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

I am in pt with an experience person who I see three times a week.
I have only been given Lyrica. I take 150 mg 3 times a day. and pain meds. I had a sleeping problem before this because I have had chronic pain in my right hip for five years before being dx with CRPS type 2. I finally just talked my podiatrist into giving me some muscle relaxers, which help tremendously!, but he will only give me enough for one a day for a week. Then no more since it has spread to above the knee and he doesn't specialize in that. I get the feeling he no longer wants to see me. Not because he doesn't care but because he doesn't know what is going on.
I have been having a lot of anxiety like symptoms, alot of times it feels like my heart is going to jump out of my chest and I am going to stop breathing or pass out. I can tell that my heart beat/blood pressure is doing weird things.
I made an appointment with my primary family doctor to see if he can help me. Maybe to go see a neurologist?
I just feel so lost most of the time. like I am running around in circles with no idea where I am going. There is so much info and sometimes not enough.
I feel like I am lucky to have found out so soon but I feel like I am not doing enough! Arggggg....lol
Angelina

Hi Angelina, Dubious has some good thoughts. Do you have someone who is helping you in this-a family member or good friend. Sometime, it's good to take that person with you on appointments.
It's good you are in pt with experienced person. Sounds like you need a doc taking the lead in your care -experienced in crps. Before making an appointment, make sure they are experienced- ask about their experience and how many patients they have treated for crps -ask if they are board certified-
The autonomic nervous system that goes 'awry' with crps is behind many things. It is the ' fight or flight' response. View it like the acceleration and brakes of a car. The acceleration is the sympathetic nervous system that gets into overdrive and the para sympathetic nervous is the brakes that slows down the car. When they are working properly everything is fine. They do their jobs automatically and keep us balanced. But with crps, they don't work properly, We are in 'overdrive' hence the 'burning' 'fast heart rate' anxiety, OR the para sympathetic nervous system or 'brakes' don't work properly and we can have low heart rate, cold limbs, syncope or 'passing out'
The two systems work in harmony keeping us balanced when they are working properly, but with crps that is NOT the case. If you look at the chart on the autonomic nervous system on wikipedia-it shows what the two systems are involved with.
That is why there are many approaches to the treatment of this disorder. like pt, medication, biofeedback to help us regulate our body responses. relaxation techniques- HBOT that promotes oxygen to the vessels of the body. mirror imagary - and others discussed on this forum. and the more invasive treatments to try and interrupt the 'overdrive' of the nervous system.
As has been mentioned, the invasive treatments have been known to 'spread the crps' but there are others that have been helped by the same treatment. That is the scary part= deciding what to do. Because, I was 5 years in diagnosis, that decision making was not really an issue with me.
I personally feel there is a role of other medications besides opiods. That is why many drs. use anti-depressants, anti=seizures meds like lyrica- anti-anxiety meds- they 'calm down' our nervous system. Like the muscle relaxers are helping you. Opiods have their place to keep our pain levels down which is important, just be careful with them. But the other types of meds also keep our pain levels down. Does that make sense? Just my opinion and the 'approach' of most drs familiar with this.
It is 'natural' to protect our limbs being affected. But very important to keep it moving while not 'overdoing'
It sounds like you are aware of the need for an experienced crps doc to give you direction. The process of finding that 'right' doctor can be challenging, especially if you live in a smaller town.
Have you gone to RSDSA.org? That is a wonderful site with lists of support groups that might be near you. It is a well respected national organization. The had a two day annual convention near me that I attended. Many Drs. spoke, as well as the leader Jim Broatch that I met. That is how I found the local support group that meets once a month at a well known neurlogical hospital.
Hope this helps-Having you been reading maybe old posts here-there are some really experienced knowledgable friends that have posted well documented medical information like PUB MED etc. that are very informative.
I am not that computer savvy when it comes to searches-
How is your leg doing? loretta
P.S. You can buy a blood pressure kit at costco for about $40 that also does your heart rate. I keep track of mine, as I swing between high and low and have syncope.

Angelina, I just remembered- the doctor that diagnosed me ordered a tens unit for me along with starting me in pt the next day. I do feel that played a part in my recovery and the insurance paid for it as well as replacement leads. Tens years later, I no longer need it, but it did help me when I was so sensitive.
Also, I feel epsom salt baths have been helpful in reducing swelling. I still use that- can buy larger quantities at costco. loretta

Last time I checked, TENS units were avalable for $50. And that includes the first set of leads and pads.

http://www.scriphessco.com/shop-by-d...py/tens-units/

I do not really have that much family support. They mostly think I am "strong enough to handle it on my own" is what I hear the most or that I need to learn to do it all by myself. That I shouldn't rely on others. It is kinda frustrating. I try to get them to understand but I don't think I will ever get them to "get it". My dad is great but he works out of town and he is mostly good with just words and around the house. He doesn't want to go to appointments with me. He will call and check on me everyday, and always tell me that I can do this. He reminds me that he loves me and is here for me. He has come home early a couple of times to help me out. I don't have many friends, being in chronic pain will do that. I have one who is great but she is busy and can't be there all the time. But she is great.
I am looking for a neurologist but I don't know if there are any that are experienced in CRPS or not. I live in a small town in Idaho so finding one could be difficult. I do live near Spokane, WA but I don't know if I can afford the gas to go there all the time. I see one for my migraines so I will ask her. I have an appointment with my family doctor on monday so I will talk to him about it. I think you are right about finding a doctor that will oversee everything. Having one doctor that I can go to, handle my meds. I think that will remove some stress in my life and some chaos. Everything seems so scattered right now that it is crazy to try to follow.
The weekends my pain goes down, but that is because I get to stay in bed and stay off of it and "protect" it. I only do my movement PT in bed. And I don't have to wear pants. LOL So lately my pain has been mostly at a 7 with an occasional jump to a 9, mostly when I have to be in a car or when I try to clean the house. I still get spasms when I forget my muscle relaxers and sometimes even when I take them but they are not as intense. I really think my vitamins are helping because I am seeing a difference in the intensity in my pain. Atleast I am hoping.
Angelina

Hi Angelina, Sounds like you have a good 'plan' Hopefully your family doctor or migraine doc will have a good referral for you. Don't be hesitate to ask ahead of appointment if they have knowledge and experience of crps.
Many here can relate to 'going it alone' to the doctor. It always helps me to write down my questions and general well being. That way the doctor gets the 'general' accurate picture. (I tend to gloss over how really bad things are)
Someone also mentioned doing housework in shorter intervals- rest periods. I thought that was great idea. Moving regular and doing the pt and de-sensititizing is the main thing. I'm sorry your pain levels are so high. That is really tough.
How is your little girl? I'm sure she is a huge comforter for you. It is really diffiult for friends and family to understand crps and our struggle with it's various facets. It's ups and downs is confusing to us -let alone others.
Hang in there and let us know what happens when you talk to doctors and find a neuro doc. Hope that goes well. 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!