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03/30/2012 10:57 PM

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nikkiz4381
nikkiz4381  
Posts: 23
Member

Hey all... thank you for all your advice. I guess I received your info through brains waves or our RSD connection lol I called the dr office and when she called me back she was completely understanding and said I did ok with telling her the truth and in no way should I ever be afraid to call with any questions/problems. She said the policy within the hospital pain management program I am to call if I run out of meds before my next appointment, of course within the appropriate time frame. She said she will write a script for the 10 mg for Mon to hold me over before I see her and then after she reveiws my journal (which she said I get a gold star for keeping) we will prob change my meds. I told her i am so obsessive with keeping track of my pain and any type of patterns (when and how often) I see in the flair ups that I wrote it down each day.

Thank you all for your comments and advice, it is so refreshing to be able to talk about this with people who get it. I did sign the agreement and want to make sure I do not do anything to jepordize my treatments. I realize these meds are dangerous to play around with and people abusing them are PART of the reason the rules are so strick. Even though it sometimes is frustrating with how strick, I also feel better in a way that it is that way so I know I will be taken care of. I feel as if I am in good hands with this Dr and after the conversation I had with her I feel so much better with telling the truth and not getting into trouble for it. So I guess we shall see what changes are made..

Oh to the one comment, I DEFF know not to ask for certain meds or go to other sources SmileFrom now on I know I can not be afraid to call the Dr, thats her job and I need to fullfill my end of the agreement by trusting in her.

Oh another question.. she mentioned that there are other treatments we can go over more in detail, (nerveblock injections and ketamine injections) do any of you find that they help more than the pills? besides these meds, I am on 14 other medications through out the entire month for all my other lovely health issues, and would love to make the list get shorter rather than longer...

Thank you all again.. you really are fantastic people, and I thank god I found you guys! Smile

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03/30/2012 11:08 PM
maddiesgram
maddiesgram  
Posts: 2330
Senior Member

Hi Nikki,

That's great news that things worked out well! It does sound like you have a good doctor and they can be hard to find, so it's really a blessing.

I was the one who mentioned not to ask for a certain medication. I didn't mean it as an insult or anything, just trying to be helpful and when you just meet someone here in a few posts it's hard to know how much they already know. Since I don't know, have you had any nerve blocks? I can't remember if you've said before, but they are very "standard" for pain doctors to try. Sometimes they can be effective, we are all different. I had 3 early on and 2 later, but they didn't help me much. Ketamine is a different thing, though. They are doing infusions of ketamine for about 5 days and then doing booster infusions as needed. Some people have had very good results and have even gone into remission doing this. I would love to do it if I could but it can be expensive.

I hope you get a plan with your doctor that will really help you. Let us know, OK?

gail


03/31/2012 11:03 PM
nikkiz4381
nikkiz4381  
Posts: 23
Member

Oh please Gail no worries at all!!!! I am extremley hard to insult and by all means I can totally take any info given to me, good bad indifferent! Smile Thats one of two main reasons for being on here, getting info by people who know more than I do and of course giving/receiving support.. so please do not worry abt that at all.

I have not done any nerve blocking... she gave me the info pamphlets on them and said it may be something to look into down the road. I have alot of factors that must be considered becuase of all the different meds Im on. As I mentioned in a previous post, I have alot of different medical issues...not to be all pity party but just to give a long story short, I have a pituitary tumor in the brain, polycystic ovarian syndrom, majorly anemic and other vit deficancies, plus irratic blood pressure and anxiety/panic.. then of course RSD lol So as you can see, it was extremley important for me to see a GOOD dr who wont just give me whatever and hope it works out. I must be honest about my medications or god forbid, something could go wrong.

I will DEFF let you guys know... thank you again!

Nikki


04/01/2012 12:39 AM
maddiesgram
maddiesgram  
Posts: 2330
Senior Member

Nikki,

Oh my goodness, I feel so bad for you although I know you didn't mean for anyone to. Please know that this is a good group of people who will be here to support you as needed and don't hesitate to ask questions or even have a "pity party" if you need to. I've had a few on here! Sometimes things just become so overwhelming. I don't know if you've checked out the other groups on MDJunction, but maybe some of them could be helpful, too. The thing about RSD that's so hard is how few people know what it is and even choose to believe us about how bad it is. Having anything that others cannot understand feels especially hard to me. Anyway, you're very smart to be careful with the meds. and I'm glad you've found a good doctor.

Take good care of yourself!

gail


04/02/2012 12:03 AM
cindy61
cindy61  
Posts: 540
Member

It is very important not to take more then what the doctor says because he may stop giving you any meds. at all. He will think your pain is not real and you just want to get high. Now I am NOT saying you are doing this but doctors can lose their licience if they are caught just handing out perscriptions. When I told you what I was on I was not suggesting that you ask the doctor for that. You can tell him you know someone with RSD that is on that but doctors do not like to be told what to do. I have a great doctor and if I hear something new I will ask him about it but I let him decide what I take. If it does not work I just tell him nicely and ask him what does he think I should do.

Good luck, Cindy

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