Dealing with doctors (specifically my Rheum)

ChristaPeanut

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Apr 25, 2022
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I'm mostly feeling down today, which, thankfully I don't usually have full days of. I messaged some things to my rheum (i've been having some vasovagal syncope (which is fainting, but I don't actually faint, I just have to lay down immediately.) I work in healthcare (non clinical, I do medical coding but i've worked an arrangement of jobs in it for 18 years. It's just so frustrating getting no empathetic advice from my rheumatologist. She is just like," no that's fine. It happens to a lot of people. Maybe message your primary care doc about possibly your blood pressure." I've also been sweating a ton. I know it's summer but this has gotten worse over the past year and it's mostly at night. I also wanted to know if she thought it could be a cymbalta side effect or maybe even something affected by my morning coffee drinking. Spoiler alert: she doesn't think it's a side effect of anything. Her current practice isn't even managing new fibro patients; they're telling the primary care (GP) to do it. I apparently got in at the last minute. There is a doctor shortage that seems to be happening here. IT's three months to get into any kind of mental health place, and that is even just for counseling, not seeing a psychiatrist. I find it very difficult to read patient notes all day, plus deal with my own healthcare needs, and my husbands (he's a disabled veteran). I guess I am just burnt out. I live in the States and the healthcare system here was in a bad place BEFORE the pandemic and every one from top to bottom is burnt out and it's like I can just feel it all around. I'm thinking about switching my fibro care to my primary doc, but I know she will retire in a couple to a few years so I'm not sure I should do that. She is at least a lot more empathetic towards all my stuff. Anyways sorry this is long I just needed to get this all out.
Does anyone have issues with vasovagal syncope?
 

JayCS

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Hi Christa -

Vasovagal syncope: Someone in our family recently had that or something similar. It's been checked by a cardio, so I'm not surprised your rheum doesn't have anything helpful to say about it and would suggest like she does to go to your PCP or a cardio for blood pressure and considerably more.

I've talked to 8 rheums if I include the 4 in the fibro/rheum clinic - all nice, but none of them particularly empathetic, so again I'm not surprised. Definitely not the first place I'd look for empathy, so again I'd definitely switch to your PCP. Also tho it's just a personal thing, so trying to switch rheum or PCP might help.

If she doesn't think it's the duloxetine/Cymbalta, I'd like to know why. According to lots of anecdotal and study evidence sweating is a typical side effect and can increase like in your case. Do you desperately need it enough? Would you be thinking of alternatives? Do you think you can't do without meds and increase supps instead? Would your PCP take you thru either?

Here and in many countries rheums aren't the ones actually managing fibro patients, only diagnosing them. The reason why they often diagnose them is because it often appears rheumatological. Like my wife took me off to the rheum because I was getting increasingly stiff. But fibro isn't rheumatism, so once that's excluded we need to get docs that are empathetic, want to help and have a bigger overview. Again that'd favour forgetting her completely and switching to your PCP. Personally, I only used my rheum twice after the diagnosis - a) to get a referral to a clinic, without seeing her, b) for an opinion if tests I'd had done elsewhere are Sjögren's are not, phone, like in your case not particularly helpful, same as the rheums in the clinic. Who do I use? My GP for ideas, PT-prescriptions, bloods, my sleep lab psychiatrist for ideas/job rehab stuff, my cardio for CVD, but now also CoV/jab-stuff, now occasionally my allergist for MCAS... I wouldn't dream of going to my rheum for any of this, but also couldn't see a sense in switching mine. What I need is open-minded docs who are willing to support me. Difference I spose is I don't need meds. But if I felt I needed them, I think I'd get them.

Regarding your PCP: If she's better, why not take advantage of these last few years. You aren't burning bridges behind you, cos you could just say it's gotten worse. Also I can't see a bridge you'll be needing. If you did need a rheum as I said, switching would seem to make more sense. You'll be needing a new PCP anyway. So if possible (that's how it works here) it might be cleverer to use situations like holidays from now on to test somewhere else temporarily and also look around using reviews and phoning other offices to get an impression and ask if they have fibro patients. And if they are better, then stay there, if not, go back a while and try another next time.
When my previous GP retired, he did so without warning (for legal/financial reasons). So I listened to word of mouth, but mainly I compared reviews and my impression of the websites, and it came exactly as I thought, a naturally inclined, chaotic all-rounder, I'm pretty pleased, don't think I need better, hasn't any idea of fibro, but is willing to help and be educated by me.
 

ChristaPeanut

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Apr 25, 2022
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DX FIBRO
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03/2022
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Thanks Jay. I have my regular appt with my PCP in September so I am just going to keep track of my blood pressures for a few weeks and cut back on caffeine. It definitely seems to be making things worse. I also have all kinds of problems in the deep part of summer usually, in general i feel more fatigue and have IBS type symptoms. I think it's weird the Rheum thinks the sweating isn't a side effect of the cymbalta too. I actually have had minimal issues with the cymbalta (I know that is not the case for others) so I'd like to stay on it. I can deal with the sweating it just sucks. I do need to see an allergist too! I'll add it to my list. I always forget about it. I think it will help to avoid some things. I think in September if shes okay with it I'll ask about switching to her for the fibro stuff. She always listens and lets me bounce stuff off her and if there is a test or lab I am interested in to check she will always order it. THat's a good idea! Thanks. There is a heat wave and drought where i live (and pretty much everywhere it seems by the news!) so I know this couple of weeks is extra tough. It usually gets bad in August.
 

JayCS

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I think in September if shes okay with it I'll ask about switching to her for the fibro stuff.
Do you have to do that? I've often had situations where either I or a doc has just started switching a bit and I let it go with the flow, so there's no explicit decisions.

Examples: I was at the allergist's cos of MCAS and asked her about the additional fatigue, and asked for an acupuncture prescription, which'd I'd normally go to my GP for, she said yes, but what diagnosis, cos MCAS won't be acknowledged - I said fibro, I know that works. Next time I got it from my GP again.
2. My cardio offers CoV-jabs, and has a really well organized office. My GP does too, but doesn't like doing it too much. So not only did I do the jabs there, she now feels responsible for '(it) having given me MCAS' and whether or not to get #3, so did an antibody test, and while she was at it a fairly complete blood test... - so now I can get my bloods done there too, without any problems or officially switching.
 

jschneider444

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Apr 11, 2022
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Could you possibly have POTS postural orthostatic tachycardia syndrome? A tilt test can usually determine this. Check out Dysautonomia International.
 

ChristaPeanut

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03/2022
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Could you possibly have POTS postural orthostatic tachycardia syndrome? A tilt test can usually determine this. Check out Dysautonomia International.
Possibly, I have looked into it a little. I will check out that reference, thanks!
 

ChristaPeanut

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DX FIBRO
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03/2022
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Could you possibly have POTS postural orthostatic tachycardia syndrome? A tilt test can usually determine this. Check out Dysautonomia International.
I thought you'd like to know that I saw a nurse practitioner today (my PCP is on vacation) and told her my symptoms (after I checked out DI above) and she immediately was like "have you ever been diagnosed or worked up for POTS?" She ordered a heart monitor and a tilt table test! My EKG was fine in the office. Sorry, I get excited with doctors actually do stuff! :) Thanks!
 

jschneider444

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The tilt table test is how my adult daughter was diagnosed with POTS. Let us know how you make out with that test.
 

ChristaPeanut

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The tilt table test is how my adult daughter was diagnosed with POTS. Let us know how you make out with that test.
I had my tilt table test yesterday and I'm not sure if they will diagnose me, but my HR went up to 160 and I almost threw up and almost passed out so they put me back down the last ten minutes. I wasn't aware they give nitroglycerin during the test! (and I had researched it pretty thoroughly and they told me nothing about it when they scheduler called with the other directions.) My doc had me go off my hypertension med (metroprolol) for the test so she could see a clean heart rate jump--the metoprolol decreases your heart rate. They give the nitro to make the symptoms worse I guess, but I was already having my usual almost passing out symptoms (hot, light headed, nausea), and anyways it definitely made it worse, lol. I had a headache and muscle pains the rest of the day from the nitro, so that part sucked. Finally got them under control so I could sleep. I feel better today mostly.
 

hope23

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May 16, 2017
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This may have already been asked but are you on Venlafaxine(us brand is Effexor or effexor XR)?
I only ask as i had a kind of similar issue, the medication was causing my bloody pressure to plummet causing me to pass out for split seconds. I would liken it to the feeling when you are extremely tired and youve just nodded off and then wake suddenly.
I went through the whole cardiology, thing wore the monitor thing for a week to record any instances of it occurring etc.
The cardiologist response was that either the centre in my brain that deals with automated things your body does(breathing, blinking, heart beating etc) or was a side effect of the venlafaxine, we lowered the dose and eventually cut it out altogether and i have not had the issue since
 

ChristaPeanut

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DX FIBRO
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03/2022
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This may have already been asked but are you on Venlafaxine(us brand is Effexor or effexor XR)?
No I am not. Thanks for checking! I am on cymbalta (started last fall) but I have had these instances off and on over the last few years. My original thought was that maybe the cymbalta is making it worse. Rheum doesn't think so. I see my primary in the beginning of September, so hopefully we can figure this out! I did a holter monitor too, but I am just now ending that and sending it in. They also said my blood pressure didn't drop too much, it was just that my heart rate when high. As usual, confusing or inconclusive results on a test are part of this gal's life! Lol.
 
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