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Old 09-10-2015, 09:00 AM
RSD ME RSD ME is offline
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Join Date: Sep 2013
Posts: 1,500
10 yr Member
RSD ME RSD ME is offline
Senior Member
 
Join Date: Sep 2013
Posts: 1,500
10 yr Member
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hi mama. i'm so sorry you are going through this. when i was first diagnosed with rsd i went through something similar. the things i have learned in the past four and and half year of living with rsd and dealing with drs is this:

1) learn to be your advocate. don't just do whatever the drs tell you to do. i'm not a dr and know i need drs to help me manage my rsd pain, but i have learned to get more then one opinion to confirm i had rsd and before making a decision on how to treat my rsd.
2) after i get several opinions, i research all the options out there and that were given to me on how to treat rsd and weight the pros and cons.
3) after i weigh the pros and cons and see what risks are involved i look the for the least invasive treatment to try first and make sure i am comfortable with that treatment.
4) i make sure to bring pamphlets about rsd and pass them out to all of my drs so if they don't know what it is, they can educate themselves on it and pass it on to other patients who have rsd so that they can educate themselves on it.
5) i never let any dr get away with telling me that rsd is all in my head. i kindly disagree, hand them a pamphlet, leave their office. then i cross them off the list of drs that i want treating me.
6) i never accept a dr trying to scare me into getting a procedure done that i don't feel comfortable with by for example telling me that if i don't do it by a certain deadline there will be no way to manage my pain.
7) i never let a dr tell me that should be treated the same as fibromyalgia. rsd has visible symptoms as well as widespread burning pain where fibro has no visible symptoms and widespread aching pain. though i have both, i know by reading and by experience that they are totally different and treated differently.
8) i always make sure i know the costs involved in procedures suggested because i was told that some procedures are very expensive and may be a motivator for some healthcare professionals to want to try them.
9) i never let any dr treat me like a lab rat. i am a person who has feelings and is very sick and want to be treated with respect and compassion. if this is not possible, i walk away.
10) i never stay with a dr who says that rsd doesn't spread especially with surgery when i know by reading and educating myself that is not true. i also know because i have had my rsd spread and it is very obvious. you just know when it happens.
11) if a dr asks me how i feel or that i look fine, i tell them that i feel like crap all the time because i am in constant pain from my rsd and that i may look fine because of all the meds i take to just be able to get out of bed, shower and make the trip to see that dr. i don't go back to drs who say things like this. they should know that with rsd you never feel good and looking fine doesn't mean you feel fine.
12) i always follow my gut. even if i am not a dr, there are some things i am wary of like the scs. some people swear by it saying it has helped them alot. some people say it didn't help and had too many complications like twisted leads and dead battery packs. i am not saying i will never try it, but it will definitely be a last resort for me. for now the pain meds and antianxiety meds i take along with a home exercise program doing mild stretches to try to keep my hand and wrist from completely atrophying work best for me.

i hope that whatever you decide mama, that you find a good dr who can provide some relief for your rsd pain soon.
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BioBased (09-10-2015), DejaVu (11-14-2015), Littlepaw (09-10-2015), mama mac (09-10-2015), stillsmiling (09-15-2015)