I will have to update this post over several times bc so much new stuff is going on & I have really not been feeling well at all!!!! Was at hospital last night getting fluids & lots of i.v. meds & some tests. They tore me up doing the tests (moved my arm around alot & I was shaking like a seizure after the tests). I was so dehydrated that they had to start the i.v. on my shoulder bc I had no veins they could use. They said I waited way too long to come in. I throw up several times a day for about 7 months now. But, last 3 or so days have been rediculous. Been vomiting over 20 times a day & cant keep down food, fluids, or meds. This is from the gastroparesis. Nausea meds arent working & they want me to get a gastric pacemaker. Not sure if I am going to or not.
Have seen 2 new pain doctors last week & one old pain doc that I hadnt seen in awhile. My old pain mgmt doc did every treatment there is & nothing worked. When I was in hospital in June for all the passing out, they told me I really needed to get back in with him. Treatment wise, only idea he had was to get a BRAIN stimulator. He said its like a spinal cord stimulator (made my pain worse), but in your brain with a lead running to your chest. Medication wise, he had several different options for me. First options was for me to discontinue ALL my meds (oxy er, oxy ir, dilaudid, xanax, 2 psych meds, ambien, soma, vitamin d, etc). He said that my meds could be making the gastroparesis worse. He had no comment when I asked him about all the issues that would come from me not having my meds. Bet he doesnt want the phone call when my pain & bipolar disorder are out of control!!! 2nd option...take a drug holiday & quit all my meds temporarily in the hope that when I start taking them again I can take a lower dosage. 3rd option...Take a higher dose of the Oxy ER & take the Oxy IR less. With option 1 or 2 I would have to detox from my pain meds. The doctor said that it would not be pretty at all since I have been on such high doses for so long. He recommended getting sedated (intibated & all) for around 4 days so that the withdrawals would happen under sedation. Another option would be to take a med like Suboxone that is used for opiate addicts. Another option was to go to a detox clinic & do it the slow way. I have not accepted any of these treatments. I just told him I would think about it all & get back to him.
1st new pain mgment doctor appointment was pretty uneventful. He basically looked all my records & said that I had tried everything he would recommend & that he mainly does blocks & procedures so I didnt make a follow up appointment with him.
2nd new pain mgmt doc appt. was a little more helpful. I actually really liked him & I am going to keep seeing him. Super sweet staff & well run office. The doctor is very knowledgable about RSD. He had brochures in the waiting room & he listed RSD as one of the issues he deals with. I was very surprised about how much he knew. He does alot of procedures but also does alot of long term follow ups with patients. He looked at my chart & agreed with last doctor that no procedures or treatments would work for me. He said I had tried them all & that re-trying them would be pointless bc past a year it has been too long. So, for now we are gonna try changing around my meds. He also said he would help me with the nausea once we changed the pain meds. One thing at a time. We went through all the med options like I did with my old ain doc. He didnt recommend quitting any of the meds. We may try the drug holiday, but are gonna try something else first since that would require a major detox. We are going to quit my Dilaudid. Also, we are switching the Oxy ER to Opana ER & switch the Oxy IR to Opana IR. It is worth a try I guess. Besides methadone & Fentanyl this is the only pain med I can think I have not tried. Mehadone I dont want the dental problems & with the Fentanyl patches I am very sensitive to adhesive. So, tey are not really options. He said the Opana may be a little easier on my stomach & that my body is too used to the Oxy so we need to switch it up & see how my pain is. My insurance denied the Opana so I am appealing it now. So, I guess we will see if I am gonna be able to take it or not. Problem is... he said that with switching from Oxy to Opana that I will have to detox & go through withdrawals. He said they will be severe & that he may have to hospitalize me & have me deeply sedated. We are just gonna play it by ear. Not looking forward to it...supposed to make the switch in a few days once I find out about the insurance coverage.
Anyways, alot of new stuff is going on & its hard to think where to start to tell you. So let me know if you have any questions or comments.

I'm so sorry to hear that your crps isn't under control. I was in a similar situation in May of this year as my pain managment dr of 4 yrs released me when my pain levels wear unbearable and I lost all my functionality again but this time from the crps symptoms increasing.
I too had a visit with a new pm Dr and the first visit he said we have done everything we can do and that I needed to accept my situation and get used to all the meds... Then the 2nd visit (like 2 weeks later) he said that he recommended removing all my meds. I think their are alot of pm clinics that only treat minor pain issues and that is why we get the run around half the time.
However, at that time I would have welcomed death and my pain meds were not helping fight the pain like they use too. I tried for an entire year to find a medication regime and by the end I was on 50mcg of fentanyl, 60 IR oxycodone, and percocet as needed and I was still miserable so I thought why not try to get rid of these meds? But surely I would need a replacement treatment so I did the 5 day outpatient high dose ketamine before the detox process.
I just finished detoxifying off of everything (the patch was really hard as I was so sick from withdrawals.) My pain levels are Lower then what they were with the pain meds so maybe it is possible that these meds can make us worse when at such a high level. Now that I'm detoxed we plan on re-introducing a couple of Norcos per day and that starts tomorrow. This disease is a crazy hard disease to fight and I was never so mad as I was when I was withdrawing because it was literally like withdrawing from heroine and not one dr had warned me that I would get so sick. I hope to never go back to the high doses of narcotics but honestly I will do anything if there is the slightest chance of it helping with the pain and in my case I really do feel so much relief.
Sarah

Hi Firegirl,
Wow you are going through a mess and my heart hurts for you and your pain. Hang in there though. You have to take control of it all as you can see you will go from doctor to doctor trying to figure things out and only getting frustrated. Be proactive in everything. I have to say first off that after seeing the meds you are taking I am amazed that you have any stomach left at all. One other thing about Fentanyl is that you will definately get the teeth problems on that. I was on it for over five years and have terrible teeth problems. The less meds you can take the better off you will be is my motto. I had ketamine inpatient 5 days in Sept 2010 which turned into a nightmare (ketamine was scary and worked well but ICU was a mess but that is another email). After being on everything under the sun pain meds wide my body shut down. I went off Fentanyl cold turkey and it almost killed me. Make the doctor give you something to wean you off instead of cold turkey. I agree with death being better than what I went through. Horrible stuff. BUT I did it (lost 12 lbs in two weeks). I have since then gotten off all opiates since Feb 2011 (Yeah) and use Ambien to sleep (but I hope to be off that soon too). Since Oct 2010 I have been getting IV's every two weeks (and now three weeks) of natural vitamins and trace minerals. I swear it is the only thing that has helped me. I was soooo dehydrated after the ketamine and with all the meds I could not take anything. I have talked to others in the office and they are seeing miracles happening to them while only using iv vitamins.

I was on Oxycontin for over a year too and decided that was not good for my body. I did get off of it myself and just weaned myself off of them slowly. I had about a week of headaches and felt like crap but it was worth it to be off of it. You have to be positive and you have to be the one to make the decision to get off the meds. It is hard to do but you can do it. I prayed alot and I mean alot during the time because it was horrible. I will try my hardest not to ever take any meds again esp pain meds. I have been exercising and I still have pain and lots of burning pain before weather changes but my mind is clearer now...still have dizziness problems but even that is getting better slowly. After being off all the meds I can now see how they have really taken a toll on my body physically. Ketamine even changed my skin and hair! Best of luck to you and do what you feel in your gut is the best thing for you. It is very easy for someone that has not taken pain medication to say "Just get off of them" or "detox." It is a serious process and requires alot of you both physically and mentally. I hope I helped you out. Let us know how your are doing.

Sarah--great job detoxing off the meds!! Fentanyl is 30% stronger than Heroin. I feel less pain now too and have noticed when I even take a half Tylenol or my Ambien that my burning pain increases. Does this happen to you too now that you are off the meds? Just curious.

With this rsd mess...we all just have to do whatever gets us through the day in order to survive. Rsd affects every aspect of our lives so if we can make one part of it easy then go for it I say. Take care all!
kathy d

Had a doctor take me off my pain meds back in 2008. I ended up getting back on them. My body is extremely sensitive to the detox process. He weaned me slowly over 2 1/2 months and I still went through horrible withdrawals. So, I am not looking forward to this. Last time I detoxed, I passed out in shower and hit my foot on the drain & thats all it took for RSD to spread to my foot. May have had something to do with fact that my body was so on edge at that time...who knows.

Hi I am so sorry for all you are going through. I know medical tests are draining mentally and physically. On top of painful. I did not go through detox as I never was on meds like stated but I know at the Cleveland Clinic people did. It was hard but some in the long run actually felt better. I hope that is the case that you will in the long run feel better. I have never heard the brain stimulator. Did you ask if that could make you worse like the scs and if so then what? I always ask my pain doctor or who ever who states a procedure that lets say it makes the rsd worse cause that has happened in the past to me what will be in place to keep me as comfortable as possible and also the next step in treatment. For me it helps to make a choice. Just a thought for you. I think some teen with rsd on the boards has a pacemaker for her stomach. The mom posts here. I am sorry if I am confused but that is ringing a bell. Did they mention that maybe you have rsd in your stomach? I am sorry I could not help more. I remember when I went to 1 pain doctor he suggested 1 treatment so I went for another opinion who suggested another treatment so I went for a 3rd and yet another different treatment was suggested. I had no idea what to do and it seems you have a lot of choices to make in the similar. I feel like we need to go to med school for our treatment. Feel better

So sorry Firegirl for all of your stomach issues. Sounds like an absolute nightmare. Getting off heavy meds (in my case - Fentanyl), was really hard for me, I had a script for Suboxone for 3-4 weeks. I could have used it for much longer. But it definitely worked well while I was on it. Suboxone also works for pain. I am SOOOO happy to be off the meds...

You have to do what you are comfortable with, because whatever you decide you need to be vested in.

Has anyone discussed ketamine infusions with you? They have changed my life. I am not all the way better, but much better off than I was before.

Please take of yourself and keep in touch. The best of luck to you. xoxox Sandy

Firegirl, I am so sorry to hear of your continued struggles. You are in my thoughts and prayers as you decided what is the next best option for you. I am glad you have found a physician that is willing to work with you. Sometimes that is one of the biggest battles.

Thank you everyone for your replies!!!!! I recently have been seriously considering the ketamine infusions even though my docs dont think they will be effective. Also, there is nowhere around me to get them & its not practical to think that I would be able to travel back n forth that much to get them....not to mention Medicare wont cover them. Not completely ruling it out for future though.

You won't know if ketamine is effective unless you try it, how can your docs opine on whether or not it will work for you??? To my knowledge, ketamine has the highest success rate of any treatment out there for RSD. I had no one nearby that was administering ketamine when I started, I traveled 300 miles each way for my first 20 or infusions. Then someone nearby began offering it, so now I get it here in my homestate. And I am almost certain that Dr. Schwartzman's office accepts Medicare, if he does, others may also. So, my recommendation is for you to never give up trying to get it. It took me a really, really long time ....

I am not saying your doctors are like this but for me it seems the ones I have seen that don't do ketamine don't suggest it. One they would not be doing it and they don't have as much knowledge about it. As for traveling I think they are not done that often. Some can go 6 months or more without or then even longer. Feel better