Hi,
 

After the 3rd time of going to the ER, my Dr. just told me not to go back, to just call him at home or at work. I was told it was all in my head. They had a lot of my info on file but it didn't matter, they still treated me like crap.

I think though it doesn't hurt to go once to see if they do treat you and how they treat you. You might run up on a Dr. that knows RSD.

Ada

Thank you so much heres why Ive been missing
 

well i haven't been to the ER yet but its been close, i have made an apt with my pm,, I'm frustrated there too. i am taking your advice and seeking the letter and my pm calling but here is what my pm said on the phone.. if it is during hours come here and i will give you something now i don't think he gets it. he is an hour and a half away I'm talking about needing days of help. the pain has kept escalating and I'm on my third lesion. that is where i have been taking ativan and lying very still praying my lesions don't turn in to ulcers. two on back and one on arm above elbow. this is what happens to me when pain is not controlled. lesions.remember i have a few bad ones when i was in crisis a few years ago. well the lesions get everyones attention. fist they biopsy them at the hospital and then once they are sure i don't have aids they usually treat me. God help us all. thank you all so much I will let you know what happens at pm. I appreciate your post s so much. sincerely dc

SO SORRY YOUR HAVING SO MUCH PAIN. i PRAY IT WILL GET EASIER OR YOU WILL GET AN EMERGENCY ROOM DOCTOR WITH COMPASSION AND WILLINGNESS TO HELP. TAKE CARE DENISE

The problem with PM docs is that ALL their patients are suffering. If they took those calls they'd be working 24/7. My primary doc prescribes my pain meds and is much more flexible than the PM I worked with. Have you discussed a morphine pump with your PM? After multiple hospitalizations I'd broach the topic.

morphine pump
 

thank you for the suggestion of the morphine pump, i was interested in all pumps, but am not a canidate. I had a port for one month and it caused havoc with my body activated full body alloydina and infection my body rejected it. Dr. S said i am not a canidate for anything implanted. Unfortunately. But I appreciate the suggestion. dc

When was the last time you saw Dr. S? Since you were a coma patient and you are in such pain now, why don't you call him and get some advice from his office? And when did you last try the pump? I wouldn't give up on the idea. Never, never dismiss something until you've you've looked at it from all angles. Perhaps you need a different medication in the pump to offset the alloydina. To me it sounds like you've given up on a lot of treatments, but maybe you can't afford to do that because you are so sick.

Keep an open mind. One thing I did a month or so ago was taper down off all my opiods. I got tired of being tired and depressed. I discovered that without my Fentanyl and oxycodone I'm in a whole lot of pain, especially when it rains. So I went back on them, but on lower doses. I'm definitely not as depressed as I was, and the meds are 75% working, except when the weather is really bad, then they are only 50% working. I saved some of my stronger patches just in case I find that I want to use them.

Can you try ketamine again? Does that remain an option for you? When did you go to Germany?

How far are you from Dr. K? Would some infusions help you at all? I don't know what kind of insurance you have and what he is willing to accept.

I'm so sorry that you are having such a hard time. Where is your family? Can you connect with your parents or siblings for a while and try to get a handle on a treatment that is right for you?

I'm just throwing out some ideas because you've had some very sad postings in the last 5 months or so.

Wishing you the best of luck, XOXOX Sandy

even when my PM doc called the ER and said that I was coming in and it was an emergent situation (steroid headache after a nerve block) they refused to offer me any relief. They just ran the CT scan and told me nothing more could be done. Hopefully you are in an area with a better hospital. I pray that your pain level comes down, and that a workable treatment is found for you. Lisa

Thanks for this.

I used to take Toradol daily. Until the FDA banned that. Now you can take it short term, or get a shot in the ER. It's an NSAID. To be simpler, when I get breakthrough pain that my methadone, and the rest of the cocktail isn't working, I take two Aleve's.
Amazing what a little NSAID can do every once in a while.

I hope that you get your pain under control!

pete

Aleve- thanks
 

Pete thank you so much, i will go get aleve today- i would be so happy if something that simple did help- but it makes sense. i cant wait to try it. :) dc

Sandy thank you for your thoughtfullness
 

I'm just throwing out some ideas because you've had some very sad postings in the last 5 months or so.

Sandy thank you, i didnt realize i was posting such sad notes, it has been and remains a very diffucutl time. My breakthrough pain is just so severe it become very hard to take. my pm is wonderful and we are working on it but its a rough go. I did move after my husband left over veryclose to my family and it certainly helps we are all very close.
I can hardly lift my self out ofbed in the am the pain is excruciating. thats new i dread am. I should post and see if anyone else is developing that, i have so much pain in neck shoulder back legs, that its hurts too much to lift my self. Im afraid im headed towards some sort of assisted living. so yes it does have me down. and scared.
I dont know what this new type of pain is, it's year 7 maybe everyone is having it.
and of course financial problems. my ex is not sending enough money or on time.. that's hard

I would love to be back with dr. s but can not afford it. the 3-5 and 10 day outpatient infusions always lowered my pain. Maybe i will write him and see if he knows whats going on, its a good idea, thank you. Sandy thanks for caring and allowing me to go on like this. I was very moved by your concern. please dont worry , i'll make it. ok.its just too much pain right now. im sure my pm will get it worked out. sincerely dc

Just wanted to add, i have been to dr. k his infusions were too high for me and caused severe hallucuinations so he ended them after the first one.(and $2000.00) i tried him because he is closer, i am in orlando he is in tampa. i had the coma in germany in May- June of 2007.
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