Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 01-08-2015, 09:04 PM #1
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Angry Update: Beyond frustrated!!

So yesterday was HORRIABLE to say the least, I went to see a "new doc" or so I thought after 2months of no doctor I had an appointment drove about an hour only to be told by this Jerk he didnt want to treat me after driving an hour, sitting for another hour put in a room that had NOT been cleaned it had crap all over from past patients from injections I think then He said he'd take my grandma but not me then said well if I were you in constant pain Id be depressed well duh so he said he'd "take me" as a patient if I went on Lyirica & depression meds which cost around $500 between both now this is after telling him how we cant afford something thats going to cost that he said find a new pharmacy! Also he said after being told Ive been without a doc cuz nobody wants to take me cuz I'm too complex of a case that basically I should save up & see my old doc (who went to a sports med place & is $600 for new paient fee) are you serious is all I kept thinking, I left in tears. I really dont know if I can keep doing this, I have been in the ER 2x in the last 2wks cuz the pain is so bad I cant take it I am at a loss of what to do anymore, Im so depressed & I am at the end of my rope so is my poor mom who can see Im giving up due to no life which kills me. I feel horriable seeing how much it hurts her to see me this way & I just know I am really struggling to see any light at the end of a dark tunnel. what kind of life is being in so much pain the only time u get out of bed is to use bathroom get food/drink walk dogs or have a somke?? that is my life every day I dont even cook anymore cuz I am not able to stand long enough to do that. Im ready to call it quits :balling:
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~HEIDI~
GENERALIZED RSD/CRPS stage II/III (entire body
.
) since 2004
HIP DYSPLASIA(right side), hip turned & tilted into back & aprox 2in higher than left side; <wear a shoe lift>
ARTHRITIS in both hips & Pelvis; Both Ball Joints are Deteriorating; SIATICA (both sides now) & EPILEPSY
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Old 01-09-2015, 08:48 AM #2
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hi Heidi. i'm so sorry you are going through all this. if its not bad enough to live with the constant pain of rsd and the depression and anxiety it brings, we also have to sometimes deal with uneducated doctors who think its all in our heads.

one of my family members dr told them that rsd was psychological. REALLY! so how do you explain all the physical symptoms that it causes. my drs treating me for almost four years for rsd pain and depression and anxiety know better. they can see the physical symptoms and they know the constant pain rsd causes because they have educated themselves on it.

i know its frustrating and hard to try to keep looking for a competent dr, but if you were diagnosed with rsd and are not being treated properly, then maybe you could try checkin out another dr. you can't give up honey. you need to be treated properly for it. i know how hurtful it can be when some drs say its in our head and try to prescribe meds that really don't help rsd.

i'm not a dr, but it sounds like your dr is confusing rsd for fibromyalgia. i've noticed a few drs confusing the two. if they would just take a few minutes to read about rsd they would know they are totally different. rsd had physicial symptoms that can spread where fibro does not.

thats not to say fibro pain isn't real too. i was diagnosed with fibro a few years after getting rsd. it is also very real and painful but a different kind of pain.

and from what some of my drs told me, Lyrica can be used to help manage fibro pain where it doesn't really help with rsd. neurontin (gabapentin) works better for rsd pain and can also treat fibro pain. thats what i take it it seems to help manage my pain from both better. just had to increase it to be able to do this.

as for antidepressants, it might not be a bad idea to see a dr to help with your depression and anxiety that rsd can cause. that's NOT to say its all in your head. its not all in your head. the constant pain you feel from rsd is real and can sometimes cause depression. dealing with uneducated drs can also add to this depression and anxiety. i see a dr to help me deal with this by prescribing meds too.

so you need to keep trying to find a good neurologist and/or pain management dr who can properly treat your rsd and a good pyschologist and/or psychiatrist to help treat your depression and anxiety that rsd can cause form the constant physicial pain your in.

i carry brochures in my handbag that i get from rsd hope and give on to each of my drs in hopes they will read it to educate themselves on rsd and also spread awareness. some do and some don't. but i keep trying to pass them out and educate people on rsd so we are not treated like its all in our heads.

rsd hope and rsdsa online have info on drs in different areas (if i remember correctly). and i see you're from Florida. thats where Dr. Hooshmand worked and retired at. Vero Beach, Florida. he has a great website with tons of info on rsd. he is one of the most educated drs on rsd. there may be other drs there that have taken his place that can help you.

i hope that you know that there is a light at the end of the tunnel. you just have to keep looking for it and not give up. rsd is not in our heads and the constant pain is all too real. don't let some uneducated drs make you feel otherwise. i know its hard to keep looking for competent drs when you're in so much pain, but try to keep looking so you can have your pain managed properly. there are good drs out there who can help. you just can't give up searching for them.

i hope you can get some rest and get the meds you need to manage your pain and depression. in the meantime, try epsom salt baths. it may not take all your pain away, but it will help a little with relaxing your muscles and mind.

i'm sending the softest of hugs and warm and caring thoughts your way. you're not alone. am always here if you need a friend to talk to. hope today is better for you.
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Old 01-09-2015, 11:12 PM #3
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Frown re to my post

Thank you RSDME, for your message it brought me to tears honestly, both my mom & I have called countless places alot of them said NO or hung up I'm a cash pay so some dont want that either & the money she just put out broke us, the hospital wont do much cuz they dont want to deal with cronic pain so I am just lost. I dont mind seeing someone worth seeing & being on depression meds cuz I think it may help but I need a doc who understands money is a HUGE factor in my treatment also. I am in constant tears, got dumped 2 days before xmas which just made me feel even more worthless & my mom is trying to keep everything together but it's killing her & I can see it normally I'm her rock not the other way around so I really cant talk to her alot cuz I know it hurts her so this is the only place I have to vent & be real about how I feel. So thank you all for always listening letting me cry & scream etc Its the only reason right now Im still here..love to all of you
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~HEIDI~
GENERALIZED RSD/CRPS stage II/III (entire body
.
) since 2004
HIP DYSPLASIA(right side), hip turned & tilted into back & aprox 2in higher than left side; <wear a shoe lift>
ARTHRITIS in both hips & Pelvis; Both Ball Joints are Deteriorating; SIATICA (both sides now) & EPILEPSY
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Old 01-10-2015, 12:13 AM #4
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Isn't always easy ,rsd get the best of us , don't give up!!! We have rough days and all many times comes together at the same time ,we don't understand why is this happening ??? But always remember to try more and again ,you will Finf the right dr and the right person for you even if now seems impossible .
I also had a bad time staring few Days before Xmas I got one day so bad to the point I wished to Die. I Quenstined all what I believed and Asked who ever is in heaven why I needed to suffer such of horrendous pain and also asked why people who suffers this much can just pass and don't wake up next day?? I was mad and give up all what I ever believed and one friend called me coincidently and suddenly out no where told me ... Life is weird in many ways we believe in many things and also deny others ,we stop trying because we are tired and give up but somehow things fits in the right place for the right reasons and many times we have to wait so long to see the reasons when you see it you will undertstands it meant to be that way even when you things is worthless there is a great value ,you learn to suffer and learn to overcome ,no many can see a light after the darkness ,you do .
I was thinking whatever you don't know hell for sure but in Realiity it was right , He distracted me from my pain and suffering ,sudenly I was thinking in all bad moments I had and how I overcome and try Again but did not mean I wasn't mad , I was mad because no dr want help me before ,no dr knew what I had those Days ,I got Mail from my ins wc denying all my meds and treatments ,got a seroious allergy reaction for no reason ,my ex job called me to fired me again !!!! I was diagnose celiac positive and Xmas was around the corner and I was sick !!! And I was thinking for first time in my life , Do I really deserve this ??? No ,I don't neither do you !!!
Yes we know Darkness as my friend said but we knowing pain can see beauty in a Cloudy day ,wait and look more around and let the darkness vanish ,you will see a shiny day soon ,your day will come and will be the best day ever just keep trying and have more faitht than ever ,you are not alone and who walks away from you is not more than a looser , you deserve and are the best always know and keep that in your mind,you are the best and no one who walk away will ever ever ever be better than you
Learning is hard because we had the hardest school in life but sure we had all graduate with pride . Keep walking proud of who you are and who you have become , you are a wonderful woman and sure the stronger ,you will find the help you need ,I'm sure the storm will pass ,I will keep you in my prayers and hope always for the best ,also I want to add ,you are so bless by having your mother at your side ,remember always her and know she is the reason for you to believe
Love and hugs your way,Jesika .
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Old 01-10-2015, 12:26 AM #5
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Hi again Heidi. i know its upsetting when you come across drs who think your rsd pain is all in your head. and i know it very expensive to treat rsd. between the dr visits, meds and treatments its really hard to pay all the expenses. but try to take it a day at a time and hold onto hope that you will find a dr who knows how to treat rsd. there are good drs out there who can do this, you just have to keep searching until you find them. and as for the financial expenses, maybe you can check with social security or an assistance program to help you pay your medical bills. rsdhope.org has info on medical assistance and disability and ssdi. rsd is listed as a disability. rsd hope will explain in more detail about it. rsdsa.org may also have some info on how you can get help with your rsd. just hold onto hope honey and don't ever feel like you are worthless because YOU ARE NOT WORTHLESS!!! you are a good person who is sick and needs help. you and your mom are lucky to have each other. and you have me as a friend too. and everyone on this forum are awesome. i hope you can get some rest tonight. tomorrow is a new day. search the web for info on how to get help in treating your rsd. if i can help at all, just let me know. more hugs coming your way.
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Old 01-18-2015, 11:31 AM #6
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PLS DON'T QUIT.... You are not alone!

I traveled out of state to a doc who said YES I can help YOU....found a way to get there etc.,...and guess what; she held my hand and said...I am so sorry, but I can't help you...

And I love the receptionist who said... I won't let you see the doctor go to a pain management center... I should have asked her, where did you get your degree? Because I need to know what college gives a receptionist degree and when you graduate you get a doctor's one as well...

CRY! GET VENT but please don't give up....your pain is REAL....and the cost of being sick is

KEEP UP THE FIGHT
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Old 01-21-2015, 05:49 AM #7
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Heidi

I wish I was closer because that would be a REAL hug. I hate the days when I want to just give up. For me it will rear its ugly head every few months. I just get tired of forcing myself out of bed, and then going out and not be able to do everything I aim to do.

One of the things I tell my wife when Im feeling all down and out. Laying on the bed in so much pain that it cant be humanly possible to tolerate...I tell her, it isnt fair. It just isnt fair!

I vent and cry, and sometimes this might take a few days. But after I get out the anger and frustration. I start self talking myself out of bed for a while. then I self talk to get outside...pretty soon I am getting dressed, and heading out the door to do whatever I can push myself to do without hurting myself too bad.

Sometimes the frustration, anger and feelings of...is this it? Can make the pain worse. I will be praying with everything I know to put a good doctor in your path. We are all here for you, you are only a mouse click away from a shoulder to cry on, or person to vent to.
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