Hi everyone. So I was just diagnosed with crps in nov 2013. My history is back injuries. I had spinal fusion 2009. A screw was lying on my nerve so 2 mo later I had another surgery to remove the screw. After that I did great. No more leg pain. Back to working full time etc.

then in 2011 while I was 16 weeks pregnant I was rear ended on my way to work. Long story short, that accident led to another spinal fusion in 1/2013. Because I have such good luck when it comes to anything medical, I of course developed an immediate complication. I had a very large hematoma. So, finally 3 months later the hematoma was small enough to show my nerves on MRI. Turned out I had a large bone fragment in my nerve causing all of my issues. So in 4/2013 I went in for a quick removal of a bone. Turned into a 3 hr surgery with removal of multiple bone fragments and scar adhesions.
So now I have chronic nerve damage and pain in my left leg. So in November I went to my pmd for numbness and tingling in my left arm. I also spoke to him about my leg. It was always numb feeling and to touch, I had horrible pains...especially in my foot and ankle, my foot was turning purple, it was swollen...but not terribly...my hand was also swollen... I also had developed a bunch of little red petechiae on my body. So, he diagnosed w crps.

I am a nurse and had never heard of this before. At first, I just kind of ignored it. Then one day I had put a post on Facebook describing my pain and the fact that my son touched my leg and made it fly up. A colleague of mine asked if I had rsd. That started my research. So lately, I have been doing a lot of reading about this disease, however I still have a lot of questions. Hoping maybe this forum can help me.

So, here are some of my questions..... First, most of what I have read describes the pain as burning, mine feels more like a stake is being thrushed into my foot over and over, or deep sharp pains in my calf and thigh. Does the pain vary depending on the severity.

2.. So I think that maybe I have a mild form of it because I do not feel like my pain is at a 10 all of the time. From what I have read it seems like this disease is 24/7 excrutiating pain. But mine comes and goes. I mean I have pain either in leg, back or foot at all times, but not always at that level. I'm wondering if that is because this is new, is the pain going to continue to get worse?
(Btw...so far I have done a nerve block, which made things worse not better...waiting for approval for SCS).

3... My cold foot/ ankle comes and goes also. It seems that all of the symptoms are worse after activity. I am currently not working due to all of this. 3 days a week my son is in daycare, so all I do is rest. Those days are my good days. But days like yesterday when I have my son, who is 2, and I run errands...for 2 hours....then I suffer greatly that night and the next day. But I still am not sure I would call it a 10. I mean the first 2 weeks after my surgery now that was a 10. I screamed every time I had to move.

4..... Do all of the symptoms get worse...because the cold foot is driving me crazy. I wear 2 pair of footies, a hiking sock and a slipper with no help. Sometimes I wrap a heating pad around my leg. That seems to help.
5.... INSOMNIA. Omg I feel like I want to blow my brains out. My pain is always worse at night but still not a 10. I take a Percocet ( sometimes 2 depending on pain) and melatonin, but I still struggle to sleep. But I can sleep just fine during the day...the few days I can. It is weird.
Ok. Lastly, I have become pretty depressed with all that has happened this year, is it beneficial to see a psychologist to help deal with all of this?
I appreciate any help! Thanks so much

Hi,

Everyone is so different with their symptom complex. I can only speak for myself. My onset was secondary to plexus damage (type II) from a SLAP repair on my shoulder gone off the rails. Surgeon was clueless and in denial telling me the 16 ES vicodin per day should work for pain, so I self-referred (I cheated knowing the signs as a health care provider of 20 years) to neurologist at 5 weeks post-op who dx'ed the CRPS and scooted me off to PM. I had similar issues, variable pain during the day...profoundly relentless at night. Sleep was next to impossible and increasingly wearing as time progressed. What helped me was a long process of stellate ganglion blocks (about the only thing that bent the curve) starting at 6 weeks post-op, probably 20 or so over 4 years which allowed PT to happen to regain some post-surgical lost function. Pain meds were almost useless. Gabapentine helped a lot but had to stop early on after several weeks due to adverse effects. For sleep, I found the best thing for me was 1mg Lorazepam at bedtime which I gradually decreased to my present .25 mg. It's not perfect as it wears off by 2 or 3 am but it's all relative as I was getting almost no sleep before. I still take an occasional Norco or two during the day when pain cycles to a more intolerable level and while the symptoms are never gone, they are better than that first year! I did see a psyc a few times at my wife's insistence which actually was okay because he was struggling with Lyme disease and flirting with permanent disability so we had lots to share.

Hi Kristin! Welcome to NeuroTalk, you will find great support and info here. So sorry you are dealing with this. I have had RSD/CRPS for 23 years. It is in my face, hands, feet, shoulder, trunk area, left arm and left leg...it is spreading to a few other areas now. Symptoms can vary from one person to the next. Symptoms tend to change over time also, I know mine have. I do not have as much discoloration as some people do.

Not sure if you have been there yet, but there is great info at rsds.org and rsdhope.org. And there are stickies at the top of this forum.

1-burning pain is the most common symptom, but it doesn't always have to burn. My pain is burning most of the time, but sometimes it is not, it will be sharp, stabbing, electric-shock like too.

2-I don't know what to say about the pain levels. Mine are always pretty high. Not all parts are at a level 10, some are. My lowest level has been a 7, but my hands might be higher. It varies. I always thought when it is new it is really bad.

3-Any activity aggravates my affected areas. I finally had to give up working a little more than a year ago. The temperature in my hands and feet vary, but are mostly hot.

4-Again, everyone is different. Since you are newly diagnosed, symptoms could get worse. Best chance of remission is treatment within the first year. Warm on your RSD/CRPS areas is ok, but never, ever use ice. Ice is the worst thing for RSD/CRPS, so is contrast baths. Ice can cause spread.

5-Insomnia is definitely common in RSD/CRPS sufferers. I struggle with it every single night. My pain is usually worse at night too and laying down is so uncomfortable.

6-YES!! It certainly is helpful to talk to a psychologist or therapist! I have and it is very helpful. Especially if they have experience in helping chronic pain patients. If you are in the process of getting an SCS, have they sent you for a neuropsyc evaluation yet? It is usually part of the insurance approval process. I ended up having to see the one who did my eval a few times.

So, you are in the process of getting approved for an SCS? I would recommend getting a second opinion and exhausting all other treatment options (sorry the block made things worse). And to confirm you have CRPS (if you have any doubt). I had two SCS's implanted in June 2011 (cervical & thoracic). Had a revision on the thoracic one in November 2011. They switched out the percutaneous leads for paddle leads and moved the battery. If you are getting a thoracic/lumbar SCS, talk to your dr about getting paddle leads. They are usually more secure and less likely to migrate...percutaneous leads always seem to move, so if you can avoid a revision, that would be great. I just had both SCS's removed two weeks ago. I had some issues with them increasing pain in my back and the thoracic lead migrated and the battery was twisted and hurting. Neurosurgeon did not want to revise, he recommended removal and I agreed. They were fantastic for a couple of years.

Hopefully others will come along and provide you with more info too.

I wish you the best!
Nanc

Hey there, I've had this horrible beast of a disorder for 10 yrs. The first 5 to 6 yrs I had stabbing, burning pain that never went away. The last 4 yrs its gotten worse. Remember everyone is different on how their CRPS reacts, and feels. My pain has not been below a 7 in these 10 yrs. After the birth of my oldest son (he's 2 1/2 now) I started getting the blowtorch on my bone pain, and like someone had placed a fully loaded big rig on my leg. When I'm in aflare or have oover done it I'm at a 10, on a normal day I'm a 6-8. Start taking Vitamin C every day, and when your having swelling take a hot epsom salt bath. You can also make it into a compress and put it on your arm and shoulders. Use the good old fashion stuff not the scented ones. If they send you to PT do not let them use ice. Ice is bad and a big no no for us. Yes insomnia is an issue with us too. I try to take a nap when both my sons do. Sometimes I can and sometimes not so much. Before getting pregnant a 2nd time I was only getting 3 to 4 hrs on a good night, on a bad 30 to 40 minutes. Also the old adage of " Use it or lose it" is real for us. Try to do some form of exercise when you can. Chasing your LO and playing with him/her will help with rom. I chase my oldest and play with him as much as I can when I'm not in a flare. I wish you the best of luck. I know how hard it is to hurt so much and still care for your little goobers.

Hi Kristin,
Welcome but sorry you have the reason to be here.

I will echo pretty much what everyone else has said, which is good for
me as I'm limited on keyboarding now.

That's part of the mystery of this disease, is that it's so different for most
everyone. There is no specific drug for this so, no cure either. Everything
rx'd for us is "off label". There are some similarities too and learning & sharing
on this forum is most helpful on many levels.
Vitamin C can help & there's no harm.

Some of my experience:
I've had 21 nerve blocks (stellate ganglion) now. The 1st one was a disaster!!
Then I found an excellent P.M. Dr. with 1st hand experience with RSD/CRPS. I've had some success now. Some improvement at first, now they seem to keep the pain at manageable levels.

I did a trial SCS but decided the benefit wasn't worth the risk to get the permanent. PLEASE, PLEASE do your homework on that & there's a subforum
on here just about that. I needed lots of help with personal care just during the trial & that is not convenient to say the least.

If you have RSD/CRPS it will be ongoing, so my advice is to try & stay away from narcotics as much as possible.

Since you're a nurse reading through med. terminology will be easier.

Hi Kristin

I'm sorry you have cause to be here but I'm glad you found us. I have only had CRPS for just over a year now. I'm still trying to figure it out (well, I'm actually trying to ignore it most of the time but that doesn't really work).

I developed it following surgery on my right wrist. I now have CRPS in my entire right arm, wrist and hand.

I think the symptoms vary quite a bit from person to person. My experience is that the symptoms also vary from day to day, hour to hour, minute to minute. I do have the burning symptom. It varies in intensity and moves around the affected limb.

I also have frequent sharp pains and crushing pains. I frequently have the feeling of spike being thrust into my arm repeatedly.

I don't really know how to rate my pain on a scale of 1 to 10. My pain is always severe enough that I am never able to block it out; it is always in my conscious awareness. I have sharp pains that literally take my breath away and buckle my knees. My pain also keeps me from sleeping properly. I struggle to fall asleep and then wake up repeatedly throughout the night.

I find that heat packs and Epsom salt baths help. Try to keep moving. I have regained a lot of mobility through physiotherapy and also using my hand and arm as normally as I can.

Compared to most people here, I'm very much a newbie though. The others will have much better advice for you. They are all lovely and super supportive.

Take care.

Kim

Hey everyone,
Thank you so much for the replies. I guess I will be headed out for some vitamin c. My last 3 days have been horrible. My MIL was in town for 2 weeks so she did all of the cleaning and helped a lot with my son, so I kind of had a break and forgot how much pain I really am in daily. It's soooo hard when u have a 2 year old who only wants you. He won't let my husband do anything for him. I have been taking the baths. They do help a bit but it is short lived for sure. I am glad to hear that the pain varies per person. Which should hVe been a no brainer for me being in the healthcare industry. But when it comes to yourself your brain doesn't work properly.
Does anyone go to support groups for this? My husband doesn't get it. I think he thinks because I am not crying and unable to walk ( which happens at the worst of times) then I must be fine. I try not to complain to him because I don't want to sound like a broken record. I have printed off the letter from rsd hope for families and had him read it. But to be honest he barely looked at it. So I thought maybe a support group would be good for me since I can't really talk to him. I am also in the process of finding a psychologist who deals with chronic pain patients.
So, big question here. I am almost out of my percocets. My neurosurgeon will not prescribe me any more because it has been over a year since my surgery. My PM appt isn't until February 11. I usu only take them at night to get a couple hours of sleep and only during the day for flares ( which sadly I had to take 3 today). So once I run out are there any suggestions at least for getting so e sleep? I have tried ambian, melatonin, and an herbal sleep medication none of those helped without the pain med.
thanks again. It is nice to be able to talk to others who understand.

Hi Kristin!
I have not attended any support group for this. Have been looking for one in my area though. You should search on rsds.org for a group in your area. Having your husband's support and understanding is so important. Maybe the psycologist you will see will have some suggestions to help you and help him get there. I am very lucky that my husband does get it. Have you shown him the McGill Pain Index? I showed this to my husband and he said it really sheds light on the severity of RSD/CRPS. He had me show it to family/friends who didn't get it. Here is a link to it: http://tuum-est.com/MEDICALJUSTICE/McGill.html

Do you have a primary care dr who could give you something until you see your new PM dr? My PCP is the one who actually manages my meds. I was gonna suggest melatonin because so many people swear by it. I cannot take it - gives me a bad headache. My PCP has had me try diazepam (valium), but it doesn't make me sleepy. I have trouble sleeping, so I am not sure what else to recommend.

Hi Kristin and welcome.
I'm sorry you have rsd but you have found a great group of people to help you to deal with this disease. I have had rsd for almost three years and it has changed from day to day. And though everyone is different with what they experience with rsd, I will try to answer your questions from what I have been through with it.
1) I started out with a constant deep aching stabbing cold pain for the first year and a half. The I got occasional hot burning pains mainly in my hands and feet. Those pains come and go. I also get pain when my skin or bones are touched due to the rsd spread and fibromyalgia that I got two years after rsd.
2)My pain level changes everyday. In the beginning it was an eight to a nine. Then after a year it was a six to a seven. Then after two years it was back to an eight to a nine again.
3)When I over do it my pain level rises and I am wiped out for at least two days afterwards and have increased pain. I also get coldness in my rsd hand when I use it too much like when I type. I get burning in my feet when I walk on them too much. It's the total opposite, but there is no rhyme or reason with rsd. I use a heating pad for for situations and that seems to help.
4)The symptoms of mine changes everyday and are at different pain levels everyday. So I just try to take it a day at a time and not focus on yesterday or tomorrow. I just think about what I am dealing with today. Otherwise it gets too overwhelming.
5)RSD can cause insomnia. I rarely sleep because of rsd and the pain it causes so I watch tv or read a book until I can fall asleep.
6)RSD can cause depression, though I had depression before rsd. It has gotten much worse since I got rsd. Seeing a psychiatrist helps me with that. I also see a pm dr and neurologist to help manage pain. I have had eight nerveblocks but they mainly helped with appearance and not so much the pain. Prednisone helped more with pain and getting some of my range of motion back, but my wrist and fingers are locked up still. I had to stop taking it after a few months because of side effects. I take other pain meds now, but am also trying to wean off of them because they are causing me problems with my stomach. My pm dr wanted me to get a SCS, but my neurologist and gp and psychiatrist said not to do it because of chance of infection and increase anxiety so I didn't do it. Surgery can cause rsd spread and I didn't want to take that chance. Others have had it done though and said it helped. If I were you, I would get several opinions at least before you get that done. And accupuncture caused spread too. But some people say that that helped them. Everyone is different so you have to get to know your body and what works for you in dealing with the pain rsd can cause it.
I hope you will be okay and will pray that you and everyone else here goes into remission. Take care.
Sincerely, Renee.

Darlin I understand the 2 yr old only wanting mommy thing. Thats how mine is . My husband is only here on weekends and holidays right now because he is stationed 4 hrs away at another base. We're a military family. I went undiagnosed fodr almost 9 1/2 yrs. I have been on and off narcotics for 10 yrs. I know what you mean about almost being out of the 1 thing that takes the edge off your pain. I just started a new PM dr and we won't prescribe them at the first appt. Also you have to sgn a narcotics agreement. I don't go to support groups because the closest ones are 1 to 2 hrs away. I do have a vet's support group om facebook I am a member of, and this one. They do help. You can vent on here as much as you need to. You can also find useful info about new treatments, and old ones too. I really do understand where you're coming from. My husband doesn't quite understand either. He's been with me since before getting this "oh so wonderful" disorder till now. He has seen me fighting for treatment, a diagnosis, and more VA disability, but he still doesn't quite get it. One thing you can do with your son is have him play on the floor beside the couch, and have snacks ready to hand for him. Mine still takes a nap around noon, and while he's napping and if my 1 month old is willing I take a nap too. I also have my in laws in town so they take my 2 yr old to the park, and wear out some of his energy. This is a hard disorder, but there are ways of making it a bit easier. I also have my son climb up on the couch instead of me picking him up. He is adapting very well to my limitations. He also helps with picking up and cleaning.