Quote:
Originally Posted by irpuregenius
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  |
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