Anticipation

[ladysprite]

I've been dealing with chronic pain in my neck and right shoulder for... most of a year, now. I've had to limit my work, give up most of my hobbies and activities, it's seriously damaged my mental well-being, and I'm taking so many different pain meds that I feel like I should rattle when I walk.

Tomorrow afternoon I have an appointment with an anesthesiologist at a pain management clinic to talk about what can be done to help actually fix this.

I am terrified, and it's taking all of my emotional resources to avoid just cancelling this appointment.

Partly it's because I still don't have an actual diagnosis. When this started, the ER doc mentioned a bone spur compressing my spinal cord and nerve root, but that was just an ER interpretation, and they've been wrong before - for instance, when they misdiagnosed my knee injury as tendonitis. And I'm a little surprised that, when I told my GP I wanted to get to the root of this and find out what could be done, and requested a referral to an orthopedist or neurosurgeon, she sent me straight to an anesthesiologist instead. Which... how the heck is he supposed to know what to do if we don't know what we're treating?

Largely, though, I'm dreading this because so far every medical professional I've worked with on this has been dismissive or critical. The ER doctor made fun of me, and asked me when I had taken up professional boxing. The neurologist I went to for follow-up told me it was just carpal tunnel syndrome (I was also having numbness in my arms) and that the shoulder/neck signs were 'no big deal.' The physical therapist told me that I needed to change my desk height, in spite of my repeated insistence that I didn't have a desk job, and finally told me that I was the problem. I already feel like I'm crazy; like this is either all in my head or all my own fault, and if one more medical professional tells me this isn't that bad, or that I just need to learn to live with it, I don't know how I'll cope.

If he can hand me a diagnosis and a treatment plan, I will fall down on my knees and sing his praises in every language I know. But if he blows me off... I don't know if I'll have the emotional, financial, temporal, and mental resources to keep pushing.

Maybe they're all right. Maybe I am just being a whiny little wimp....

Comments

[joannahurley.livejournal.com]

Uh, no, actually here's a secret: a lot of docs aren't actually very good at being doctors. I'm at the point where I suck it up BUT my pain is relatively mild and I have a "crazy high pain tolerance". The quote is from the ob-gyn that I apparently "impressed" during labor. Anyway...my point is that you're in pain and you should NOT have to live with it. A pain clinic is an excellent idea because they're uses to the concept of chronic pain. Most docs want to give you a pill and send you on your way. Investigating is too hard and takes too long. Go. You can always ignore them. :)

[dagibbs.livejournal.com]

Yoy are not a whiny little wimp.

Chronic pain is awful.

And, they may be being dismissive because not knowing how to solve things makes them feel less competent, so it is easier for their egos to be dismissive.

[browngirl.livejournal.com]

Heartily and emphatically seconded.

[mindways]

And, they may be being dismissive because not knowing how to solve things makes them feel less competent, so it is easier for their egos to be dismissive.

Yes. Not necessarily on a conscious level, but it can be easy for the brain to turn the thought "this is not a problem I understand" into "this is not a problem".

It's also plausible that they're picking up on your self-doubt and keying their reaction off of that instead of actually looking for the source of the problem. Sometimes getting proper help out of the medical establishment requires a certain amount of stridency and pushiness, which is a real shame, but that seems to be how it goes. :\

Just remember: for all that they're experts on medical-care in general, you are the expert in your body in specific. You've been working with it for approximately 300,000 times longer than them (assuming a 1-hour appointment), and are incredibly more familiar with its baselines, norms, sensations, and symptoms than they will ever be.

[jdulac.livejournal.com]

Has any medical person seen to it that you get an MRI? It really sounds like you have nerve impingement of some form, and its possible that an MRI could be suggestive of where the pressure might be.

Of all things, you deserve to be taken seriously. Have you consulted Barry?

[hugh-mannity.livejournal.com]

I'll second a consult with Barry.

And possibly a change of PCP to one who will listen to you.

I've been going to the Marino Canter in Cambridge for about 8 years now, despite the inconvenience of trekking from Quincy to Cambridge, because they listen and have no problem referring me to the specialist of my choice when I need a referral.

[starcat-jewel.livejournal.com]

A chronic problem that's been going on for a year and is seriously interfering with your quality of life is NOT "you being a whiny little wimp". That's the Goddamn Tapes trying to sabotage you again.

In almost any other circumstance, I'd suggest taking a trusted friend with you to provide a reality check. That's not really feasible with a doctor's appointment. But you might try rehearsing a response along the lines of, "This has been going on for a year, and is interfering with both my job and my life. I'm getting tired of doctors brushing me off because THEY don't have a clue. Can you suggest someone who might?" in a very frosty tone of voice. This should not be deployed unless/until you are in fact being blown off, of course.

[meranthi.livejournal.com]

THIS! If it is at all possible, take a friend who can advocate for you. I tend to smile and nod when doctors talk to me, and having someone to say "Hey, wait a sec" is a god send.

[johnpalmer.livejournal.com]

You can also say something very similar, without frost, to help a doctor understand that, even if they are out of ideas, *you* need ideas, that you are being blown off, and you need an ally, even if only to help point you in the right direction.

A doctor can read a chart and see the symptoms, but those are a puzzle to be solved. They're not (yet) a problem affecting a human being who needs to be helped. Once they've gone from "symptom list" to "human being" they want to do something, even if it's only to suggest a specialty that might help.

[hugh-mannity.livejournal.com]

I grew up with the "stiff upper lip" philosophy coupled with boarding school clinics where we were routinely assumed to be malingering unless we had obvious symptoms. Projectile vomiting, copious bleeding, or technicolour rashes were about the only things they took seriously. Flu was "just a head cold". Any kind of stomach upset was responded to with the query "Period pains or diarrhoea?" and there were only 2 medications -- aspirin or milk of magnesia.

I'm dreadful at minimising my own pain and assuming that I'm making a fuss about nothing. Very much to the detriment of my long-term health.

[meranthi.livejournal.com]

At my women's college, the answer to everything was salt gargle and/or birth control pills.

[johnpalmer.livejournal.com]

And I'm sure someone *must* have tried "my throat is so coated with salt that I can't take my birth control pills," but it probably didn't go over well.

[grum]

Not sure it's useful, but when an abuser does it, it's called gaslighting. How on ghod's green earth is it called good medicine when an MD does it?

[arachne8x.livejournal.com]

You have every right to be frustrated with the level of (lack of) care you've been getting. I second the notion that you need a PCP who listens and answers you. Moreover, while the human body is not your professional sandbox, you have medical understanding that other patients don't. Don't let them get away with not answering your questions.

I urge you to try to remember (and believe) that this visit with the as anesthesiologist is not your last resort. There are other doctors, other modalities, other possibilities. I am hoping he will ask the right questions and give you some good options, but if he's a dud, you'll find someone else. This is extremely hard to fathom right now, I know. I've been where you are, feeling like everything is riding on this one appointment. And dealing with all that while in pain is super hard.

I'll be thinking of you today and wishing you well. *hugs*

[alexx-kay.livejournal.com]

"I second the notion that you need a PCP who listens and answers you."

Thirded. Not getting a basic referral when requested seems like a huge warning sign to me.

[mermaidlady]

You are not being "a whiny little wimp". Chronic pain is not normal. Something is wrong.

[ladymondegreen.livejournal.com]

I have one word for you and that word is physiatrist. My sister went through almost an identical ordeal to yours, and finally wound up at my father's physiatrist on Long Island, who has been treating my father for chronic back and knee pain.

He took a look at her and after three years of looking for a diagnosis that made sense, he finally gave her one. Then he gave her the name of a physiatrist in New York City who has been treating her, and who was treating me when I had my injury two years ago.

Physiatrists are a cross between doctors of sports medicine and a plain, physical approach to muscle and bone structure interaction. If you cannot find a physiatry practice that will take your insurance, please go see a doctor of sports medicine and let them know that your sports are wrestling large animals and stress. If the first one isn't helpful, say thank you, and go to another one. Finding the right fit with a doctor is crucial, because it's one of the more important trust relationships you build in your life.

*many hugs and apologies for preaching the gospel of physiatry*

[vettecat.livejournal.com]

I really hope you can gain some useful information... keep us posted!

[duane-kc.livejournal.com]

Doctor, I've got a large, bipedal mammal exhibiting signs of stress, and pain when moving this forelimb at the shoulder. How would you go about diagnosing this?

Seriously, if your doctor can't discuss your symptoms and diagnose them one medical professional to another, it's time to find a different doctor, one who will take you seriously. Good luck at the pain center, but if your doc hasn't done the testing, I'm like you: what can they possibly tell you?

[johnpalmer.livejournal.com]

You are *not* being a whiny little wimp!

Re: PT. I've been to four PT people. *None* of them really listened to me. And none of them seem to have the language to listen to me. Apparently, what's known is mechanistic and formulaic.

I finally figured out it was my iliacus, and assorted crap resulting from it being too short and tight. It looks like I was right.

The neurologist - I remember House MD, one episode he say something like "pick the doctor, you pick the diagnosis" and Wilson kinda backed him on this. "I'm an oncologist; I see cancer." He's guessing, taking the most likely guess, and if that doesn't work, he might try something else.

The ER doc - it's a shame you hadn't taken up professional "do something to show dismissive doctors what jerks they're being".

What you feel is real, and the shame of the medical profession is that none of them are actually invested in getting you better (unless they see a very specific problem they can charge for fixing).

I'm not sure why you're seeing an anesthesiologist; I assume it's for drug treatments. But keep in mind, either this doctor will be your advocate and help you figure out what's going on, or, you need to find someone who will. But you'll never know if this doctor will be your advocate until you keep the appointment. If so, great, if not, keep trying.

I know a bit about how frustrating it is; I have chronic fatigue and I'm playing the same kind of game, because there's no obvious cause for it. But you - and I - deserve to feel better.

[cjsmith.livejournal.com]

From what I know of you, no, you are not in the slightest a whiny little wimp.

I hate to be all bitter from my own chronic pain issues, but here goes: it sounds like you are looking for pain relief while female. :-( :-( I hope it's not that bad. I hope it's just a few doctors who just don't know the answers to your particular problem and have a habit of blustering when they can't diagnose.