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Nobody will help me. My spine doctor hates me. Not in my head either.

On the first meeting, I put down my pain as a 3, but also wrote that it kept me from sleeping. I assumed someone would see that and help me. I was sent to PT for 8 sessions. I wrote down that I couldn't sleep from the pain for the PT forms as well.

The ortho doctor had mentioned that my adderal could cause insomnia. He has shown disdain for me at every meeting. Its either because I have obamacare or he thinks I'm a drug seeker. 

I went to a shoulder doc at the same time. He gave me an MRI and then a shot all within a week. I still couldn't sleep though because of lower back pain. 

I had a sleep study done and was given gabapentin by the sleep specialist. His dx was not pain though. Its that I need a set schedule from not working. I had a lot of PLM, but he didn't think it was waking me from the data. He can't address back pain. He hates me too, but he DID rx a useful med. 

Went to er for back pain last week. Then put on course of prednisone at PCP. Also got 40 tylenol 3 while getting a second opinion at another ortho doc. Even with help of the prednisone, I need gabapentin and tylenol 3, along with ice/heat in a homemade recliner to ease the pain.

My MRI said I have moderate narrowing in the neural pathway at l4/l5. Not spinal stenosis, but similar. The spine doctor crossed out moderate and put slight, then crossed out slight in 5 other places and put none. Just with pencil he did this. I have pain in that exact spot too. Then he said he thinks its muscular. He gave me 2 minutes at my last 3 visits. He expressed disdain that I insisted on the MRI at the last visit. He's about 28 and the worst doctor I've ever met.

I've been telling all my doctors that pain is keeping me up for 9 months now. Eventually I started believing that I had a different cause of insomnia. I actually bought a cpap out of pocket as a psychologist heard my story and thought I had apnea. Then I was sure it was RLS since the sleep study write up was recommending Parkinson drugs. 

I've been sleep deprived so long I'm having a hard time communicating to doctors. Nobody will help. I'm waiting on a call from a new spine doctor referral from my pcp. I've begged for help literally at the er to be admitted. I've begged BCBS. I've begged the neurologist office that did the sleep study.

I am now 100% certain that pain has been causing my insomnia. I can sleep ok with gabapentin and tylenol 3, but it wears off in 4-5 hours and I wake up in pain.

I have pain in si joints that I can't relieve by any position. This is in addition to the pain on the right side of my spine. Also pain to right of that spot and the top of pelvis on that side. 

I was dx with adhd this year at 44 yo. Its been the only thing keeping me +. My dad is having 2nd surgery in 6 months soon. He's a mess too. I stopped adderal recently as I feel its a big reason nobody will help me.

I want a proper dx, but yes I also would like pain relief since its 24/7 pain and I'm sleep deprived. I feel so let down. I can't believe the cruelty I have experienced. I've been telling every1 I'm in pain but nobody will listen. 

My BP is very high as a result of sleep deprivation. They all blame the adderal. Its higher now that I quit. I wasn't using it much anyway so I never had withdrawl. It was helping pain too. 

How can a doctor change the MRI findings? And then express disdain that I requested it? The second opinion guy said I should do PT since bolts and screws were the alternative. I have 2 bulging discs that he was probably referring too. Both with degeneration. 

I was referred to a pain specialist by two ortho doctors. My PCP thought I should instead find the cause by getting a new spine doctor, which I agree with. Hopefully they call soon.

Not sure of my point in posting this. My life is over it seems. Right after I finally got dx adhd and my whole life makes sense. Tragedy at its absolute worst. I have OA in my shoulder dx and pain in hands that has not been addressed. Seems obvious I have OA in my SI joints. My research so far sounds like I'm in for never-ending pain. All in the worst possible climate for chronic pain. 


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Comments

  • L4_L5LL4_L5 Posts: 1,318
    edited 12/26/2017 - 5:18 AM

    So sorry to hear you’re going through all this. I can relate to your frustration. It’s downright maddening at times.

    No doctor will give you a hard time for having Obamacare. Many people wrongly assume that Obamacare always = Medicaid. However, there are hundreds of thousands of Americans (probably millions, actually) who pay as much as $2000 (monthly) premium for a high-quality ACA plan.

    Average reimbursement speed for Obamacare is 20 to 40 days after a service is provided, which is pretty fast. 

    To compare: If you’re injured on the job in a car accident and require extensive dental work, many dentists have to wait up to a year (or more) before they’re reimbursed by worker’s comp. for the dental services they’ve provided to the injured worker.

    So that makes 20 to 40 days seem like nothing.

    Different specialists may interpret your MRI in different ways. 

    If you’re having long-term back pain due to a disc issue, it’s not uncommon for a neurosurgeon to look at your MRI and say all your discs are normal-looking for your age (especially if there’s nothing particularly traumatic on your MRI).

    However, if you take that same MRI to a neurologist he or she may beg to differ.

    Because no two spine experts/specialists see an MRI in the same way it makes correct diagnosis complicated. 

    Know that you are not alone and that misdiagnosis can and does happen.

    Keep at it. Don’t give up. And don’t think this kind of thing doesn’t happen to others. It’s more common than you would think.

  • nutcase007nnutcase007 United StatesPosts: 793

    @cantsleeppain - I think I have a little idea of your frustration.  I've been in increasing chronic pain for 20 years for a messed up neck thanks whiplash from rear end "accident".   I've been through two cervical fusion and looking at my third next month. 

     My highest concern for you is your lack of sleep.  As my pain levels increased so bad that opioids were not longer doing anything, last year I was down to 10 minutes of passing out  (I do not  call that sleep).  I was at  pain levels of eight or nine, most days hitting tens once or twice a day.  I would pass out 10 to 20 times in a 24 hour cycle.  I was bitterly complaining to multiple doctors and I could not get any of them to do anything.  

    I ended up with severe chest pain, so I ended up in the ER with elevated troponin levels (early maker of possible heart attack).  I was in the cardiac ICU for two days until I had a heart cath.  Once I had the heart cart which came back clean, I was tossed back on the street.  Guess what?  The severe chest pains came back, so in the ER again.  This time my troponin levels were normal, so they were getting ready to toss me out again.  My retired nurse sister asked the ER doctor to prescribe me some Ativan, to which he agreed.  Once I started the Ativan, I could get three to fours hours of sleep.  I'm still taking the Ativan.  

    Something else that has helped me with sleep has been the use of CBD Oil.  It is legal by federal law.  Some states claim that it is not legal and have been known to raid retailors selling CBD Oil.     

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  • cantsleeppainccantsleeppain Posts: 1
    edited 12/28/2017 - 3:00 AM

    Just tried 5 grams kratom. I used before for anxiety. Finally some relief. 

    Edit: not really that helpful. Visited my first chiropractor. Maybe will help. Still can't sleep though. Ugh....

    Edit2: my pain came back after chiropractor. My max dose gabapentin is 1200. I took 1800mg total over 2 hours. Plus 1 tylenol 3 and 800mg ibuprofen. Ice packs, tens unit still can't sleep.

    I decided on weed and adderal out of desperation, but also I knew adderal would calm me down. 

    I had done neither for 2 weeks and little or each for 3 months. The weed is good and had me thinking of a phone call begging the hospital or BCBS for help. Sheer terror. Not fun. Luckily the adderal came on quickly and I felt great.

    I then did PT stretches and it provided relief for an hour which I don't ever remember happening before. So now I think I can heal with adjustments and PT. I did 6 months PT on crooked, injured joints. It may take some work. But hopefully I've been through the worst. 


  • I might be able to shed light on some of the "attitude" you're getting from your doctor.  It is becoming the overwhelming opinion of medical academia that "adult ADHD or ADD" does not need to be treated with medication.  Because Adderall and other medications for ADHD are controlled, they want to cut back on prescriptions.  It's just like the war on opioids.  Many doctors look down their noses at adults taking Adderall.

    In my personal opinion, I would not want to see a 28 yr old Neurosurgeon/Spine doctor.  I realize everyone must get their start somewhere, but I prefer it not be on me! I would suggest taking on one issue at a time with the specialists.  It's always good to do your own research regarding your health, but also be careful.  Not everything on the Internet is accurate.     

    Several Epidurals, L4-S1 360 ALIF, Numerous Facet Joint Injections, RFA x2
  • dilaurodilauro ConnecticutPosts: 13,168

    About the 28 year old..... Seems so odd, considering the extensive training that doctors have to go through and then when they specialize in a given area, that more years of training.  You have to add the Internship and residency that the doctor has.   Doing all of this may start a doctor off at being about 32 or 34 years old.

    So, its this 28 year old a wizard?

    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences 
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  • cantsleeppainccantsleeppain Posts: 1
    edited 01/04/2018 - 6:52 AM

    I've slept 5 nights good now. It seems I had tight muscles and some new injuries that I did not notice. The chiropractor got me using the foam roller. All I feel now is pain in my back ribcage in a few spots. Pulled muscles obviously. So the pain in top of my pelvis was a new injury I aggravated for over a month before going to ER. Not radiating from a nerve.  . Apparently I looked like a drug seeker? I never even asked for pills but I shouldn't have to. A good doctor could tell I was in pain. 2017 never happened as far as I'm concerned.

  • So glad to read that Im not the only one fighting this. Pain in my right hip radiates down the leg, behind the knee to the foot and it tingles. PCP sent me to ortho who did a MRI those showed multiple issues and not have to see a neuroaurgeon. Anybody startec their disability paperwork yet?

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