Is it really crps?
 

Im new here....a year ago i was in a minor car accident, i had a shoulder injury that i sought PT for. Underwent an mri on my shoulder after therapy helped my movement and strength, but pain was still there. mri showed no tears, and PT said hopefully pain will go away. A few months later i went to an ortho specialist who decided to mri my neck, and found i had three buldging disk, but nothing that needed surgery and should not be causing the pain i was having.

I had cortizone shots and a spinal injection which did nothing. I was taking gabentin which i could not tolerate as a full time mom and business owner and it did nothing for the pain. I was then referred to a neurolgist. He did a nerve study which came back normal, however he diagnosied me with crps type ii.
I have been taking clodine and amatryptline (sp). I thought at first it wasworking as i didnt have constant pain, but still daily pain. I continued to take the meds, but the pain had gotten more intense and goes froma burning, stabbing, to icy cold, and it used to be just in my left shoulder and down my arm, but has now in the past few days started to include further up my neck and deep into my left ear.

I do NOT have discolorex skin, nor the skin sensitivity to touch that i have read about. I have started to get very brittle nails that break and peel way up on the nailbed. I am wondering since i dont have all the symptoms, is this really crps?

I run a very stressful business at this time of year, and i dont have time for all this, i really want a better diagnosis....the doctor really didnt give me much hope that i would have any pain free days without the use of heavy medicines or surgical procedures...im still working on trying to prove him wrong ;)

I'm sorry you are having this pain!! My first question would be if you have seen a Neurosurgeon? I know you mentioned a neurologist but a Neurosurgeon is who you would want to consult with for cervical spine issues especially if the bulging discs are putting pressure on your nerves. An ortho would not be as qualified to interpret these results and relying only on MRI reports is not always a good idea either. I had a very successful 2 level cervical laminectomy/foraminotomy after my head on collision and my only regret was that I had put it off due to fear and suffered way to long. I was immediately better and have had no further symptoms or issues since the procedure just over a year ago - this of course was before I ended up with CRPS II after several complex hip operation. Did they say which nerve was the cause of your CRPS II? In order to make that diagnosis they rely on objective findings of a specific nerve(s) injury/damage?

It isn't necessary to have all of the symptoms to be suffering from CRPS. In your shoes I would certainly seek second and 3rd opinions but keep in mind not all doctors are familiar with CRPS so you may get conflicting diagnosis anyways. I think with CRPS II (at least from what my doctors have said) that it is much easier to diagnose because they can identify the nerve injury unlike with CRPS I or RSD. You might also ask why they diagnosed CRPS II that way if you missed anything during your appointment they can further clarify what you missed.. lol.. we often don't always hear everything being said during quick appointments.

Keep up with that attitude of proving him wrong.. no matter what the diagnosis is that kind of mentality will help you in the long run!

Hi and welcome. I'm sorry you're in so much pain. I was diaganosed with CRPS I in my right wrist two and a half years agao. Not everyone gets the same symptoms per my pm dr. I would get second opinions from another neurologist and pm dr. I had the deep aching cold pain for the first few years. The burning pain just started for me about six months ago after rsd spread started to happen. I hope you feel better soon. Take care.

I am not really sure if he is a neuroligist or a neurosurgeon, but he is said to be the best in the area.

Three different doctors have told me that the buldging disks in my neck would not be causing the pain i am having. I do remember that the neurologist said the nerve study was normal, but he thought the crps type ii was caused from the shoulder injury i had, possibly the brackial plexus (sp).

Basically at the last appointment he told me he would try a different medicine if the clodine and amitryptine combine was not working (and its not) and if that was unsucessful he would referr me back to the previous orthopedic group doctors, for pain management. That was the only hope he gave me...pain management.

I would seek more opinions! Follow through with whatever recommendations but also seek out an additional orthopedic surgeon who specializes with brachial plexus injuries and a neurosurgeon who can fully evaluate your cervical spine.. trust me even the very best doctors can make mistakes. At least that is what I would do in your shoes.

PS.,
 

I hope your Auto Accident case isn't closed if it is CRPS!! Err on the side of caution if it isn't closed and get a lawyer if you don't already have one. CRPS is a long painful and financially stressful journey.

You don't have to have all of the symptoms. Also I think we have all found some symptoms come and go sometimes. There also seems to be a lot of other symptoms or things effected by thus wonderful monster that are not listed as symptoms.

Unfortunately I don't think any of us had/have time for this! It just gets dropped on you. For the most part I seek my pain being controlled enough so I am not crying or miserable with pain.

The actual injury that i had has healed. I have full use of my arm/shoulder with hust a little clicking feeling when rotating. Its just the burning, stabbing, swelling, etc, left behind.

The auto accident happened when a car ran the stop sign and hit me in the passanger back panel....case is not closed, but im stuck with all the medical bills until we get it setteled...could be years from now.:mad:

It might benefit you to read about thoracic outlet syndrome (TOS), it can happen after a shoulder/neck/ upper body injury..

The useful stickys on our TOS forum would be a good place to start, you might find more related symptoms to what you are having..
http://neurotalk.psychcentral.com/thread84.html
http://neurotalk.psychcentral.com/thread125577.html
http://neurotalk.psychcentral.com/thread135.html

and the main TOS page -
http://neurotalk.psychcentral.com/forum24.html

Trust me I understand!! My CRPS II was also caused indirectly by a head on collision I was in. I endured 10 surgeries (and recovered remarkably well) until.. the nerve injury on what was to be my last surgery caused the CRPS to take hold. It can be a long time but especially in light of the possible CRPS you do not want to settle until it is properly diagnosed and your Lawyer understand the long term issues both physical and financial due to CRPS.

I second what Jo*Mar suggested about looking into TOS both cervical spine issues and TOS can mimic symptoms of CRPS and or brachial plexus injuries.

Wishing you the best possible outcome!

If i had an actual nerve injury...wouldnt the nerve test be abnormal?

Hi Ozzie :)

You've had some good advice here. I understand your frustration, but pain management courses etc can actually be very useful when dealing with something so long-term and painful as CRPS. If you do have it then it can offer good advice and techniques - I was VERY scornful of pain management until I did it :rolleyes: and over time I've realized that most of the meds and treatments can be be somewhat ineffective compared to a good attitude, regular movement and stretches, pacing effectively and relaxation techniques.

I developed CRPS type II after a knee arthroscopy just under two and a half years ago. It's spread to my whole left side and right foot. The first six months to a year were the worst, when the pain was highest and everything was confusion and misinformation. Then I got a good physio and pain doc, a med that helped a bit, and the pain management programme. Last winter I was on crutches and in a wheelchair out of the house - at the moment (fingers crossed) I'm on my own two feet again and feeling much more positive. The pain hasn't gone, but it's changed and I've learnt to deal with it better. The support and advice on this forum has been an amazing help, just knowing that there are other real people out there dealing with this!

Good luck and keep fighting. Get that lawyer if you possibly can, because money really does make a huge difference when fighting this thing, and if it's been caused by a car accident then you need a good lawyer who can get you as much as possible.

Have a good read around this forum and the threads on the first few pages. There's loads of hints and advice for coping, and lots of things to try. In time you'll find a groups of techniques, exercises, meds etc that work for you and make your days easier.

Keep smiling whenever you can :winky: and keep posting!

Bram :grouphug:

Well it depends on when the NCS was ordered and what the requesting doctor was looking for. What I mean is that if the NCS/EMG was ordered looking for a Brachial plexus injury the testing more likely was looking at the motor nerves or nerves the supply the muscles. Since CRPS is a disease process that originates from peripheral nerves then different testing such as the SNAP (sensory nerve action potential) during what is a complete PNE (peripheral neurophysiological examination) unfortunately unless the doctor requesting these more in depth studies or the diagnosis in question doesn't point to this then they aren't always done. Then to make matters even more confusing the timing of the EMG/NCS also plays a role in whether or not it will show the damage. After nerve injury or damage it the nerve goes through several changes over the course of hours - weeks and even months depending on the type of injury or damage. So even if your nerve was partially severed and the study was done.. say 3 days later the testing most likely will come back normal. If however the same test was performed 3 weeks later those same results would be markedly different.

Sensory nerves are challenging to test through NCS/EMG but, MRI's (certain ones) or even ultrasound can make the nerve injury much more visible. My nerve tumors and entrapment were visualized through both.. I was even given an ultrasound picture of the large nerve tumor (neuroma) to take to my PT so they would know exactly where it was.. lol.. my CRPS II souvenir Ugh :( And the first EMG/NCS was considered a normal study but the one done just 2 weeks later came back as an abnormal study.

You can ask your doctor specifically which nerve was injured/entrapped since in order to make a CRPS type II diagnosis they are required to have a "verifiable" nerve injury. This is not to question your doctor but, it should clear up any confusion which is your right as a patient to ask. If nothing else it might result in further testing or a second opinion to confirm.

The past few days I have felt the burning pain go up from my shoulder, neck and into my ear....and this morning my was on fire, the skin started just peeling off, and now its all red and shiny....what the heck? Im considering calling the doctor for an earlier appointment, last week my fingernails started peeling and ive always had pretty nails.

It could be
 

CRPS is different for everyone. I dont have major swelling and the discoloration is very minor. I get a re and white mottled color and even then its light. Also the temperature change is sporadic. but the pain you described sound exactly like CRPS I am sorry to hear that your going through this. It could be a Peripheral Neuropathy or just nerve pain in lamans terms some neuropathies can mimic CRPS. I would make sure you see a very good neurologist and go from there. But DONT be silent about your level of pain. Make sure they treat it. You have a very hard road ahead of you....either way you have a life altering diagnosis. Good luck! And know we are here for whenever you need a supportive ear. No one can understand the pain we have except people like us.

With these symptoms I would say yes you have CRPS. DO NOT PUT ICE ON IT!!! it can cause awful sores and be very careful with heat! YES get in to see your doctor as soon as possible!!

Any suggestions in my ear that is peeling? Its so gross looking...good thing I have long hair, the skin is flaking off from the inside out, its shiny and extremly painful to even touch.