First a little background.... I have had CRPS type 2 in my left ankle since october 2012. It is very severe. Since thursday January 31 my entire left leg up into my lower back has been having CRPS symptoms and they are very severe. They started after getting a lumbar sympathetic injection. I am having a hard time walking and have had to start using crutches to get around and a cane when I am home. The pain is just unbearable! I can hardly stand to have even clothing touch my leg. I am having burning, extreme sensitivity, little color changing, temp changing, pins and needles sensations, spasms,kinda like jolts of holy sh%& pain up my leg, weight bearing is impossible without flaring the pain up more, and constant extreme pain. The doctor wants to get a nerve conduction study test done, but is going to wait because he doesn't want to make me more uncomfortable than I am. He is hoping this is just a flare up and not CRPS spreading. I am just curious about two things... if anyone has had a nerve study done on an infected area? and your opinions on if this sounds like a flare up or spreading? Thank you for your opinions!
Angelina

Hi Angelina, My understanding is that your crps was 'only' in your ankle/foot right
'until' you had the lumbar s. injection? I've had flares and spread. Spread from one side of upper body to other side of upper body. spread from upper body to hand. spread from one hand to the other hand. spread from upper body to lower body-legs/feet. And I've had flares. The flares I have had were a worsening of the same body part Not to additional body parts. The swelling would increase and pain increased- and then calm down.
I call the movement from one body part to the opposite side or from upper body to lower body a 'spread' That's just my opinion. I don't want to unnecessarily worry or scare you. but I don't know what else to say. From your description, I'm sure that is why your dr. wants to do more testing. I do know from being on this site since 2007 that many have had 'spread' from procedures involving injections and needles. And many talk about their flares.
My CRPS started in 1996. I was diagnosed in 2002 by an ortho. doc. on the west coast. Then when I came 'home' to AZ I saw a neurologist. I know he did nerve conduction tests on me and confirmed the crps and started me on neurotin and pt with a ortho hand doc.
Later when I had full body spread another neuro (my insurance changed) the new neuro diagnosed me with 'generalized' or full body crps.
Like everyone of the dear people here, I've been thru @%&&- frozen shoulders, hand/fingers, toes/ with grueling 200 pt treatments. the touch sensitivity, the curling of fingers (left hand partially permanent) toes curling/ electric shocks, uncontrollable spasms. pain pain pain, headaches, insomnia, depression, anxiety, many losses, but am better now.
There is hope! I don't have the sensitivity, electric shocks or spasms anymore.
anxiety, depression, headaches, yes. burning up yes. especially in feet and legs. I don't really know why some symptoms have gone away, other than high doses of meds. and lots of continuted work on movement.
When is your next appointment and tests? I know you are worried. Was your diagnosis soon after your 'injury' or event leading to crps? That is so in your favor for a 'better' outcome of remission. Many of us didn't get an early diagnosis. Many of us was years later. That's not good.
What a blessing to you to have found this site 'early on' I'm big on getting as much education on this as possible. Being very active in your own health care.
Please let us know how you are doing-we care! loretta

Yes it was only in my ankle/foot until the injection, that is when in my opinion it spread up my leg into my hip and my lower back. I was confused when he said he was hoping it was just a flare up because that didn't make sense to me since it was in a different body part. Which is why I wanted to ask this question.
I had torn a tendon in my left ankle and had surgery to put in a graft and two screws to hold it in place. The screws after a couple weeks started backing out and hitting bone and nerves. So in Aug. we did another surgery to remove the screws. After this surgery everything just started going down hill. First my foot stated going numb, then the pain hit and OMG did it hit. I didn't imagine that a person could be in so much pain! And of course the color changing, ice cold to touch, burning, well you know the symptoms I am sure. I was lucky enough to have had a surgern who knew about RSD so he sent me to a pain specialist in Oct. who is very familiar and diagnosed me with CRPS type 2 because of the nerve damage. The think I also have a couple impinged nerves in my ankle. So i started injections right away and intense PT right away, and I started getting better. Then a week ago I got the same injection but for some reason everything just went to hell. I don't understand why??!!! It is so frustrating.

I am curious how bad the nerve study hurts because I am thinking I would rather just get it over with and do it now rather than wait. I am not a good waiter! LOL But can it make crps spread again? and I am guesing it has to be with needles and done on the injured leg right?
Angelina

Hi Angelina, I'm so sorry you are going thru this nightmare. It's been over 10 years since I had the studies done by my first neurologist. I really don't remember them. I do remember not being able to tolerate accupunture at all. Only went the one time. I do know that many have had spread from needles and injections. Even now when I get a blood draw, I take precaution of asking for the senior person on staff (most experienced) Also ask for 'butterfly needle' it is smaller and less invasive than regular needle. Next time will ask difference of pediatric needle and butterfly needle. Even at dentist, they give me antibiotics before any procedure and even cleaning. Also get 'laughing gas' before procedure to relax me. In my opinion, we are more prone to 'problems' when we are overly anxious, stressed etc. Have you asked the Dr. or pain specialist their opinion of tests at this time of extreme pain? It sounds like you may want to ask more questions about the test.
Did you read the post on vitamin c and it's role in preventing spreading? If not, I'll find it and post the site.
You mentioned sensitivity to touch, my pt people had me take several plastic bowls and put different items in them and run my hand thru them. Like cotton balls, sugar, rice, beans, coffee grounds. You could even do different fabric textures. You may want to ask them for any suggestions on de-sensitizing your foot/ankle and leg. I did that 7 days a week besides my 3 days a week at pt.
Maybe someone will post that has more recent experience with the nerve studies. Sorry I couldn't be more help with that question.
Are you keeping a daily journal of what you are going thru, so you can relay that to your Dr. It's so easy when we get into an appointment for forget important symptoms. They need to know everything that is going on with you and how much worse you have gotten. Who is the main one in charge? your pain specialist or neurologist? Take care- loretta

I am not seeing a neurologist, in fact I'm not sure I know what that is. Right now no one is in charge which is frustrating. When something goes wrong like when my leg started getting symptoms, I didn't know who to call. I think I am going to go to my family doctor and talk to him. Maybe he can refer me to a neurologist. The pain specialist doesn't want to take point for some reason. Right now I guess the main person is my podiatrist. And yes I know about vitamin C, I take 1500 mg. I have not been keeping a daily journal, I don't really want to remember being like this, but I guess it is a good idea. Plus I don't want to put it down in words that I am getting worse..lol I know... it is stupid. LOL
I do some desensitizing to my ankle (rub different textures on it) but haven't started on my leg. Just my hands. It is just too painful and I can't take it. But i still try.
Angelina

Hi Angelina, You sound very overwhelmed with what is going on with you. And that is completely understandable.
First, you Need to have a Dr. overseeing your CRPS. An experienced one. They will oversee your PT-are you even in regular physical therapy with an experienced person working with you on a weekly basis? Have you been given meds to deal with your CRPS? Not just pain meds, but most of us take neurotin or lyrica, anti-depressants, some with sleep issues take meds for that. anxiety is part of this and some take those. I used to take all of the above. The other drugs help with the symptoms-they are not pain meds, but help with the other symptoms. Does that make sense? When I got this, I couldn't understand why I was 'anxious' I had never before had any issues with anxiety. But CRPS is connected.
A neurologist is a Dr. specializing in disorders of the nervous system.
CRPS IS a disorder of the nervous system. It is a disregulation of the 'autonomic nervous system'. Our 'sympathetic nervous system' and 'para sympathetic nervous system' do not work properly. Neither does the 'vegas nerve'. In time, if you look up these words in Wikipedia-it will make more sense to you. Take it slow, but I would encourage you to get an understanding what is happening to you.
These systems regulate our body temperature, thus explaining why we 'burn up' and get 'freezing cold' These systems control our blood pressure, explaining why we can get 'high blood pressue' or low blood pressure and pass out (syncope)
why our heart can beat too fast or too slow. I'm on blood pressure meds and meds to control heart rate.
It does make so much sense why you are not wanting to 'face' this or put it down on paper. I so understand that. It is so overwhelming. But this is the window of time for you to make the right choice for your recovery and hope for remission.
I am a firm believer in physical therapy-with a professional and 'at home' That is the only way that I kept my mobility. If it wasn't for pt, I would probably be in a wheel chair and not be typing this letter. I've had two frozen shoulders, with very little range of motion. But I had lots of pt and regained use. Frozen fingers and hand, with NO MOVEMENT- I didn't get full range of motion as had delay of treatment. ( I was 5 years getting correct diagnosis of crps) So my left hand is like a claw, with partial movement. My feet and toes have full movement. This would not have happened, had it not been for going thru the pt -probably 200 treatments as well as 200 hrs of massage therapy. It was pure hell-torture really. I took pain meds before going. lots of tears- I didn't know I had crps with the shoulder pt.
There are so many friends on this site that will say the same thing. You have the wonderful advantage of being on this forum early in your crps. They will CHEER YOU ON! I promise. When I saw my 2nd neurologist and was diagnosed with full body- he suggested seeing a professional for 'talk therapy' and I did that. It did help me a lot. This disorder is a devasting diagnosis. Not one without HOPE, but there is a reason it is listed at a very high mark on the McGill Pain Index Out of 50 pain scale, type 2 is listed at 42. McGill is a university in Canada.
It's not easy to understand all that happens to us, especially when we get spread and it progresses. It is very difficult for those who have no knowledge of it, to really understand what we go thru. Don't let that hurt your important relationships. It's really reading on this forum, that I got an education of this disorder. I've had 5 crps Drs. (3 neurologists and 2 hand orthos) and they never broke it down like the friends on this site. There are some really crps educated people on here.
Let us know how you are doing. I don't understand why the pain specialist doesn't want to be involved??? A podiatrist doesn't sound like one that should 'oversee' your care, especially since you got crps after his operating on you. They usually like to 'distance' themselves. I am not saying he is responsible for your condition- mine happend following surgery also. take care, loretta

It sounds like you already have peripheral neurological issues. So I would want to know what positive changes could possibly occur by performing invasive studies like EMG/NCV? When I had mine done, my shoulder and arm were almost completely numb due to the nerve damage so I never felt the needles giong in. If you are hypersensitive, I can't imagine it feeling very good! As far as spread...maybe; I don't know. You should really talk to a PM doc who is very well versed in CRPS.

I guess my point is that you should not embark upon anything invasively new unless such test will likely dramatically have value towards changing your situation for the better. Should your doc only want the studies done for academic considerations and will not change the course of care, then why risk it? If CRPS is truly your diagnosis, it is not likely to get a whole lot better, but it can surely get eons worse under someones care who is not knowlegable!