Hi ellery
I'm sorry you have had such an awful time with this.

For what it's worth your story and symptoms sound like classic CRPS, and in my not very humble opinion, your doctors have been doing you a huge disservice so far.

It is essential that you see a doctor who knows CRPS and can give you a proper diagnosis. Whatever is wrong, you need to get some treatment quickly. I would research some docs in your area and see someone ASAP. The lack of concrete positive test results is pretty normal with CRPS - the diagnosis is based on symptoms seen and reported rather than on tests. There are a few, like a thermographic test that looks at temp differences on your skin, but most docs can diagnose CRPS without that.

With a long-term problem like yours, you have to trust your gut instinct with the doctors you see. Any doc who says pain is 'in your head' is not a doc you should EVER waste your time with again. Keep searching until you find someone you can have confidence in, who makes you feel comfortable and gives you sound advice without patronising you or talking down to you

My own CRPS started after a knee surgery, and I was lucky to be diagnosed only two months in. It has spread from the initial site into my whole left leg, as well as jumping over to my right foot, and then starting in my left arm...such fun. In each new site, it starts as a burning pain, then over time becomes much more of a cold deep achy pain - that's the part (along with the colour changes and temp stuff of course) that makes me think you could have it.

But I'm not a doctor, and I can only give my opinion based on what you've said. Really push to see a CRPS specialist quickly now, and be prepared for you and your husband to fight to get a result. Treatment is most effective when started within 6 months - obviously you've missed that window IF it is CRPS, but you can still get physio (important that your physio knows how to approach CRPS) and help with your pain.

Until you get a decision on whether or not you have CRPS, you need to approach your health as if it IS. So the following are really important (massive apologies if you know all this already!!

- Don't use ice on any part of your body - elevate for swelling, and use a flannel dampened with cool (not cold) water if you really need something cool on yor skin.

- avoid extremes of temperature, from hot to cold etc. as it can be too much for your skin (which doesn't work as well as it should) to cope with. Listen to your body - if protests loudly at something, then try not to do that if you can avoid it.

- Don't exercise or do anything to the point of worsening your pain. Pace your activities and try to avoid the ups and downs cycle of activity followed by pain and inactivity. Easier said than done! Gentle activity little and often is good.

- get some unperfumed Epsom salts and try using them in baths, and also wrapped in a damp flannel on any burning pain. They really help, and the magnesium is important for your body as well. I find they really help.

Look after yourself and take care, I really hope you find a good doc soon and can get some help. This must be so tough, I really admire your strength through all of this.

Bram.

In your shoes this is what I would do:

First find the very best orthopedic to due a proper and full exam of your feet and lower leg bones; including MRI and EMG/NCV testing for legs and arm. I would also get in to see a physio/rehab person that can work with your ankles to address any scar tissue that could be contributing to the loss of ROM and likely adding additional pressure on surrounding nerves and vessels adding to the swelling and color changes. Before... accepting any CRPS diagnosis.

You want to be sure that any nerve issues are ruled out or addressed before that becomes a permanent issue. CRPS type 2 is caused by major nerve damage (usually damage of a large peripheral nerve) and depending on the extent sometimes it can be corrected. A neurologist (not a neurosurgeon) with a sub specialty in diagnosing and treating neuropathic pain.

Many of your symptoms of pain, swelling, stiffness etc., can be caused by scar tissue, tendon & ligament damage and other things especially in the ankles and after a tibia fracture. A badly sprained ankle without CRPS can take up to a year to heal and unless one is extremely diligent in therapy residual swelling and loss of ROM will continue long after it has healed. Any further trauma will cause the symptoms to reappear.

With your arm and considering the cable company business you own I assume you pull wire and perform quite a bit of overhead work? If this is true have you had your cervical spine worked up completely? Many problems with the arm and hands stem from C3-T1 and could have been exacerbated by the auto accident, electrocution and daily duties of your job. It is also possible that some of your increased pain, loss of ROM especially in your ankles can be worsening because of the lack of insurance and proper initial treatment.. a common latent problem for nursing our own wounds when insurance or personal reasons for not seeking care prevail - it would seem prudent to seek a full workup all things considered before assuming it is CRPS.

Personally I would try to remain as optimistic as possible that some of these symptoms are treatable and not a result of CRPS just YET and hopefully never!

I am an eternal optimist and it sounds like you are too.. don't give in just yet, it sounds there are enough gaps in treatment and concurrent injuries as well as repetitive things that could likely cause ongoing issues besides CRPS.

You mentioned medications - what have you tried?

Flexeril would be a good one for the stiffness
Lidoderm patches for the sensitivity
Vitamin B12 for nerves (many people are low in B12 and this can cause serious problems)
Vitamin D3 for bone and tissue repair

Pool therapy would be very beneficial considering your ankle/leg injuries.

I do hope for you that CRPS is not your diagnosis!!

Take good care & stay positive,
Tessa

I'm with Bram it sure sounds like classic RSD/CRPS but I sure hope not for your sake. Both Bram & Tessa have given good advice. I've had CRPS since Dec. 2012 after surgery for a badly broken wrist. My symptoms are from my finger tips to mid forearm but now to my elbow. I have very little range of motion in my hand and cannot straighten my fingers. I had never heard of it until then and I'm middle aged.
Since then I've done a ton of research and have been lucky to find a Pain Mgt. Dr. who is very knowledgeable about CRPS. This site is a great source of knowledge, advice and SUPPORT!
Again, I can pretty much echo their advice. Frequent GENTLE movement is good but not to cause pain. It's really good if you can find good Physical Therapy.
The only thing I can add is in addition to meds. is 1000 mg. vitamin C - that's supposed to prevent spread and I hurt more if i don't take it.
There's also American RSD Hope at RSDHope.org - they have lots of info. and I think there's a link to articles by Dr. Hooshmand, he's an expert on this subject.
Wishing you relief!

The way it has spread from slight trauma is typical of CRPS and nothing else so I'm virtaully certain you have become a sufferer. As Bram says you need to find a real specialist and let no one else treat you or there is a good chance they will make things worse

Sorry to hear about your pain. I think the others who have replied have researched crps and seen more stories than me, so I don't have much to add. I just wanted to say that my crps is pretty mild. Before I got treatment, my pain level was probably a 6 on my worst days. I never stopped being able to walk (crps is in left foot), and have not limped since the first two or three months.

Just wanted to add this so you know that pain you describe as about a 5 may not be inconsistent with crps.