the monster returned
 

well... i reached my 2 month mark of being pain and drug free the beginning of last week... and....... it came back...i started getting the lovely burning pain back in my left hand and wrist. thank god its not back in both arms and my foot, and is just in my hand and wrist. it isn't as intense as it was pre-ketamine infusion. i went to my pm right away and got some fentynol patches. i don't want to be taking ketamine orally while i'm in school full time- i need to be able to think clearly 24/7 in order to do well with a full load. the patches are helping. and when i'm able to afford having another ketamine infusion i will definately have another- i never reached the same state during the infusion as the doctor's other patients because of my tolerance so my dose will be increased from the first one i had. until then, i'm keeping my fingers crossed it doesn't spread. the doc in la that did the infusion wants me to call one of the docs he works with up here and see if he'll do some blocks and some other treatment on the nerves in my elbow until i'm able to get another infusion. i guess treat this as if i was getting rsd for the first time again.... try to stop it from getting worse before it does get worse. but ya. ... the last 2 months were amazing! and its still great for it to just be in my hand/wrist and at a lower intensity vs almost in every limb and raging.

Oh Andrea......I am SO very sorry to hear of your returning symptoms. You KNOW we were ALL rooting for you......so hoping that the last treatment would have been the end of your ordeal with this monster. Please know that my heart goes out to you. I am glad you are being so proactive about getting blocks and treatment right away. Hopefully it will not spread beyond where it has already begun again. Was that the site where it all originally started in the first place??

I applaud your determination to go to school in spite of your pain....including limiting your meds so that you have a clear mind. You have tremendous ambition and drive that will serve you well in your life, regardless of what path you choose in your career. You have so much to be proud of and we all rejoice with you in your success and grieve with you with your continued pain. Please keep us posted on how you're doing and what the doctors do to maintain what remission you still have. :hug:

hi Andrea,
 

I agree with MominPain. Go for the blocks. They may do what you want them to without going through the ketamine since at this point it is only in you hand and wrist. The blocks do work for a lot of people.

Have you tried the lidocaine patch. I wrapped them around my hand a lot of times at night. I used a heating pad to make them work faster. I couldn't do the fentenal patch.

I too am amazed at how well you are doing with your schooling. You are a very strong person to accomplish what you are doing with the RSD pain.

I hope that you can soon get it back into remission.

Ada

Well, I am sorry to read this post, girl. I was wondering why I haven't heard from you lately. I did notice a whole lot of positive here! I know what it is like to have a vacation from the pain and isn't it amazing to enjoy those days to the fullest!
It sounds like you are on top of the game here. Please keep me posted as to your progress. It was good to see a post from you, I have really been wondering where you were. But, not the answer I was looking for. I'll drop a pm or IM tonight.
I had such a hard time getting off those darn patches. But, they did help. All the best to you. Ill talk to you soon. Di

thank you for your support you guys.

Ada, ya i have had the lidocaine patches... they semi helped... although i think i got more annoyed with them then anything cause they never stuck very well to me, so i'd have to cut strips of them and tape them on with medical tape... which then would limit my use of my hand cause it was like being in a cast with some much tape! the little bit of relief they gave wasn't worth all the hassle. i have brought my heating pad out of the closet and have it ready plugged in by my bed so i can wrap my hand in it at night. although my cat gets very mad at me cause she's gotten smart and when she's cold she'll hop up on my bed and figure out where under my blankets the heating pad is and will sleep on it... then i come in and disrupt her slumber when i pull it out from under her... i get death looks from her for like an hour after!

:(

Andrea, dang I'm so sorry to read this.

Praying that you go into remission.

:hug: gentle hugs.

Hi Andrea,

I am a newby here but I just wanted to tell you that we have an apothecary here and PM anesthesiologist prescribed lidocaine,ketamine and something else with N as a gel 30/30/30 it worked somewhat on the painful senstations on the skin. It could only be put on 3X a day. I found in early stages it worked the best. was not covered by insurance and a little pricey. let me know if you want more info. I would be glad to get it for you. Good luck with your schooling, I hope you are able to nip the symptoms in the bud, take care

debbie

HI Andrea,
 

You might be right on the lidocaine patches. It probably depends on where the pain level is that they help. I wore 3 at a time for the longest time. They stuck ok for me.

As far as the heating pad. You may just need to get you another one and let your cat have her way on the old one. LOL

Ada

Just a reminder
 

I know you probably know this, but just a reminder....Keep the Fentanyl patches away from heat. It can be deadly, because it distributes the drugs too fast. Just a friendly reminder. I had the 100mg Fentanyl patches and removed them before getting in my hot tub. Just be safe. You know I care. Talk to you soon. Di

andrea

i am so sorry that the pain has come back i would try the blocks also and like di said be carefull with the heat and the fentanyl patchs . i hope that they are able to stop its from spreading or anything. it must of been great to be pain free for that long i dont remeber what it was like before rsd lol

carrie