What do you do when your own doctor or specialist makes you feel like they don’t believe you and you are left trying to justify your pain or misery to the person you hoped was going to help you? When your optimism is shot down time and time again… What can you do? What should you do?
Managing chronic pain and looking through your options and finding a physician/ specialist who LISTENS, and works to UNDERSTAND your point of view can be the difference between MANAGING your pain/ disability and feeling HOPELESS to manage your disability.
First- The Rant!
In my most recent appointment with the ‘pain’ specialist he asked me if the current treatment I was taking was working. I told him I had no effect from the current treatment at the dose prescribed. As a historical point, 4 years ago when I had a physician who did listen and empathize, I was on double the equivalent dose that this specialist felt should be sufficient to elicit some response, some relief from the pain. When I moved I had to change doctors and it literally changed my life as I tried to find someone with a similar approach to helping me manage my pain from my arthritis. I have found that at the heart of the matter is it is not my comfort zone they are trying to find, but their comfort zone they are not wanting to venture out of!
So I am left with the fact that when I went in for my initial consult a few months ago, and spent the better part of 30-40 minutes trying to explain that I can manage my fibro in it’s current state, it is the OA that is the chief issue at this time as the pain is not managed and it impacts my home life, social life (of which I have none) and my work life (I am a nurse and a nurse who can’t walk without stunning pain) and we discussed a plan we could both live with… The hope I had was a fleeting one as I am again left being made to justify why I think I am entitled to a quality of life…
When I told him I had achieved no relief at the dose I was taking he seemed disbelieving because he felt it should work so therefore I am questioned as to my claims of ongoing pain, discomfort and disability…
Between a rock and a hard place
By the end of the visit I was left feeling very discouraged and told that he was not willing to keep trying different medications or doses to find something that worked for me. BUT if I got a DNA test that would prove to him that I am genetically predisposed to having poor response to certain medications or that I did not metabolize the medications properly then we could have a starting point to change the dose or medication. Imagine that… having your doctor make you PROVE what you are feeling and saying then I will continue to try to help you. And this in the context of being in the midst of the worst fibro flare I have suffered in 4 years.
Is it in the Genes?
What he recommended is a DNA test. Specifically one which that reveals how you respond to pain medications and mental health medications. Through pharmacogenetics, you can better understand which medications to take and which to avoid. I have previously done DNA tests (which I will be further reviewing and discussing in future posts) such as 23andme to contribute to my genealogical research and for health indicators, but those results did not concentrate on these classes of medications. SO I got the test, Inagene, which is a simple cheek swab and the turnaround time was quite reasonable.
For example
As an example of what you would receive (this is from MY report, and is only one example of a medication that I was willing to share).
Your response to various drug classes, yellow means you may require changes to dosing or have an altered response, but green means no changes required, you should respond as expected.
When you access the specific medication it will show the class of the drug, the gene variant that was found, what changes may be required, and a link to the research used to make those determinations.
I have to say, when the results came back and appear to support my ‘claims’ there was a small sense of satisfaction. But now what!!?? I let the doctor know & shared the results but, the trust in the relationship right now is on shaky ground because he asked me to PROVE I was in pain and did not seem to believe me when I told him about how I had responded to the treatment.
What CAN you do?
In this case I chose to comply with the doctors suggestion. I fortunately had the financial resources to purchase the kit, but what would have happened if I did not? It certainly is not covered by my insurance, and had I not been able to purchase the kit, I would have been in a catch-22 situation!! Stuck at a suboptimal level of pain management with little to no hope of achieving some quality of life. With a pain specialist who did not believe my interpretation of my level of pain or believe my response to treatment.
What SHOULD you do?
Cry a little, stomp your feet a little, maybe have a little pity party?? Then you need to recommit yourself to keeping and fostering open and honest channels of communication. If you honestly don’t feel your physician or specialist has your best interests at heart then perhaps finding someone new might be your best option. This ‘pain’ specialist is my 3rd since moving to Toronto and was the most willing to actually sit down and listen to my long tale of woe. I don’t believe that bond is completely severed as yet. We will have to see how he responds to my ‘evidence’ that I am not just being a big cry-baby 🙂 I am not looking for someone to agree with me unconditionally, but to give me a sense that there is some empathy and consideration of my interpretation of my own reality.
We know our bodies, we know how we feel and as hard as it can be to advocate on our own behalf for compassionate and sympathetic care we need to be persistent and consistent.
Endorsement & disclaimer: Knowledge is power and I would highly recommend the Inagene and/or the 23andme testing kits as a way to better understand yourself and also as a way to help guide treatment decisions/ discussions. (The links below are affiliate links)
And I am trying to make my posts more visually appealing so be patient while I learn my way around 🙂
The Fibro Vagabond 
I suck at maintaining my blog, especially comments, so just connected with your reply to one of my posts.
I don’t know what clinic you are at in Toronto, but I’ve been a patient at CPM in Scarborough & Oshawa and have had great success with the physicians there They recently changed the name to, I believe, Neupath. If you are still having issues with your doc, consider them as an alternative.
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I did go to that clinic but unfortunately was not taken seriously and received little to no benefit from my many visits there 😦 But they were nice enough though.
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I’m surprised. I was never doubted. Maybe it was the physician. As I said, I am in the Oshawa & Scarborough offices.
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I think it goes to show that depending on how well the goals of treatment mesh between the client and the physician. I think it came down to determining what the physician was comfortable with not the level of comfort I was able to achieve. If the physician says well this is all I am comfortable doing go see your family doctor.. I leave without adequate treatment.. my doctor who referred me to the ‘specialist’ for advice is left hanging.. then on to the next pain clinic or specialist… I have undergone every ‘treatment’ it seems and it has only actually created more problems and triggered more pain before being told to move on to the next. It is very frustrating but I do know that there is relief and it just means finding the right doctor and developing that relationship… I miss my doctor in Ottawa but am not up to travelling hours for appropriate care. I know a level of comfort that affords a quality of life is doable, just need to find the right supports and that takes time I guess. I was attending the CPM in Scarborough
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Wow. Can you contact your previous specialist in Ottawa to see if they have any suggestions?
If you don’t mind me asking, who did you see in Scarborough?
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My DR in Ottawa was my GP not a specialist… and I won’t mention names.. not every partnership is a good fit and that’s ok.. someone will listen eventually
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