How do you all address your pain management needs not being met? I have 2 spinal cord stimulators. Therefore I shouldn't have pain, right? Well I have horrible burning in both the right and left incision in each hip. My crps burning and tingling is in both feet now. I don't seem to have as many problems with upper body crps. I am currently being tested for ms due to extreme weakness and balance issues although reading has shown me these can be related to the crps worsening.

My question is this. How do you approach lack of pain management with your dr without them thinking you are after more drugs? I just want to not feel that crushing breakthrough pain. The only pain drug I am on is hydrocodone. I don't have an appointment until 6/13. Should I try to move it up or tough it out? I've never had to have the more pain conversation before. I always thought when I read scs caused spread, it meant to other areas NOT to make the areas already affected much worse!

Any help would be appreciated

TK

I sure understand your worry about your next appt. and what to say or do. Doctors need to listen when the breakthrough pain is too much. Hydrocodone isn't such a bad medication, there are many others that would offer you more relief.
Bring a pain journal as detailed as you can. I use a calander. I also bring my health care surrogate, when this dicussion takes place. Sometimes when another is in the room with you, you will be taken more seriously. They can back up what you are saying to your doctor. Ask for more help in a straight forward way. I hope you are seeing a bonified pain specialist. I see a doc. in the field of medicine called a physiatrist. She is a pain specialist first, and then tries to treat the whole person.
I really hope you can get more help. There is also a good link through google about how to talk to your pain specialist. It may be worth it to look it up and see what other advise can be learned. I will keep you in my thoughts and prayers. ginnie

Hey TK! So sorry you are having so much pain. As I am sure your doctor and rep told you, the SCS is not guaranteed to give 100% pain relief, the goal for them is a minimum of 50% pain reduction which is still pretty great. If you are not receiving effective coverage or are having discomfort with the stimulation, you need to schedule a reprogramming session right away. I would also call your doctor and move your appt up, there is no need to continue suffering this much. If this dr is not taking your pain seriously, then you need to find another dr. Your dr needs to also check those incision sites to make sure there is not infection or something else going on there.

You are in my prayers!
Nanc

If your able I would try to get an earlier appt. and really let your doctor know that your pain isnt being controlled. I know your worries as I went through it too. I had the lower body SCS they didnt want to do the upper body worring they would make things worse. My SCS helped my pain for 3 months then it was like my pain went around it and my incisions also burned. I had to tell my doctor I needed my meds in higher doses and I explained the pain and everything I was going through so he did up it but even that didnt keep me out of the er I was with that doctor for 2 years until I met a doctor closer to my house who was head of pallitive care at the hospital and he saw the meds I was on and switched some things around, added some, got rid of others, it was hard finding the right amount and the right mix but he did succeed and I went from being on crutches and not whereing shoes, to now walking and having more of a life. I know the worries as I have seen doctors who think your just asking for more but hopfully yours isnt like that. SCS arent 100% going to work for everyone and for some end up not working at all, like mine. We all respond to different treatments.
The burning you have on the incsions is it just around them or is it pretty wide spread. When my burns I use lidoderm patches which numbs the area and that helps so much. I now carry patches everywhere I go just incase I bump myself or get injured in anyway so they quickly numb the area to try and keep me out of the ERs.
How long have you had the SCS's have they tried re-adjusting the settings to try a different sensation to see if it make a difference? I am so sorry your having so much pain and I hope you can get some relief soon. Are you able to check your blood pressure and pulse that was another way I was able to prove I wasnt just wanting the drugs, they saw how tachi I was with high BP and pulse that they knew I was really in lots of pain.

Sam