Chronic pain, lies and statistics

Discussion in 'Fibromyalgia Main Forum' started by tansy, Nov 16, 2005.

  1. tansy

    tansy New Member

    A ME/CFS advocate in the UK writes about the increasing popularity in psychologising symptoms and pain.

    PERMISSION TO REPOST

    Who Needs Proof Anyway? Chronic pain, lies and statistics.

    In the last few decades, psychological theory has become
    increasingly accessible to the layman through publication of popular
    self-help books. These books are written in an animated style with
    interesting case studies that make them relatively easy to read.
    However these texts are often written without reference to published
    research and are subject to the author's bias and commercial
    interests. This has lead to a phenomenon whereby many members of the
    general public are willing to accept unproven psychiatric theories
    relating to their physical and mental health.

    Recently a colleague of mine told me that my partner (whom she has
    never met) who has suffered from the neurological disease Myalgic
    Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for four years,
    should consider psychological therapy because she had read that 95
    per cent of chronic pain has a psychological origin. Having myself
    read `The Mindbody Prescription' by John Sarno MD, a professor of
    clinical rehabilitation at NYU School of Medicine, I am 95 per cent
    certain that this is where she obtained her opinion!

    Sarno maintains that most chronic pain as well as `physical
    disorders' including headaches, gastrointestinal symptoms,
    allergies, respiratory, dermatological, genitourinary and
    gynaecological disorders can be blamed on repressed emotional
    states. He has of course devoted several pages in this book to
    Fibromyalgia Syndrome (FMS), ME/CFS and Lyme, which he dismisses as
    having any organic origin and for which he wholeheartedly endorses
    psychosocial treatment regimes.

    In order to add validity to his arguments he has created the term
    `Tension Myositis Syndrome' (TMS) to describe a pain-producing
    process whereby the brain sends inappropriate pain signals to the
    muscles, nerves and tendons. TMS is experienced when a person is
    consciously or unconsciously experiencing/repressing emotional
    distress. He goes on to say that TMS is

    `a painful but harmless change in state of the muscles'.

    Applied in cases of ME/CFS (as Sarno explains is appropriate) this
    could potentially cause the patient great harm.

    Rather than relying on any hard and fast proof for TMS, Sarno works
    on the premise that because the brain's function is poorly
    understood, the possibility that it could cause physical symptoms
    cannot be ruled out. The part of the brain that Sarno contends is
    responsible for converting emotional responses into physical
    symptoms is in fact termed `the black box', because so far, its
    biological mechanism is not understood. This does not however appear
    to constitute any need for uncertainty in thinking of TMS as a real
    condition.

    He goes on to discuss chronic illness and dismisses positive blood
    tests in cases such as Lyme Disease as merely coincidental to the
    pain and other symptoms sufferers' experience. These patients are,
    he contends, just experiencing TMS. He maintains in spite of clear
    evidence to the contrary that

    `ulcers are still stress-induced and that the bacterium is merely
    part of the process'.

    Overall his views seem to agree with those of the Wessely School -
    that there are few physical diseases but many psychiatric
    conditions. For instance he suggests that relief of many known
    organic diseases experienced by taking conventional medicine is all
    down to the `placebo affect'. Examples include use of diet to
    relieve hypoglycaemia and virtually all uses of homeopathic or
    alternative approaches.

    Unsurprisingly, the statistics Sarno uses to reinforce his claims
    that he can cure most back pain are somewhat flawed. Whilst he
    details trials in which he had success rates of 80-90 % he then goes
    on to admit that he turns away around 50 % of patients who come to
    him because they

    `reject the idea of an emotionally induced process and would,
    therefore derive no benefit from our therapeutic program, since
    acceptance of the diagnosis is essential to a successful outcome'

    He goes on to state:

    `I am exercising my prerogative to work only with patients who have
    a reasonable chance for success'.

    Is this the loading of the dice that we are familiar with in the
    selection of `CFS' patients for GET/CBT trials?

    It is startling to realise that Sarno's books have sold in excess of
    500,000 copies. More worryingly, physicians seem ready to accept
    theories from such books and to persuade patients that they are
    applicable to them even before undertaking any detailed medical
    investigations. One doctor with whom I have spoken, even referred to
    the fictional novel `Regeneration' by Pat Barker, as evidence that
    post-traumatic stress such as that experienced by soldiers who
    served in World War I could lead to functional somatic illness,
    including chronic pain, ME/CFS and fibromyalgia.

    Rather than noticing anything amiss with the constant suggestion
    that most of our health problems are somatised, it seems to me that
    those who accept unproven psychiatric theories consider themselves
    to be enlightened, if not better educated and open-minded than the
    rest of us. Furthermore, they dismiss those who prefer to exercise
    an appropriate level of scepticism as negative oddball characters,
    and conspiracy theorists. It seems that by simply believing that
    psychiatric theory could ever be flawed is enough to render one's
    own mental health suspect!

    Those on the `enlightened' side of this divide can remain there
    happily unless they themselves become victim to an unfounded
    psychiatric opinion. Even then they may not associate their
    acceptance of theories such as Sarno's TMS with the poor medical
    treatment they receive. For example: cases where brain tumours are
    dismissed as migraines resulting from anxiety, and where infants
    with meningitis are sent home without treatment despite the mothers'
    pleas that their children are extremely ill. Some of these instances
    may be explained on the basis of a poorly resourced and increasingly
    strained medical system, but others may well stem from flawed
    psychological theories such as TMS.

    So by buying into pop-psychology, is the public effectively
    colluding with the very system that is letting them down daily? If
    so, it is time that they view such theories with greater scrutiny
    and consider carefully opinions of those who reject or have serious
    doubts regarding the psychiatric self-help revolution. The thing to
    remember is that the term 'self-help' may actually be referring to
    the book's author...and not the legions of willing readers.

    BW
    Lara
  2. tansy

    tansy New Member

    for all our ills seem to be reaching an obsessional stage these days.

    I find it all so ironic since ignoring them has enabled me to make progress and, apart from the low light afternoon/evenings sleepies sneaking in on cloudy days, there is little going on now that could be refferred to as TMS or being stuck in the sympathetic mode. Making progress did not require a change in my thought patterns, being positive, nor a placebo effect.

    As an aside I want to let you know how much I enjoyed reading your posts about your trip. The were uplifting and inspiring.

    love, Tansy

  3. LollieBoo

    LollieBoo New Member

    It is especially relevant to me right now, as I have just had a meeting with the very kind Neuropsychologist in my Physiatrist's practice. After administering a personality test (MMPI-2), and taking an approximately 15-minute survey of my personal history, she proceeded with a 45-minute explanation of my pain.

    First of all, I am amplifying my pain by focusing on it all of the time. It has taken over my entire life, it seems. I agreed on both counts. The difference is that while I feel that it is necessary to focus on what my body is saying, especially considering that I am still being scrutinized by umpteen specialists, she feels that I should discontinue keeping a 'symptom log'/ 'medication-intervention journal' and just try to get on with my life. Ignoring all of my pesky symptoms (like not being able to move my legs at all some mornings!) will minimize their effects upon my life.

    Fibromyalgia has effected so much of my life, from brain fog to crippling pain and headaches. I should quit thinking about it so much. I told this woman that I had been meditating deeply and sincerely for the last ten years. I know how much my perception of my symptoms can amplify or minimize my symptoms. My current problem is that controlling my pain has become my full time occupation. (When I told her that, she said, "See?") I am so used to feeling a balance in my body, and knowing when it shifts and how to get it back. I have not known homeostasis for almost two years, and I am struggling just to get near enough to start nudging myself in the right direction. She appeared to empathize by nodding and saying, "It's hard to feel like you have no control over what your body is doing." I responded that yes, it is- especially when you have been able to maintain the ability to know your body and its tendencies so that you can overcome imbalances in the recent past.

    She then proceeded to explain to me that my deep frustration at the loss of control over what happens to my body is magnified because it reminds me of the sexual abuse I suffered when I was younger. I rebutted, saying that I felt that though some negative energies and hurt may yet be lingering from that experience, I had made peace with the situation and myself, acknowledging that I was able to become my present self only through that experience. I told her that I think what magnified my frustration was that I had been so used to knowing my body, that to lose that connection was devastating, but that I was working toward re-connecting with my self. Again, she insisted that the root was my previous sexual abuse (if I hadn't mentioned that, I could have mentioned any other of the number of abuses I suffered as a child, rape as a young adult, and that would definitely be the root! My father was an alcoholic, too- THAT must be why I refuse to relinquish control over my well being!). She said that it was the loss of control of my body that led me to natural healing, health foods and meditation- I sought out those things because I'd been sexually abused. Now, having lost it again, the 'pendulum', as she put it has swung back in the other direction! Ta-da! FMS explained fully in one hour or less...

    She also said that rather than continue taking 200 mg of Pycnogenol and the other things that I feel strengthen my body, I should acknowledge that it will not help and just make peace with the fact that I am going to have pain and all of the other frustrating symptoms that accompany FMS. That simple act will allow my body and mind to relax and open up, so that I won't feel so much pain and distress.

    The MMPI-2 has eight or ten different 'scales', but the one that amused me the most was the 'depression scale'. There are five or six parts that make up the overall depression 'score'. My score was higher than normal, indicating depression. The three categories that raised my score were #1: I am aware that I am feeling some depressive felings and exhibiting some depressive behaviors. I am aware of my mental status- I pay attention to it and try to minister to my mental health as needed. #2: I feel that I am well taken care of and have an active support system, which I am comfortable turning to for help if needed. #3: My depression relates directly to somatic complaints. The other parts had decidedly low scores. Based on the three elevated 'depressive scale' parts, she determined that I should not approach biofeedback until my depression has been resolved somewhat.

    Ultimately, I felt like I definitely have different ideas of what constitutes depression as well as what pain is and how it is to be treated. I did give some heavy consideration to her 'educated theories'last night. I would never want to dismiss any possibility based on personal offense. The fact is, however, that in March of this year, I marched out of my doctor's office, saying I was no longer going to go from specialist to specialist because it forced me to pay too much attention to my discomfort. I had to pay attention to every little hiccup and sneeze (especially so, since my PCP is a homeopath!), so that I could properly regurgitate my symptoms to the right doctor, in hopes that someone would finally put two and two together. I finally relented, admitting that I could not ignore my pain away and that I could not eliminate it through my own known pathways. In resolving that I would give in to parading from specialist to specialist, I started my pain diary to (hopefully) make the process less lengthy, so that I could get back to being me- even if it has to be 'me with FM'. I have since vacillated between feeling as if her assessment was made too early, considering that I am still in the 'diagnostic' phase of my illness, to anger and offense that she would tell me these things as if they are new considerations, with no regard that I may have already searched out those possibilities myself in the last two years. She treated me like a closed book- as if I had no self-knowledge. She did not listen to my interpretations and consider their value as being first-hand observations.

    I am sorry to see that medicine has not yet evolved to accept that there are elements of health that we have yet to discover; layers upon layers that are so far, beyond our intelligence. It would be a sad event if our general medical understanding were to take the detour of assuming that misunderstood medical problems are the result of 'mental malfunction', rather than pursuing the deeper knowlege that would help us to understand before treating upon assumption.

    Thanks again, Tansy- Good timing!
    Lollie
  4. fivesue

    fivesue New Member

    It is just all too sad that people won't/can't accept that pain can be caused by physical factor even if they can't be discerned by a test.

    Read Lollie's post and the post on the book's author and am just sickened by the arrogance of the medical profession.

    Blessings to each of you. Just so sad to read all of this.

    Sue
  5. victoria

    victoria New Member

    Lollie, the last 2 Sues had good advice I think!

    I'm so tired of psychologizers... as some may know my DH was a psychologist for 20 years... even he got SOOOO tired of his medical doctor friends/colleagues on whom he depended for referrals endlessly psychologizing their patients with chronic pain etc. One neurologist even sent him a woman with a broken foot, saying her foot pain was psychological -- he just 'knew' without even taking an x-ray!!!

    It's amazing how deeply this idea has been entrenched into modern culture!

    all the best,
    Victoria

  6. rosemarie

    rosemarie Member

    Nothing irratates me more than a man telling me that the gyno problems I had were all in my head. How would he know was he there? When I finally could not stand it anylonger and neither could my ob/gyn, He had problems giving me demoral for the intenece pain I would have every month.

    Do men have children? NO do they have cramps that hurt like someone has just slugged you in the stomache with a sledge hammer and your legs feel like you have just ran the 4 minute mile in 30 seconds and they ache so deeply that it hurts and I wanted to scream.

    No to have a man tell me that my fibro, and my back pain is in my head iiis up a creek. I have degenerative disc diease, spinal stenosis, bulging discs L4-L5**L5-S1 these are seen on my MRI's so I know that they are not all in my head and neither is the pain.

    Just once I want a study done on some one who understands what pain is and how it can affect your life. And it changes you , well it did me. life with /fibro and CMP. and the rest of the chronic pain I have make my life filled with pain that most people think that it can't really hurt that much all the time. No wonder I didn't tell anyone I was hurting so bad all the time I was so embarassed because no one I knew had all the problems I had.

    I had four laproscopies in 4 years the first 4 I was married I had a baby and surgeries too. I had retro grade menstaration , I had periods that made me hemorage and I would have a hemrocrit of 19 and need to have 5 units of blood. How fun it was NOT! I won't go into what all was with my uterus overies, tubes, cervix, and appendix. All of this was more painfull than I can describe to you. I thought I was dying because of this terriable pain. I was scared and thought I was no longer a woman I didn't have the parts to be one.

    I felt like that,all the things that made me a woman phyically were gone and I could not be a mother again nurse a baby again, and then the surically induced menopause that was a kick .

    I paniced that day. It was the first panic attack I had. I woke up in so much pain and I buzzed my nurse adn told her to " GET ME THE HE** OOUR OF THERE , I WAS LEAVING" needless to say she came into my room and pushed the button on my morphine pump and told me that I was not going anywhere soon.

    It would be nice to have someone who understands what pain really is to differnet people and how we all cope with it instead of telling us that chronic pback pain is in my head. How would he know that,HE has never met me so what does he base this study on.?

    Sorry for getting all on my soapbox about this study thing. And then I reamble on and on. What i mean to say is no doctor really understnads why pain affects us all in a different way. What will drop me to my knees { I would not be able to get up if I dropped on my knees} will not feel the same to someone else. What makes you want to crawl into a hole and not come out becasue the pain is so bad may not effect me the same way. So I do want to know who this man can think that chronic pain is all in my head? HE has not been in my head and I am not going to let him in there.LOl It is how I feel not him.

    How did that get published? I hope that the people he cured are still cured now. So as you guess I really have no belief in this person and what he thinks.
    sorry if I have offened any one. It was not my intent to make anyone uncomfortable. so it I said anything that is upsetting I am truely sorry. Thank you so much for letting me vent about this. And since I am not a doctor I don't have a degree in this topic just what i have and suffer from. SO I wil just stop griping now.

    Rosemarie
  7. LollieBoo

    LollieBoo New Member

    Lots of friends! Thank you so much for your support, "Sues" and Victoria. I have made my feelings clear to my primary and pain management physician (as well as a nurse that just happened to field a later phone call!).

    Again, many thanks, Tansy! This was very timely, and a good reason to spout off!
    Lollie
  8. rosemarie

    rosemarie Member

    So was his medical school gotten from the kracker Jack medical school? I am sorry that I sound so angry and sarcastic about this person, I can't even think of him as a doctor he is so way out there in his way of things.

    It amkes me angry thatjust because a person goes to medical school gives them the right to dismiss everything that they have been taught. And put their own views and thoughts in place of the tested and tried methods.

    Chronic Pain , fibro, CMP ,lupus, are all some of the hardest problems in the medical world to diangnois { sp}. None of them really have a blood test that has a YES that is a POSAITIVE on it. My MIL had Lupus really bad and she suffered for many years. And yes there were some blood tests that would tell her what was going on with certian things but it does not say that you have lupus. I asked my pain doctor to test me for it and I wasa told that there are no real test that will have a postivie on it. there are many different things in the blood that doctors acccioate with lupus. Fibro and Chronic MEyofacial pain syndrome there are NO tests for these syndromes but we know taht we have them

    This doctor is doing more harn than good for the people who suffer from chronic illness's and it is even worse for the ones that involve pain. Pain is so hard to dx. As it is so different for each person. NO two people will have the same symptoms , tolerances for pain, so what is a 10 for me may be a 5 for you. But for me it is the worst pain I have had and as much as I hate to say it doctors don't belive that you can have intence pain all the time and have it last for years. Pain is something that no one can test for they can check for your reaction to it.

    I wish that doctor could really feel the pain that we live with eachday of our life but they can't and they would not understand the way we feel it either. I learned this from my husband. Pain to him is something that is there but you don't think about it and it will go away.

    thanks for letting me bvent about this. Rosemarie
  9. minimonkey

    minimonkey New Member

    That was some article! I'm a training psychotheratherapist, and too often I get referrals of folks who suffer FMS and other chronic conditions. Generally they *are* depressed and anxious by the time they get to me, after having had their complaints written off by doctor after doctor, living in untreated pain for years....and at least I can help by understanding the anger and frustration they've been facing.

    Sadly, many (certainly not all!!) in the mental health professions tend to share the opinion that "undiagnosable" physical pain must be somehow psychosomatic in origin --- I've heard that time and time again, and I do my best to try to educate my colleagues to the fact that recent medical research points much more strongly to a physical underpinning.

    I do believe (based on current research I've read) that, in some people, there may be a connection between early psychological trauma and pain. The roots of this appear to be physiological, actually, rather than "psychological" --- prolonged early trauma can cause permanent changes in the brain and central nervous system, which can then lead to very real (and often untreated) physical problems. I'm hoping to understand this better over time.

    I so hope that the medical community can eventually find a cause and a cure for us all --- as it stands, the best we can do is to pursue our own healing, hopefully with the help of a sympathetic and understanding team of healthcare professionals.