The Two Faces of Conventional Care

The Two Faces of Conventional Care

By Cynthia Toussaint.

This year while I write almost exclusively about integrative care – which includes conventional, complementary and self care – I tend to omit the conventional model because I walked away from Western medicine about a decade ago for better wellness. In fact, when I switched to integrative care, that’s when I quickly attained my second partial Complex Regional Pain Syndrome remission, nine years and counting.

I would be remiss, though, if I didn’t tip my hat to conventional medicine. Despite being a major skeptic of the many surgeries, procedures and medications our doctors prescribe for us women in pain which are, in my opinion, primarily a profit-driving scheme for the medical establishment, the western model is beneficial for my wellness. Specifically, I use medications that without a doubt afford me better quality of life.

That being said, if I’d followed all the advice of my western physicians, I would probably have kicked the bucket many moons ago due to an avalanche of over-care that included their recommendations of an intra-thecal pump implant, two spinal cord stimulators, multiple surgeries, countless medications (including infusion drugs) and hundreds of tests and procedures that I flat out refused. I call this kind of medicine “clinically-induced trauma.”

Cynthia Toussaint

On the upside, I take three, daily medications for my pain – and they continue to serve me admirably. I often take these therapies for granted because I’ve been utilizing them successfully for so long. In fact, this post is a good exercise to help me remember that the conventional part of integrative care holds a significant place in my wellness arsenal.

Thirty-two years ago after my pain spread bi-laterally into my good leg, I had to quit my career as a dancer and move back into my suburban childhood home. My world quickly imploded and I ran out of hope for a future. I slipped into a suicidal depression – and my anxiety level got so torturous that most everything I saw and heard became distorted and frightening.

At its worst, I could only stare at a wall and be uncommunicative. A psychiatrist put me on the benzodiazepine, Klonopin (clonazepam), for my anxiety and pain – and the result seemed like magic. Almost immediately my anxiety disappeared and I went into my first CRPS (back then, RSD) remission. To this day, I don’t know how I would have survived without this med.

About five years later, after my un-diagnosed CRPS ravaged my vocal chords and I was mostly unable to speak, my internist put me on Axid (nitazidine), a stomach acid reducer, that someway, somehow got me speaking again without pain. I’m a chatterer – and when I can’t express myself verbally, I become very despairing. This drug continues to be a God-send for me.

When I was at last diagnosed nearly 14 years into CRPS, the best thing my pain doctor did, next to believing me, was to prescribe Neurontin (gabapentin.) Despite him insisting that I couldn’t get pain relief prior to a minimum of 900 mgs., I began walking short distances after being mainly bedridden for ten years at 600 mgs. This remains a miracle drug for me.

Thirty-five years into high-impact chronic pain, it may be a shocker to hear that I rarely use opioids. But there are times when my breakthrough pain is so unbearable, the only thing that gives me a smidgen of relief is a 5 mg. Vicodin (hydrocodone.) And when restorative zzz’s become elusive due to fibromyalgia, I sometimes take a milligram or two of Flexeril which makes a world of difference because I wake up refreshed!

Those are my success stories, but my battlefield has also been littered with meds that have done great harm. My horror stories include once using a fentynal patch as prescribed by my doctor, which I’m certain almost killed me. I woke with major hallucinations and was unable to reason. Luckily, I somehow managed to get my panicked doctor on the phone who ordered me to rip the patch off in the nick of time.

A bout with the infusion-drug, Benlysta, prescribed for a disease I didn’t have, made me off-the-charts sick with mono-like symptoms for a year. In fact that doctor refused to authorize my third infusion because she thought it might kill me. Once for a bursitis flare, I was given a cortisone injection that not only gave me mind-bending insomnia and anxiety (while working in Europe, no less!), it induced a diabetic-episode that by luck of the draw receded. I know that in some cases it doesn’t. Scary, scary stuff.

Two years ago, when I was laid-low with mold poisoning, I listened to my well-intentioned mother and made a slip by visiting my internist. She put me on a series of antibiotics, prednisone and an inhaler that did nothing for my illness, but did indeed take away my lower-body remission. The next year was a nightmare as I clawed my way back while at a level 10 pain. There’s much more, but you get the drift.

I tout and deeply believe in the kinder angels of integrative care. Complementary and self care are mainly made up of non-invasive therapies without side-effects. And that’s the sweet spot where I like to be when it comes to pain management.

There’s no denying, though, that conventional medicine is a potential player in our wellness. But since this modality involves so many unnatural, manmade things that involve invading our bodies, we must be ultra-weary of possible harmful side-effects, up to and including disability and death.

Just sayin’…

Cynthia Toussaint founded For Grace in 2002. It is a non-profit organization dedicated to bringing awareness to gender disparity in the treatment of pain. She is also a frequent contributor to the National Pain Report.

Subscribe to our blog via email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

newest oldest
Notify of
Bruce

It’s like a soap opera on two legs.

Deborah L Schultz

I agree that a well rounded integrative plan of care is optimal. However for those of us on disability who live on social security, it is not possible to afford alternative therapies such as acupuncture, massage, physical therapy, etc. I know my quality of life would be much better with these treatments. They have helped immensely in the past. But now my only options are to use the treatments insurance pays for and that consists mainly of medications. I’m even afraid to try medical marijuana because it costs about 100.00 a month and that is not doable long-term. It’s a terrible predicament to be in, especially with the current climate regarding opiods. I’m afraid all the time, which doesn’t help my pain level or depression.

Maureen M.

Cynthia, as always, Thank you for sharing your triumphs and failures, traumas and treatments, emotional journeys, your pain exacerbation times and your days of less pain…. all of which you help us along on our own journeys.
We are all so much alike in what we experience in our lives with chronic illness.
Acceptance and support of others is everything.
I continue to wish you all the good that life holds for you. Maureen

Leslie Meadows

EXCELLENT AS USUAL😊

Rakel

Good post. Cynthia I live in the UK where the integrative model has been the ideal for a long time. However these “pain rehab courses” ( out or inpatient) are not very available. They teach posture, Pilates, lifting and carrying , ergonomics, biolimetics, Physio, Pilates, meditation, visualisation anything you can change in your daily life to reduce your pain. Clearly not everything works for everyone but what Í learnt as an inpatient for 3 weeks 12 yrs ago has been of huge benefit to me over the years. The hydrotherapy I still do as exercise in water I enjoy. Most important is pacing ones energy I cannot stress this enough and what they call LOCUS OF CONTROL MANAGEMENT which is never multitasking, and prioritising and pacing. Medication was part of this and I’ve been lucky to benefit from excellent pain Consultants who have constantly adjusted and tried different medications over the yrs – opioids mainly but also Klonipin. GABApentin made me suicidally depressed: we are all different. No surgery I was told it’s the fastest way to give yourself chronic pain, but infusions and radio frequency nerve injections have worked well for me. CranioSacral and a lot of osteopathy also worked huge benefits for me but it took years,now I always have s massage weekly and psych support. I hate meditation and mindfulness just gave me a headache, above all regular mildly aerobic exercise if you can do it has been proven to rewrite and relieve pain pathways but if you have not exercised for a while get advice start slowly and build up. The proven best treatment for chronic pain is to have a supportive psychosocial environment; I had to move to live in the country as city life became overstimulatimg and this hypersensitivity is common to all pain states so your anxiety and overwhelm didn’t surprise me. Would rather still be in London it’s my home but you can’t have everything, what is true is chronic pain is very expensive though we don’t have a profit model here not even in private medicine.

Wes Johnston

After my first kidney transplant in 1985, prednisone was prescribed as part of the anti-rejection protocol. I was taking 60 mg twice a day. Prednisone is no longer used as an anti-rejection med at my transplant center. However, I must still take it because my adrenal glands stopped producing cortisol. As part of the anti-rejection protocol prior to my second transplant in 2003, I was given a massive dose of Campath, a chemotherapy agent, to kill all of my T-cells to prevent rejection. I awoke from that surgeon excruciating pain. The Campath had caused nerve damage in my lower extremities, which is with me to this day. Without OxyContin, and 1800 mg of Neurontin daily, I would have had to have both feet amputated. That surgery was actually scheduled, but was avoided, thanks to Neurontin. It is truly a God-send. If the government outlaws Neurontin, like they intend to do with OxyContin, it will mean amputation or suicide.

Joyce Brittain

One thing I forgot. I had my back doctor, before my fifth back surgery, order a test called a discogram. DON’T DO IT! They shoot air into your back to see if they can blow out a disc! Very PAINFUL. I hurt for the full 10 days while hubby was in ICU. Miserable and painful experience.

Joyce Brittain

It really helps in dealing with my pain issues to read of others pain and how they handle it. I just wish they would have named some of the drugs that they referred to for fibromyalgia. I was diagnosed in 1995. The only meds I have tried was liricle(sp.?) and that had me walking in to walls at a time when my husband was down and out.

I can never get past the code. I’ve put so many comments in never to see the light of day

Here goes

I too have CRPS 20 years

I was stable, not running marathons or even doing much but my symptoms were not raging

I too was put on Klonopin 20 years which was recently lowered because of the cdc guidelines
I didn’t know what Benzedrine withdrawal was until I started uncontrollable crying, heart palpitations, crazy suicidal thoughts. It was and is the worst emotional and physical pain

Now my nervous system is in a rage. I am still on one 05 mg of Klonopin a day when I was on 4 .05 a day. Ripped to one .05 in a few months.

I now have no feeling in my legs or feet. I upped neurontin as i was told. It hasn’t helped

I don’t know where to turn

Anything you can tell me would help

jill slovacek

This is a great example of how we need to return to individualized patient care. My pump is my life saver and I have a continues drip of Fentanyal. Patches have also been a big help while Gabapentin did nothing. 4mg of dilaudid that they now give me is a joke as I have had gastric bypass, but they will not increase it even though one could reasonable see I need a higher dose… but we live not in reasonable times.

Heather

Conventional medicine has generally been my go-to. We’re all different. I try to be as informed about the treatments as I can, and I ask doctors questions. I’ll get a second opinion if I don’t think I’m getting effective care.

I didn’t mean to suggest conventional treatment on your post favoring integrative treatment. I should say I don’t totally understand integrative care. I may have met a doctor who practiced it, though. I found his insights to be very different, and it broadened how I thought about my health and the bigger picture.

I saw him for chronic pain, and back pain in particular. He started talking about the importance of my overall wellness – engaging in social activity, physical exercise, diet, finding meaning in activities that bring me joy… It was a breath of fresh air. But he also said he couldn’t offer me the same treatments that the other doctors in the practice offered — mainly, trigger point injections, an opioid refill. He said that he mostly just refers patients out for physical therapy, and I’m not sure how true that was or if he was hesitant to accept a (new) patient who expected to continue on opioids in addition to other treatments. I really wanted to drink in the information he presented to me… and I tried taking copious notes. I dredged my mind for more things I could ask him if I’d see him again. He had started out the appointment saying he wasn’t sure what he could do to help me, so I’m glad I didn’t let myself become discouraged or frustrated — because in fact, he had offered me something entirely new and I guess I am hungry for more but not sure what “more” entails. What does integrative treatment “look like”? What is discussed? What are intervention options? What are your expectations?

The thing is, I wouldn’t have known that I wanted integrative medicine care because… well, I still can’t wrap my brain around what it is now that I have had a bit of exposure. If indeed, that’s what happened. LOL! It still leaves me confused and slightly curious about more.

If only co-pays were not so high and if only getting time off work wasn’t such an issue.

Heather

continued from prior post…

If anyone wants help and has difficulty with finding an ENT who is knowledgeable, there are Facebook groups and you can search Youtube for VCD exercises. Or Google “VCD pursed lip breathing exercises” which is the exercise which has been most helpful to me. There are variations that may be more helpful to try. I also make 3 very quick sniffs with my nose and hurry up and blow out the air with my mouth (some say that it’s important not to pause long between the final sniff and exhale).

It’s important to practice these exercises even when you’re not having symptoms so that when they occur, you don’t forget what to do… or that the response just becomes more natural. I think my experience has been that now that I have the exercises down, I must be breathing differently on a regular basis… All I know is that I have far, far fewer episodes.

Oh, and if you have asthma and they want you to do a methacholine challenge, I’d honestly decline. False negative test results are RARE but they do happen. I had to find a different doctor who would continue to treat my asthma. He said that the methacholine tests are mainly meant for research purposes to rule people in or out of studies. He said that in the doctor’s offices, he’s seen results that he felt were inconsistent (the preparation of the test solution has to be spot-on and research assistants do that day-in/day-out and may be more exacting). The methacholine test is done in a hospital setting, so doctors who have offices in hospitals may be more likely to rely on that test. I have symptoms when exposed to cats… and it seems either the test solution was messed up or I just wasn’t in an allergic asthma flare-up state when tested. False negative. It caused a lot of conflict and drama that was unnecessary so I wanted to warn folks.

I didn’t know if this information may be relevant to you or not. I wanted to share it with anybody else who may have similar issues, too.

Jessica Reible

Thanks for your post! I think it’s important to know that other things besides medication and/or opiates can work for some people. That’s great for you, thanks for sharing.

I have an inplanted pain pump. I never imagined I would need this type of device…and at such a young age. It was an easy decision after my doctor denied me my prescription pain meds (which I had successfully been on for 6 yrs.) that kept me in a position where I could take care of my family, work and have some quality of life. I tried many of the medications you use. None worked for me! The first 3 years I jumped through so many hoops for my doctors… I wasted precious time, money and had much frustration over trying about 30 different conventional methods of therapy…None worked! It was necessary to see if these things would work and possibly save myself from being on pain meds.

Today, with my pump, I have very little pain. It is the same medication I took orally and actually the same dosage when converted from oral to liquid. Seems ridiculous that I had to go to extreme measures medically to be pain free. I’m happy with my choice now. However, my choices were really out of my hands. I had the choice to remain at a level of 7-9 on the pain scale 24/7 or implant the pump and possibly be pain free.

Heather

I have vocal cord dysfunction (VCD). Drinking lots of water helps to keep things hydrated, reducing acid reflux through medication (and diet if necessary) helps, controlling allergies and post-nasal drip helps, I saw a speech therapist to get breathing exercises that helped me when my vocal cords were spasming. Strong smells and chemical smells could trigger an “attack” and I’d have to do my breathing exercises. The other way that I’ve managed strong smells if avoiding them wasn’t feasible, was to put a dab of cocoa butter lotion under my nose (it’s a pretty neutral smell) or to suck on a Lifesaver or other strongly-flavored hard candy which both helps me salivate/moisturize my vocal cords, and taste and smell being interconnected — helped “distract” me from the offensive smell. The breathing exercises can be preventative as well. An asthma doctor had diagnosed me by using a scope that they put in my nose during a flare-up but I was referred to an ENT who is aware of the disorder for further evaluation. Not all ENTs will deal with VCD so you’d want to ask if you’re thinking of scheduling. The ENT scoped me again, but didn’t see evidence of the problem. Based on my symptom descriptions, he was willing to treat me anyhow (He did have record of what the asthma doctor saw during her exam).

My symptoms mostly involved breathing (it felt like an asthma attack but the tightness was in my neck instead of my chest). I sometimes had what they call “stridor” which resembles wheezing but is a strained sound made when there’s difficulty breathing air in. Sometimes my voice didn’t “start” in the mornings… I would speak and nothing would come out until I cleared my throat or “pushed” the sound out more forcefully. Some people have a fuller paralysis and cannot speak. I think there may be other symptoms but those were the symptoms I experienced.