18 Month Update: 18 Year Old Male Undiagnosed Chronic Pain

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New Member

Date Joined Feb 2011
Total Posts : 18
   Posted 5/4/2011 11:23 AM (GMT -6)   
It's been awhile since I have posted here. I was getting very desperate having to deal with whatever this is for so long and willing to try anything. My mom has told me from day 1 that this is all in my head and a few months ago I was willing to force myself to believe her. Of course I didn't stop my treatment because I knew if I abrupted stopped I would never be able to mentally overcome it.

I have a very strong mind I will say and after a few hard weeks was able to convince myself that nothing was wrong with me, that the pain I was feeling was psychological, and that my muscle spasms were not exactly sub-consciencely induced, more of a result of me pretending to be in pain. Not surprisingly it didn't work..

Throughout this period I had finally been seen by some specialists. My rheumatologist had gotten me into a Duke Neurologist as it was the only other option that they could think of. The neurologist did an MRI of my brain as I hadn't had one done since I was a child. Its been about a week and I havn't heard anything back which I assume is a good thing. But then again...that means I dont know whats causing this. The only thing he could say is hes seen how this sleepless cycle can cause chronic muscularskeltal pain and that I need to get some sleep. He didn't have any advice other than to relax and continue to take my medication and one day I will get back into it. While I was glad nothing is apparently wrong neurologist, I am left clueless..

Here I am two months later with no improvement. I have continued to see my physical therapist weekly with unfortunately no relief from pain. After 9 weeks of treatment with lidocaine injections throughout my trigger points in my back every 2 weeks we were fortunatly able to greatly reduce the amount of spasms I was having. Were still not quite sure if it was the accumulation of Zanaflex in my system(I dont think it was the medication) or the treatment, or something else but regardless it worked. I still had trouble falling to sleep because of the pain but luckily with little to no spasms I would stay asleep. I build tolerances to medications drastically fast so I tend to taper myself. Over springbreak and the week before I tapered down my ambien use till I went a week without it. I had went with 2-4 hours of sleep for about 5 months so little to no sleep was something I had grown used to. After the break I started a new nightime dose to try to finally get back to sleeping. It finally had worked! For the past 3 weeks I have slept 5-7 hours a night give or take 3-4 days where for no apparent reason I couldnt sleep. The only thing is, my pain has gotten worse since I started sleeping. My muscle spasms are coming back and back in my shoulders, the pain is bringing nausea again and continue having to do my breathing excersizes to avoid vomiting. My muscles feel like they are in complete tetanus. My shoulder muscles (primarily my traps and deltoids) look like I have been working them out for 6-7 months on a muscle building regimine and they will not relax, the same is to be said with the muscle aligning my spine and buttox.

Currently to deal with pain I use my tinz unit and heat pad but I find it more as a tingling distraction than a pain reliever. My mom doesn't like how I have to take medication and because its such a hassel I try to take the natural route.

My question is where do I go next? I am going to have a talk with my PT tomorrow when I see her but she has no clue either. Ive been continuing this treatment for close to 4-5 months with no pain relief and the spasm relief has returned once again (4th time we got them to relax and start up again). I only have 3 nights left of ambien until I run out and the doctor who prescribed it to me my mom wont let me see so I am trying to save ambien for the desperate nights and tapering off with 5mg one night, then 2.5 the next, then 2.5 the next, then everyother day till I am out. I just have no clue where to go anymore and no one knows what it is. I am only 18 year old male and besides this back pain/muscularskeletal pain and the symptoms that spin off it, I am completely healthy. I just am clueless on what to do now

spinal soldier
Veteran Member

Date Joined Dec 2009
Total Posts : 687
   Posted 5/4/2011 12:50 PM (GMT -6)   
yo man, Rheumatologists sometimes are good diagnosticians, maybe a good Internal Medicine doc or a Neurosurgeon.
L4,L5,S1 bilateral Laminectomies, Foraminotomies 2002
L4-S1 PLIF with instumentation 2008,

current Rx: MScontin 100mg q8hrs. , dilaudid 8mg q6hrs. prn, oxymorphone IR 10mg q6 ,vistaril 50mg prn nausea, Lyrica 150mg 2x,Adderall 20mgs 1x A.M. 10mg PM prn, Soma 350 mg 3X, Elavil 25 HS, diazepam 10mg bid prn, Supplements: CO-Q10 100mg, Vitamin D 1000IU, Fish-Oil1000mg EFA, B-Complex50 3x/day, ALA

New Member

Date Joined Feb 2011
Total Posts : 18
   Posted 5/4/2011 2:34 PM (GMT -6)   
I have a rheumatologist who I work with closely. I was recently sent to a neurologist for their opinion along with a neurosurgeon who works in the same office building that I do my physical therapy. They are clueless. They all thought that this was just all a cycle from my sleeplessness however now they have no clue.
Chronic Pain patient with unknown causes thought to maybe be Fibromyalgia.

Current (unsuccessful) medication: Lyrica, Etodolac, Zyrtec, Magnesium,Ambien, Lunesta, vitB complex, Omega 3, Multivitamin and Minerals.

Previous meds: Cymalta, Lyrica, Seroquel

Veteran Member

Date Joined Aug 2008
Total Posts : 3193
   Posted 5/4/2011 4:22 PM (GMT -6)   
Hi Zabumafu....
I know you've posted here before...but I'm sorry that I don't remember your whole story (I've got memory issues to begin with)....  From what you wrote here, though, I want to just say a couple of quick things.
First - if you are experiencing pain, you have pain.  Nobody (not even your mom) can say "it's in your head".  I'm sorry, I have boys that aren't far off from your age - and I can't imagine saying that to them (but maybe that's because I understand pain issues).  So, please try hard not to let anyone convince you that it's in your head.  You know your body and I believe you know when something is "not right".
What does your rheumy say about everything? 
Hmmmm, I think sending you to a neurologist is an interesting decision (just my opinion!).  I've seen a neuro in the past - but that was for my headaches and so forth.  That's usually not the next step in determining the root of your pain issues. 
What about seeing an internist, or better yet - a Pain Management doctor.  Not only for treatment, but diagnostic purposes.  Trigger point injections are great - IF they are working.  There are other muscle relaxers.  There are other nerve/pain medications.  There are other means of treatments.
I guess my best advice would be to somehow find a way to get your mom on board w/ all of this - is that at all possible??  Sit her down and explain how much this is impacting your life.  You are too young to be dealing w/ all of this - and not trying to get it treated effectively.  I'm all for "all natural" remedies - again, if they work.  Would she let you see a Pain Management doctor?  (I'm assuming you are still on her health insurance and that's the reason for needing to run this all through her).  Try to get her to see that you want to try to get ahold of these issues so that you can start your life out feeling good - w/out such severe pain. 
I'll end this though, with what I said at the top.  Pain is real....please don't let anyone tell you it's in your head.  I hope you are able to find a solution that works for you :(  Please keep us updated on things and what you decide to do.
Take care of yourself, hon. --Tina
Dx: Disabled due to many, many health/pain issues
Meds: Heart meds, Effexor, various Pain Meds (I've literally been on them all)...and on the list goes; intrathecal pain pump candidate

Personal: Christian wife and mom; I have six sons...and two "surprise" blessings - identical twin daughters (born 9/2010)

Veteran Member

Date Joined Jul 2009
Total Posts : 2042
   Posted 5/4/2011 4:34 PM (GMT -6)   
Forgive me if this sounds somewhat stupid, but have you tried sleeping in a different bed or at the very least flipping your mattress? Also how long has it been since you bought new pillows?

It is entirely possible that your bed and/or pillows could be causing it or at the very least aggravating what ever is causing your pain.

I am not trying to make a DX, only offering a little out of the box thinking.
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.

New Member

Date Joined Feb 2011
Total Posts : 18
   Posted 5/4/2011 7:39 PM (GMT -6)   
Thank you all for your support!
In my opinion, my mom unfortunately is a major reason why this is still going on. She loves me and cares for me however she becomes frightened and frustrated when she can't do anything to influence portions of my life. Being the oldest child and being the first to go off to school, I feel like this is an emotional next few months for her. Personally I believe she suffers from depression and possibly even a degree of bipolar disorder. Depression I can say with 100% certainty, but bisorder is just from being exposed to many cases when I received psychiatric treatment.

My father had a very very painful accident and was put on Vicodin I believe it was. He is very sensitive to medication and had a terrible reaction and ended up throwing the bottle away. Since then he decided to go the natural route until he healed about a month later. My mom after seeing this has gone all natural hence why she continues to be against medication, specifically pain medications. She tells me to go workout which I did but now am extremely limited on what I can do. Another major reason is my psychiatrist whom she hated with a passion. He put me on a variety of antidepressants and sleep medication which she absolutely hated. I was up to 120mg a day, the max dose of Cymbalta, when we ran into an insurance issue. They wouldn't refill it until they personally spoke to my psychiatrist who prescribed it. I had gone up to that dose in about a months time which apparently sparked red flags (i never responded to any of the doses). Anyways, my mom one day while I was at school went through my bathroom and counted all the pills and prescriptions. She is far from intelligent, atleast in comparison to my father, and misinterpreted the prescription. She mixed up the date with how many pills were in the container and thought I was abusing the Cymbalta (prescription was obtained on the 20th so she thought that meant 20 pills a month). She threw away the remaining Cymbalta and when I arrived home I had all my pills, a note with tally marks and their names, all on the kitchen table. I quickly proved her wrong and until this day she denies that she ever did it (hence why I think she has a psychiatric issue, she will lie to the end and not change her mind against any proof). If anyone has been through Cymbalta withdraw, it was the worst week of my life. Going from 120mg a day to 0 for a week as my doctor was gone all week was the closest I've been to suicide. I didnt sleep for 8 days, vomiting every 30 minutes, sweating, panic attacks, hallucinations (auditory), you name it. To make things worse, after I recovered she said "see what happens when you take unnecessary medication". Luckily now that I am 18, I can tell her she can't come with me however I do as she is very depressed. She is not the insurance owner and hasn't worked for almost 20 years.

Sorry I forgot to elaborate on the neurologist and rheumatologist. My rheumatologist ordered many tests, xrays etc. She was just trying to rule out rheumatoid arthritis and other autoimmune disease. She is very confused however hearing that she had a case identical to mine years back was comforting to say the least. She had a 22 year old marathon runner who was a female with almost identical symptoms. She said her symptoms were described more intensely but unfortunately they never diagnosed her, however she did get better. Through muscle relaxers, break through pain meds, physical therapy and rest, she got better in a matter of 2 months. Because of this, I was sent to physical therapy, pain management, and put on zanaflex.

I have seen a pain management doctor whom is the one doing the pinpoint injections. Unfortunately my mother was with me on the first visit and we agreed not to try any pain medications. However, after 2-3 months of worsening she put me on Lyrica which helped for a few days, then stopped after I reached around 200mg and we eventually discontinued. I havn't seen her in about a month as she sent me to the neurologist as her only available option that would be "acceptable" from what we first agreed on. The neurologist was just to check up on problems I had as a child. I had chronic migraines for years which led to the discovery of my arachnoid cyst, of which they said shouldn't have caused it. The neurologist I meet with last week again confirmed it shouldn't cause me any pain.

Jim1969, as for the bed and pillow changing we purchased a memory foam mattress and pillows. For a few weeks I went "bedroom" shopping throughout the house because my mom swore the reason I felt that way because I must have too many allergens in my room. After a few weeks of getting worse, I felt more comfortable in my own room.

Veteran Member

Date Joined Aug 2008
Total Posts : 3193
   Posted 5/4/2011 11:28 PM (GMT -6)   
I'm tired tonight but I'll comment more tomorrow.  But thanks for writing the additional information....it helps to get the "bigger" story.  Hang in there w/ everything and know you have us supporting you.
More tomorrow. --Tina

Regular Member

Date Joined Jan 2011
Total Posts : 230
   Posted 5/5/2011 5:14 PM (GMT -6)   
I want to howl in grief and rage; I am pained as both a mother, and as someone who suffers from chronic pain every time I hear of someone who has had to suffer from one close to them not believing their pain, telling them it's all in their head, they're faking, they want the attention, and so forth. I have been a victim too of that treatment; the man I was with for years said that to me after a year of specialists and tests and still no answers or proof to what I had. No one should ever have to suffer those words..
It sounds like you have some good doctors in your line up, but it sounds like your major hinderance is your mother. It seems even if she's attended treatments with you she doesn't seem to believe. Did I hear you say you're 18? As a legal adult you should be able to see whom ever you want, regardless of what your mother wants. This is not her pain, it's your pain, and it's affecting your life. One thing I learned was being proactive about my health care. If meds didn't work I had no problem going, this isn't working, we either need to up the doseage or try something else.
Have they tried doing nerve blocks, or sending you to another pain doctor to see what that one says? Don't stop persueing possibilities, till you've got things ruled out. Try to hang in there, hopefully they'll figure out soon what's wrong.
Remember, we're all here for you. You're not alone.
Originally injured 10/26/2007 - Initial diagnosis; Tendonitis
Have seen several specialists; Bone, Muscle, Hand, Neurologist, Chriopractor, Physical Therapist...
Went through a battery of tests, multiple MRI's
11/16/09 finally diagnosed CRPS - Stage 2
Permanently disabled, on Oxycodone and Celexa.
February 2011 successful SCSU trial
May 2011 SCSU implant surgery
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