Hi Angelina, You sound very overwhelmed with what is going on with you. And that is completely understandable.
First, you Need to have a Dr. overseeing your CRPS. An experienced one. They will oversee your PT-are you even in regular physical therapy with an experienced person working with you on a weekly basis? Have you been given meds to deal with your CRPS? Not just pain meds, but most of us take neurotin or lyrica, anti-depressants, some with sleep issues take meds for that. anxiety is part of this and some take those. I used to take all of the above. The other drugs help with the symptoms-they are not pain meds, but help with the other symptoms. Does that make sense? When I got this, I couldn't understand why I was 'anxious' I had never before had any issues with anxiety. But CRPS is connected.
A neurologist is a Dr. specializing in disorders of the nervous system.
CRPS IS a disorder of the nervous system. It is a disregulation of the 'autonomic nervous system'. Our 'sympathetic nervous system' and 'para sympathetic nervous system' do not work properly. Neither does the 'vegas nerve'. In time, if you look up these words in Wikipedia-it will make more sense to you. Take it slow, but I would encourage you to get an understanding what is happening to you.
These systems regulate our body temperature, thus explaining why we 'burn up' and get 'freezing cold' These systems control our blood pressure, explaining why we can get 'high blood pressue' or low blood pressure and pass out (syncope)
why our heart can beat too fast or too slow. I'm on blood pressure meds and meds to control heart rate.
It does make so much sense why you are not wanting to 'face' this or put it down on paper. I so understand that. It is so overwhelming. But this is the window of time for you to make the right choice for your recovery and hope for remission.
I am a firm believer in physical therapy-with a professional and 'at home' That is the only way that I kept my mobility. If it wasn't for pt, I would probably be in a wheel chair and not be typing this letter. I've had two frozen shoulders, with very little range of motion. But I had lots of pt and regained use. Frozen fingers and hand, with NO MOVEMENT- I didn't get full range of motion as had delay of treatment. ( I was 5 years getting correct diagnosis of crps) So my left hand is like a claw, with partial movement. My feet and toes have full movement. This would not have happened, had it not been for going thru the pt -probably 200 treatments as well as 200 hrs of massage therapy. It was pure hell-torture really. I took pain meds before going. lots of tears- I didn't know I had crps with the shoulder pt.
There are so many friends on this site that will say the same thing. You have the wonderful advantage of being on this forum early in your crps. They will CHEER YOU ON! I promise. When I saw my 2nd neurologist and was diagnosed with full body- he suggested seeing a professional for 'talk therapy' and I did that. It did help me a lot. This disorder is a devasting diagnosis. Not one without HOPE, but there is a reason it is listed at a very high mark on the McGill Pain Index Out of 50 pain scale, type 2 is listed at 42. McGill is a university in Canada.
It's not easy to understand all that happens to us, especially when we get spread and it progresses. It is very difficult for those who have no knowledge of it, to really understand what we go thru. Don't let that hurt your important relationships. It's really reading on this forum, that I got an education of this disorder. I've had 5 crps Drs. (3 neurologists and 2 hand orthos) and they never broke it down like the friends on this site. There are some really crps educated people on here.
Let us know how you are doing. I don't understand why the pain specialist doesn't want to be involved??? A podiatrist doesn't sound like one that should 'oversee' your care, especially since you got crps after his operating on you. They usually like to 'distance' themselves. I am not saying he is responsible for your condition- mine happend following surgery also. take care, loretta