Greetings. My name is Nicki and I have been living with Chronic back pain for four years now. This is my story.
First off I should say I am writing this more for myself than for anyone whom might take the time to read it. It is perhaps a reminder of what I have been through and a refreshing start that I should not yet, give up hope to be without pain.
I consider myself lucky to have a husband whom fully supports me and my children and understands that I am in pain, even though it's not physically visible to the naked eye. Without him, I would probably be on the streets as I can not work to support myself. It is a sad fact, but true and I have come to accept it.
My joints have always been loose. Some glorify this saying they are "double jointed" but it really is a curse. At any moment a joint can pop out of place and send you falling to the floor in wretched pain which takes months to tighten up and heal.
My joint problems caused from birth defects are combatted with braces of various sorts on each joint that likes to tumble out of place frequently and lots of physical therapy to keep the muscles tight and strong around those joints to help prevent them from slipping.
But a whole new kind of pain entered my life after the birth of my second child.
Because of my life-long battle with my joints, I was a semi-athlete, keeping physically fit. But uterine problems caused me to miscarry seven children before I finally became pregnant with my first surviving child. Because of the high risk, I was put on bed rest in the first two weeks of pregnancy and remained so until giving birth 6 weeks early to a healthy baby girl.
The strain was great on my body and relapsed me three years to get back to health where I could walk steadily again. But after five years I was back on the treadmill six days a week and working full time at a strenuous factory job.
It took nine years before I was able to become pregnant again and the doctors were surprised that I had become pregnant at all. This time, they let me work (a much less strenuous job) for the first three months of my pregnancy before my body tried to miscarry and I was returned to bedrest until giving birth.
Happily enough, this time I was moving around within days after pregnancy and able to walk with braces on both legs and able to hold my child with braces on my wrists and elbows which I was unable to do with my first child.
Everything seemed to be fine until 3 weeks after my son's birth. I was at home alone with him, an exhausted new mother, and reached down into his crib to lift him up to me. I had never had any kind of back pain before in my life and I felt an odd twinge and fell to the floor, both legs giving out from underneath me.
Luckily, the baby fell on top of me and I held him close to my chest while I howled in pain feeling a sharp, throbbing nastiness I had never experienced before. I could say it was comparable to hard labor and I could not move either leg!
I laid there on the floor for four hours with my poor baby crying in my arms until the neighbor came by unexpectedly to bring me some pizza for lunch and heard me screaming from upstairs for help. She called my husband and he came home immediately to take me to the ER and leave the baby with my parents.
At the ER, they gave me lots of morphine and delaudid and scheduled an appointment with my regular doctor, sending me on my way with a bottle of vicodin and crutches (which were of no help since I'm not a stilt professional).
My regular doctor set me up with an MRI and an appointment with the pain clinic, physical therapy and a psychiatrist. She also gave me a handicapped sticker and a wheelchair so I could get around easier.
Little did I know, it was the beginning of a nightmare. My husband and I weren't married yet, so I had no insurence and ended up on medicaid after all the paperwork was filled out because I could not return to work.
For a full year I fought with doctors to accept my insurance and run the proper tests to get me treatment and find out why I couldn't walk. For a year someone was with me around the clock to take me to and from the bathroom, bathe me, watch for bedsores..and take me back and forth to appointments every other day.
It took a year before I could get into the pain clinic and only after my husband and I were married (in our bed in the living room of our house)and I was put on his insurance.
Well I thought that was the answer. I thought I was finally going to get the help I needed since physical therapy didn't work, vicodin and valium wasn't working and it wasn't mental according to my therapist.
The pain specialist told me I was her youngest patient and she was going to get me back on my feet. She set me up with more physical therapy, a TENS unit, actupuncture therapy and cortizone shots. On top of that, she also kept upping my pain medication. By the end of it, I was on 200mg Fentanyl patches, valium and percocet within 6 months.
The physical therapy did not work. It only worsened the pain. The cortizone injections worked well, for a week or two and then back to square one. the TENS unit helped so little that it wasn't worth putting on my back. Actupuncture did nothing but aggravate my skin condition and cause ezema to break out all over my back.
I was all of useless to the world at this point. I could not walk, I slept almost all the time. When I was awake, I was unaware of what was going on around me, only the pain I felt hoping that the drugs would knock me out so I could get some kind of relief from it.
It had been a year and a half since I fell and I woke up one day from withdrawals from the fentanyl (the patch had fell off of my skin and stuck to my blanket) and looked around me, not even recognizing where I was. I called to my husband and he sleepily came to investigate what was wrong with his poor new wife now. I told him I was done with the drugs. The pain is still there and I want to know who I am again.
So he called into work for the next three days and sat with me (his mother being a crisis councelor helped him deal with me) while I went through withdrawals that would have killed a weaker person. Two weeks later I called my pain doctor and told her I was no longer going to take any medications, but would continue the cortizone shots and she got pissed and said I could not be her patient anymore for refusing treatment.
So I called my family doctor and told her I was off the medication (which she was happy about) but she could not renew my handicapped sticker because the pain clinic doctor had already contacted her and told her I refused treatment.
And yes, we looked into a law suit..but I signed that piece of paper entering into the clinic so she could pretty much do whatever she wanted. She denied to fill out the paperwork for my temporary disability claim stating I was refusing treatment.
Then I gave up on doctors.
I had started to accept that I would be in a wheel chair and in pain for the rest of my life but my husband wasn't through fighting yet. He took me to my first chiropractor. At first, it was so painful that I was crying after each adjustment, going in twice a week. But after 3 weeks, I was able to walk to the bathroom by myself!
It took 6 months, but I was up walking again, with braces on my legs, only using the wheelchair when I had to walk more than a few hundred feet. The crutches were coming in handy now and soon I was only using a cane.
That brings us pretty close to today. I am still in pain everyday, unable to reach down to the floor, unable to stand up straight most of the time. Sitting causes pain, laying down causes pain, walking eases it some until I've walked too far. I can only ride my exercise bike for twenty minutes and then have to shift endlessly on the couch or bed for hours before being able to walk again.
the MRI's show 3 bulged discs and a torn miniscus, little DDD and a slight scoliosis. They still say that there isn't anything on the MRI or x-rays that explain my back pain and there's nothing they can do for it.
I haven't been to a doctor for my back in over a year, only a chiropractor but now the chiropractor is telling me I need to see a doctor. I guess I will give it another try. I am so tired of being in pain and tired of having to ask for help to do anything (even laundry, loading the dishwasher, sweeping the floor).
I have moved from Michigan to South Carolina so maybe the doctors down here will help me. I am apprehensive about taking any kinds of medications that will alter my mind-state as I have been kicked out of college because of the last round of mind-numbing medications that caused me to fail three semesters in a row. (two of which i don't even remember being enrolled in!)
I have just started researching "nyropothy" and think possibly that's what's wrong..some kind of nerve damage or disorder to cause this, which was probably an injury ignored for entirely too long and now has done damage.
I am open to suggestions of what I can research. I have already inquired about an appointment with the spine health doctor here in greenville.
I guess it's just a waiting game now. I've got time to do it. I've already spent years of my life doing it. I'm not getting my hopes up, but I'm not expecting the magic answer to come out of this either.
I guess I just want to let all of you know, that you are not alone. Back pain is invisible to those around us, but we know what you're going through. Keep your chin up! Life gives some of us different challenges than others, and ours is overcoming pain!