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It's all in your head

I'm at my wits end. It's hard not to get depressed with it all. You go through so many different types of testing and specialists and no one can seem to find anything wrong with you. Yet you know that there is something wrong because you live with it each and every day. The pain is crippling and you describe it over and over again but the MRI don't find it. It's not in my head!! It is there and it is real but how do I get them to see it? It's chronic and I can't take it any longer.
I've seen a pain management, a orthopedic, now a neurologist.
Has anyone else gone through this and lived? Lol...
I need advice
Wendy
Wendy Reed
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1

Comments

  • dilaurodilauro ConnecticutPosts: 13,425
    Hi Wendy,

    Your comments are statements we read here all the time. You've been to the right set of doctors that will help identify your problem. I assume they all have access to your MRI to make their decisions. Did you have an y other diagnostic test done? What where their findings, what have they formally diagnose you with?

    The hardest thing to accept is that after your set of doctors can not find any problem, then do you have a new set of doctors that can view test you results. Please keep in mind, that after all doctors have reviewed your case and can not find any problem, then I would ask the doctor what he believe should be t he next step

    We know you have pain. you know it, now you need to find out why

    Real or Fake? Is it in your head?
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences 
  • memerainboltmemerainbolt IndianaPosts: 6,240
    Hi Wendy!! I know how frustrating this can be. As Ron said, we know you are in pain and you know it. Don't give up searching for an answer. This is all about you, your life now and your future. Do what you have to do even if it means second, third, even fourth opinions.
    Don't let this discourage you but it happened to me many years ago. After 17 doctors, and yes talk about frustrating, I was diagnosed with fibromyalgia. But when he told me all he said was you have fibro and walked out the door. So I found a good rheumatologist, he explained it. But he ordered an MRI and found a tumor wrapped around my spinal cord. That's where my back pain was coming from not the fibro. So that's up to 19 doctors, including the surgeon.
    So the moral here is don't give up. When you go to your doctors give a very vivid description of what is going on.
    Good luck, hope you find an answer soon. Keep us posted.
    Sandra
    Spine-Health Moderator
    ---------------------------------------------------------------
    Please read my  Medical History
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  • itsautonomicitsautonomic LouisianaPosts: 2,561
    edited 10/24/2016 - 11:34 AM
    That's one of the reasons fibromyalgia isn't taken more serious, it's become the convienient diagnosis for many Drs lacking the time, experience, intelligence or effort to properly evaluate a patient. It's in my opinion a Drs get out of jail free card as it's very easy to say someone has fibromyalgia and a lot harder for the patient to proove they do not .  Even if you have fibromyalgia or fibromyalgia like symptoms if it's because of a root cause then the fibromyalgia is still a symptom of a larger issue that when addressed may clear up the fibromyalgia like symptoms
    @memerainbolt spinal cord issues are notorious for being given a fibromyalgia diagnosis .  Disgusting story for me to hear, but respect to that dr who found the tumor and yourself for trusting what your body told you
    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.
  • memerainboltmemerainbolt IndianaPosts: 6,240
    Thanks Itsautonomic. And that's what I'm trying to say to Wendy, trust your body. Doctors only know what you tell them, be adamant. Don't stop until you have an answer you are comfortable with.
    Sandra
    Spine-Health Moderator
    ---------------------------------------------------------------
    Please read my  Medical History
  • Thank you all for your time and comments. I had another MRI done today and it took over two hours because I was having muscle spasms and twitches so bad that they couldn't get a decent reading. To lay down like that was excruciating. To explain further to you, I have muscle spasms 24/7 and double sciatica. My hip bones feel like someone has punched them. My lower back is swollen or feels like it is. My buttocks feel like they are on fire. I can't sit for very long and I can't stand for very long.
    I fall for no reason. I can't sleep and I have twitching. I am beginning to lose control of my bladder and bowel. My back is tender to the touch.
    My walk is gaited. If I stand or walk for a period of time, it takes all I can do and it whips my hind end.
    So that about sums it up.
    Wendy
    Wendy Reed
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  • memerainboltmemerainbolt IndianaPosts: 6,240
    Glad to hear you got another MRI , hope you get an answer soon. Keep us posted.
    Sandra
    Spine-Health Moderator
    ---------------------------------------------------------------
    Please read my  Medical History
  • I've recently found out that I have fibromyalgia and you situation certainly sounds similar to mine. For a long time doctors couldn't figure out what was wrong, and it was frustrating having to explain myself over and over again. I recently started using laser therapy treatments to help deal with the pain and I've noticed a big difference. Hope you start to feel better soon.
  • memerainboltmemerainbolt IndianaPosts: 6,240
    Thank you yvonnec! I'm not in no way making light of laser therapy and have often thought why don't they do this on pain patients. All of this came to lite after my dog tore her ACL and had surgery. One week after surgery the vet did laser therapy on her. She loved it ( golden retriever) !! Just pranced right out that door.
    Will definitely discuss this with my doctor next week. Thanks again.
    Sandra
    Spine-Health Moderator
    ---------------------------------------------------------------
    Please read my  Medical History
  • Thank you all for the advice... It gets so frustrating when you explain your symptoms over and over again only to be told there is nothing they can do for you. You know that there is and and you you just want to scream. Your whole life has been changed and you feel like no one understands. I am so glad I found this forum.. My neurologist is thinking that I have a spinal compression. So that's a start.
    I will be adamant about my care. They have to listen just as you said memerainbolt.
    Thank you again everyone..
    Wendy
    Wendy Reed
  • texbookiettexbookie TexasPosts: 9
    edited 10/26/2016 - 12:26 AM
    Wendellsue...I understand completely.   Went to pain doc today to review results of latest MRI.  I was expecting that it would show osteophytes and/or cervical stenosis which would account for my continued pain following ACDF c7-c5

    No  my results were normal.  I  couldn't help but cry because I felt like it was indicating that my pain is all in my head, no pun intended.   Despite the MRI results, the doc is going to do spinal blocks around my fusion sites and if that helps, and my insurance approves it, he will do RFA to help with pain. 

    I  guess my message to you is hang in there, it is not in your head, you are not a hypochondriac, and if you aren't getting options from your doctor, find another one. My 1st doc wasn't helping me, so I  found another one who was willing to listen and respond to my needs.

    Good luck!
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