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Real or Fake ?? - Is the Pain in your Head???

dilaurodilauro ConnecticutPosts: 9,856
edited 09/03/2015 - 5:34 AM in Chronic Pain
This is a big topic on these boards.

I dont think there is much of a question when diagnostic test results all come back positive and can pinpoint to where the root of the problem is. Then, the medical field can start the wheels in motion on how to correct that.

But, there are so many patients that are having pain, go to see one or more doctors, have tests done and everything comes back negative.
In simple terms, that would mean,

No Trouble, Patient should not have pain

But we know that is not always the case. There are patients who have real problems but for whatever reason the standard set of diagnostic tests do not reveal anything. No herniation, no spurs, no inflammation, no nerve damage, all blood work normal, etc What then?

Some doctors may dismiss the notion that there is a real problem and communicate that to the patient. Its in your head What to do?

I think there are a number of options here

  • - Understand that there is nothing physical wrong that should be causing pain, so start to look elsewhere
    - Continue to find other diagnostic tests to prove or disprove your condition.
    - Dismiss your doctor and find another one
    - Blame your doctor
    - Look at alternative options
    - The patient wants to have pain
    - The patient refuses to accept the findings
    - etc
I dont think I could comply a list that has everything.

Who's wrong or right here?
I dont think its a wrong/right situation, but more of a diagnosis based on facts at hand. The doctor has run all the tests that they can justify to the insurance companies, so now they have exhausted their means. Diagnostic tests are very important, but I think most of us would agree that they may not always be 100% accurate. There is a combination of diagnostic tests results and excellent doctor diagnostic clinical skills that can make a difference. You want a 'hands on' doctor, someone who will touch you, see yo move, feel your bones, test your strength, etc. There are times when test results show nothing, but clinical examinations indicate something.

Then we also have the situation where the patient just wont accept anything except bad news. They hurt and they want to be told that there is a problem and this is what is going to be done to fix them. They want every diagnostic test done, if not once, 2 or 3 times. This is where insurance costs can raise IF these additional tests are approved. Ok, the patient hurts, nothing, no matter what tests, examinations, etc are done indicates that there is any problem. In those situations, I do believe we have to look to the patient as being part of the problem. Perhaps they want to hurt, they want to feel pain. Why I have no idea.

But, I think this scenario can make things frustrating for everyone. The doctors want to address problems, they want to make people better, The patient hurts and wants to not hurt.

Are they doctors who do not take the next step in finding answers? I am sure they are
Are they patients who refuse to hear that there is no problem? Again, I am sure they are.

We have chemical medicines to help people in chronic pain, why not accept the emotional medicines (ie counselor) to help people understand their condition.
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: 1,807
    I am glad there is this topic , but I do not agree with the classification. If you read the information that is out there, it does not support this. The new studies on the human brain are showing that even in the small group that is negative for all tests , if the mind perceives the pain as real it is real and seeing a physc is only one step . That pain is just as real as yours and mine and has to be treated as such. I am excluding drug addicts, I am excluding patients who want to be in system as I have never actually met one of these people who didn't want to get better and their life back. The brain and pain are more complicated than any of us, including doctors realize. The studies on brain in my opinion will reveal so much over the next 50 years and so many will be validated with new technology. I find the bigger issue is the doctor not being able to admit there is testing outside his realm, maybe at teaching hospitals, that he isn't capable of or just doesn't practice or have technology to fix. Two of the most important breakthroughs in my life are the result of a doctor letting go of his ego and sending me to specialist even though for both hip and neurological problems I had been through all the required testing . I like to say it saved my life in one case and kept me working in another. The real problem is the ability of doctors to have the knee jerk reaction and say it's in the head simy due to their not being able to find issue. If you drove the same truck all your life and it suddenly started to not work right yet the mechanic couldn't find issue. Is the person who has used this car for years and years wrong or is the mechanic? The mechanic will do his standard checks and it may reveal nothing, but shortly after the car finally gives out and then something is revealed, then it's fixed and on its way. We don't have that luxury to wait till we fall apart.
    I support doing your due dillegence and seeing physc , but when they say this issue does not stem from head yet doctors still say they do it's time to move on. And I truly think it should be legal to involve litigation if something is found later that was reason. Those words " it's in head " can destroy people less strong than others and worn down . There is a responsibility by doctors to do no harm, saying it's in head before seen by true mental doctor is wrong. As I said before not one doctor lost sleep that I was diagnosed with something real and terrible after they said it's in your head. It's not rare for people to go 3-7 years to find true cause. We should never minimize what that does to a person
    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.
  • dilaurodilauro ConnecticutPosts: 9,856
    edited 08/31/2015 - 5:38 PM
    I agree with what you are saying about studies and testing.
    But I am also talking about reality , what is happening in the doctor's offices, hospitals today, including teaching hospitals.

    I do wish there were more concrete ways to ensure all testing is done. And there is no question, with some medical professionals, specific testing may be out of their realm of expertise. Thats when you want them to call for the next level of help. I am a firm believer that test after test after test should be done until everything is exhausted and then test some more. But when that is said and done, and nothing is found? What is next??
    itsautonomic said:

    If you drove the same truck all your life and it suddenly started to not work right yet the mechanic couldn't find issue. Is the person who has used this car for years and years wrong or is the mechanic? The mechanic will do his standard checks and it may reveal nothing, but shortly after the car finally gives out and then something is revealed, then it's fixed and on its way.
    Love that, but I will offer a different twist to that.....

    • - Same car, runs fine, but starts to have some problems
      - The mechanic looks at it, runs the diagnostics, but cant seem to find a specific problem.
      - You run the car some more and then finally it breaks down
    I could list a hundred reasons why that may have happened after the mechanic looked at it. I have family members who do this for a living and it happens often. Some problems are there, then they start to manifest and build up until the finally do it in. The mechanic had no idea that was happening.... should they? could they?

    But we are talking about human beings here. Pain hurts, for the sake of this statement, I am not interested if ifs real or fake. It hurts period.
    I just believe that no one wants to be shrugged off with Its all in your head

    Unfortunately, in today's society women have it so much harder than man do. A man could go to their doctor complaining about chest pains. The doctor starts to make sure all tests are done, medications identified, follow up plans are set etc.

    Now a women who has those exact same symptom, goes to the doctor, and many times the response is

    Oh dont worry about that, its normal, you are over reacting... it will pass

    And that type of example is not fiction, it happens every day. I dont know how that is going to be corrected, but it needs to be.

    How can all of this be fixed? Aaron, I know with your background and understandings , you would have some definite positive actions to help this.

    My bottom line, its the same when it comes to pain medications....

    For those that have real pain ---- treat them
    For those that dont have real pain --- find ways to help them using different methods.
    Just dont give up on them.

    (Aaron, I do hope that we can sort of agree with some of the things I am saying here.)
    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: 1,807
    I stole that mechanic metaphor from a post of yours and just applied it to this one, i figured you would like it. Yes I agree fully on everything you said and if all the testing has been exhausted I really dont know what to say for that person. But honestly , you have been dealing with pain alot longer than I have, has there ever been a person you have met in PT, dr office , life that had chronic long lasting pain that didnt want it to just end any way possible? I know people exaggerate, let the pain consume them and become hypochondriac's or reasearch addicts ( Im guilty as charged ), but I personally have never met someone who was suffering terribly who at there core did not seem to want to get better and leave that behind, most I meet hate dr appointments since they go to so many. Again excluding lawsuit happy, drug addicts I dont know what to do about them.
    I really think if you are going to a long drawn out diagnosis problem you need to be seeing mental health expert early on just to help cope and they can rule out if its from the mental side of not. My real issue is that many people do that ( i went through this exact scenerio ) because they are happy its in their head cause should be easy to fix, but the mental health expert looks over their records, evaluations them and tells them the pain does not originate from your head, its contributing to your anxiety but the root cause is not mental. Then you sadly go back to doctor who said was in your head and they tell you they cannot do anything else for you. You did what they asked, you got evaluated looking for help , following the doctors reccomendation and after it proved wrong they just do not want to deal with trying to diagnose you. That is a very confusing time.
    I just ultimately think its wrong to give the "its in your head" diagnosis before letting the patient be evaluated by mental health expert. People cannot realize how devestating it can be a certain times in your journey. A doctor could simply say " finding out what is wrong with you is looking like it might take longer than I anticipated, we will keep searching but in the meantime I think getting evaluated by a physcologist would be beneficial in coping with this and help you with problems that may be arrising from the stress". Then if the mental doctor says we think this issue is generated from the patients mental health, it becomes easy to let the patient know after the evaluation this seems to be the root cause. The patient would be more than receptive if this held true to get some physcological help. They just want to be in less pain.
    I dont ever think negative in regards to the doctors that tried to help me, exhausted their expertise, sent me on to a specialist, or simply said I am not the right doctor to help you with this. But I still hold resent for the doctors that said it was in my head without mental testing and based just on negative testing and the fact that I said I was stressed and depressed because i am hurting so much. They crushed me and made me doubt myself and my body. I have real problems still today dealing with those scars and the memories of feeling crazy for what was happening to me. I had mental health experts saying I needed to continue searching with other doctors as the root was not mental and I didnt have a mental health disorder besides situational depression and axiety both created by pain and uncertainity that I did get treatment for with them, and I also had some of the other doctors saying it was in my head still. I had no idea where to turn,, but I just wanted to find out what is wrong with me.
    I dont mean to ramble , but I have seen the destructive implications of this in my own life and in other neurological forums , where the diagnosis do typically take a long time and several doctors. I have seen it here somewhat also.
    I do agree women have it worse in way they are viewed by male doctors and honestly as a man, I am glad I see a female neuromuscluar doctor, the compassion is endless and she would never make a statement such as "in your head " without first having me evaluated, which I have and we agreed I needed help coping, but the pain was real as real could be.
    I do agree in reality what is happening in many places is not what you hope for, but thats where legal would come in, if a doctor knew if he made the statement its in your head without evidence from a mental health expert they could be in danger of litigation or suspension it would be a scope change across the board. And I am not a huge fan of anything with lawsuits , but I think this issue has gone to far and has to be checked.
    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.
  • And I. On ur with your guidance as well Ron.

    As a 42 year old female who has been on this journey since 30, I can relate to this topic well. When I went to the doctor at thirty, I was told it was in my head. I was crushed to hear the diagnosis, but as the pain was so unbearable in my back and this man, this doctor was the expert..I accepted it. The doctor did not tell me this information. We were in the hospital at the time and he told my husband. I cannot tell you how heartbreaking it was for my husband to put his arms around me and the courage it took him to tell me the diagnosis. I accepted it and had to counsel my husband that it was okay, I would seek out mental health care and get this fixed of course.

    Thank the lord another physician, my general, heard I was seeking help finding a good therapist and decided to run an Mri. He simply did not think my clinical exam merited the counseling and that something physical was wrong. It was, it was my back and since that moment I have pursued and succeeded physically with treatment. The relief was incredible and I was beyond grateful. My husband still feels shame about this entire moment, as you can imagine.

    I've had some wonderful life, with many pain free moments. We have learned I have flare ups of pain that sometimes go away, sometimes require surgery. Currently I'm about to have surgery for another level. I and my doctors think I will be right as rain, very positive.

    If anyone doubts that I have not examined every aspect of my back..if I have not wondered if I seek to be constantly hurt or if it is real, then I think they are a fool. Everyone in chronic pain that has a thinking mind would pursue this issue because it is that consideration that proves we are not seeking the situation.

    I really like isautronic comment and said it myself. I do believe when a doctor is going over the process of here are your new meds, here is your physical therapy regiment, here is your Aqua therapy, here is back brace; now my dear, let us discuss the mental side. Here is the list of exceptional psychologists who specialize in coping with chronic and acute pain. They also provide family therapy for the caregiver in your life. Missy, as it is imperative that you do not overdo, take your meds exactly as prescribed, it is vital you see the therapist and talk about how your feeling. That way when the stress of break thru pain occurs, or your loved one sees you in pain and has no words..this therapy will be your life line.

    Isautonic, I wish you peace and serenity to let the demons of those dark days go. I really appreciate you sharing them, because sadly I'm comforted it wasn't just me. But I will not hold any of that time against my old doctor any more. I know that doctor has forgotten me, probably did that day. So keeping that upset in me will just be bad for me. Thanks for the post and the comments.
  • itsautonomicitsautonomic LouisianaPosts: 1,807
    2dgs4cmpany, thank you for your words and there are really to many of us out there and many still hearing it today. I am in kind of a wierd situation where I have let go anger to the doctors, but as crazy as this sounds I am going through the process of peeling back the layers and it seems there is a chance I deveolped some PTSD ( post traumatic stress disorder) type issues from a combination of the injury ,losses and wouldnt you know doctors saying it was in my head. But I dont want to make light of it as in my worst moment of hurting and burning all over and feeling like it was in my head I decided to be gone was the only solution because it was all in my head and i must be crazy, i had a moment of weakness that I am glad I snapped out of and said " I know something is wrong keep pushing" , without that I would not be around anymore if you know what I am saying. Not proud of that moment , but I like to put it all out there so it might help others. I am a 6'4 , former athlete, great work history, great medical history of following doctors rules, I herniated discs in my thoracic spine and still got engineering degree in pain everyday and got off disability to return to work. If anyone thought it was in my head and doing this for some other reason they are also fools, I just was looking for help getting my pain under control and figuring out what is happening to my body. I was left with permanent damage because of doctors not listening and believing me. I am working to let go , but its going to be a long process.
    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: 1,807
    I am actually really sad no one posted to this. I've talked to so many here that experienced it yet no one posts ? This is your chance to create a dialog and talk to others . Very disappointed since when I was here going through the issues so many voices similar told to them in their journey
    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.
  • Thinking of you isautronic and hope some people who have had your similar journey have just been away and jump in here soon. Grieving these traumatic events is so important and these forums are therapeutic..come on people :)
  • itsautonomicitsautonomic LouisianaPosts: 1,807
    I agree, to me silence is consent to me and I don't consent with it when it happens to people. I wonder if the title of the thread should reflect the " pain is in your head" somehow , i am guessing people might not relate the current title. Not sure but I know there are more than two people its happened to on here. Oh well, thanks Dilauro for giving a subject that seemed like a big topic over the years and one I was excited to talk about.
    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.
  • dilaurodilauro ConnecticutPosts: 9,856
    edited 09/03/2015 - 5:35 AM
    I 've added "Is the Pain in your head?" to the title
    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 know I posted a response but I have no idea where it is.
  • SavageSavage United StatesPosts: 5,431
    ....psychiatrist on different occasions...all in my head.
    Early twenties I experienced unpredictable and severe right sided abdominal burning like the sun pain.
    Doctor could not diagnosis me, so it was all in my head.
    It was about 12 years later, I had my right kidney removed, as it was diseased, increasing in size, and only 8% functioning.

    Another time, about twenty years later, I was falling backwards and often during each day, with brief blackout, as I never remember falling, only open my eyes to find myself staring at the ceiling.

    First occasion, I was painting and fell off, backwards, off six foot ladder. I did not realize I would fall or did fall, until looking up skyward.
    Since my falls never caused me pain, at the time, I never learned until later that may have contributed to my thoracic and cervical issues and pain.

    Doctors worked me up for MS and such. Turned out they missed that I was having TIAs and mini strokes.
    So they sent me to two weeks of out patient depression therapy. I really believed I was going out of my mind.

    In retrospect, I appreciate all the therapy as it has helped me in my life of chronic pain.

    It wasn't until 2011, with last more major stroke, that my pain management/neurologist reviews my tests and saw the stroke and said evidence of being "riddled with past stroke activity."
    Even in 2011, the ER didn't diagnosis me, and thought I was reacting to what they thought was already too much pain medication. I mean I couldn't speak real words, could not hold myself upright. Had right sided weakness.

    But at least my PM found it and I was not left with further thoughts of going crazy.

    When I was in my mid forties, I endured chest but mostly upper back pain for about two hours before going to ER.
    My friend who was with me kept giving me like maloxx ( spelling?) thinking I had indigestion. ...something I've never experienced, even to this day.
    But anyway, went to ER, they walking very slow, said they'd give me aspirin as "it is probably nothing".

    I started agreeing with....yeah, maybe my gall bladder needs work up...and I'm like apologetic for being there.
    Then suddenly, lab work came back with enzymes out of sight and many people entered my room, IVs, medications, and such and had angiogram within 20 minutes.

    In 2007, I had severe abdominal pain, and other gross symptoms..... Tests showed nothing and they ready to send me home.
    But my primary, knowing my history, said not to send me home and to do such and such a test.
    It was discovered to have ischemia of large intestine and was hospitalized for a week.

    Those are just few examples of me not being taken seriously, and then not taking myself seriously.
    The good of those experiences is that I have grown to trust myself and keep repeating my situation until someone listens.
    And now I have great doctors, who understand and that's huge! Priceless!

    The frustration is in knowing that my experiences were not unique and I think should have been picked up by professionals.
    But no matter what was happening, I would hear, " but you look so good."
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • Great title - fantastic ground to cover - so many interpretations from medics to laymen.......Take a scenario without being specific to origination.....Results of many M.R.I. investigations revealed - Herniated discs - Facet joint arthropy - Osteophytes - Schmole's nodes - Spinal stenosis - Lumberisation of L5S1 - Vertebral Haemangioma's - Active Denervation in fact the medical diagnosis was "Extensive spinal degeneration"......... I have to say that I was told there was nothing within the M.R.I. investigations that would cause pain.

    So I would presume the pain and numbness is a product of not wanting to hear "Good News" and it is "All in the head".

    I may be a cyberchondriac in all this but really..........It's so easy to give out the label..."All in the head"/"Real or fake" for the unexplained or understood problem. (bet you don't publish this).
  • Hi Ivan, I was reading your post. I reread it again. I feel I do not understand what you are communicating. I'm here to support and find encouragement and or information in these threads. I was wondering if you were referring to your own experience? Are you trying to explain how long have you been dealing with chronic pain and how you have been treated? Are you just commenting on the other threads?

    Thanks for clarifying..oh, and I was immediately impressed with your spelling! Those words are impossible for me at 11:00am, let alone 4 in the morn! And I'm not trying to be argumentative or confrontational..I guess I feel embarrassed to ask in the first place, almost deleted this. But I truly read these posts and learn from them. I also love sarcasm, and wondered if that was the take? :)
  • itsautonomicitsautonomic LouisianaPosts: 1,807
    Its interesting because if this was a neurological forum I would estimate that 50-75 percent of the users would have been told this at least once on their journey for diagnosis. Maybe not as many here, but I am glad some it actually helped, ive never considered it helpful but maybe it forced them into mental help even if it wasnt root of problem. I just wish there was a better way to go back to those doctors who did say it was in head and let them know what actually was causing it and that them telling you it was in head was very hurtful and made you doubt yourself at a time when that was the last thing you needed.
    I love history so I looked these details up to just get you thinking:

    • Epilepsy was believed at one time to be witchcraft
    • Fibromyalgia was once thought to be a mental disorder. It was first described by doctors in the early 1800s. They wrote about a health condition called “muscular rheumatism.” The symptoms were stiffness, aches, pains, tiredness, and difficulty sleeping
    • MS / ALS first discovered and defined in 1868 by Jean-Martin Charcot, but ALS really was not in forefront until Lou Gehrig came out
    • First Xray 1895
    • Parkinsons discovered and coined in 1897 by James Parkinson
    • 1902 first mention on ADHD
    • 1906 first documented case of alzhiemers
    • DNA discovered in 1951
    • Autism and schizophrenia were thought to be linked until 1960's
    • COPD coined around 1965
    • Lyme disease discovered in 1970
    • First MRI 1977
    • Table tilt testing now used to diagnose autonomic disorder 1986
    • POTS coined in 1993

    This was just a quick look online for fun so details were not hard checked, but imagine how the discovery of many of these things ended "its in your head" for that symptom subset. Based on history of medicine the fact that a doctor of good consious could subscribe that someone's symptoms are only in their head seems irresponsible . If it follows , 50-100 years from now there will be another group of diseases or conditions not previously explained or previously diagnoseable that will be discovered in turn validating many past patients symptoms.
    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: 1,807
    Watched a little documentary tonight called "pain matters" which aired on discovery channel. I thought it was pretty good and touches a bit on patients quest for medical validation
    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.
  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    Please forgive me, I had a detailed post going and my computer crashed. I have a horrible migraine which is making things worse!

    I have arthritis in my spine and knee stuff and a bunch of diagnoses that I had been explaining but, computers!

    So, here are the diagnoses which helped me get the best understanding of what I'm going through- reading it in the wiki is a bit over the top but it helps to understand. The first diagnosis is Chronic Intractable pain. It's like PTSD to the pain receptors. The next is central Pain. It's as a result of early insult to the central nervous system- I was 8 when I broke my back. And the last is allodynia (looking up the right spelling makes me computer angry!) But in all, while I have a lot of tissue damage my body is interpreting more pain than is necessary- my pain/pain center is over working. So, it is in my head since my brain is in my head but my brain is miss firing.

    The pain is very real. It is treated in much the same way as pain of breaking a leg or back but the tissue damage will appeared more healed. For reasons I fail to understand, every other organ in our body can have issues and we can treat them but when our brain breaks down we are supposed to be fakers? No. Absolutely not! But definitely look into the cognitive behavioral treatment for chronic pain. We can learn to reshape our brain's interpretation of pain. It's not a cure but it's another tool in our boxes of help.

    And each time I think of it, I'm going to thank Dilauro for mentioning "aromatherapy". It's not my cure but boy does it make me feel better in some ways! Thank you! (Lover of peppermint, eucalyptus, lavender, and tangerine oils!)


    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
  • itsautonomicitsautonomic LouisianaPosts: 1,807
    While I am 100 percent with you on the central pain having components in the mind as I also have it from my spinal cord injury, the pain is not 100 percent due to the mind breaking in many cases . does it play a role , definitely but central pain can be caused by many things. The only way central pain is fully in the mind is if the initial trigger is removed completely and the loop of pain continues in the brain and nervous system . It's a very complicated and detailed subject that has so many facets to it. Like you said it's a varied approach but be sure if you are not properly diagnosed the treatment doctors will try often fails if the person actually has centrally mediated pain which sadly leads to the " only in your head" in many cases.
    I am currently reading slot about how this type of pain can affect the limbic system of the brain. Very interesting as damage to this portion can actually cause loss of memory , cognitive problems, autonomic dysfunction , loss of problem solving, motivation , drive, libido, hormones, endocrine and reward complex. It is heavily involved in Parkinson's as the dopamine production shuts down.
    In the future medicine has to become more functional and treat the whole vs just the symptom in my opinion of how healing will begin for so many disorders
    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.
  • I feel very strongly too about this. I've had terrible experiences with doctors pretty much telling me it was in my head. But the most painful is my mum. She sent me a text a few months ago saying "how's your allinmeheaditis" :,( broke my heart. Another consultant was so rude to me but upon examination realised I has a serious problem and he actually said to me...you are in pain, I tried to trick you but you were consistent!!!!!! Then he sent me for an mri. It came back -4 prolapsed discs lots of nerve compression and pressing on my spinal cord. When I went back for results he WOULDNT TELL ME!!!! Just said yeh you've a few problems, go get acupuncture!! It was my GP that showed me the results. Unsurprisingly, after many complaints from many people, he was moved on & I have a lovely consultant now tho nothing much is being done. Apparently I too young - I'm 36 - but I need my quality of life Now!! I have three children & a job (now can only work 3 days) that I love. Seeing a neurosurgeon in 6 weeks, having a cervical epidural on Friday and shoulder steroid injections next month. My mum still doesn't believe me.
    Kirsti x
  • itsautonomicitsautonomic LouisianaPosts: 1,807
    edited 09/07/2015 - 1:18 PM
    Kirstij79, that is terrible. My mom thought I should just think positive and it would all clear up. Proper diagnosis is a strange thing, when it happens everyone who believed it was in your head seems to change their tune. But you cannot express this life to another, when you say back issues they relate it to the pain everyone has had not the debilitating type.
    I also hate that the doctors you saw seemed to be judging you before examining you.
    People and doctors sadly don't realize the pain that their actions result in. It's sad because if you had cancer the compassion would pour out and no one would question what is going on and it's affect. Regardless that cancer may be much less destructive to your quality of life than your spine issues. I say all this based on my experience with spine issues and then cancer. It was just thyroid cancer and it wasn't even a blip in my life compared to my spine issues. It just magnified for me the disconnect people have with spine issues and really any lesser know health issues.
    I wish I had some advice but it just takes a lot of tears, new doctors and lost relationships to get through it. I am currently dealing with same from my brother who all the family supported through his own medical issues that many discounted and now he is doing the discounting. Pretty sad but I know loss like the back of my hand and it's just another loss to hang on the wall in this crappy health existence. I'd be more shocked if something good occurred for me so I am used to it.
    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.
  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    edited 09/07/2015 - 2:38 PM
    My first injury happened when I was 8 and I dove into a shallow pool. My mother who was supervising us could not swim (the pool was only 3 ft) and already had too much to drink for the day. (She had an addiction and I cannot hold this against her!) Although my brother got me out of the pool the pain was something I still have traumatic memories of to this day. When my father came home from work he showed me what he did to strengthen his back (leg lifts, sit ups). No one took me to a doctor or called anyone. Both my back and neck would go into horrible spasms and racking pain but I was told not to tell anybody. I didn't tell a soul until I was 18 and had to start looking for medical attention and the nightmare began anew!

    Because my parents didn't do anything for the initial injury it was impossible to get any doctor to listen to me. To describe some of the atrocious ways I was treated in some emergency rooms would be to repeat similar stories to what Stephen King wrote. My life was Misery.

    being in horrible, debilitating pain is a horrible second only to being in horrible debilitating pain and be ignored, not acknowledged, doubted, not believed.... Just remembering the years of having to "prove pain" makes me nauseous.

    I had a nightmare last night where I had to move and I lost my medical records so no one would believe, again, that I live in chronic pain daily. Even when I know doctors cannot cure my pain I feel better knowing that I am believed. I would do anything I could if I knew any child were going through what I went through. It's different now in some places but definitely not everywhere.


    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
  • edited 09/07/2015 - 3:12 PM
    because you've commented on my posts...I am pleased to see this post from Ron, because this has been arduous journey....here I go: my original post and of course these are abridged and we can't fit all our emotions onto paper
    I start with I've been healthy, athletic, enjoyed being the one to be able to get up and go , take care of those who needed help, what ever it would be..mom of 3 on the go...what I will do from here is post my original post "my journey of disputing the medical professional"
    Here we go:
    In July I went out of work for what was to be a minor surgery out possible 6/8 weeks. Here I am 7 months later pain on left side no longer there... So what's the problem well 2 weeks into the recovery I started a very restricted PT . But noticed my right side started to bother me. So I had a post op MRI W /wo contrast now this would be my 4th MRI in September ... I had a pelvic, lower back, thoracic , 2 of lower back. Now I started to mention to my spine surgeon my right back and hip was starting to be painful so that's why he did the September MRI to rule out re herniation . It showed scar tissue near the root but he said wouldn't cause right sided pain and maybe there is minimal fragment radiologist says possible re herniation but again would affect right side....so he does a left sided epidural spinal block does nothing for pain but leaves me in bed with severe side effects and a spinal headache well since then and the PT my condition had worsened to before surgery... I did not have a fusion . Btw I am out of work and have now lost my position and pain just increases. So we order another MRI now do a different type of injection in the right side, no relief and at least side effects are tolerable ... So now dr is baffled ... I did Aqua therspy, I did land therapy any activity makes the pain worse I have been diagnosed with microdisectomy , sciatica, pelvic dysfunction, sacrilliac joint dysfunction , radiculopathy on right side, and my sacrum seems to be like an inflamed source of pain I can't sit long, walk long, bend , my husband lifts me up in the am from bed because sometimes I feel weighted like paralyzed and lately my arms are going numb like awakens me as if a pitch fork went thru the joints can't even do a full body stretch without pain barely sleeping ... So I was referred to colleague and at first he was very intrigued ordered spect scan and possible si injection followed up with him today totally different appt I wasn't on the schedule until the 8th , no it was the 5th, never reviewed films with myself and my husband said everything looks great but u have uptake near T 7 so I want you to have a cervical scan ? gave me a quick look over briefly talked I paid for a follow up visit and now suggests a rheumatologist who BTW can't see me until March . I'm losing my mind . Is anyone been through this ? I've lost a lot my quality of life, my job, which is income and I might add med benefits, just want the answer still no straight disgnosis I don't sit around all day I try to stay active but pain gets worse and no relief with PT eIther. Thoughts ? Anyone
    Also will add since posting this al blood work is fine...seems that there is another nerve or 2 more likely to be causing my pain..but spine surgeon or neuro didnt tell me this a family friend who is a cardiologist.....crural nerve, and femoral nerve? anyone have this?
    Desperate please help.....
    I will post the next one as "pain ? cant possibly " to help you follow and it all ties into the original post I'm sure you can start to see the correlation :
    This can't be happening
  • edited 09/07/2015 - 3:21 PM
    there seems to be very many different "terms" used to describe the surgery on has endured. I was told I was having a microdisectomy , however as I got further in after surgery, due to pain 2 weeks after left side minimal but increased on right, I learned I had a laminectomy as well as the microdisectomy, which I researched on my own because I had the rarest of disk herniation which is an extrusion. Jelly ballons up pushes out and breaks off and lodges into the nerve. I did not have any instrumentation just the disk fragment removed from the nerve. I too felt great first 2 weeks followed drs instruction to T even had a family member come stay with me...What brought me to Dr. was all left sided leg pain from an injury, shoveling snow and fell, never had any back pain. But MRI confirmed the disk extrusion. I too started having pain about 2 weeks after surgery. Left sided and now right sided my surgeon did a post surgical MRI. Came back with scar tissue but doesnt look to be right sided and report said possible re herniation but from disk dr didn't feel he saw anything to suggest re herniation.
    I unfortunately am 12 months post op from my surgery call it what you will no instrumentation and two failed post surgical epidurals one severe, a "wet tap" no patch just bed rest recovered in 5 days...I had toradol, I had steroid packs ..I've had land PT water PT, traction, have had 9 mris , one radioactive bone scan, which had an uptake at T 7???whats that???? I had full arthritic lyme, blood work, xrays, a nerve test which I question because I had been on valium at the time of the test then I read later in an article you should not take a sedative drug with this test????and aside fromLast MRI read granulation l4 l5, scar tissue and some neuroforaminal encroachment?

    But all still left sided nothing to explain---- severe right sided pain----- back is a dull ache,now because its had surgery I'm sure I have soft tissue swelling below incision site but I've described its like sitting on a rock on the right buttock for hours and my tail bone is so predominant now my pain doesn't go down the back of leg like most sciatic sufferers... mine goes around hip increase of where your hip sits and travels over top of leg into inner thigh feels like a vice on the nerve sometimes into the lower extremity. Sometimes numbess and leg weak ness hardest to get up in the am.. Ive been diagnosed since surgery with SI joint, femoral nerve dysfunction, periformis, I don't think many doctors diagnose this, but every time they try something to help these conditions they just cause more pain...including PT...So now neuro surgeon is suggesting what ever you call disk removal and instrumentation and fusion and clean up scar tissue, I am going to bring to his attention on Monday when we discuss that I did read on another thread that someone had particles from their laminectomy that did not show up on the MRI which is what I feel may be happening in my case maybe something so untraceable by test that they can only see once going in ?? is rubbing against this scar tissue, has itself wedged into a nerve and because my activity brings on pain maybe its freaking out my peripheral nerve system???
    "pain" real?

    Has anyone had something going on but drs really could "see" until they were in?

    Unexplained pain on opposite side since surgery? Brought on by activity or sitting but NOT DOWN BACK OF LEG over the top to inner thigh????

    My next step which freaks me out is surgery, and I just want my quality of life I can deal with a few flare ups but this is 12 months of constant...and answers or similarities please post...desperate....THANK YOU

    My next post will be conclusion with my opinion as well....
    This can't be happening
  • and guess what those 11 months of "theres nothing wrong", "you look great on paper" I can't figure this out. All the tests including the over priced PM test that as you read I volunteered to submit, because I'm not one seeking, I'm someone "seeking an answer for my pain.....so this test the discogram that I researched and asked for showed an annular tear....I won't get into what I thinks really going on here but its NOT IN MY HEAD.....look at what I've lost....and guess what...1 failed back surgery and now I'm on my way back in to the its in your head....Like I started this conversation I'm healthy and I believe we know our bodies, when there is something wrong with our body not our mind I think it affects our mind how can it not your in a constant state of pain..this bone fusion this PLIF has now lead me into another world of "it would have to take an accident to damage this fusion, however there is a failure rate on these, but drs don't want to accept they choose the wrong approach, they didn't listen to the patient, they read a medical article, they have collegues that study the brain and its signals of pain...I'm almost 4 months post op and have been having severe pain since surgery, and guess what the MRI shows more issues so I'm not sure how its in my head denervation of paraspinal muscles as a result from surgery I'd imagine since its adjacent to the surgical site...I dont know how I can make that up. I posted it was my latest post and one message replied....my PT doesn't even know how to correct it, and shes been in this field almost 20 years...I'm her inigma...I hate what I've lost, I hate the condescending tone form the staff that aren't even medical professionals do they think I enjoyed having to resign form my job after 10 years of service, that I'm barely holding onto my house, that I've gone through every test and been a "model" patient. I've just enjoyed living my life inside the same room or deck for the last 14 months because its in my head, I can't just get in my car and drive to meet a friend, I go to target to walk around because walking is the best thing for me but I'm in pain after a period of time...I just love that I can't sleep because of constant pain if you saw the back and the swelling your reaction would be jaw dropping i'm certain, but I don't know how to post a picture. They need to get over the its in your head and listen to us. I don't self diagnose but if you research denervation (atrophy of muscle) thats what the MRI says nothing wrong with my SI joint, periformis, sciatic,....its not in my head its a debilitating....
    This can't be happening
  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    To answer one of your questions, How Did I Get Here, yes, my first back surgery the neurosurgeon went in "blind" so to speak. It was back in 1998 and, although I had several MRIs they showed nothing that would cause the issues I was dealing with. I can vaguely remember asking before I went into surgery if I was going to have a fusion. The surgeon said, "I don't think this is going to be a big deal at all."

    So, when I woke up I was in the ICU but in no pain, feeling great! The neurosurgeon told me a bunch of things but one I remember clearly was that there was a lot more involved than he ever thought. I remember him saying he did not know how I was still walking. I remember him saying about the stenosis. But what I really remember was just not being in pain.

    Now, with the pain clinic when I was having epidural injections they would show me screen shots, I guess, of the x-rays and show me what the first surgeon had probably done. There are allografts- clean cut bone grafts. Other things I still don't know what they say they are. I'm not sure we'll ever know. (I now live far away from that hospital and the surgeon has died.)

    But, the doctor I have at the pain clinic and I have a good relationship. I feel really comfortable talking to him about all kinds of pain issues. I've often brought questions to him from these forums. One of the big ones is this question of "Is the pain real?" or "Why can't they make it better?" He's explained to me that they don't have answers to most pain questions, why my left hand doesn't work or my right leg. Why do I feel pain when there is nothing there. My doctor is young and not yet hardened. He's explained that doctors never say, "I don't know" and I think they should! I'd rather hear, "I don't know" then to question my own sanity or description of pain! I continue to be asked if I'll agree to more surgery and I get to say, "I don't know!" And there's an even bigger one, "It looks awful but I have no idea what to do about it!"

    It's made me change they way I relate to my own clients, I'll say, "I don't know but I am going to find out!"

    In all honesty my pain has been increasing and I may go back to considering more surgery. I wish there were something new they could do. I'm not the usual person looking for the magic bullet but I would like one now please!


    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    edited 09/07/2015 - 5:41 PM
    What has helped me the most has been learning about pain and chronic pain and the new discoveries about pain. I've watched many videos on You Tube out of some of the best research hospitals and Universities. There is an e-book written that I have shared with my friends so they understand. I know we want the diagnosis and the defining answer to "Why do I hurt?" but I have learned to accept the "I don't know". I have learned that for pain to control us it needs to raise emotion. I am learning to not allow pain to get me afraid, angry, frustrated. Pain, for me, just is. I don't and will not make a judgement on my pain.

    I keep notes for my doctors but then I go into my meditative mind and allow "pain". I don't give it the power it needs by giving it emotion. For right now it means I can exist side by side with pain. I hope I can continue to allow pain in such a way as it can no longer disrupt my life. I have other autoimmune issues and they too are treated like this. It allows me to cope and to find new ways to get on with life.


    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
  • Well mothers is what it sounds like. A lot of my pain not being treated was my mother's fault. Not only was the accident her fault, (I'm pretty sure) but she would not let the doctors or the paramedics treat me. My mother believed that if anyone saw me in the car they would not help my grandmother who had gone from the back seat through the front window, so she made me hide. Then once at hospital, the doctors wanted to exam me and she told them that I was faking it and not to touch me. For years every time I said I was in pain, she ignored it. Actually, she would get mad because I knocked her teeth out in the accident. It wasn't my fault, I wasn't driving and it was her responsibility to put the seatbelt on me.

    Then to make things more interesting... when she abandoned me in the US with total strangers, every time I asked for something, dealing with pain included, they told me that my mother didn't leave them any money for anything.

    So needless to say, it took a long, long time to get the help I needed. And some of the doctors said that if things had been caught during my childhood years, the damage wouldn't have been so bad.
  • itsautonomicitsautonomic LouisianaPosts: 1,807
    How did I get here, I sense the desperation in your post and I know what it's like when everything falling apart and doctors are saying its in head or can't find issue. If I recall you had small fiber neurapathy? If so that pain can be debilitating and far reaching, and most of the time small fiber neurapathy can be accompanied by central pain, autonomic problems and more. If I recalled right you need to go to a teaching hospital and see neurologist before you lose your mind and home
    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.
  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    Boy, I lose a lot of people who claim to be my friends when I tell them, "I'm not feel good right now". I'm realizing it incites real anger in people. A good friend of mine today just really went off when I said, "I don't feel good. We need to stop arguing. I need to leave>" His ex-wife has Munchausen's and, as a result, he thinks all people create their own pain and ills. His explosion of anger scared me to a degree that the pain has not been able to do. He had been my medical advocate and that's ended.

    Other friends gathered to help me out, offer support, just listen. And I thought about wanting people to feel what I feel. Not just the pain but the anguish and grief that comes with always feeling left out, unable to keep up, left behind.

    I've read that pain cannot exist without emotion. Pain is always accompanied by fear, anxiety, anger, depression, and I think, loneliness. I'd never choose to feel like this, not ever, but now I'm pretty hurt that someone is walking out of my life because I deal with something everyday, something they think doesn't exist or, as he said, is there to manipulate him.


    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
  • itsautonomicitsautonomic LouisianaPosts: 1,807
    plumbtuckeredout, i dont think a person alive would want to live this way. Its sad someone could think a person would
    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.
  • SavageSavage United StatesPosts: 5,431
    I agree with itsautomatic, no one would choose this life of pain!

    Im sorry for your difficult friendship.
    As you said, he may have been reacting to his own pain from life experience with former wife.
    We know what we live, and it may take him time to heal from what he's been through.

    Since situation happened so recently, there is still hope for things to be calmer and continued friendship.

    One of my best friends will still want an outing or something, and when I respond my body not cooperating today...she slips with, " oh, not again!" Then she tries to explain she just misses me and doing things. She's frustrated with my limitations, but she does stick in there with me.

    But I too have lost many " friends" who can't understand a " not feeling well" that never heals...no matter how it's explained to them.
    Hopefully they will never find out first hand.
    Spine-Health Moderator
    Please read my medical history at: Medical History

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