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sick of it

custompaintdaveccustompaintdave Posts: 17
edited 06/11/2012 - 9:00 AM in Chronic Pain
I have been hurting for over a year and Drs cant find any cause. I have lost my job due to whatever is wrong with me. On most days I am unable to get out of bed for more than 30 minutes before hurting so bad I can barely make it back to bed. I have seen Rheumatologists and Neurologists but the only diagnosis I have gotten was Myelopathy because my reflexes are hyperactive and crossed according to two Neurologists. They both thought I had MS or Devics syndrome but all tests came back negative. I hurt mainly in my lower back/tail bone area and arms/hands. I also hurt throughout my body in what seems like all joints from toes to neck. The Rheumatologist could not find a cause either. I am just so sick of hurting all the time it has ruined my life. I cant even hold a book/magazine to read because my arms/hands hurt so bad. I cant sit for more than 20 minutes without my back hurting so bad I feel nauseous. All tests have been normal (spinal mri, brain mri, spinal tap, emg of arm, upper and lower body evoked potentials test, numerous blood tests.) I don't know what to do next. I go to a pain clinic but all that does is semi-mask the pain. All I want is to feel normal again but that seems to be too much to ask. I have almost reached my breaking point to just cry endlessly.


  • Hi

    So sorry you are feeling so bad. I really do feel for you it must be awful not knowing what is the matter. Pain really wears us down. I am glad you have found this sight it has been such a comfort to me. Have you been tested for things like me and fibromyalger. I would like to chat to you more. I am in chat room if you see this before going off line.

  • dilaurodilauro ConnecticutPosts: 9,856
    They are sending you to a pain clinic, but yet they have no idea why or what could be wrong with you!

    Sounds like you have been to many different areas of medicine to get diagnose. I have to assume that you had tons of blood work done prior to seeing the Rheumatologist. They depend on those results, while some of the other disciplines to go on clinical exams and other diagnostic tests. But it sounds like that is even clear.

    I would just ask your doctor(s) OK, whats next? Since so far nobody can identify my problem, who should I turn to to get to the bottom of my problem?

    At this point, I would not leave any stone unturned.
    Look at various Alternative medicines and treatments.
    Some people get great results from simple techniques such as Music and/or Aroma Therapy, Relaxation and Meditation Therapy. Also seeing a psychiatrist to explore the emotional side may be helpful.

    Just dont give up until you find the cause
    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
  • I am dealing with some of the same issues. I had injruy recently that hurt lumbar, cervical but there are small things on MRI that should not cause pain. My next step is Rhem. after nerve conduction test was good. Looking for an inflammatory process. I dont buy it as ive been through all this before but I am willing to try anything.
    I to get nauseous, and dizzy and many of my symptoms match MS but thankfully said thats not what it is.
    Did the Rhem. bloodwork measure thyroid function? I just say as mine is way off, which can affect nerves, pain response, give feeling of fibromyalgia.
    Good luck as this diagnosis process feels like an eternity. I am talking to mine and saying look its ridiculus that I see you in between every test, schedule them all if one is abnormal call me in. Shortened time up dramatically.
    Herniated T6-7, multiple herniations in cervical, tears in T5-T8. Stenois at levels and smorls nodes from thoracic thru lumbar
  • Yes they started sending me to a pain clinic after 6 months of no relief and eventually being unable to work. I have had so much blood work done I figured I would have a low blood count. J/k I have been to psychiatric counceling also and tried meditation/deep breathing. After counseling the Dr did not believe I have any underlying psychological issue. I have always had a high tolerance for pain and a general dislike of taking medication so for me to go to a pain clinic it meant the pain was severe but I know you would have to know me to believe this. One Dr has mentioned fibromyalgia before but my neurologist believes it is something else and has scheduled me to see another rheumatologist. The problem is I am now unable to work (terminated Jan 18th) and I have four children (age 4-12) and my wife has been unable to find a job. I am currently insured through my previous employer CoBRA policy but can only afford a few months of it. I have applied to use the VA Hospital (USMC vet) but cant get in until next month. I dread this because I will be starting all over again with new Drs. Not that my old ones really figured out anything. It is just so frustrating to be 31yrs old and pretty much unable to do anything.
  • Yea, Im 33 man I know. I would suggest you begin to gather as much of your scan's and things you can get on your own to speed the process of transition up.
    I know each state has what is called conversion ins., its expensive, not as much as cobra but worth looking into.
    Herniated T6-7, multiple herniations in cervical, tears in T5-T8. Stenois at levels and smorls nodes from thoracic thru lumbar
  • I was told that thyroid function was normal as was everything else.
  • Hi there, I am more or less in the same situation, I hurt alot more for what shows up on my MRI. Plus now I have been told there really wasnt any need for a fusion, I would have been better without it..... but I disagree, it has got the pain level down, and I am not in the bed day and night, when I lie down I get relief before i didnt. Dont get me wrong I need to lie down during the day and still limited in what I do. What I want to ask you Have you been tested for Ankolosying Spondilitis, there is a blood test for this... The positive gene is HLAB-27. The reason I am saying this your symptoms sound very like a friend of a friend . She spent 10 years trying to find out what she had. This "AS" she was never tested for as it isnt that common in females. After 10 years she final found someone who listened and tested her for it. She is now living a normal life,
    the med she is on is Advil. Not claiming this is what it is, but it is worth a check to see if you have been tested for it. Also it takes years for it to appear on a MRI, all the discs fuse together, and it is to get it diagnosed at an early stage and prevent this. Good luck
  • I do not know if I have been tested for that but I will find out. If I have not I will ask them to. I have been told by two Drs that the new rheumatologist I will be seeing is the best. I hope it is true. I talked to my pain Dr today and she agreed that we will not leave any stone unturned until we find out what is wrong with me. She is also scheduling me for an injection in my lower back to see if it helps relieve the pain in my lower back/tail bone. The Dr she is scheduling me with is supposed to be very good as well and she believes he will be able to point me in the right direction to get a solid diagnosis of what is wrong with me.
  • SavageSavage United StatesPosts: 5,427
    It is often a long process in discovering cause of problems with body..at least that is what I have found.

    My docs sent me to pain management doc because they had no idea what was wrong..but did believe and know I was in pain.

    My pain doc also neurologist so he is the one that was able to find much that was wrong with my spine..and also several of my strokes that were missed for years.

    You said doc gave pain meds that semi mask the pain. I have found that the meds take the edge off where I don't get out of control and feel need for ER for relief..but only takes edge off. Pain always there just a matter of degrees.

    Best of luck as you are finding relief and cause for your situation. Please keep us posted
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • by the way a back fusion is for a very specific reason, your disc is herniated and pressing against the sciatic nerve. this shows up on mri's and also i recommend having a disectomey. they inject dye in your disc while your are semi awake and asleep. it hurts like hell but you don't remember it. if disc is herniated the dye will flow out of your disc and will show up. if you have had these tests and nothing shows up, then your problem is probably not sciatic pain and a fusion will not be done. if it is muscle related, they can do a nerve conduction test or have a cat scan. so for the most part, disc pain is easy to see for the most part. it was very easy to see on my mri, the disc was herniated out for a long distance and also showed up on disectomey. is you pain muscle or nerve related? see another orthopedic dr, back specialist, to get a second opinion.i guess some problems will not show up but for the most part they do.
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
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