Quick intro: Left arm: 2 ulnar nerve surgeries with one ligament reconstruction. Diagnosed in January of this year with the majority of symptoms being from my hand to my elbow. I have had PT, Contrast baths that lasted for 2 weeks, OT, and work conditioning. I am just now starting Neurotin and Baclophin. So far no good lol.
In the last few months I have started having severe headaches that start as a stabbing pain at the left side of the base of my skull. In the last month I have noticed that I can't get comfortable. I am now experiencing deep bone pains in my arm...even my upper arm which is new. My neck and shoulders seem to stay tense and have started burning like my arm does. If I drive or ride anywhere over 10-15 minutes away I am miserable. Seems to make it worse. Sitting or standing for any amount of time or even looking down to read or type is becoming an issue. I prop my laptop at eyelevel to help with that part. I have also noticed that when the pain starts getting pretty bad that I become nauseated even when I don't have a headache. I haven't previously had nausea with the CRPS pain. Since my injury I have dealt with a lot of pain as we all do but I have managed to handle it as well as possible but today, for the first time, I actually broke down. I am not a person who cries over pain but today pushed me to the edge.
Now, I said all of that no to whine but to ask if anyone else has had the issue of the spread, headaches, deep bone pain, and or nausea. If so, what did your doctor(s) recommend? I have had the suggestion of TOS but my Ortho doesn't think that is the issue but wants to let Neuro do all of the treating right now and since this is a workers comp injury you all know how difficult it is to even get appointments much less the treatment approved. Does anyone have any suggestions for things I can do at home that will help? I can't even stand to wear a necklace anymore. Fabrics? Special pillows? Lotions, creams, hocus pocus?? I am open to any and all suggestions here.
Thanks to all of you who are reading this post!! Hope you have more good days than bad

If I were you, I would *push* for a consultation with a TOS expert. Headaches, ulnar nerve pain, and neck/shoulder tension can all be part of TOS.
Dr Karl Illig is in Tampa, Florida - perhaps that's not too far from you.
Best of luck -

I sometimes wonder what it is now. I know that the injury was directly related to my elbow being hyperextended. I think that there is damage in my wrist as well but I do wonder if I may have injured my neck as well. I only remember the severe pain in my elbow at the time of injury. WC is not really interested in looking for alt injury sites so I'm fighting an uphill battle.
Thanks for the info but since I'm in Midwest central Ga it might be a little more mileage than WC would appreciate lol.
Best Wishes

irpuregenius:

Based on your description it certainly sounds like nerve damage from that original elbow trauma is the initiating factor for all of your troubles. Nerve pathways, tissues, and fascia connect all the way from your fingertips to your shoulder complex to your spine, going up the neck to the head and down to the rest of the body from there. Everything in the body is directly connected at the speed of thought.

Your immune system has been fighting hard for a long time, and over that time the body compensates for that stress in a myriad of ways. I experienced increasing nausea, migraines, blurry vision, heart palpitations, body-wide muscle spasms, among countless other elements of pure awesomeness when I had RSD. At a certain point the symptoms begin to build on themselves and we are left searching for diagnoses for all kinds of new stuff that piles up on top of the old stuff, to where it seems like everything is so complicated there is no way out.

I know that just sucks because I've been there.... but you're better and stronger for it. Repressed emotion manifests in the physical body if it is allowed to build up without release. Sometimes sucking it up and "being strong" is the very thing that makes us weak.

Note - I'd probably be viewed as more of a hocus-pocus person myself at this point, since "science" as it is currently understood definitely made the situation worse rather than better in my case.

All the best to you irpuregenius

So sorry to hear you are going through this too. I have similar long-standing issues. I have bilateral TOS and CRPS on the left-hand side. To me your symptoms sound highly suspicious of both being present simultaneously- you sound far too much like I did. Both are considered very rare conditions and it is easy for them to be missed. Initially, I too saw an orthopaedic surgeon who failed to diagnose either condition. I recommend you follow up with your neuro and a TOS specialist if you go to the TOS thread you will find information there.

A couple of suggestions- As well as neurontin and baclofen you may wish to ask about other meds eg Endep and clonidine. Your nausea should improve as pain is better managed. I have 8-10 weeks low dose cortisone and anaesthetic injections and trigger points around the neck/shoulder and paraspinal (however I can tolerate injections without spread of CRPS, for others this may be a concern), regular clinical Pilates, support weight of my arms as much as possible when sitting using a triangle pillow, sleep mostly on recliner with arms supported using a triangle pillow and using a neck collar or if in bed use pressure care Roho cushions etc, use steering knob to drive short distances in car, very aware of neck position and keeping it in neutral especially avoid extension. I find I get dizzy if I don't have at least half an hour rest lying down around the middle of the day. Think it also may have to do with fatiguing posture and perhaps affect/tension on the vertebral artery?/scalenes if you have TOS. Flexion positions help me offload pain eg use beanbag/ recliner. In terms of pillow, when I can tolerate one at all I use sleepezy- 3 zone pillow by therapeutic pillow international (in Australia) -you can adjust how much/what type of filling you have in each of the zones. Otherwise, just a neck collar or both to limit how much stretching damaged nerves I do in my sleep.

Hope you get the right sort of advice/help to manage things quickly,
Booklover

WOW!! Thank all of y'all for the information!! I am definitely doing my best to look into different medical reasons for my symptoms. It takes a while to do so though with workers comp...The doctors ask me to make follow up appts but I'm not allowed to because the adjuster has to make them and since I have an atty I can't speak to the adjuster lol! Now the Appointments have to start with the Dr requesting it, me calling the atty, the atty calling the adjuster, and then the adjuster calling the Dr. WHEW! Seems like a lot of phone calls to make for just one visit Hopefully I can get to a better Dr who doesn't make me jump through all the hoops! But I am going to look into the pillows and adjusting my sleeping positions but I don't think I could handle sleeping in a recliner every night. I do agree with the naps though. I went to do a little local shopping today and it was rough!! By the time I made it home I was done in. My daughter had to unload the car for me I'm lucky to have her!! A little low heat and the muscle relaxer seem to calm it down a little. Hopefully we will move to the blocks soon. It has been a year since it was diagnosed so I don't think they can "reset" the nerve at this point but I would love some time without pain. Even if it's only for a few hours...I will take what ever I can get!!!

Thanks again for all the advice!!

P.S. Booklover: 8-10 injections a week??? I think my workmans Comp adjuster would have a heart attack if any of my doctors even suggested that much LOL!! In the Us, when a person gets hurt at work, the employer has a special insurance company who handles all of your medical treatment, prescriptions, and even your pay while you are injured. Not sure if it's the same there but the adjusters that I have dealt with that work for the ins company are difficult to say the least. You would think it is their own personal money paying for my treatment

Oops sorry just edited my post- I have injections about every 8 to 10 wks. Depending on how bad it is he might put in between about 10 and 15. I'm not covered by comp/ insurance however our medicare system pays for part of it. Also my pain mgt dr is good to me and doesn't charge me as much as he could so the gap is reasonable. Not like some of my other specialists.