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Switch to Forum Live View Calendar age: 37, Physical age: 97!
6 years ago  ::  Jan 24, 2008 - 8:35AM #1
macrinaguerrero
Posts: 1
In 2001, at age 31 I was diagnosed with a bulging disc.  Early 2002, I had a discectomy, or laminectomy.  I was fine for about six months.  Went back, and guess what?  The disc above was bulging.  The doc didn't want to do surgery, but wanted me to lose weight and then do an artificial disc replacement.  So, I lost a gob of weight.  Oops!  Now we discover bad discs throughout the entire spine, and osteoarthritis, and bone spurs, and hemangiomata, and stenosis, and spondylosis, and fibromyalgia, and myofascial pain syndrome, and chronic fatigue syndrome.  I'm allergic to all NSAIDs.  So, no toradol shots or naproxen sodium.  Once I develop inflammation, I have to let it dissipate naturally which takes days.  So, we do steroid injections, that last maybe two or three days.  Since I'm so young, they can't give me "good" pain meds because the pain management clinic is afraid I'll develop immunity and won't have anything to use when I'm older and the ailments progress. 
That aside, my pain doctor kept commenting on how incredible it was that I was still working.  Well, I didn't think there was an alternative.  As he upped my doses, I started making more and more mistakes at work.  So, I told him.  He arranged for me to work fewer hours.  Then, I started getting a tolerance to the meds, so he filed paperwork for me to take disability leave.  In order for this to happen, all sorts of tests had to be done and reviewed so my private disability insurance policy would pay.  Everything was approved.  My main pain doctor's associated was examining me one day, and he actually sat down, prayed with me, sang me an uplifting him, and had tears in his eyes because he told me he could never get my pain below a level 7.
A year and a half later, my pain doctor advises me that he now thinks I can work a sedentary position.  I WAS WORKING A SEDENTARY position and it became too much!  No new tests have been run!  I believe the insurance company paid him off.  By the time I am 65, they will have paid me over half a million dollars.  They don't want to do that!  Most people that take disability leave are out for a broken bone, or are out at an older age and it's not more than a handful of years till they are 65. 
So, I lost it!  I ranted and raved and pitched a hissy fit.  The doctor said my reaction was abnormal.  So, he sent me for a mental evaluation and refused to see me again unless I was under a psych's care.  I passed the mental eval with flying colors and the psych's said my reaction was completely understandable! 
I went back to the surgeon, had another MRI and no miraculous healing occurred since the last tests.  In fact, more bulging.  So, I'm going to a new pain doctor in March.
I have faced the depths of depression and cried and cried.  I've even wanted to end it all, but my faith wouldn't allow me!  There's always been the hope that tomorrow would be better, a little less pain.  And sometimes it is!
My husband has left me because he couldn't cope.  Evidently only women stay during sickness and health.  The doctors tell me this is common.  If the man is disabled, the woman sticks by him, but if it's the reverse, he's out the door!  There are exceptions but, it's very common.  So, now it's just me and my sons. 
I take four neurontin (because the copay for lyrica is too expensive), two robaxin, a demerol, two zoloft, a wellbutrin, four calcium, a prevacid, three levsin, two multivitamins, four glucosamine/chondroitin, one shark cartilage, three vitamin e, a melatonin, and a klonopin.  These meds and supplements are spread out in four doses throughout the day and I still live with pain.  I have another 40 to 50 years to live like this. 
I find it difficult to make it to church.  But, I am able to email a lot of my church friends. I hope to make more here.  Share with me your miseries, your joys, your advice, and your hints for making it through the day! 
Thank you!
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6 years ago  ::  Jan 25, 2008 - 7:22AM #2
ceks1953
Posts: 74
I am so sorry that you are suffering such pain and have so many problems.  You remind me of myself.  I ruptured my disc at age 32 and had 2 surgeries and I am in pain too.  I managed to work until age 50 and took retirement so I don't have to worry about work. I have taken much pain meds over the years also to keep it under control and haven't had to go to pain management yet.  I thought the purpose was to manage pain,not to tell you that you're too young for good pain management.  I have a friend who had a pain pump inserted in her spine and she does well with that. Has anyone suggested that to you?  Hopefully you will get more pain relief at this new clinic.  I will pray for you and know that many on here will do the same.  Keep at it and don't take that drivel about you being too young.  You have a right to pain management, its the law.  Check out painaid.com, maybe they can give you some ideas to discuss with the new dr. Welcome and hang in there, we have your back here and are always ready to listen and offer advice. CarolS.
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6 years ago  ::  Mar 11, 2008 - 4:26PM #3
RiverMoonlady
Posts: 773
All of you out there with back problems have my sympathy and support.  From what I have heard and read, back trouble seems to be WORSENED by surgery.  I know a number of people who forever regret their back surgery (or surgeries) because they are now in more pain and have become dependent upon pain meds.

If I am ever (knock on wood) confronted by back trouble, I will look back at your experiences and do my best to avoid surgery.  There is a good possibility of my facing back problems because I broke my tailbone in a horseback riding accident 20 years ago.  Every other injury I've had has come back to haunt me except for this, so I am going to take your experiences seriously.

My prayers go out to all of you.
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6 years ago  ::  Mar 11, 2008 - 9:12PM #4
karbie
Posts: 3,329
Dear macrinaguerrero,
  I'm sorry that you are in so much pain. Any "doctor" who refuses to give you pain medication so you can have it later when you're all grown up is a manipulative creep. Especially after selling you out to the insurance company.
  My doctor calls my depression 'situational depression'...like me, considering the chronic pain and other physical problems most of us have, we'd be crazy if we WEREN'T depressed! (For all of you who've heard me on this soapbox, forgive me for the repetition.) I'm glad you are taking something for depression; the stress of constant pain causes a chemical imbalance in the brain. I've seen the difference in the CAT scans between a normal brain and a depressed person--it's a dramatic difference.
  I'm lucky because my husband has stood by me, especially since our insurance is through him. I don't have enough Social Security quarters to get anything on my own and couldn't draw off his for another 9 years. I don't qualify for disability of any kind because I haven't worked for the last 5 years. The fact that I had to home-school my son for 3 years and then he still had severe health
problems in HS doesn't count...but if I hadn't done that we would have lost him. Now he's in college, in love, and every 24/25 hour day was worth it. Didn't do me any good physically and I didn't care. 
  I'm getting my second nerve block of this set tomorrow--didn't have any last year both to try to unscrew our credit and because I got cellulitis 3 times. I WAS taking the blocks awake, but since less than 10% of the patients do that, they keep billing it wrong and last time I had blocks in February it took me until December to straighten it out. Better a 3 day migraine than a 10 month one so now I'm letting them knock me out again. During that time, they've changed how they administered it to me--since I wear fentyl patches anyway, they added fentyl to the mix and got a milder headache than the curled-up-in-a-ball whimpering ones I'd been getting. Still have a 4 inch round nice purple bruise from last weeks IV, spaced half an inch from a good vein. I'm GLAD it's still there--I want the doctor to see it.
  I have spinal stenosis, degenerative disc--I've lost over 2 inches in height in the last 10 years and am shorter than I was in HS. I've had fusion/graft in my upper spine because instead of discs I had rubble and a bone spur pressing on the spinal cord. They found THAT out when they were doing blocks in that area and brushed the spinal cord. I know I need my left knee operated on, but Phil needs surgery on his knees, too.
   I'm not going to compare more notes on my own problems because it's boring. My husband understands my pain because he's had his back broken and pelvis crushed a few years before we got married. They tell him he has severe arthritis in his neck--and then don't offer anything to help him. I can't get him to go into Pain Management with me because he's furious that I am still suffering. I remember the first time I went and the doctor told me he could get me pain free--I hadn't realized I still hoped for that. When the tests came back, he sincerely apologized for getting my hopes up and told me he'd do the best he could to lower my level of pain. I was crushed too.. I had gotten my hopes up, or had never accepted reality in the first place...gut-wrenching to contemplate the joys ahead.
  I'm 53, so depending on my grandmother's life spans, I'll either die in my early 80's or reach 100+ like the Grandma I'm blessed to still have. I'm currently sulking because I'm tired of pain, hot flashes, and the fun hormonal rides. I haven't been able to get my primary doctor to give me hormones--she raged when another doctor there gave them to me and it was wonderful. I'm switching to THAT doctor next month. I know my risks of blood clots is stronger due to my weight--but I feel that in the end it should be my choice. Less time off for pregnancy and breast-feeding, this has been going on for 41 years and -excuse me--I'm bloody sick of it. The phrase "Oh, dry up!" comes to mind frequently....humor is a refuge most of us resort to. I also use stubbornness, which I have in abundance. Supposedly my first complete sentence was "No-mine-do it myself!" It's not that I don't pray for strength--I just refuse to give up.
  Speaking of praying--I hope that your new doctor is the real thing. I made sure that the one I went to is nationally accredited, because that way I knew that really was his specialty.  As for your last quack praying with you...and then preying on you...on my first visit I got a prescription for vicodone. He told me that letting someone suffer when you could make their lives more bearable was a SIN. I agree. Good luck...I'm sorry if this doesn't make sense--this has been a melt-down day.
Karen
"You are letting your opinion be colored by facts again."
'When I want your opinion, I'll give it to you."
these are both from my father.
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6 years ago  ::  Mar 11, 2008 - 9:12PM #5
karbie
Posts: 3,329
Dear macrinaguerrero,
  I'm sorry that you are in so much pain. Any "doctor" who refuses to give you pain medication so you can have it later when you're all grown up is a manipulative creep. Especially after selling you out to the insurance company.
  My doctor calls my depression 'situational depression'...like me, considering the chronic pain and other physical problems most of us have, we'd be crazy if we WEREN'T depressed! (For all of you who've heard me on this soapbox, forgive me for the repetition.) I'm glad you are taking something for depression; the stress of constant pain causes a chemical imbalance in the brain. I've seen the difference in the CAT scans between a normal brain and a depressed person--it's a dramatic difference.
  I'm lucky because my husband has stood by me, especially since our insurance is through him. I don't have enough Social Security quarters to get anything on my own and couldn't draw off his for another 9 years. I don't qualify for disability of any kind because I haven't worked for the last 5 years. The fact that I had to home-school my son for 3 years and then he still had severe health
problems in HS doesn't count...but if I hadn't done that we would have lost him. Now he's in college, in love, and every 24/25 hour day was worth it. Didn't do me any good physically and I didn't care. 
  I'm getting my second nerve block of this set tomorrow--didn't have any last year both to try to unscrew our credit and because I got cellulitis 3 times. I WAS taking the blocks awake, but since less than 10% of the patients do that, they keep billing it wrong and last time I had blocks in February it took me until December to straighten it out. Better a 3 day migraine than a 10 month one so now I'm letting them knock me out again. During that time, they've changed how they administered it to me--since I wear fentyl patches anyway, they added fentyl to the mix and got a milder headache than the curled-up-in-a-ball whimpering ones I'd been getting. Still have a 4 inch round nice purple bruise from last weeks IV, spaced half an inch from a good vein. I'm GLAD it's still there--I want the doctor to see it.
  I have spinal stenosis, degenerative disc--I've lost over 2 inches in height in the last 10 years and am shorter than I was in HS. I've had fusion/graft in my upper spine because instead of discs I had rubble and a bone spur pressing on the spinal cord. They found THAT out when they were doing blocks in that area and brushed the spinal cord. I know I need my left knee operated on, but Phil needs surgery on his knees, too.
   I'm not going to compare more notes on my own problems because it's boring. My husband understands my pain because he's had his back broken and pelvis crushed a few years before we got married. They tell him he has severe arthritis in his neck--and then don't offer anything to help him. I can't get him to go into Pain Management with me because he's furious that I am still suffering. I remember the first time I went and the doctor told me he could get me pain free--I hadn't realized I still hoped for that. When the tests came back, he sincerely apologized for getting my hopes up and told me he'd do the best he could to lower my level of pain. I was crushed too.. I had gotten my hopes up, or had never accepted reality in the first place...gut-wrenching to contemplate the joys ahead.
  I'm 53, so depending on my grandmother's life spans, I'll either die in my early 80's or reach 100+ like the Grandma I'm blessed to still have. I'm currently sulking because I'm tired of pain, hot flashes, and the fun hormonal rides. I haven't been able to get my primary doctor to give me hormones--she raged when another doctor there gave them to me and it was wonderful. I'm switching to THAT doctor next month. I know my risks of blood clots is stronger due to my weight--but I feel that in the end it should be my choice. Less time off for pregnancy and breast-feeding, this has been going on for 41 years and -excuse me--I'm bloody sick of it. The phrase "Oh, dry up!" comes to mind frequently....humor is a refuge most of us resort to. I also use stubbornness, which I have in abundance. Supposedly my first complete sentence was "No-mine-do it myself!" It's not that I don't pray for strength--I just refuse to give up.
  Speaking of praying--I hope that your new doctor is the real thing. I made sure that the one I went to is nationally accredited, because that way I knew that really was his specialty.  As for your last quack praying with you...and then preying on you...on my first visit I got a prescription for vicodone. He told me that letting someone suffer when you could make their lives more bearable was a SIN. I agree. Good luck...I'm sorry if this doesn't make sense--this has been a melt-down day.
Karen
"You are letting your opinion be colored by facts again."
'When I want your opinion, I'll give it to you."
these are both from my father.
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6 years ago  ::  Mar 24, 2008 - 6:36AM #6
nancyredm
Posts: 1
HI  NEW TO THE MESSAGE BOARDS BUT YOUR STORY FELT LIKE MY LIFE TOO. BEEN IN PAIN SINCE 2001 AUGUST. IDEOPATHIC NUEROPATHY IS THE DIAGNOSIS BUT I THINK THERE WAS DAMAGE AFTER A HERNIA SURGERY AND ABDOMINAL WALL REDO. ANYWAY I FEEL YOUR PAI N AND HOPE U ARE DOING BETTER NOW A SI BELIEVE THISPOST IS A FEW MONTHS OLD. MY MEDS ARENT WORKING WELL EITHER AND THEY ARE GETTING EXPENSIVE. EVEN WITH INSURANCE, TODAY MY PAIN IS 10 COULDNT SLEEP BEEN UP SINCE 330AM.MY EMAIL IS NANCYREDM@AOL.COM I AM A 52 YO HOSPICE NURSE. A WIDOW AGRANDMOTHER OF 1 AND 1 ON THE WAY. 1 SON. HOPE TO HEAR FROM U AND U ARE DOING WELL. NANCY
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