Hello, I was wondering if anyone out there could maybe help me figure out how to control this pain and find out what the heck is going on with me? I have been dealing with a number of symptoms for a little over a year now and today was the first day that anyone even came close to figuring out what was wrong, which the Physical Therapist that the Pain Clinic sent me to said that it was my L5-S1 area. I have been in excruciating pain for months and it just keeps getting worse everyday. Lately it is even hard for me to even get out of bed or walk the five feet to the bathroom. All I want is to play with my four-year-old daughter again, give her a bath, cook a meal, and just plain walk without severe pain.
The pain is in my lower back. The middle of the back down by my buttocks pops and then it really hurts. The pain goes across my whole lower back, down my right leg and then up my right side. I can't bend, stand for more than 30 min., sit for more than 30 min., walk, etc. without having to change positions or just plain scream or wince in pain. I have been on an array of different medications and seen so many different doctors. The one pain clinic just wrote me off as a drug addict whose pain was all in her head and all the rest so far have just passed me around, because all they were doing was looking at my GI area this whole time. Finally, a GI doctor told them that it was my back, not my GI area. Now they have me on Percocet 5/325 mg 1-2 every 6-8 hours max of 6 per day, Fentanyl patch 12 mcg one every 72 hours and Cymbalta 30 mg one at bedtime and these meds are still not working. I just keep being in more and more pain everyday and nobody is listening to me. They all just say that it is in my head and I am a drug addict and send me to a Psychologist. How do you get them to listen to you when you are in this much pain? Also, I have Extreme Rapid Transit, so ANYTHING I put in my mouth doesn't stay in my system very long; which is another thing they have a problem with, because anyone who has gone to a pain clinic knows we get pee tests and it is very rare that anything shows up in my system. I don't know anymore. I am starting to want to give up and just believe them that it is in my head. Thank you to anyone who is listening! Someone please give me some answers on what I should do for this pain and how to get the doctors to listen to me.
I agree with SpineAZ. You need to get to either on Orthopedic Spine Surgeon or a Neurosurgeon. Several years ago I got the run around from several different doctors because of neck pain, tingling in my hands and fingers and other symptoms. A variety of doctors told me that it was all in my head (this was with my history of being brutally beaten several years before). I finally went to a neurosurgeon, and he identified the problem. He removed a disc in my neck and took a piece of bone from my hip and propped it in the space.
I remember waking up in the hospital and crying because the pain, numbness and tingling was gone. Granted, I had to recover, and deal with the post op pain, but what a difference. I've never looked back with regrets.
Hang in there, the pain is not in your head. Unfortunally we've all been in your shoes. It still amazes me that when we're at our lowest point we have to be our own biggest advocate.
If I were you, I'd do some research and find the best teaching hospital around. I'd call them and get into their top doctor, be it a Neurosurgeon or Orthopedic Surgeon. I know it sounds like a shot in the dark, but I've found some great doctors this way.
Please keep us posted.
in all that you have stated here that you have been thru and the docs you have seen, did any of them EVER actually send you for an MRI of your back? that really would be the best way to see what the possible problems really are. it could be herniations, stenosis, spinal issues at the cord level even? if no one has yet done this one thing for you, it seriously needs doing at this point. you really cannot properly treat what you do not yet know you have in any given area really, but our spine/cord can have just sooo many different types of issues that can all cause their very own forms of really severe pain in some cases.
if you have not had the MRI done at all, ask to have whats called a 'contrasted' MRI done. that contrasting agent just really helps to better highlight certain areas and findings that can otherwise not be seen without it or really well? even your primary doc can and quite frankly should have done this one referred test for you by now. it would help alot to actually get this done BEFORE seeking out an actual specialist since they will send you for one anyways. it just saves alot of time and hassle. this MRI is just wayyy overdo at this point. marcia
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.
I agree with Marcia that an MRI, especially with contrast, is the gold standard for looking at your spine. I would definitely ask my PCP about this.
Please keep us posted on how you're doing.
Thank you to everyone for all of your advice, I really appreciate it. Well, I do have some good news. I started to see the Minocqua Pain Clinic and the doctor that I am now seeing listens to every word I say and she is sending me for an injection for the pain and has me on the right medications for pain for now. She is also going to send me to an Orthopaedic Surgeon and do the MRI. She has done more for me in two appointments than any other doctor in over a year. I am so greatful that I finally found her and someone answered my prayers. I am now feeling better in just a day, well in alot less pain anyway and I feel like a great weight has been lifted off my shoulders. I agree that when we feel our worst that we have to be our own advocates and it just isn't right.
I saw a post about patients and how they get called guilty with pain medication before they are even examined due to age, history or just plain anything. The post from the one who said something about the abuse history, I totally sympathize with you. That is the same thing that happened to me. Since, my parent was an alcoholic/drug addict I was and just because my ex-husband beat me I was a drug seeker. I hate how they label you before they even know anything about you as a person really.
Again, Thank you so much!
Last edited by moderator2; 01-05-2010 at 08:53 PM.
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Glad to see you have a good pain management doctor in minocqua. We'd love to move back to northern Wisconsin (lived in Wausau before) and didn't know if I'd find good pain management but it sounds like I can!
Thank you. Yes, Northern Wisconsin is wonderful; it is so beautiful up here. If I could make a suggestion to you though; I wouldn't go to the Wausau Pain Clinic, they are the one's I had for the year that nothing was being done and telling me I was a drug seeker. If you would like to take this advice great; if not, good luck to you and hopefully you will have better luck than I did. I would reccommend Minocqua to anyone that asks me, especially Dr. Michelle Bensen.
Again, Thank You and I hope you are doing well