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Undiagnosed And Losing It

gr33zyincggr33zyinc Posts: 37
edited 10/20/2015 - 12:28 PM in Fibromyalgia
So basically, this started about five years ago (21 now) with upper back/trap tightness and tension-headaches. This turned into thoracic-area-back-pain. Fast forward today and I'm just always in so much pain I don't know what to do with myself. I basically spend the entire day on my computer or watching tv. (Had to take a year off university. Cant not hold a job). I stretch periodically and foam roll (only when i can). Theres times i can not even stand getting on the foam roller.
My pain ranges from moderate to severe and is always there. Its either muscular dominate or very bad down my spine (one or the other most of the time). It can be dull, achey, burning, pins and needles, or like someone is wedging something against my back. I feel it in my neck (cervical spine), middle of my back (thoracic spine) and upper lumber spine. Pretty much every muscle in my back is sore and tender. Pain in shoulders, hips, knees, ankles, wrists. (not all at once, and pain comes and goes). Tender spots (chest, elbow, quads, calves, back, neck). Get a headache where it almost wraps around from the front top of my head all the way down into my neck/upper traps. When the pain is really bad i just need to be alone, I can not even talk to anyone.
Not sleepy at night, and tired during the day (it almost feels to me like its the middle of the night at 3PM!) Stomach seems sensitive to spicey,sour foods. Chronic sinus problems/ nasal drip / dry cough. Not the greatest memory, write things down often and still see to forget. Sometimes get dizziness and also very shaky mostly hands. Sometimes feel like I'm in a "fog". Pain worse in the morning (can't even get out of bed for a good 10-15minutes) then gets manageable. Gets worse again towards the middle of the night. It can be as bad as severe low back pain where I can not stand for more then a minute or two.. really bad thoracic pain where i just curl up in a ball on my bed. Sometimes its so bad I can barely get to the washroom at night. Or I feel like I will throw up and bring a pale (but i have never actually thrown up)!

Tried Acupuncture - did not help
Tried deep tissue massage - helped maybe a day at most
Physiotherapist recommended by surgeon - went to for a year and no improvement
Myofascial Specialized Physiotherapist - went to for a year and no major improvement
Rheumatologist said - NO R.A.
Pain Management Specialist - Anastasia injections (takes pain completely away, never lasts longer than 3-6hours). ......................................................- Discharged after they determined they could not help me
Surgeon - Surgery not an option at the moment.
Currently just doing a mix of stretches, yoga poses, and foam rolling when i feel i can.

Medications I have tried:
cyzlobenzaprine - Did not do much
amytriptalyine - Did very little
nortriptayline - Did very little
Gabapentine - Helped a little (at 1800mg /day)
Cymbalta - Did not really help
Lyrica - Helped maybe, but had baddddd side effects
Advil, Tylenol, Ibroprophen* - Do next to nothing
(Currently not taking any of these). Between not wanting to take them because i felt like i was taking too much, and not being able to get a doc. appointment and being in a whole lot of pain... i ended up coming of them. (No, I was not taking the entire list at the same time).

Medical marijuana - helps with pain management and keeps me from going crazy from pain! But still in a great deal of pain.

Vitamin D and Omega-3. (no noticed difference?)

X-ray #1: slight scoliosis at L2-3.
X-ray #2: minimal lower thoracic scoliosis and ddd
MRI: schmorls nodes between T6-%12 with disc space narrowing and loss of disc signal, T10-11 moderate broad-based disc bulge + posterior osteophystes causes mild cord compression, ddd T6-T12, partial wedging T11, T10-11 herniation with mild cord compression. (This mri is about two years old).

*noticeable events
-Rear Ended by truck 8 years ago
-Serious weight lifting/bodybuilding starting around 16 (with a professional trainer)
I don't really know what to do right now. My parents are pushing me to start exercising but for some reason i can not find it in me to do it. Like I want to mentally (I had even bought a station bike to use at home, but it did not end up getting used us much as i thought i wanted to).


  • gr33zyincggr33zyinc Posts: 37
    edited 11/12/2015 - 11:00 PM
    Anyone have any ideas? Suggestions? Dealing with something similar? I'm lost.
    Also remembered and thought I should add, been having weakness in my legs and some balance problems. I also feel like i am clumsy/fumbling things.. such as going to picking up a pencil or spoon and dropping it, or going to put a cup in the sink or cabinet and hitting the side of the sink/cabinet instead of placing it directly inside.
    As well not remembering things as well, I'm not sure if its an actual memory issue or if I'm in so much pain i can't think straight. I'll wake up *some* days and not even know what day of the week it is, or someone can be talking to be say something to me - i will respond and literally five seconds later have to ask them again because I have no idea what they said, watching a tv show and by commercial break not remembering what I watched, or watching a tv show and the next day not having even the slightest memory of what happened.
  • Can I ask why you're not a candidate for surgery right now? Is it the broad based bulge causing the problem?
    It's so frustrating to see so many people just left in so much pain....
    Really hope you find some relief soon.
    Kirsti x
  • SavageSavage United StatesPosts: 5,427
    edited 11/13/2015 - 5:55 AM
    Curious...who is prescibing the medical marijuana?
    I think you mentioned slow to get doctor appointment...is that primary doctor?

    I'm a little confused as to why you are not continuing with pain management.
    Did doctor drop you? Or you quit?

    Seems like you would need follow up with pain management specialist with all that you are experiencing.
    I big believer in specialists. They've helped me very much.

    My sleep..more specifically, lack of sleep, was so crazy making. I was so irritable and wide eyed, ..wild eyed.
    Pain management sent me for sleep study and although I didn't think I slept well, he still saw something and able to medicate me.
    Now maybe one or two nights a week no sleep, but that is so much more manageable, for me.

    I can relate to the clumsiness you describe, the forgetfulness.
    I'm memory impaired. After having couple of different testing, the thing doctor told me to get medi-alert.
    He wanted on my medi-alert was, "Memory Impaired".

    I added that medical info is in my wallet...as I'm horrible historian about my own health issues and experiences.

    Have gut issues myself, sometimes difficult to discern, but I believe much of my persistent nausea is from the pain itself.

    I too have weakness in legs and more so if I'm carrying any kind of weight in my arms. For me, it is spine related.

    If I understand correctly, you're hesitant to take medications.
    Taking meds does not need to be a forever thing. Often time the meds can get the symptoms to lessen or become more manageable.
    Meds may be able to stop the spiraling and again, become more manageable.

    Although I also have history of strokes, my above shared symptoms with you I experienced prior to stroke activity....and I continue to experience.
    Again, mine spine related.

    Spine-Health Moderator
    Please read my medical history at: Medical History

  • gr33zyincggr33zyinc Posts: 37
    edited 11/14/2015 - 8:13 AM
    Savage said:
    Curious...who is prescibing the medical marijuana?
    I think you mentioned slow to get doctor appointment...is that primary doctor?

    I'm a little confused as to why you are not continuing with pain management.
    Did doctor drop you? Or you quit?

    Although I also have history of strokes, my above shared symptoms with you I experienced prior to stroke activity....and I continue to experience.
    Again, mine spine related.
    Got the medicinal cannabis from another doctor I saw before. Pain management clinic dropped me as a patient, saying they were giving me meds that my regular doctor could give me. I tried anesthetic shots down my back, it pretty much took the pain away but only lasted 2-3hours maximum, so there was no point in continuing.
    I was taking medicines, but it was overwhelming where i was taking a pill almost every hour. I was having a very rough week, and wasn't able to get an appointment in time, so i took the pills i had left and weened off them in a tapered manner as slowly as i could. I am now starting to think I could really use them again.
    I've been telling myself to make an appointment now for two weeks but haven't got myself to call in the office. :(

    I'm not really sure the exact cause of the problem. All I know is that I am in a whole lot of mind-numbing-pain. I only have one MRI about 2-3 years ago and at that time they said no surgery. I deathly afraid of that scenario :(.
  • gr33zyincggr33zyinc Posts: 37
    edited 01/15/2016 - 10:06 PM
    Had another mri, everything has progressed slightly worse. Disc protrusion in thoracic spine with cord compression.

    The last surgeon I saw was aware of the disc protrusion, but said they saw it as a greater risk to get the surgery done (Can't guarantee if I would see an improvement in pain, and also couldn't guarantee whether I would not be able to walk again or not if I was to go through with it).....called it "A Very Big Surgery".

    Lately my cervical spine (neck) has been bugging me more and MORE, with a fairly similar feeling as that of my Thoracic spine, however no one seems to acknowledge that.... is it because they will NOT even EVER consider Cervical spine surgery unless you are basically already almost paralyzed? (from what I understand)

    ...so even if they go in there and fix my disc protrusion at my Thoracic spine, how do I know how any other parts of my spine will react? As well, my pain doctor said even if the protrusion was fixed, they would have to determine if that is actually what is causing my pain... as I also have dis degeneration in that area.

    I'm basically living in hell.

    What I don't seem to understand is, okay..disc protrusion in thoracic spine and I can FEEL that believe me! And whatever is happening in y cervical spine which won't be investigated. However, this does not seem to explain why almost all my muscles are almost always sore or tender (my back anywhere, my quads, my calves, feet, hamstrings...EVERYTHING?!)

    I was given more referrals however the new; sports injury specialist as well as the rheumatologist both declined my referrals saying they could not do anything for me. So here I sit....not knowing what to do other than attempt to mask the pain to the best of my abilities (with doctors help and meds).

    The only good thing is the amazing pain family doctor I have who has been helping me quite a lot... went from almost 4+weeks of being up ALL NIGHT, to finally now being able to sleep on time through the night. However the pain is still there!

    To keep all responses together I have linked the member's 2 threads


    Liz, Spine-health Moderator
  • Betty65BBetty65 FloridaPosts: 83
    Just read your posts -- ugh! Sounds like you are having a very hard time of it. Unfortunately, maybe because you are so young the docs hesitate to treat aggressively? I dunno, but just wanted to let you know I read your stuff and will keep you in my prayers. There's got to be a doctor in your area with some answers. Hang in there!
  • Oh goodness, I'm on my third year of chronic thoracic pain that is undiagnosed. MRI and X-rays done with no issues found. I've seen a spinal surgeon who told me I had a strained trapezius muscle (he didn't even do a physical examination) and am scheduled to see a reumatologist next month. Cymbalta, neurotin, torodal, tramadol, and a muscle relaxer that I can't remember the name of, all haven't helped. Looking for answers and right now I can't seem to find anyone that can help!
  • MynameiskaitlinMMynameiskaitlin Posts: 2
    edited 01/20/2016 - 2:17 PM
    Also, I've seen a chiropractor 1-3 times a week for almost 3 years. Have started deep tissue therapudic massages within the past 5 months once weekly. Pain worsens with excersice, standing up at the counter in the kitchen cutting vegetables, sitting in my chair at work which is an ergonomic setup. I even bought a sleep number bed after being told I probably just had a bad mattress.
  • SavageSavage United StatesPosts: 5,427
    edited 01/21/2016 - 6:50 AM
    Welcome to Spine-Health
    Please click on link for helpful information!
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • dilaurodilauro ConnecticutPosts: 9,848
    edited 01/21/2016 - 8:03 AM
    Just to make sure, the current set of diagnostic tests have not come up with any positive? So, at this point, the doctors are basically telling you there is nothing spinal,disc or bone related?

    Have you had any physical therapy? One of the better treatments for muscle problems is PT. But you said this has been going on for over 3 years. Have they suggested any other diagnostic tests?

    You will get a mix reaction regarding your visits to a chiropractor. Most of the folks here will say that once you have been identified with a spinal problem, specifically disc related you should hot be seeing a chiropractor. They could potentially cause more harm.

    Thoracic problems can be very tough to deal with. I have several herniated, but I dont see any surgery coming up. The only treatment that gave me relief was from a Thai master of soft/deep tissue massage. He needed to get the deep rhomboid muscle to be pliable, thus providing some relief on the strain of my Tdiscs. But that was my case. It took several years of trial and error before we found something that worked.

    Standing can be one of the worse postions. I cook most of the time, so I am always standing at the kitchen counters or stove. We installed extra cushion tiles that give which helps me. Plus I have a small foot stool so I can keep one foot off the ground.

    As far as workstation activity. I was a programmer and in the computer field for over 35 years. There is no such thing as the perfect workstation.
    What always works best is to make sure you get up and move away from the workstation at least every hour. Do some walking and stretching before you return.
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • itsautonomicitsautonomic LouisianaPosts: 1,806
    If you have cord compression it may not be surgury worthy dueto the risks , but I am trying to understand why they do not feel that could be why the issues in lower extremeties are occurring? With cord compression all bets are off, I hope you are seeing neurologists also outside spine surgeons for this.
    Also as I learned when I had thoracic issues not all surgeries have to be invasive to that area, they were going to be able to access mine for discectomy without removing a rib , deflating lungs or any of that. My road led to another path for which I am glad, but you truly need to be talking to a thoracic specialist if surgury is something you are considering , I'm talking someone with 50 or more under belt.
    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.

  • dilauro said:

    Just to make sure, the current set of diagnostic tests have not come up with any positive? So, at this point, the doctors are basically telling you there is nothing spinal,disc or bone related?

    Have you had any physical therapy? 

    I did 1 year of PT with one highly regarded physiotherapist, and saw absolutely zero improvement. I then did another 1 year with a different physiotherapist who was also supposed to be very good, but zero improvement. I did then another year with a RMT doing myofascial massage and yoga positions. (I would feel better for maybe 1-3 hours after the day I saw the physiotherapist, but then just got back to how things usually are.

    I had a specialist say possibly scheuermanns, and a different specialist say not scheuermanns. Mri shows thoracic disc protrusion with spinal cord pressure. (I have an EMG booked soon so maybe that can rule out nerve problems) Although the neurologist that booked the emg did not think it would show anything.

    Lately (thankfully) my thoracic spine has not been bugging me as bad, but the pain seems to have moved up to my neck (cervical spine) and tight muscles around my neck.

    I'm on more aggressive medicine now, it helps somewhat better, but i honestly do not like taking it and do not want to be taking it. (But what else am I supposed to do?)...and then other meds to help the side effects of the aggressive meds (yay -.-). I had to drop out of university from a really good accounting program. Most times, I can barely cook an egg or make a sandwich -by the time I'm done preparing the food I feel like I need to lay down..so much for eating.
  • rcowan92rrcowan92 Albuquerque, NMPosts: 3
    I am sorry that you are having to go through this. I am in the same predicament as you. I currently do not work and do mininal hours of university work. My pain is very similiar to yours only it mostly occurs in the bone of my legs in the thigh area and shins and travels up my buttocks and lower back. I have been to so many doctors and they cannot seem to figure out a treatment plan for me and its frustrating. Everything you have named on your list are all the same things I have taken. I cannot consume NSAIDS becauze I had a gastric bypass and its frowned upon by my bariatric surgeon. Also have a family history of kidney disease, so my only best bet is Tylenol and Gabapentin which both do nothing. I have tried medical marijuana as well and the only thing the works for me is the topicsl ointments and creams but when I smoke it makes the pain worse which is weird plus I have never been a fan of marijuana. It makes me hallucinate and trip out. However, I really dont know why your pain specialist doesn't have you on an opioid like oxycodone or vicodin. Usually when they give injections they'll put you on a narcotic. However with all the abuse and overdosing its hard to get a narcotic unless you are in the hospital. It's sad how others have ruined it for those of us in pain and really need it. The DEA comes down hard on doctors along with the FDA and CDC. I recently read an article that opioids are discouraged even post-operatively. Have you received bio-feedback? Maybe try going to a neurologist or try Kratom! I hope it gets better for you and good luck! 
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