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I got my confirmed diagnosis today, CRPS. I'm a ball of emotions. For 5 years I've been trying to get doctors to tell me what's wrong. I've had them tell me to take pills for the pain, that a diagnosis doesn't matter. I've had them tell me I'm depressed. I've been told it's all caused by anxiety. I've been told it's somatization. (I won't make you go look that up, it's being so batsh!t crazy you physically manifest symptoms.) Five. Long. Years. In that time it's gone from just my foot and ankle to be two entire limbs. A doctor saw me, in his office once, with my leg swollen so much up to the knee that it was literally rock hard. He wanted to give me meds and send me home, he wasn't worried about what was causing it. I was even once told by a neurologist, a specialist who should be able to diagnose this disease easily that I don't come close to fitting the profile. After I explained to him what both "CRPS" and "RSD" stand for. <_<

 

I literally feel like the inside of my skin is burning. Every moment, of every day, for five years. And they dismissed me. Doctor after doctor sent me away. I literally went into offices sometimes and begged for help, crying. I just wanted it to stop. And they called me nuts. It is such a relief to finally have a doctor listen, and tell me I have a real, honest to God disease doing this to me. And even though I've wanted this for so long, it's scary as hell to know that I'm facing this forever. The best I can hope for is "good" days with less pain and to prevent it from spreading. It's also difficult not to be mad. I don't know mad at what exactly, but mad because people with autoimmune diseases are prone to CRPS. And I started this road before my celiac was diagnosed, and it was caused by an injury from falling off the curb in front of my house which happened because of my ataxia. From celiac. I'm 36, and i just want to scream that it isn't fair!

 

I need to go to PT but I need to go to someone who has experience treating PT and can do aqua therapy in a heated pool. And the place my doctor wants me to go to isn't covered by my insurance, so now I get to spend the week before my surgery calling every PT place in the area, then finding which of the ones that can do it is the best for me.

 

Anyway, mostly I think I'm probably ranting. Although any helpful suggestions are awesome. I know #1 at the top of my list is to get the heck back on my low histamine diet before I go fling myself off the highest cliff in Utah. (at least it would be a beautiful view this time of year :lol:)

 

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Aww, Addy, I know how you feel about getting answers but the answer still sucks.  I've been thinking about you and will think about you when getting an organ removed the same time I do, haha!  

 

Sometimes you can go through your plan coordinator and request that a provider be added to your insurance.  If it is through an employer they will possibly be someone in HR that negotiates with the health plan people.  If the other places for PT don't look too good, you can definitely look into doing that.  We did it for my grandpas home health agency and were successful- they were no longer on his supplemental plan and he has had the same nurse coming for like ten years and we easily succeeded at getting them back on with just a phone call.  So, worth a try.

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I may try that out of laziness, picking the right one out of dozens just seems so complicated. And one wrong thing can mess this up so bad that I hate to be out there floundering on my own when my doctor isn't sure who else to point me to for this.

 

We'll be awesome surgery buddies. We've been totally, randomly, accidentally doing things at the same time lately, or just doing similar things. The grill, trying coconut oil at the same time (I bought mine the day before you said you bought some), and getting our guts ripped out. :D (That was all you right? I could also just be totally off my rocker and it wasn't.)

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Yep. we're twinkies! Funny thing is now Sams club has that grill for $70 and I bought it for $80.... special spring item... lol!

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I'm  so sorry  this  illness  has  come to you....You are in my thoughts & prayers... It is  hard  for others  to understand  your  pain.... I have  read  a  tad  about  this  &  I see  many  say  to follow  an anti-inflammatory  diet  plus  vits & mins.... Are  you into holistic  medicine ?  Also I  wonder  if  acupuncture  would  help ease  the pain a  bit...

Just  a  couple  of  thoughts on  what  I have  read!

HUGS

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Thanks. I already do a low histamine diet, and it does help some. I needed my symptoms to be obvious and in full flare for dx so I went off it for the appointment. I am back on it now and I'm sure it'll be helping again soon. I'm not against holistic medicine, but it would absolutely have to be something that is covered by my insurance. Getting the dx finally may help to get my disability approved, but until I have some sort of additional income there is less than zero spare money.

 

PT should help me, I just need to get everything sorted out to start. I talked to someone with the insurance today and we're still trying to get everything figured out. I guess it isn't entirely certain whether or not the PT place accepts my insurance, we're trying to find out. If they don't, because of how specific my needs are, they will make a network exception for me. I just have to hope that doing that goes quickly and it is all taken care of by the time I finish up recovering from my surgery.

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Good to hear you may be able to get into the good PT place :)

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Oh sweet Addie, I am so sorry you're in so much pain. I've got no suggestions or advice. Just lots of love, prayers, and great big ((((HUGS))))

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Addie,

I have been reading your post over and over and I still do not know what to say. I am so sorry!

Keep up with your down-to-earth comments that ring of common sense. I laugh out loud a lot because of you and get weird looks from my 13 year old when I lift my gaze up from my iPad!

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I'm glad that I can amuse someone. I think I'm past the emotional roller coaster of it and can just deal with it head on now. As soon as I can get started I'll be in PT. My gabapentin seems to be helping some, not counting the whacked with a hammer part with my hand and arm. And this hospital stay is a nice break. The narcotics just knock the pain right out and if it weren't for feeling like my guys got ripped out (cause they were) I'd be walking on sunshine.

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I had RND (the child version of CRPS) and I can sympathize with the pain you must be feeling and the doctor stuff. I found water therapy to be very helpful and pretty relaxing. If you can't find someone who is covered by your insurance then perhaps there is a community pool nearby that you could use. After not being able to move too much, the weightlessness in water is lovely, even if you aren't moving too much in it I found it helped loosen me up.

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After talking to two different people in two different offices today, I have confirmed that somehow no one from the PT office ever got the exception form. And for some reason that I'm sure not even God can fathom, the one they emailed to me expired so I can't load it to print it and take it down. So now I get to call the insurance people again. Yay!!! At least now I know I can just ask for the form to be emailed to me and I'll take it down to the PT office my damn self. This is the kind of crap that is the reason I believe that the only way for anything to get done right (or at all) is for me to do it myself.

 

I do have a community center near me that has a pool. I think they even just got done building a new one or are almost done with it. Unfortunately the monthly fee for it is crazy high. They also only do their arthritis aqua classes at times that don't fit my schedule. I'm hoping that maybe they'll add more teachers or more classes at a more suitable time. If they do, and I can get it recommended by my pain doctor I may try to push my insurance to pay for it instead of PT.

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So sorry it's been such a long and painful road. Happy for you that you got the the dx and disability....finally... unbelievable how long it took and what you had to go through in the meantime. We're so at the mercy of Doctors and they can be so clueless!!! ...not to even get started on the insurance companies.

 

I'm sending positive thoughts your way that you get this pool situation worked out soon and that it gives you some relief. That sounds like a really good thing. All you want to do is get into a pool, sheesh! It shouldn't be so hard right? I used pool therapy for a foot injury once and it really worked. Hope you're floating in that nice relaxing water soon :)

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Hey!!!

 

My heart goes out to you Addy.  ((cyber hugs))

 

From getting to know you through your posts, I believe you are bigger and stronger than CRPS.  You know our forum peeps are here for you!  If bad days come, we are here.  On good days, we are here too.  You do make me laugh often with your posts.

 

I went to some site to double check my info. and it was a freaky site to say the least.  :rolleyes:  My niece did have the child version.  It started in her ankle, she was in a wheel chair for some time.  AND then MIRACLE of miracles... it went away.  (she had a diagnoses, a second diagnoses, and yet a 3rd diagnoses ~ my brother and his wife just would not believe it.  Had to have it from the best specialist in the area, and then out of state too.  When I say it just went away I mean ~ she is out of pain, out of the wheelchair, and she has been dancing in the high school color guard!

So Addy,  You keep your 90% mental and 10% physical being 110% positive thinking going.  We'll put our creative genius minds together and just have to come up with an effin cure! :D

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