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Is this all in my head?
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SamyLila posted:
My doctor sent me to a neurosurgen who sent me to see a physical therapist who told me that the CRPS diagnosis the Dr gave me meant that the pain is not real, that it is all in my head. She suggested I work through my issues, but did not do any physical therapy. Is this a common approach? I have had the nerves in my left arm injured three times, the last time was when I caught my arm in a chipper shredder resulting in slight nerve damage, tendenitis in both sides of my elbow. I also had shingles on the same same/arm. I feel like giving up.
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bren_bren responded:
SammyLila, I don't know what's worse, your accident or your physical therapist. Run from him/her like there is no tomorrow. Yes, it's VERY real. Make sure she didn't charge you nor the insurance for the appt. & report her to your neurosurgeon. That is just awful. CRPS is fairly new in recognition but not in symptoms. Your pain signals are still being sent "to your head" even though the injury has since healed. I would be livid if I were you.

I'm not sure why PT would be issued for anyone w/ CRPS anyway. Maybe you would benefit more from finding a support group and learning more about the condition. PT is useless.

I'm sorry she made you feel that way. Dont give up.

Take care of yourself, B
 
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cweinbl responded:
Technically, pain is in our heads; nerve signals from the body are interpreted in our brain. However, your pain is very real and if it happened to me, I would report the physical therapist to the state licensing board. Put it in writing and (state this in the letter) send a copy to your attorney. Then they might take you seriously. I would also report this outcome to your referring physician. As we live in the age of litigation, he or she should be very concerned about an inappropriate referral. It's bad enough that our government is restricting access to critical pain medications. Failing to take our pain seriously is grounds for litigation and can, if it occurs regularly, result in loss of license. I hope that you can obtain a referral to a pain management specialist. Only after participating in a comprehensive diagnostic experience can a referral to a physical therapist, or any other healthcare professional, be appropriate. Good luck!
 
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hudsonmama22 responded:
Dont give up. Same thing happened to me. The Dr kinda made me feel like it was all in my head like I made it up or something. When I know it is something. I went to get a 2nd opinion and finally got the treatment I needed. It took me what felt like forever but FIGHT TO GET 2nd/3rd opinion. Trust me if you feel pain.... its pain. Your body is trying to communicate something to you.. thats what pain is.
 
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caspertab replied to hudsonmama22's response:
Hang in there and be your advocate and don't feel it is wrong to disagree with the doctor. It is your body and you know what is right and wrong. If he says it's all in your head, change doctors. If you are on lots of pain medications it is good to take a person with you to act as your advocate as I very well know the medications afffect my concentration. Two doctors caused my nerve damage so I saw 4 doctors who wouldn't treat me due to their colleagues making the error. I finally found an excwllent doctor who takes patients like me and we have disagreed at times but he listens to me and I will stay with him even though his office is 73 miles round trip. I have a pain pump so I go regularly every 54 days unless I need to see him earlier.I stay positive, volunteer for 5 agencies, and have a goood sense of humor and always a smile even with an 8 on the pain scale. Good luck.
 
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77grace replied to caspertab's response:
Hi caspertab,
I agree,we definatly know our bodies better than anyone else!I'm glad you found the right DR.!
I noticed on your post you mentioned Volunteer work! I am wondering ,what kind and how how do I find out?
Thanks,77grace
 
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caspertab replied to 77grace's response:
There are lots of places to volunteer and they are so happy to have you. I volunteer at a school as a helper to a 5th grade teacher. I'm there 9am-12noon and sometimes 1pm, but my pain tells me that is too long. I go once, sometimes twice a week. I'm also President of the Board of Directors of an epilepsy agency, and Treasurer of 4 epilepsy agencies. I visit legislatures in our district educating them about epilepsy and also go the Capitol in Tallahassee, FL. and give presentations. I am active in my church and volunteer for activties there. I am awaiting for my FBI background check to clear to volunteer at the Senior Neighborly Center which is across the street from me. Short commute and I can walk! I'm artistic and will be helping with crafts, and they also need a piano player as they are using CD's. Volunteer work is nice as you set your hours and the time.If you have had a bad night due to pain and need a little extra time in the morning before going in, they don't mind. I find 9-10am to start off in the morning is good for me. Even if you volunteer for an hour, that place will be so appreciative. People always tell me keep busy and you will forget your pain. Those are ones who have not walked in our shoes. My nerve damage is the intercostal nerves between my ribs and breathing causes pain. Lying in bed all day feeling sorry for myself I would have the same kind of pain as if I am out and about. I don't cry over spilled milk. I have been dealing with chronic pain for almost 9 years and keep a smile on my face, and humor helps alot and 3 beautiful grandchildren, one who asks me if I need ice for my owie! SPCA is a good place to volunteer. I decorated their building at Christmas and helped serve at their donor dinner. Ask friends and family, someone will have a suggestion. You also will benefit from it as I sure have. Keep me posted what you decide to do.
 
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77grace replied to caspertab's response:
Thanks caspertab,
My computor is jumping around and staying in one spot!Has that ever happened to you????What can I do??I guess I'l my provider!
Anyway,Thanks for the info,I know its what I need to be doing because sitting around here and hurting and then taking pill's for the pain is not the solution,I need to help others!
Take care,77grace
 
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caspertab replied to 77grace's response:
Hi Grace, Did you find somewhere to volunteer? Please keep me posted as I know you will find it rewarding. The school I volunteer at has a Grandparents day yearly and the first year (they are in year 3) had to ask those already there to leave early as so many people couldn't find parking places blocks away and it wasn't fair for them to be left out! There are 800 students in this elementary school and very few volunteers. I look at all the grandparents attending and if each one volunteered only 1 hour a week, the teachers would be greatly appreciative, and the students would benefit from the extra TLC. I'm not sure of your age, and don't want to offend you, but AARP has a web site and you put in your zip code and they will give you a list of places looking for volunteers. I am going through a difficult pain period and procedures to decide what is causing the unbearable pain at my pump site. Surgery looks as though it will be an answer which weighs heavily on my mind. It is times like this where volunteering is a real plus in my life.


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