading your story my heart goes out to you. I'm sorry your hubby is such an *******.
Your doc sounds great so I'm glad for that. Fighting this monster sure sucks.
I just wanted to let you know someone read your story.
I'll be here like so many of us to listen and maybe help in some way.
Later...

Thank you for the welcome. And yes, my soon to be ex (not soon enough, lol) is a total jerk! It's icy cold today and freezing rain, so I stayed inside all day, except when I had to pick my kids up from school! I love my isotoner gloves, my scarf, and lots of layers with my ugg boots! They keep me warm! I haven't been able to eat, though...my tummy is used to not being fed enough, but I get headaches from not eating. As soon as I can figure out how to post a pic, i'll post some of my lovely discolored hand!

Thanks for the hugs, right back at ya!

Hi all, I've joined this forum because I am both a patient with RSD and neuralgia, as well as a professional who sees children who often have neurological issues (not RSD). Actually, the professional interest was what brought me to NeuroTalk initially, but I was delighted to see you also had support for me...

I have had RSD for about five years now. It started with nerve damage down my right leg due to a spinal issue (trapped nerve in my spine had to be stripped some during surgery when the surgeons tried to removed the bits and pieces of a mangled disc, and the nerve swelled etc--I wasn't moving for some weeks at that time and surgery was the only option left). I think they docs knew I'd have some nerve damage, but the hope was that I'd get more movement and at least be able to do a little better. Well, the surgery was a success on that end--I needed a lot of rehab, about a year, I think, going from barely weight bearing to a walker to crutches to one crutch to a cane (still using a cane some of the time), but I am walking again, and I can sit, and I can put on my own clothing (always nice to be able to pull on one's own underwear...after heathaides, friends, family, and pretty much just about anyone had to do that for me for a time...goodbye modesty...).
I have nerve damage going all down my right leg, with loss of sensation, loss of strenth, reduced range of movement (the nerve is trapped in the scar tissue from the surgery but they cannot go in to release it out of fear of making more scar tissue and because I had a reaction to the anesthesia which makes additional surgeries a problem unless they are for life-saving reasons only), etc. I also have neuralgia in that leg and less neuralgia in the 'good' leg (from pressure of the spine on other nerves where the other discs in my lumbar spine are messed up, but at least allowing me some functioning--and anyway, another surgery isn't an option now due to the anesthesia issue). I've developed RSD in my right foot pretty much after the surgery, but it took a while to realize what it was becasue of all the nerve swelling and other stuff.
I've been fortunate that my RSD isn't spreading much--it is pretty much relegated to my legs, worst at my right foot and affects both calves. It is not too bad on the bottom of the foot, thank goodness, so I can put weight on my leg, but it is very bad on the top of the foot and the ankle area. It got somewhat worse after I sprained my right ankle (the nerve gets pulled when I walk and then my leg falls asleep--how it can both hurt and fall asleep I am still wondering, but it is true, it does happen--and then I step on it funny) and tore ligaments in it which cannot really heal well and haven't fully healed a year and a half later.
I have a hard time tolerating ANYTHING touching my foot, but life being what it is, I have to (I'm sure you know the drill....). I found some socks (100% cotton, thick, no seams, cushy, extra softener in washing) that I can tolerate with the least pain, and shoes that open wide in the front and close with velcro but securely enough that they don't rub-around as I walk. I don't look like anything's wrong (sans cane, when I need it). I'm sure you know the drill of that, too.

I'm taking some medications to help with the results of the anesthesia affecting my autonomic nervous system (makes me lose conciousness without warning, basically, and affected my heart--something they couldn't have known beforehan, it wasn't really a malpractice or anything), and that condition also affects my choices as far as RSD treatment goes: I cannot get any of the injections or nerve blocks because they can aggravate the condition I have and throw it off balance again. It is not only that losing conciousness in the middle of the street is a little risky and that I have been to more ERs that one usually would see in a lifetime, but also every time I fall like that I mess up my already messed up spine more...and risk more RSD...so it is important to keep the relative status quo (read: me staying concious) that my cardiologist labored to achieve.
I took Mobic for about 3 years, but then got a recurrent gastric ulcer and had to stop that.
I was also on Neurontin for about 4 years but we recently tried to taper it down and realized it was no longer doing anything much (other than controlling some of the more annoying--vs. painful--neuralgia symptoms) so it wasn't worth it to keep taking it.
I'm taking Tramadol (helps a bit with the calf and back and hip pain)
And Morphine (does nothing for the RSD but helps with the calf-back-hip pain and therefore reduces my overall pain a bit to make it overall more manageable).

I don't know anything that actually helps the RSD directly, other than continuing to use my leg as much as I can, not letting myself develop too much avoidance around it (you know--not to keep it away from the water in the tub or from the sheets at night or socks and shoes etc or even the sand on the beach--though I will not do THAT again!!!). And learning to live with the pain and relegate it to some corner in my being so I can go on with my life the best I can.

It always helps to get support and hear from other people who have RSD, because it is a rather lonely disease, in the sense that one might not LOOK like one is in pain or anything is wrong, and therefore it is hard for people to relate to the fact that I am in constant pain (not that I need them to relate to it, but it does help if they understand it...).

Thats it. I probably wrote more than any of you ever wanted to know...
Looking forward to chatting with yas,
Annie