So I hope you all are having much better days than I am right now! I know I havent been on much but I really thought I'd be in a much better place right now. I had this unreal expectation that after I got rid of the massive infection I had I'd be feeling a whole lot better than I am/do. Now I know having this demon of RSD as long as I've had it we dont heal like the normal healthy person & Ive taken that into consideration but I'm not much better, less sick yes but pain or RSD wise Im worse. I know it's going to progress but man I dont know that I can take much more of life like this!
Im an emotional wreck, I'm grumpy, mood swings, pain thru the roof, etc & this is NOT me! Even now as I type this I'm crying & yea I'm a very sensitive chick as it is but this is more than normal for even me. So I'm here, reaching out to all of you, I am at a loss as to even begin to deal with life right now. I feel like such a burden on my family, I lost my doctor, Im now out of my pain meds which has brought the seizures (worst one's I've ever had in my life all night til this morning) & so far no doctor wants to take me because of all my issues, it's too much for them I guess. so now what do I do??
Arent doctors supposed to want to help the people with the difficult case's isnt that what they go to school for???
Is there anyone from my neck of the woods ( Holiday, fla) (near tampa) that might know of a doctor who will take me?? any ideas on how to cope right now for me any advice would really help me thanks!

Heidi, try:

Dr. Ashraf Hanna
Florida Spine Institute
Outpatient Ketamine, SCS, Nerve Blocks/Epidurals
http://www.floridaspineinstitute.com...-hanna-md.html
(727) 797-7463

in addition to my email to you cdwall, they are supposed to call me back the gal said she's been there 14yrs & with all the probs I have she didnt feel the doc would want to take me on as a paient due to all the "chanllenges" how difficult of a case I am & of course she's talk to doctor, since she couldnt speak for him & get back to us, which hasnt happened of course. I dont want to go to a pill mill cuz who knows if they will be there the following month, or if it gets raided & we're there (me mom & gma) what happends you know what I mean, so makes things a little harder finding a legit doc/clinic who knows about or willing to learn about RSD & take me on as a paient.

Heidi,

So sorry you're having such an awful time. I don't have any formal medical advice, but I can and will pray for you.

One thing that really helped me when I was at the end of my rope was the advice to think of someone else in need, and reach out and do something for them. Thinking of someone else's pain and doing something (however small) to make them feel better got my mind off my own (however briefly.)

I am really sorry that you've been going through all of this. I know how horrible of a condition we have and especially the pain med situation. I've taken everything under the sun to try to get the pain to stop short of illegal substances and the addiction that comes with trying to feel normal is completely annoying. I know life seems bleak and you just want it to end because I've been there. It took a long time, but I'm no longer depressed like I used to be. Don't get me wrong, I sometimes contemplate killing myself to make the pain stop because everything feels hopeless, but it's just not worth it. I've felt like a burden to my family since I got this disease, but I know for a fact that they would prefer me alive and as a burden than dead. Everything that we're going through is the biggest challenge that we are going to face in our lifetimes and just getting up every single day and dealing with it makes us stronger. Maybe one day there will be something that takes the pain away for good that doesn't leave us addicted to pills or depressed or unable to sleep. I have gotten off all pain killers and nerve blocking medicine and off of everything completely other than the occasional oxy, methadone, or dilaudid to take away the edge depending on how bad it is. Being clear minded with unbearable pain is better than being drugged out all the time in my opinion just because you can think rationally. Rationally thinking, one day we will be okay, one day the pain will be gone, and one day we'll be normal people, but we'll be stronger for surviving what we've been through. Don't lose hope, don't give up, find outlets for your frustration, and as hard as it is, stay positive. Being positive has been the hardest emotion to achieve since I was diagnosed 11 years ago, but it works better than any pill ever has. You'll make it, you're strong enough to make it. We all are. Good luck with what you've been going through and I'll keep you in my prayers.

Heidi, I hope you have found a doctor by now and have got appropriate medication going again. I'm aghast that you could be told in the phone "no I don't think so" I like you thought doctors truly did want to help people but it seems not. Hang in there babe, you have gone through so very much, know that you are well thought of on these boards and we all hold you in our thoughts. Big hug

First Let me say thank you to those of you who have reached out & responded to my post I cant begin to tell you how much it means. Also to Ms PamelaJune your kind words really came when I needed them the most today, you have NO IDEA! so THANK YOU from the very bottom of my heart & soul thank you!
As for a doctor it's been a HUGE NIGHTMARE trying to find one who will take me, I have called at least 20 offices, hung up on by at least 4 offices & the few that were "willing" to take me on were a minimum of $500 for the office visit which we cant afford, but somehow by the grace of god my mom called an office (45-60mins away) who will take me & under $200 for office visit cant get in til Jan 7th but it's something. I am praying it is not a pill mill & a decent doctor. One of the downfalls is they dont know about RSD which lets face it not alot do but I dont think they've even heard of it so I am going to bring some information for them to have & learn from. I also am really hopping this doc isnt like most with the whole "God complex" Im the doctor your nothing attitude which I am sure you all know exactly what I mean by that lol cuz if that's the case by the time he see's me I am going to be in pain overload & will have to put him in his place which wont be the 1st time Ive had to do that I dont enjoy having to be a Bi*** but after 10yrs of RSD & too many doctors treating me like Im nothing I've gotten to the point of not putting up with being talked down to ya know. ok I've rambled on enough for now been a super bad painful week & with no meds I am ready to scream from pain so might just have to suck it up & go to ER before I either go nuts, snap or put head thru a wall I just do not like hospitals so doing what I can to avoid that..I will update soon, love to all of you and thank you all so much again for just being here for me

Hi Heidi, I am so sorry you are going through this terrible time. BTW - I love your new picture! You are fabulous!
I am so surprised that in a major city like Tampa there aren't any decent pain management doctors. It is totally ridiculous to be told you have too many issues. MANY people are sick with more than one diagnosis.
Is it a matter of health insurance coverage?
Who manages your epilepsy treatment? Can that doctor give you a referral?
Wishing you peace, Lottie

sorry you're having such a tough time Heidi. hope you can find a dr to help you with your pain. maybe rsd hope and rsdsa online might have some drs listed in your area to help you. i am not in that area so i don't know of anyone. will be keeping you in my thoughts. hope your new year is better. soft hugs.

Heidi Iam so very sorry for what your going through and understand your problem with finding a doctor who is willing to take care of all the issues and understand at the same time and with passion.
I have the same issue with the full body RSD ever since it went full body every year I have been diagnosed with another disease or finding out one is getting worse from the rsd, to thyroid cancer which led to hypothyroidism, then sarcoidosis, gastroperisis, a connective tissue disorder, then avascular nacrosis which is bones dieing last year was just the ankle now its in my whole right leg and then my ankle collapsed. So finding a doctor that will listen and know how to handle it all is hard the best doctor I found was a rheumatologist, my pain doctor understands but need separate doctors for really it all. I tried seeing a internal medicine doctor but he took issue with my high doses of pain meds and me being in hospital so much, he came to my bed one day in the hospital and was like I don't want to deal with this anymore and if I have a problem with it then that was tough. it was probably for the best as he wasn't working well with my pain doctor who is one of the most important of all the specialists I have. Then I went through so many orthopedists to help me with my bones but all said because of the rsd even if my bones collapsed or broke they wouldn't help. Luckily a few weeks ago I found one that isn't afraid to help me. I really understand how frustrating and depressing it is, many times I just want to throw up my hands and my emotions too are up and down. I just cant understand why my body is falling apart on me. I do the best I can to do what I can each day which isn't much. painting is what keeps me busy the most. the other day my brothers girlfriend had the nerve to say that me staying home and not getting out was so un-healthy and me being with my mom who helps me stay alive is un-healthy that I should get away from her at least an hour or more a day. I told her because of my sarcoid I could stand for more the 30min without running out of breath and the rsd and avn makes me to weak and she was like I just need exercise. I wanted to just slap her.

Again I want to say Iam so sorry for all what your going through and hope you find a doctor that can help you.

Samantha