This is more of an introduction than a question. My name is Heather and I am 44, and I just recently found this site and thought that maybe being able to talk to people with similar problems might help with the isolation that I feel. It is very hard for someone who has never gone through this kind of pain to understand exactly what I feel like day to day.
I had my first back surgery (laminictomy L4-L5) in early 2002. Prior to this surgery I had terrible constant back pain and severe numbness in both legs, which began innocently enough in early 2001 and gradually increased, before I gave in and finally let my husband drag me to see a surgeon. The surgery helped briefly - maybe for 8 months. After that, the surgeon suggested a fusion at the same site. That was in Nov. 2003. After a 9 month recovery from that surgery, I was actually in more pain than before. Constant, stabbing, burning in low back and burning pain radiating down legs with numbness in both feet and legs. This surgeon basically brushed me off, saying that there was no way that after his two surgeries, I should still be feeling any pain and that maybe I should seek psychiatric help. I knew that something was just not right with my back, and it wasn't in my head!
Went to another neurologist who suggested pain management. He recommended a pain specialist and I then spent about 6 months in a pain management clinic associated with a hospital, where I had injections (steroid and epidural), tried a pain pump, and was put on a whole new medication regimen. When nothing seemed to work, they suggested a private pain management clinic that they had had very good results with. We started working with the new clinic and the first thing the Dr. did was change/increase all of my pain meds. Of course, I felt great for a while (a month or so at a time) but then the symptoms would return again, at which point the Dr. would increase everything. I began a three year process of bi-weekly to monthly appointments, where at each visit meds were either increased or changed out for stronger alternatives. Also went through countless epidural injections, steroid injections, nerve blocks, etc. At the point when I started blacking out due to the high doses of meds I was on, my husband took me to the Cleveland Clinic. They were much less helpful than we were hoping for and we ended up back home with no solutions. BTW, at my worst, the pain management Dr. had me on Opana Oxymorphone (40 mg/ 3 x day), Fentora ( 600 mcg 4-5 x day), Methadone, Neurontin (600 mg 4-5 x day), Norco, Oxycontin, Lyrica, Celebex, Valium, Cymbalta, Ambien, Percocet, and some I'm sure I'm forgetting (this was all at one time). All I can say is that the later part of those 3 years with that Dr. are a complete fog. There are events (holidays, trips, etc.) that I don't even remember due to the amount of meds I was on. I spent a full year coming off of all of that medication, part of it in rehab as by that point I was definitely addicted to several of the meds.
In the meantime, I was also diagnosed with Fibromyalgia and Reynaud's syndrome, as well as IBS.
We finally found a wonderful ortho surgeon in 2007 who did a whole series of x-rays, MRIs, myelograms, etc., only to discover that the first fusion from back in 2003 had healed crooked, putting pressure on nerves and contributing to the continuing pain. Don't ask me why none of the other doctors saw this, as I don't have an answer. There were certainly x-rays and MRIs taken prior to this that should have shown these findings. First step was to break and refuse original fusion correctly (L4-L5). That healed very well, only to be followed by the fusing of L5-S1 in 2008. Made it until mid-summer of this year when the pain really started returning again, at which point my surgeon decided that if the fusions were strong enough, the hardware could be removed as he believed it was causing a lot of my continuing pain. Also performed another laminectomy at L3-L4. I am at my 8 week mark since the surgery and while the surgical pain is still there (a lot of muscle and old scar tissue had to be cut through to get out all of the hardware), I think that once I am fully recovered (4-5 months per surgeon), I will finally be at a point where I will be able to get out of the house, drive myself around again, go visit my horses, walk my dogs, vacation with my husband - all with considerably less pain than I have felt in the last 9 years. Right now I am still on Oxycontin (20 mg 2x/day), Lyrica, Celebrex, Percocet, Valium, Trazadone and Norco. Hoping that at my next appointment (mid-Jan. 2011), I will be able to cut back on the pain meds even more. I know that many people have conditions that are far worse than mine, and I am thankful every day (well, after quite a lot of complaining and bitching) that at least there is a light at the end of the tunnel and that with luck, I will be able to live a much more normal life very soon. I have spent the better part of the last 10 years at an 8 to 10 out of 10 on the pain scale, and would be completely happy if I could get down to a comfortable 3 or 4.
If you have made it through this novel, thank you for listening. It has been a very rough 10 years, resulting in the fact that I am no longer able to work and have had a very strained marriage at many points. Things are looking so much better now - I just hope and pray that they continue on that path. I also hope that if any part of my story may help someone else, it will make it easier to bear.
Thank you for sharing your story. It truly touched my heart! Sorry you have had such a horrible process to go through. It angers me that when doctors don't have an answer they quickly turn to "it must be in your head".
I pray that you gain the control you need over your pain soon! Pain is debilitating in soo many ways. I am very happy for you that you have found a doctor that listens. Positive thoughts and healing energy sent your way!
Hello redmollie, and Welcome to The Chronic Pain Couch,
Let me start by saying Bless Your Heart and I am so sorry you have had so many years of suffering with Chronic Pain. I can certainly understand why your last few years were spent in a fog and that you couldn't remember holidays, or trips taken. I'm surprised with the amount of medication he had you on, all at the same time, that you weren't comatose and having to be packed around, or worse.
I'm aware that with Chronic Pain you might need your dosages adjusted from time to time because your body builds up a tolerance to them requiring more medication to achieve the same effect or be changed to a different medication because the ones you are taking are no longer working for you. By being on all those medications at the same time it could have been very dangerous for you, your family, and could have caused severe issues with your kidneys, and liver as well by having to metabolize it all. Was the Pain Pump you tried an Implanted Pain Pump, or a PCA pump?
As far as having to deal with doctors who wouldn't listen to you and were telling you that your pain is all in your head, I'm very sorry for that as well. Unfortunately, a lot of us here too, myself included, while living with Chronic Pain, have been told that at one time or another by a doctor. That is something that has Always personally both confused and angered me. I've never been able to figure out why, when you initially go to a doctor and say that you are in pain, they are aware, you are in fact, in pain, and are ready and willing to try to help, by giving medications, ordering therapy, doing surgery, etc. Your Diagnoses from that Doc that was being billed to your insurance company was most likely Pain, or Chronic Pain Related to (whatever the cause may have been).
After they prescribe the treatment or do the surgery, sometimes for months, why do some of them then change when the treatment or surgery fails to work and tell the patient the pain is Now all in their head? In my opinion, If it's wasn't in your head initially, then it's not in your head now. Why don't they just admit that they have extinguished all THEIR possible avenues and refer you to someone different who may be able to offer other solutions that may help control your Pain. But No, instead of admitting defeat some choose to make the Patient feel small, belittled, and ashamed by not benefiting from the treatments given, and then when the patient is financially broke, beaten down from the pain and ridicule, they then inform the patient that they believe they are also Crazy. It just makes no sense.
I'm sending out this message for any doc out there, who has ever said that "It's All In A Patient's Head." After you have prescribed treatment for pain, performed surgery to relieve pain, and have received payment for months on end based on that Pain Diagnoses. FYI- It is Not All In Our Heads, We Are In Pain, but if you still disagree please send a full refund.
Hun, I'm so happy that YOU have now found a doctor who is willing to listen to you. You deserve nothing less. Hopefully, this doctor can figure out something that will help control your pain, and get you off some of those medications. That way you can get Your life back and not have to decide whether to choose to walk around suffering in Severe Pain Constantly, or not remember walking around at all.
Again, Welcome to The Chronic Pain Couch. We Are Here For You.
Good Luck and God Bless Brenda
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