Chronic Pain

My name is Theresa and I discovered the power over pain site today and was very interested in your story. It is similar to mine and I would really like to talk with you about our issues. I can tell you the short version of my story as I am sure you will completely understand without the long version.
First of all, I am a 43 year old women with a beautiful 3 year old daughter that I take care of myself as I am separated from my husband for the last year and half. I had lumbar surgery with a discectomy and fusion in Jan. 07. Three months after my surgery I noticed a lot of pain, tingling and numbness in my legs while at a post op appt with my surgeon I told him about my symptoms and he told me that it was part of the healing process from my surgery. Ok, not being a surgeon I went with it. Well, after 3 more months passed and my legs were progressively getting worse and I was in more pain than I was after waking up from surgery common sense told me that this was NOT part of the healing process. I went to see him again and explained to him that this was way worse and I didn't feel it part of the "Healing" process he tried to tell me still that it was, I stood my ground and told him that I needed to see someone else. At this point I was on more pain pills than I was after my surgery. I went to see a neurologist the he recommended who tried to tell me the same thing or that I possibly had Restless Leg Syndrome. Well needless to say I wasn't buying the "healing process" part of her story but perhaps the RLS had something to do with it. I immediately went home and did the Google search and read everything I could find on RLS. To my surprise, I didn't have 1 symptom of this RLS. At this point almost a year had passed from my surgery and I was developing more symptoms that were more severe to the point that I could barely walk. I spent the next year researching, seeing Doctors, going to a Pain Management Dr. still not getting answers to what was wrong with my legs. However, I am a pro at this point with doing MRI's, CTscans, Injections, Spinal Taps, etc....My body at this point is at lethal doses of pain meds, anti -convulsions, and whatever else they were pumping into me that do NOT work. As you can imagine I’m sure my depression level was so bad that I had actually got to the point of writing letters to all my family members and actually planning how to fall asleep and never wake up again. On another note on Aug of 07 my husband left me with a 3 year old because as he says he couldn't handle this "thing" with my legs which I am positive to this day he still believes it is all in my head. I have even laid many nights awake wondering if this "thing" is all in my head, after all I had been to at least 10 different doctors at this point all telling me either it is part of my healing process or they have no idea what is wrong.
In Sept of 07 I found a Pain Management Dr that seemed to be extremely hopeful in figuring out what the heck was wrong with my legs. For the first time in a year I actually had hope again in figuring out what was wrong. She set me up on 12, yes 12 different kinds of medications. I was freaking out and thought for sure this many meds was going to kill me for sure. She assured me that they were NOT going to kill me as long as I followed her instructions to the T. Ok so for the next couple of months of taking these I had probably 10% less relief which is actually a lot considering the amount of pain I was in. BUT...it wasn't' enough, I still couldn't function a quarter of what I used to and keep in mind I have an extremely energetic 3 year old that doesn't understand why mommy can't play with her, give her a bath, or even make it to the store to buy her a little toy. So, 2 month after seeing her she put me on Morphine along with other meds. MORPHINE? Ok I’m scared to death now. I am now taking Morphine and still have NO idea what is wrong with my legs. I hesitantly took the morphine and 2 weeks after starting it I did get some pretty good relief, I was very excited, and could actually function physically as I did before, but...........the mental part was a huge problem. I couldn't even think, see, or focus on anything.
Then about the third week I started to swell up like a balloon, I called my PM dr. and told her what was happening and I immediately had to stop taking it as I was having a reaction between that and the anti-convulsion I was taking. So, now we are back to square one with meds and still not knowing what is wrong with my legs. So once again I am back to finding different doctors to find out what is wrong, I have spent the rest of my time pretty much doing nothing. I could no longer work which raised a huge issue a single parent, I went from making $80,000 a year to state disability which was less than half of what I was making. I have applied for SSI and to date still have not received anything.
Last January, my state disability ran out and now I am in a situation that nobody wants to be I am going to be homeless with a 3 year old.
I did get some hopeful news I finally after 8 months of waiting got an appointment with a Dr. at UCSF. I was feeling very hopeful again that I would finally get some answers as to what was wrong with me.
I finally had to face facts that I was no longer going to be able to stay in my apt and had to move back in with my mother. This was something I did NOT want to do by choice, even though she had been a great support in the last few months, her and I don’t have the best relationship and never have. But my choices were nil. I tried to get help from welfare but of course they just didn’t have the resources that could keep me in my apt. I moved in with her and her boyfriend in Feb. 08, times were hard there; she has completely different parenting ideas then me and was very mean to Hanna and me. I would spend many days in my room just crying, again wishing that this rollercoaster I was on would let me off. I again thought about taking those pills and going away. Then I would look at Hanna and know if my heart that I could not do this to her. I could not let her grow up and think that I didn’t love her and knowing in my heart that she would not remember me as she is too young. So I would pull myself together and gather whatever strength I had and make it through another hour of my life. The hardest part of staying with my mother was knowing that I had to do whatever she said. Here I am 43 years old and feeling like a 5 year old that was going to get in trouble any minute. I remember one night Hanna was up late and having a fit in the room. I kept trying to tell her to be quiet as she was going to wake up everyone but the fact that she is 3 I don’t need to say anymore. All of the sudden the door came flying open and her comes my mom just grabbing her up off the bed like she was a rag doll and screaming at her telling her to shut the **** up and that she was a spoiled little ***** and spanking her then throwing her back on the bed. I remember seeing the horror in Hanna’s eyes. I remember feeling so helpless as this is what my life has become. I couldn’t say anything,, I couldn’t do anything, she would throw us out and then where would we go. I had to let my little angel endure the pain of that because I could not take care of her. I laid there for the rest of the night and just cried for her and for me.
We got the news in April that we had 1 more month to stay there and we had to move. My mom’s boyfriend was kicking us all out including my mom. I prayed everyday that my SSI would start and all would be fine. Needless to say that did not happen, May 1st came and I had now where to go. NOW WHAT? I had spent the month of April calling, searching, and begging, for somewhere to go. I ended up at one of my mom’s friend’s house. I had a week there; she was kind enough to let us stay there for the first week of May as I finally was going to see this Doctor at UCSF.
I met with Dr. Cuneo at UCSF he is a Neurologist. He took down my story asked me what seemed to be a million questions and then did a physical exam that was the most complete exam I had since I started all of this. I was amazed at how thorough he was. I was feeling that little light of hope coming on again, maybe after 3 years of hell I was going to actually find out what was wrong with me. After an hour of him examining me we finally got to sit and talk about his thoughts. One of the things I was so afraid of was that I had MS. I had been searching on line as usual and came across the site and was amazed that out of 13 symptoms I had 12 of them. After 3 years of searching or what my mom called “self diagnosing” I was relieved to hear that I did not have MS. Ok, so what is it. I was ready to hear. I had waited for the 8 months to see this fantastic doctor, to finally know what is wrong so we can fix it and I would be able to have my life back. Yes I had all my eggs in his basket and he was going to pull out some simple diagnosis that we had just all over looked for 3 years. Well, my heart sank when he to said he wasn’t sure yet what was wrong and wanted to run some more tests. After, my first initial shock of hearing this I realized that he said something that NOT one Dr. said to me in the last 3 years…”he said he wasn’t sure” well then there is hope. I ended up having another MRI and and EMG the following week. I was told that he would call me when he had the results.
So, back to my living situation. I had thought that Sandy was going to let me stay there for longer than a week. The way she talked and the conversations we had made me feel like all was good and she was going to let Hanna and I stay until my SSI kicked in. Which after numerous calls to them, was going to happen any day. I remember waking up on Thursday morning and getting some coffee when Sandy just so calmly told me Hanna and I needed to go. That she had only agreed to 1 week of us staying there. I seriously almost pinched myself to see if I was awake. I looked at her and just said OK. That was all that I could get out of my mouth and I walked back into the bedroom. Well the only step left was to stay in a motel until I could get my SSI. Good news on that (if you want to call it that) is that the state program here would pay for 2 weeks of my stay there. Ok, that will work and when I got there, OMG did I have a surprise. This was the worst motel flee bag place which actually housed prostitutes and drug dealers. Well at least my door locked. I listened all night to people yelling and selling drugs. I just stayed put and kept my windows, doors and curtains closed. Hanna and I just hung out in the room for the 2 weeks we had. When that was up I had my eldest daughter pay for another 2 weeks and during that time LUCK at sprung. I finally got my SSI with a huge retro check. Happy days again for my living situation. The first thing I did was got the heck out of there. I did go and stay in a Hotel closer to my home town where I knew I was going to set up house again. We stayed there a couple weeks when I finally found a nice home to live in.
We are all settled in now and Im still pursing another PM Dr as I had to leave my other one due to insurance changes. Well that is my story to date and as I read it over I still have to pause and breath as I can’t believe what I have gone through and still go through trying to figure out this mess. I can’t believe that the technology we have today and still nobody can fix this or at least make me a little less pain free.
Thanks for taking the time to read this and if you ever feel at your lowest please remember that there is always someone out that that is experiencing at least a little of what you are feeling
God Bless

This message has been edited. Last edited by: Karen Lee Richards,