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18 and Hopeless

RafiRRRafiR Posts: 1
edited 12/13/2015 - 9:16 AM in Fibromyalgia
i hope people are fine with a few long paragraphs, as i feel i just need to vent at this point or get some insights. i am an 18 year old male.

i usually never start off giving background information about my pain with this topic, but recently thought it may have some kind of correlation.

when i was 14-15 years old, i was severely bullied in high school. severely as in, i was severely depressed, underweight, suicidal, fatigued 24/7, etc. this lasted for about 2 years before it began getting better. this is just a short summary of my situation, as if i went into full detail it would be 2 pages of its own. basically, i never visited someone like a therapist or psychologist for it because i learned to deal with it myself and it was so bad that i knew, and still know to this day, that talking to someone probably wouldn't have made a major change in my life.

with this being said, i'm "ok" now. i put that in quotation marks because although i'm not getting bullied as much or daily as i was before, i still get triggered extremely easily and can be sent back into those dark thoughts within seconds.

one day, i was walking down the hallway in my school, and i had a striking pain in the back-center of my head (sorry i'm not as good with medical terms as i myself am trying to find out what's wrong with me). this was unusual for me as i have never got a striking pain there. i would have regular headaches every other day but it was normal as it is very common in my mom's side of the family.

the only way i was able to get rid of the striking pain in the back of my head at that moment, though, was by arching my head backwards and it released a "crack" sound. after that, the pain released and only came back about 15 minutes later.

ever since that day, more than 3 years ago, that striking pain has never left my body and just progressed worse. it went from coming back more intensely after the crack within 15 minutes, to 5 minutes, to 5 seconds, to not instantaneously, and with each "crack," the pain becomes stronger and stronger.

over the 3 years, this pain has moved from the back of my head, down to my neck, and shoulders (this is where the pain is the heaviest, to this day, and always constant). it then continued to move to my upper back, lower back, etc., whereas now it is in every. single. joint. of. my. body. i have pain everywhere that you could think of, everywhere that one bone connects another and everywhere there is a muscle, from my fingers, to my knuckles, to my wrists, to my shoulders, to my back, to my hips, to my knees, to my ankles, to my toes, the pain is everywhere (i cannot express this enough).

ever since that day 3 years ago, i have not had one pain-free day. it is still the same "cracking" sound as it was 3 years ago, but instead now it is everywhere in my body. as i mentioned, the worst pain is in the back of the head/neck/shoulders region. it feels as though someone is sitting on top of me for the entire day or trying to drag me down.

i can't do anything anymore. i can't go shopping for more than 30 minutes without feeling dizzy or wanting to collapse. my whole mood reflects this. i am always angry and have a short temper. my only escape from this is sleep, that is the only time i am pain-free. as soon as i wake up, i can barely move. as i turn over to check my phone in bed, my whole back and rest of my body cracks and releases this tension, which quickly builds back up within the next second and is 10 times stronger. the only way to get rid of the pain at that exact moment is by "cracking," and i know, that is probably not the best idea to do, as my family doctor told me not to after my original first appointment with him at 15 years old.

i told him about it when it started becoming serious. he told me to try not cracking my head and to stay off tylenol/advil and see how it is. i do not work out, not active, was in no accident, nothing.

i did this, nothing happened. i took so much advil/tylenol, etc. within those 3 years that i am either completely immune to them now (if that is possible, as i hear it is), or the pain is just so overwhelming that they do completely nothing to me.

ever since, i've been to several other doctors. the first doctor that my pediatrician sent me to was a neurologist. he made me get several xrays an mri. this process took about 6 months and when i got back to him, i was basically praying for something to show up so i could get some answers (which shows how miserable i really was and am). he told me everything was "perfectly fine" and that he can't help me, and that was the end of it. i felt hopeless. i felt like i wasted a whole year on nothing.

since then, i have probably gotten over 15 blood tests for this situation. every doctor i get sent to wants a new blood test, that at this point, i feel like they just request it because they do not know what else to do with me.

the second neurologist i was sent to, once again, made me go through the whole process, (every doctor i've been to that did a physical examination on me told me everything was fine) and told me that he also, does not know what was wrong with me. the difference between him and the first neurologist was the he cared. he told me he would suggest it's either fibromyalgia or something else and told me to go see a rheumatologist. afte

i haven't heard from him for another 3 months and went back to my doctor hopeless again. once i did, he ended up sending me to a pain specialist because the rheumatoloogist working at that clinic was not available anymore (instead of just sending me somewhere else???), but i decided to go. after i went, the pain specialist (like the rest) made me get other intensive blood tests, and still nothing.

like the other doctors, he told me he's afraid to diagnose me with anything because there's apparently not enough evidence and said he does not believe it's fibromyalgia because i'm a male and am so young (which was pathetic to me as there are many who have been diagnosed with it), but okay.

i ended up hopelessly going to my family doctor again and he decided to take action this time. he made me appointments to go see two rheumatologists (one of which is supposed to be the best in toronto, where i live, and what i am currently waiting for, as the appointment took 3 months to make and now i am currently on a 6 month waiting list).

to keep you on track, this is all recent now. this is all the progress i have gotten in 3+ years.

i've been to the other rheumatologist twice and am seeing her again in 3 weeks. on the first appointment, she also, performed several tests, blood work, physical exam, and also told me she did not know what's wrong with me. i explained to her that the pain came from the "cracking" and she literally told me "so what? i can crack my joints too" and she cracked her knuckles, which was like a slap in the face to me.

the difference is, is that she decided to take action and try medication. i was put on arthrodec and baclofen. when i would talk to other doctors, they would look at me as if i was an alien because i was so young, being on those medication, especially arthrodec. i have barely taken baclofen, as it doesn't do anything to me, but arthrodec was truly a life-changer in the beginning.

i was prescribed it on the week i was starting university and it changed my life. it completely cut the pain in half and i was able to do so many things i was incapable of before and saw hope in studying. after a month maximum, the effects slowly starting wearing off, to where now even arthrodec does almost completely nothing to me.

i went back to her, told her this, and she put me on cymbalta. i had horrible first-week symptoms of it, but it also, once again, was great for 2 weeks, and now does completely nothing to me.

so if you are still here, reading this now, thank you so much for listening, but this is where i am at now.

i have my next appointment with her in 3 weeks and am scared because do not know what to say or expect, as nothing is helping.

i am so lost, in such agonizing pain, and don't want to live the rest of my life like this, even though i know i probably will.

does anybody have any types of suggestions or ideas that they could share with me whether what might help or even better, what i might have??

thank you so much.

welcome to spine-health

one of the most important things that members can do is to provide the rest of the community with as much information about themselves as possible. it is so very difficult for anyone to respond when we do not have enough information to go on. this is not meant to indicate that you are doing anything wrong or violated any rule, we are just trying to be pro-active and get the information upfront so that people can start responding and your thread is more effective.

so many times we read about members who have different tests and they all come back negative. the more clues and information you provide, the better chances in finding out what is wrong, the fact that your test results are negative does not mean that you are fine and without any concerns. many times it takes several diagnostic tests and procedures to isolate a specific condition.

here are some questions that you should answer:
  • - when did this first start? . year, your age, etc
- was it the result of an accident or trauma?
- are there others in your family with similar medication conditions?
- what doctors have you seen? (orthopedic, neurosurgeon, spine specialist, etc)
  • . which doctor did you start with? ie primary care physician . who are you currently seeing?
- what conservative treatments have you had? which ones?
  • . physical therapy . ultrasound / tens unit . spinal injections . acupuncture . massage therapy
- what diagnostic tests have you had? and their results (mri, ctscan, xray, emg, etc)
  • . summarize the results, please do not post all details, we cannot analyze them . how many different tests have you had over the years? similar results?
- what medications are you currently using? (details, dosage, frequency, etc)
  • . name of medication . how long have you been using this? . results
- has surgery been discussed as an option? (if so, what kind)
- is there any nerve pain/damage associated?
- what is your doctor’s action plan for treating you?

providing answers to questions like this will give the member community here a better understanding
of your situation and make it easier to respond.

please take a look at our forum rules: forum rules

i also strongly suggest that you take a look at our faq (frequently asked questions) which can be found at the top of the forum menu tab or by going to faq there you will find much information that will
  • - help you better utilize the spine-health system- provide pointers on how to make your threads / posts- tips on how to create your avatar (your picture), posting images, etc- general pieces of valuable information

please remember that no one at spine-health is a formally trained medical professional.
everything that is posted here is based on personal experiences and perhaps additional research.
as such, no member is permitted to provide
  • - analysis or interpretation of any diagnostic test (ie mri, ctscan, xray, etc)- medical advice of any kind- recommendations in terms of medications, treatments, exercises, etc

what could be good for someone could spell disaster for another.
you should also consult your doctor to better understand your condition and the do’s and don’t’s.

it is very important that new members (or even seasoned members) provide others with details about their condition(s). it is virtually impossible to help another member when all the details we have are

i’ve had this for years, it hurts, i cant move my shoulder – what could this be, what treatment should i get?

diagnosing spinal problems can be very difficult. in many ways it’s like a game of clue. especially, when the diagnostic tests come back negative – no trouble found! then it’s up to the patient and the doctor to start digging deeper. the doctor is like a detective. they need clues to help them move along. so, you as the patient need to provide the doctor with all sorts of clues. that is like it is here. without having information about a condition, its impossible for anyone here to try to help.

specific comments :

personal opinion, not medical advice :

even though you did provide us with a lot of detail, please look at some of the questions i attached and provide us
with answers to them. the more we know about a member, the easy it is for other members to respond.

--- ron dilauro, spine-health system moderator : 12/13/15 15:16 est



  • If you want someone to talk to email me i know what you're going through!

    I have ptsd from my childhood it was so much fun and also my jobs! You need to stick with the Rheumatologist's there the only

    Field that understands these problems! BUT be ready for allot of travel testing feeling like a guinea pig it sucks I'm 41 I was diagnosed

    At 18 then recently in 2014 i left my state and found a very good Rheumatologist instead of poking prodding etc he gave me a exam

    Then almost a hour long questions about my entire life then the list of tests blood pee etc! Finally he said you have fibromyalgia,

    Chronic fatigue, and chronic pain. He also said a shocker he said from birth! ! I was blown away but it made sense 100 plus jobs

    Every summer as a kid my parents sent me to a family friend on a farm year after year i could never adjust what's it called build

    Up for the job whatever it was the same with all jobs in my younger before 20 it was sore achy or on the farm it was actually pain

    From my 20s till now it has been getting worse then in my late 30s early 40s 3 accidents finished my back and pain off.

    I hope you are able to get some answers

    Best of luck take care
    “I am aware that I am less than some people prefer me to be, but most people are unaware that I am so much more than what they see.”
    ―douglas pagels
  • I'm so sorry to hear what you are going through. No diagnosis is frustrating. I'm wondering if you have had x-Rays of your spine? If you had a misalignment in your neck, it would affect your shoulders and upper back as well. Then a misalignment in one part of your back affects the rest of your spine. I know you had a lot of bloodwork--did they test you for vitamin D deficiency? Just curious. It's possible you have a few things going on, making your diagnosis even more difficult. Hang in there, I can't imagine feeling that way at 18. Pain does not discriminate when it comes to age, despite people telling us were 'too young' to feel the way we do. Hope you find some answers and some relief. I know what it feels like to be desperate to be diagnosed with something. Because then you can at least treat it. It also helps with the fear factor. My diagnosis (tethered spinal cord) was um....horrifying but treatable and it still feels better to know Rather than worry that I had MS or ALS or something. Sending you positive thoughts!
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  • Fibromyalgia doesn't show up on blood tests; they are merely to rule out other diseases, particularly autoimmune. There is a lot of information online on symptoms and diagnosis. It is diagnosed from medical history, clinical presentation, and exclusion of other conditions. I only speak from my experience, and have had fibro for many years. The worst is the pain and debilitating fatigue. Savella has been the best medication for me to manage fibro. Taking Lyrica was a horrible and fattening experience. 
    Ol' Spiney..Micro-D L4-L5, TLIF L4-S1 -post op central HNP L4-S1,stenosis, retrolisthesis, EF, facet arthropathy, lumbar& cervical DDD. FBSS- Medtronic pain pump & SCS
  • itsautonomicitsautonomic LouisianaPosts: 2,561
    The real issue is no doctor can possibly exclude all possible disorders/diseases that fibromyalgia may mimic so even with a diagnosis of fibromyalgia to say its 100 percent accurate is still a long shot for many people.  It is a diagnosis that should never be accepted without alot of upfront work on the doctors part or you may very well go the rest of your life thinking fibromyalgia and it in turn was something else.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • itsautonomicitsautonomic LouisianaPosts: 2,561
    I would say 95 percent of people diagnosed with fibromyalgia have never been tested to rule out autonomic dysfunction yet it is very well known autonomic dysfunction has many of the same issues , I would say the same for small fiber neurapathy and postitional spinal cord impingement.  All can cause the same issues and are being studied as cause for fibromyalgia in many people.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
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  • @itsautonomic I enjoyed reading what you had to say it was very informative I take it that you have had these tests done as well? Do you also have fibromyalgia? 

  • LizLiz Posts: 9,755
    edited 06/23/2017 - 1:40 AM
    This is an old discussion created by a member who made one post 18 months ago and hasn't been back for 10 months or answered the questions posted by a moderator to give more information so I am going to close it


    Veritas-Health Forum Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
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