Finding Hope in Integrative Care

Finding Hope in Integrative Care

By Cynthia Toussaint.

Thank you, Ed Coghlan, for your follow up piece to the Los Angeles Times op-ed about women in pain often getting the “it’s all in your head” misdiagnosis.

In my opinion the only way out of this labyrinth of medical abuse is to walk away from the western healthcare model and turn to self-management and integrative care.

When I read Emily and Gracie’s stories, I was actually relieved because we women in pain have come so far since I became ill with CRPS in 1982. It took me 13+ years to get a diagnosis – and 15 years to get care.

Cynthia Toussaint

Always a self-advocate, I saw over a hundred doctors and was dismissed with a plethora of insults, including “you’re making up the pain to get secondary gain from your attentive partner”, “you have stage fright”, “you have tendonitis from Mars”, “you’re folding up your contracted arm with your mind just the way one levitates oneself” and the classic, “you’re only a woman anyway, it doesn’t really matter – just shoot yourself in the head.”

We women in pain lose most everything, including a chance for a cure, due in large part to this abuse. I lost my beloved career as a performer, my family and friends ran for the hills, my 37-year partner and  I couldn’t marry as I would have lost my healthcare benefits, we couldn’t have a baby. I lost the chance to live a moment of my life without severe pain and fatigue and I lost the chance to walk more than 100 feet without a wheelchair. To this day I’m housebound and unable to drive.

On top of all this loss was associated depression and anxiety, and the last thing I needed were doctors spewing cruelties while disregarding my pain. These doctors stain our psyches so severely, few of us are able to fully recover, reinvent ourselves and move on with a different life.

I’ve said it many times before, and I’ll continue saying it. When it comes to high-impact pain, the western healthcare model is a broken disaster chocked full of abuse, ignorance and clinically-induced trauma.

This system focuses on surgeries, procedures and medications, most of which make us sicker. In my case, they broke my arm, gave me severe pelvic pain, put me on an infusion drug that almost killed me and insisted on giving me an intra-thecal pump, two spinal cord stimulators and ketamine infusions.  This is but a partial list.

I finally found better care and wellness about 15 years ago when I walked away from traditional care and saw my first integrative medicine doctor.  When Dr. Brodsky walked in, I was ready for battle, strongly making my case for not wanting the many procedures, drugs, etc. When he stated that he didn’t believe in invasive care, I knew I’d made my way home.

Dr. Taw has since taken over – and his respective bedside manner is wonderful treatment in and of itself. He listens mindfully and after I describe a problem in detail he asks me what I think we should do. Dr. Taw then shares his ideas about life-style balance and stress management. We truly work as a team. No discrimination, no gender-based dismissal, no God complex. In fact when I call Dr. Taw (which is infrequent), he gets on the phone with me. That’s the key to the integrative medicine model – these are MDs trained in traditional and alternative care who place the patient front and center. These doctors know pain and fatigue conditions as most women in pain end up migrating there after the western model has left them sicker for years, even decades.

While Emily and Gracie’s stories remind me that we’ve come a long way, there’s still much work to do. At For Grace’s September Change Agent Pain Summit: Part One, we’ll gather men and women in pain and their caregivers to discuss barriers to care and possible solutions. We’ll highlight the NIH’s National Pain Strategy, one that promotes the integrative care model as “best practice.”

The day will be like a big focus group – and everything we glean will be shared with healthcare thought-leaders, legislators and the media at our 2018 Summit: Part Two where we’ll work to implement the National Pain Strategy in California.

Join us to be a part of the collective voice of people in pain and their caregivers. There is a better way.

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There are 13 comments for this article
  1. Cynthia o. at 1:39 am

    Very well stated, Cynthia. I like your tone, you don’t mince words. You tell it like it is. I always read your posts. Thank you for them. I am 70, been a pain sufferer for ten years. I relate to everything you said here, and in your past postings.

  2. david at 2:53 pm

    I agree in geral with Cynthias diagnosis of our troubled pain care system but dont agree with having healthcare thought leaders involved. Arent they part of the problem and since when have they considered people on pain to be qualified to have an opinion theyd consider. Their nonconsociationalism has contributed greatly to the suffering and they have used front groups to advance their own selfish careless agenda.
    An intervention would serve people pain better and make healthcare leaders realize people in pain are a force to be respected. Only then genuine discussion and rapproachment may be possible.
    As for the nps dont get me started on their visionless egotism and thinly veiled pain managerialistas managerialism.

  3. vicky at 2:20 pm

    I also agree with Cynthia. Kevin, can you keep your mind open to the possibility that gender bias exists and female patients are treated differently than male by some doctors. I don’t think the stories I read are overly dramatic either, i’ve been thru the same vile treatment by a ton of docs myself. No one could tell me why I suddenly couldn’t walk well, why I had searing pain over my entire body that felt like someone lit me on fire. Or why I couldn’t keep food down and wasted away to 90 lbs. If I had listened to the western med docs, i would have died. Nope, it wasn’t “fiber” as they said and had me on steroids to treat. I had lyme disease and also developed common variable immune deficiency. I’ve not done well on the monthly infusions with bad reactions and increased inflammation. and now I have aspergillis, which was found in my bloodstream, so also fighting a deadly fungal infection. The pain in my hands and feet is awful. If I didn’t have any pain meds, i would have ended my life. and yes, PTSD is real with patients like us, we are in such bad shape physically and then to go in and try to get help and be treated like a crazy person…its all too much sometimes. if you have non stop cervical pain, and I did, with 2 spine surgeries, I suggest you get an Igenix lyme test because the cervical spine is a fav place for lyme bacteria to hang out. after all that, my back now feels fine. But it was awful.

  4. Ibin at 11:51 am

    Patient treatment, treatment for incurable pain, should be evaluated, examined, and a good provider of effective pain management should “listen” to the patients goals. Goals with continuous, incurable pain ARE different. A diseased or injured patient with pain may fully realize that the “working” life may very well be over but, the patient STILL has almost everyday procedures to do. Personal hygiene, cooking, food gathering, clothes to clean are ALL important. A patient that has already been through every test available, pre or post surgery, may have a slightly different goal. Economics, self reliance, self sufficiency in one manner or another is a must.

    My simple point is that there is NOT just a unilateral treatment for the people ……..with pain.
    A more “natural” method of pain relief,sufficient pain relief may work very well for many but, to ass ume that one pain management method will be effective…..again…..unilaterally is beyond “good medical treatment”. I, personally, do not “wish” to be bound by any medication, any one method of pain relief. What may work well for one patient with continuous, incurable pain condition, may not be effective for the other, much less ALL people with pain. It is a self advocating health condition and the authoritarians have “decided” what will work, be effective “enough”…..for all patients.

    Many patients have already been through the least treatment possible to manage their pain. Many are now forced to explore other options which are somewhat limited due to the INDIVIDUAL pain causing health condition. NO “treatment” should be ruled out, especially if the treatment is causing no negative health conditions, with zero negative health conditions foreseen and observed with decades of treatment. However many patients HAVE already been through the gambit, the maze of different methods of pain management and yes, some patients have been prescribed pain medication immediately for “verified” continuous pain without the provider attempt to find the appropriate resolve for the patient.

    The provider that deems that the patient can not manage pain effectively with zero other methodology should, be able to STILL receive effective pain management even if it means opioid, opiate based medication. If honest, only the patient can relay to the provider IF sufficient pain management is being realized.”There can be only one” treatment of pain IS absurd but, again many patients have already realized that effective pain management, a personal situation, health condition, may be obtained through, with, only natural means as well as those that realize their “best” treatment for effective pain relief IS medication, prescribed.

  5. John S at 4:18 pm

    Just wondering – What sort of TREATMENTS do you receive or use that help you ?

    I have no surgical solution – no implanted devise solution. I use relaxation – massage – muscle stimulators- ultra sound etc etc and all of these yield but a momentary amount of relief. Medication is still what works long term / daily.

    So I’m curious as to what is working for you.

    Thanks again for your continued help and support.

    John S

  6. Mist at 1:37 pm

    I would like to share an experience… I have difficult time putting thoughts in order at times..I suffered severe pain for 10 yearrs and neuro sent me to a neuro pain doc who tried meds that made me worse saying it was fibro and MS pain and i had injured my neck,herniated a disc and it kept getting worse . I kept telling docs it was my neck causing issues with my hands and arms and lower back collapsing …neuro insisted on brain MRI and I asked that my spine and neck be done while they were at it…it would be 3 hours ..
    I requested a stronger pain med for before MRI and for the day after of course I got blown off cause I took 4 10mg hydros a day so I should be well medicated those meds didn’t even take the edge off of the pain but I could not complain because I didn’t want to lose what little I got..
    so neuro ordered me tramadol but I am allergic to it so could not take.
    then he ordered a valuim or something like it 1 pill…so I went for MRI and ,tech said he remembers me I have had several MRI’s . I couldn’t make it through MRI caused so much pain I cried and they let me get up but upset at me and tech was upset at neuro he said they should of knocked you out I remember your results and not surprised you could not lay still….
    Here is the kicker the neuro for many years I know he thought I was making up symptoms etc.. it’s all in your head issues yes I would tell them I have MS hahahaha
    so after MRI the next day I get a phone call at 6:00pm and it was doctor’s office I was like oh my gosh doctor’s never call this late..
    It was my neuro and HE APOLOGIZED to me I felt so vendicated it was not even funny I was thanking God . All things in darkness do come to light..
    Neruo contacted my doc They upped my meds said I need surgery ASAP… I guess what I am trying to say is do not give up hope

  7. MichaelL at 10:28 am

    Grey, just another reason to stay away from the doctor’s office! I practiced employing education for biofeedback, electro-stimulation, referrals for acupuncture, psychiatric support, physical therapy (all forms),chiropractic referrals, and medication management for sleep disturbance, depression and chronic pain. Because I live in a rural area, most of these referrals were not local, if I had to employ them. All I got was grief from the specialists and the medical board for not making enough referrals! Thing was, most of the referrals did not experience fibromyalgia, as I did. (I had to reeducate one guy, because he was told that men did not experience fibromyalgia!) Most patients were told fibromyalgia did not exist. They thought I was a genius, for being able to hit every trigger point on palpation, and making the diagnosis! Most of my patients were poverty level patients, many on Medicaid! Referrals were not practical when those patients had to pay someone for their transportation. It was especially not practical, when they were not allowed to see the specialists, Medicaid refusing referral to things like psychiatric care and biofeedback training. Even those that were referred still needed chronic pain management. I had a few that I referred for surgery when they developed other problems like radiculopathy with leg paresis. The surgery often cured the weakness. But they did not get complete pain relief! Their latest trick with me is refusing to pay their 80% of my office visits. They said I, now, am required to pay a deductible. I had not been required to pay that for the three years that I had been on Medicare! I paid only the 20% of my office visits that I had. And, that was to be deducted from my deductible! I would be better off using Obamacare! I filed Medicare when I had an active practice. I am not completely ignorant. But, they have accomplished to confuse, even, me! What a mess! The inmates are running the asylum!

  8. MICHAEL PAUL FLEGEL at 8:01 am

    Nice comments. From a personal prespective we are having our opana er ripped out from under us and just exspected to replace it with methadone. Where is the public outcry? We should not be just killed like this as a class of disabled people.

  9. Debra at 7:35 am

    YAY Cynthia! Great article and so well said! I totally agree with everything you’ve written. Alternative/integrated! Thankyou soo much! Again, great article😊💜! Deb

  10. Kevin Jelley at 7:08 am

    I’m sorry, but my experience with most doctors that I have seen for my incessant cervical spine pain over the last eight years has been in stark contrast with yours. And I have seen many. And yes, I am a man, and I accept that some people (a minority) can be condescending to women and girls. That said, with one exception, I have found the doctors that I have seen, both male and female, to be sincere, willing to spend more than sufficient time discussing my case, and if anything, overly conservative in recommending invasive treatment, surgery, etc. Their recommendations have given me better control of a bad situation. One in which I have lost much of what was important to me.

    I feel their (the doctors) respectful relationship with me has more to do with the fact that I go in to my appointments informed, curious and I treat them with the respect that I expect in return. I’m not saying that you don’t approach physicians in the same way, but the hostility to “western” doctors that you profess in your letter is very unusual —> “just shoot yourself in the head.” Really???

    I often find that opinion articles in the National Pain Report present overly-dramatic descriptions of medical histories, pain levels, etc., and antagonistic descriptions of the medical community. That, of course, is my subjective opinion. In my medical journey, I frankly have found no villains… mostly just people who have wanted to help me. I’m sure that my comments here will land with a thud, but I believe that it may be beneficial to some to hear of my experiences working with western medicine.

  11. grey at 6:36 am

    When doctors do nothing to help and treat patients abusively and then dismiss them with “you’re just depressed,” then they go a very, very long way to making that a self-fulfilling prophesy.

    I remember feeling very hopeful before my doctor appointments, hoping that I’ll get the help I KNEW that I deserved. I was mocked, instead. Comments were made about my “little list,” the doctor was eager to leave the room, she wasn’t listening to me and little did I know that there was a fibromyalgia diagnosis in my records that another doctor failed to tell me about and that he’d cc’d her on the communication…

    … which apparently was what prompted the abuse and dismissiveness.

    The “F” word (fibromyalgia) has interfered so much with my care, even for non-related ailments. I was relieved when my symptoms did ease up with CPAP usage for sleep apnea. I say the fibro is “secondary to sleep apnea” because of that.

    Sadly, I get far better care when downplaying the fibro. It’s not my intent, but I do have widespread osteoarthritis so I still have localized pain rather than roaming pains.

    I get so angry sometimes. I wrote a letter to the doctor I was speaking of. I tried to be concise and “disconnected” from how I truly felt, so that I could give her an “update” on my progress – that I’d been diagnosed with sleep apnea, am experiencing much improvement with CPAP usage, that my pain is considerably better with the use of tramadol and mobic, and that had I not gotten appropriate treatment — I surely would have lost my job because I was so impaired by my health issues. I’d straight-out asked her for a sleep study back so that was the icing on the cake. Her dismissiveness had an awful impact on me.

    Little did she know that after having left the appointment with her, my hope was absolutely crushed and I had thoughts of suicide for the first time. Until that point, I was determined that the doctors were at least “on my side” and that something good was bound to come if I pressed hard enough. Before that appointment, I’d told at least three other doctors of my symptoms and how much they were interfering with my life. The symptoms progressed until I was in danger of losing my means of supporting myself and my means of affording access to the physicians who I was sure were in my corner.

    I call this “Doctor-Assisted Depression.” It’s when so many doctors disregard your need for help and you persist only to be treated dismissively, even with cruelty. And that hope you were hanging onto just snaps. I could pinpoint to you the instant that it happened and it was while I was sitting in the exam room with that doctor.

    I would have mentioned her in my suicide note. Thanks to the team I have now, I never had to write that note. Persist. Always persist. Don’t accept the blame that the doctor puts on you because the doctor is uncomfortable that they can’t ‘fix’ you. You deserve support, even if there’s no cure. We are human beings, deserving of basic regard and dignity.

  12. Cm at 4:06 am

    Agree Cynthia! Had surgeries to treat pain, ended up in severe pain due to incompetence and at the same time being treated like crap. Why am I the bad guy here! I didn’t to this to myself but you want to demonize me because now I have to take pain meds. After spending a small fortune on PT, acupuncture, counseling, books, CDs, second opinions, injections etc. I had an OB/Gyn who I respected and thought the world of tell me he thought I didn’t want to be out of pain because I never said that. Are you kidding me!!!

    That really hurt me emotionally for years and every time I cried because of my pain I would think about that comment and get so angry. That one statement that was so far from the truth really impacted me. I confronted him some time later and he backtracked but I will never forget that statement. Of course, that is only one example of the so many things that have been said and done to me over the 17 years that has basically morphed into PTSD.

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