Hello all. My name is Chris. I had bruised my foot in July of 2014. Thought it was broken, etc. It now is to a point where cold hurts my whole leg, I get headaches (maybe migraines) 2 to 4 times a week. I walk with a cane, since that incident in July. Been to 13 doctors and they finally diagnosed red. I've had these headaches off and on for aabout 5 or 6 years, just more severe now.

I had previously torn all the ligaments in my right ankle 2 times in the past. The most recent being 5 years ago.

Everything hurts my foot, and my ankle is getting worse to try to keep walking with my cane. My muscles twitch all over, even in my face. I see a rheumatologist for medicines, and am getting more tests from Neuro April 27th to check for ms, sjoegrons, etc.

Any comments/suggestions?
Thanks!

Have they rechecked with MRI or xray to make sure nothing is being pinched, from the previous injuries ? I'm assuming they did some spine MRIs due to the headaches, twitches, etc?

Long ago we did have one RSDer that after awhile went to a chiropractor and he was able to find & release the pitched nerve , I think hers was foot or ankle too.
Might be worth a try, just in case, unfortunately many MDs don’t often consider chiropractic options..

Or possibly acupuncture?

I am going to get New mri on back as well as brain scan on April 27th, and New nerve conduction study with skin biopsy as well. My mom was recently diagnosed with fibromyalgia so he wants to make sure I don't have something on top of rsd. Acupuncture is my next thing to try. I also have been diagnosed with hypersomnia (which was before my foot injury), so I take medicines to keep awake during day as well as cymbalta, muscle relaxer 3 times a day and anti seizure medicine to knock me out at night. I don't get much sleep because of the pain.

Welcome Kermit,

I'm with Jo*Mar. Always good to have a thorough workup. At one point early in my journey I had nerve compression from swelling and that alone caused all kinds of bizarre twitching that went away when the swelling resolved. CRPS is a diagnosis of exclusion so they really need to be certain there is nothing to treat that is contributing.

I am so sorry you had to come and find us but you will find good support and community here. Come see us when you have questions, need to vent or to share good and bad news.

Sending Healing Love,
Littlepaw

My muscle twitching is getting worse, both legs, both arms, upper back. Is this happening to anyone else as well or could this be something else on top of crps? They ruled out everything orthopedic and mri on foot, so that's when they decided it was crps. But I'm finally going to neurologist now, after 5 months of seeing 13 different Dr. Its just scary the twitching is getting worse and I'm on muscle relaxer, etc.

Hello, welcome....I was on muscle relaxers for a while...didn't stop my crps from spreading...but it did help me sleep better....hope your neuro can help you...keep us posted....

Hi Kermit,

My own experience on the twitching was that it started with a nerve compression and area of buzzing that was initially about the size of a quarter, the buzzing then spread up the leg. As it increased I started having twitching in muscles of the nerve's path where the buzzing started. Then as that increased I started having it in my arm on the same side. Eventually, as my nerve calmed down and the swelling went down it resolved , but it took several weeks.

To this day my neuro thinks this was some sort of red herring and completely unrelated. I only know what I experienced was very real and it felt at the time like my nervous system was totally overloaded. I do know from watching videos of Ian Carroll MD at Stanford that pain signals have the ability to jump across the spine and up or down a spinal level if pain is intense enough. They have shown this with functional MRI. I don't know if maybe dysfunctional motor signals might spread in the same way.

Any chance some of this is med related? Always worth a look at side effects and interactions. Sometimes even doctors miss these. Often a pharmacist will know best. Perhaps an increase of the anti-seizure med to dampen signals? There are certainly some things to try.

I hope you find relief soon,
Littlepaw

Okay I will check in to that. I've bad nerve tests done from my lower back to the end of my foot, and it was negative. Bone scan was abnormal, so that's what lead the 13 doctors to believe it is crps. My current Neuro kind of doubts the crps bc I didn't seriously injure my foot, although I have seriously injured my ankle two times. I'm scared it might be bone cancer or something like that.

My mom was recently diagnose with fibromyalgia and small fiber neuropathy. I'm having a skin biopsy done same dday as both my mri and re nerve test. Both of my feet get cold and turn purple when I'm sitting in a chair position. When I'm lying down, the color comes back, but my foot burns because there is pressure on my ankle. Its slowly moving up my right leg and it feels deep in the bone :/ any thoughts?

My questions - Have both feet been cold and purple for a while when you put them down or is that new since your injury? Do both feet do it to the same degree? Have you had any vascular workup to check veins and arteries?

It seems IMHO that people can have poor circulation or other neurovascular challenges that may not be originally caused by CRPS but that CRPS makes worse. I have Raynaud's and had it a long time before I ever even heard of CRPS. Both my feet turn colors but it is now much, much worse in the injured foot whereas before both feet did everything the same and recovered the same from cold, heat, etc. Some of my initial symptoms were vascular, temperature and color change related to position that were NOT symmetrical. The severity difference foot to foot is what pointed to a nerve issue instead of a systemic one.

Littlepaw

I'm guessing the neurologist will run those tests after I get some of these out the way. The left foot just started the color change and temp change about a month ago. Haven't had a bone scAn on the left foot yet but the right one was abnormal. The cymbalta seems to help a pretty good bit, but I still cannot walk without the cane. I have to move slow. I'm going to try to start going to gym to swim in the indoor pool, see if that helps keep my leg from deterioration any further.

The neurologist is not one hundred percent sure it's crps. So I guess I'll look forward to another whole year of testing. Hopefully with some answers this time.

My grandfather had to get a vein reconstructed in his right leg before he passed away because of the blood flow. I may have inherited that and it just started showing because my injury. I'm only 30 years old, and everyone at work is calling old me man :/ if they only knew the pain I was in maybe they wouldn't say that.

I'm hoping I get to keep working and not have to go on ddisability or anything like that.