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Originally Posted by painman2009
. I tire of crying , I'm physically tire of this pain and lack of sleep. I am riddled with guilt to what this is doing to my wife and kids. Im afraid of the direction this is going, worse and worse. Im tired of no results , of no real forward motion in my treatment. I sit and watch as my life passes me by while I cry and writher in pain. this beast also interferes with the lives of my wife and kids as each day they try to plan out can change as quick as a flash of lightning. I also am losing my ability to control my reactions to the pain I feel. I and crying in pain all the time , the pain shows more in my facial expressions causing my wife and kids unease. also my friends are affected when they come to visit with my family. It causes discomfort among them as they do not know how to react.
I am alive and I "am" grateful for this but I wish i could regain some ability to hide what I feel, pain,emotion. I am saddened of course, I'm angry almost all the time lately . aside from my pain. I get uo and push myself to walk and "do" things. but It is getting harder and harder to push through the pain and the pain is spreading.my hands are becoming harder to use as well. my wrists are giving in between the pain and weekness with is beaching more prominent it is making using my canes and walker more and more difficult. the burning ,electrifying pain in my legs and my belly , back and other below the waste areas, its scaring me . losing my legs completely takes away a lot of my aspirations. I cannot dance now as it is but I wish to still dance with my dghtr at her sixteenth birthday, walk her down the isle and dance with her when she decides to get married. Ive already lost the ability to play sports with my boys, to do the work around the house in which should be done by me if it weren't for this beast. I tire of trying to get treatment I need but insurance denies it , or agrees to partial... Am I weak ? I believe I am strong willed but "today" I know RSD is kicking my ****. I just hope I can pick it back up and fight again.. thanks for listening
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I wish I could reach out and "hug" you. I "feel" your pain, your frustration, and perhaps your fear of what your life is becoming. I have to believe that someday we will all get the help we need to improve our pain levels. Don't give up looking for answers to your pain.
Question- have you tried tdcs yet? It's not expensive ($300) and seems to give some people some relief. I would try absolutely everything that is available.
I have often wondered what I will do as my disease progresses (which it is doing but not to the extent many of you are experiencing). I have talked to someone who is in tremendous pain from a neck injury and lymes meningitis (treated). She has spoken to her M.D. about medical marijuana. It is still not legal in our state for medicinal uses but her M.D. said that once it is legalized, she will prescribe it for patients who are in quite a bit of pain. The woman with the neck injury couldn't wait for the day that marijuana is legal and has found it on her own. She uses it in a variety of ways- smoking, in tea, etc. and has found great relief from it. I'm not saying this or tdcs is the way to go but once I reach her pain level, I'm not closing any doors.
Realize your family loves you and are accepting you as you are. They are probably feeling as helpless as you feel and don't want you in this position. Speaking from my heart, if my loved one had the pain you are feeling, I would feel better by trying to help you however I could. Ask yfor their help whenever you can and know that they will probably feel good to do something for you. I know many of us don't want to burden others but I believe it will help those around us to not feel as if they are also helpless to help us.
I see you are from New York. Perhaps you could speak with your state senator or representative about the difficulties you are experiencing with your insurance company. The New York Attorney General successfully sued a number of insurance companies for failure to adequately pay out-of-network fees to their customers. I think I would fight my insurance company with everything I had left.
My pm put me on Tizanidine for muscle spasms. I take one at night and within 30", I'm out. Getting enough sleep is important for dealing with anything. I suggest you talk to a doctor or psych about your current status. Someone suggested anti-depressants and it's important to find the right one or combination. I think a complete review of your medications is in order.
Hang in there. There has to be better days ahead for all of us.