Doctors Frustration Thread

[SlamDancin]

I wanted to start a new thread for this discussion that was derailing the NIH Nath study thread.

To kick things off, as we were discussing in the other thread, many of us have stumbled onto the fact that benzodiazepine medications seem give us our ability to be normal human beings to some degree.

However, my experience with trying to relate this to doctors (who otherwise are more than fine with doing absolutely nothing for us) runs the gamut from my PCP who cut me off mid sentence to say "I don't do benzos" to my shrinks whom keep telling me that while they aren't against it in the future at some point (allowing for months to go by whereby I suffer needlessly) that there needs to be some parental lecture and "boundaries" discussion first.

This all comes at the same time as when you tell them how miserable your day to day experience is you get told things like "well I just take a few Ibuprofen and that works for me." My PCP actually said that to me. Generally you tell them this and they just look at you like you're telling them what you had for breakfast that day.

Also, while they trumpet up the risks of these medications as if they are street drugs, there seems to be absolutely zero understanding, or even attempt at understanding, what being housebound/bedbound/unable to exercise/unable to socialize does to a person's health. Any respite that we are able to get is a day where we are not simply deteriorating and it inspires SOME hope that more days like that in the future are possible.

Most normies would crumble without so much as their ability to go to the gym. It is absolutely endlessly frustrating that doctors cannot so much as understand that unlike anxiety these medications may actually be having a positive health effect relative to our normal hellish existences.

Also, to end my rant, why is it that we are punished, lectured and treated like addicts for seeking something that actually improves our lives? It isn't like we have anything to lose, we have literally nothing. Even IF we chose to do something like take a benzo everyday to the point of dependence, as long as we have more of a life possible to us each and every one of those days, is this not a positive? They give out other drugs, that are proven not to be helpful to the point of actively damaging our health, like they are tic tacs. SSRIs and SNRIS and regular doses of antipsychotics are extremely dangerous for ME/CFS patients and yet because they are not to known to make people "feel good" this is an acceptable and carelessly easy choice for doctors to do. And they will not give it another second of thought after they give them.

Why the hell are we not even able to try and feel better? Is it acceptable to doctors that we literally suffer until the day we die as long as we never took a pill to feel better. It's gross and it makes me want to directly ask these doctors if they don't think they would be doing the same if one day they found themselves in our shoes.

Does anybody have any suggestions on how to talk to these people to get treated like human beings?
Any other non benzo related frustrations with doctors is also welcome.

@Rufous McKinney
@Oliver3

 

[Judee]

It's gross and it makes me want to directly ask these doctors if they don't think they would be doing the same if one day they found themselves in our shoes.

It's just that they cannot comprehend that a disease could be this bad. They won't ever either unless they get Long Covid and it develops into ME/CFS.

Sadly, there is no way to describe this experience sufficiently to someone who has not been through it. Truly, the only doctors who kinda understand are those who have loved ones where they've seen the dramatic flip from being completely healthy, normal and able to do most things to being able to do almost nothing.

 

[Rufous McKinney]

"well I just take a few Ibuprofen and that works for me."

Doctors are just fine with us taking other damaging forms of Pharma drugs.

My doctor who wasn't very troubled by all this, has gotten further regulated and had a heck of a time writing me another Xanax Rx.

The problem is at some level above the doctors.

Knowing we will languish in pain terrifies me. I've already been in hospitals, not receiving pain treatment.

 

[Rufous McKinney]

SSRIs and SNRIS and regular doses of antipsychotics are extremely dangerous for ME/CFS patients

New doctor invited here.

Four minutes later, she's telling my daughter I need SSRIs.

She's fired.

She took me off metoprolol, tachycardia amped up.

 

[Wishful]

There are physicians who do have ME or LC. Someone could ask them to compose an explanation of how it feels to have these diseases, the limitations they set, and the value of anything that does help a bit. If other doctors won't listen to patients (just because), they might listen to other doctors.

 

[Rufous McKinney]

Something really does need to happen in regard to public awareness of chronic conditions which need access to these types of medications.

One of our own, changed doctors and was told Forget that single Xanax you use. After forty or more years? The person is not having any issues.

Nanny State. Treating adults like children. Doctors cannot be doctors any more, and its a big problem.

 

[GreenEdge]

Hi @SlamDancin, (speaking from experience) believe me you do not want to go down the benzodiazepine path. It only works short term, and you'll become dependent. When you decide its no longer helping and stop taking, you'll then discover dependency and how much harder it is to get to sleep.

I recommend (if available) you find a cannabis doctor. Cannabis oil has helped me get off other medications and has improved my sleep and more importantly I find it non-addictive and over time I use less often. One thing I've learnt is when I find I need to increase my dose because my body's getting used to it, that's when I need to take a break (at least 3-4 days) + vitamin C to restore its effectiveness. And when I do take a break, I continue to sleep well so the breaks between are getting longer. Before I started cannabis I averaged 2 hrs sleep/night. I now get twice that or more.

 

[SlamDancin]

@GreenEdge I’m sorry, I don’t want to be a dick or derail the thread, but I find it ironic that in this thread of all threads you want to pull a doctor card and try to lecture me about which medications I should take.

I have like 15 years experience with benzos of all sorts, including the dreaded dependency, and no it’s not any worse than unmedicated ME/CFS and no, the anti ME/CFS effect does not go away with tolerance, for me or others.
Also dependency can be medically treated rather easily versus ME/CFS which cannot.

Dependency is not a forgone conclusion either!!

I’m also aware that cannabis exists, thanks,
I’ve used it for years as well. It’s helpful but not in the same way, and no it isn’t non addictive either, in fact, I was just made to detox from it and got really sick.

 

[Byles]

Talking about Cannabis. I've stopped mentioning it as some of them start telling me it's the cause of all my symptoms. I'm in the Netherlands so you should expect differently, but the opposite. It's in my file, and if they ask me for it I sometimes just say I meant CBD which they considered a more or less harmless placebo. I would like to try the quality strains they have in the pharmacy, but I don't dare to bring it up and I am not sure if it's a good idea to have the usage on file.

 

[Dysfunkion]

Everywhere I have ever been has also had that strict "we don't do benzos" rule going yet like you said they are happy to fling SSRI's at you like candy. I would only use the medicine as needed though on my absolute worst days because I am also terrified of being another addiction horror story. I wish I responded well to cannabis but it just makes me go insane, there's something about my brain chemistry or whatever that is a disaster when combined with cannabis. Kava for example is fine though the amount I need to drink of it to get anywhere I want to be destroys my digestive system so I don't use that anymore either. CBD is a joke too, the only thing that stuff is does is make me groggy and my mood or what's left of it goes out the window. I've had a period of experimenting with all different cannabinoids before and none of them were the answer to anything. CBG ultra dose dose gave me a lot more energy but made feel weird in a way I can't really describe but it made functioning harder. THC-V would have been great but like any other THC like compound I react very strangely to it. I think my issue in general with them comes from my dysfunctional immune system and how it interacts with my CNS. I wish some miracle drug would be created to take away at least all of my social issues and cognitive dysfunction but I can probably keep dreaming. For me feeling normal would feel like being high. Everything I ever used I had to stop because of the adverse effects of it on me, kratom lasted the longest but eventually went too. When I look back I was never looking to get high, I was looking to get normal and being high was the only way I could grasp that more often than not. In fact I've had more people think I was on drugs SOBER than I ever did when I actually was buzzed which is kind of scary to think about. My normal to people is like a bad trip.

My drug of choice on the worse days has been simple isolation as I continue to try to work out things to make life more tolerable more often often. I just disappear for a while and do just about nothing. It's embarrassing how often I need to do that. In between I try to keep in contact with people and family but my brain just can't do the socializing thing too well and the misery is too heavy so I just end up embarrassing myself more. When I'm on a losing streak after any new thing I try in my futile struggle to function like a human being like I am right now I can be down for over a week. Something in me keeps me going though, guess that being stubborn working in my favor.

 

[Rufous McKinney]

but I don't dare to bring it up and I am not sure if it's a good idea to have the usage on file.

my GP told me to use cannabis. In lieu of other things with more troubling side effects.

Having it noted in your file does't sound great, given the prejudices that exist. Thats was a good idea, saying you meant CBD. All that is so confusing, anyway.

 

[hapl808]

There are physicians who do have ME or LC. Someone could ask them to compose an explanation of how it feels to have these diseases, the limitations they set, and the value of anything that does help a bit. If other doctors won't listen to patients (just because), they might listen to other doctors.

Nope. I follow some on Twitter. As soon as they are more moderate or severe, they are generally ostracized or viewed as quacks - no matter what their previous experience. Their own physicians won't take their complaints seriously.

Sadly, there is no way to describe this experience sufficiently to someone who has not been through it.

This. There is just no way to communicate it.

Truly, the only doctors who kinda understand are those who have loved ones where they've seen the dramatic flip from being completely healthy, normal and able to do most things to being able to do almost nothing.

Even those are rare. Most physicians will assume their loved one is suffering from depression or other illnesses. They rarely will jump to ME/CFS - although Long Covid is slightly more acceptable these days.

 

[Rufous McKinney]

I wish I responded well to cannabis but it just makes me go insane, there's something about my brain chemistry or whatever that is a disaster when combined with cannabis.

understand. Cannabis is something you sort of need to get used to it. When you do it infrequently, or are not used to it, it's more intense.

Also it does lower BP. Gotta watch that part.

I use alot of topicals...THC in a topical oil has some nice properties. Like when my veins start swelling up. Or the awful dull neck ache which is almost always there, then it gets WORSE. I put oil on my neck.

Well, in somebody else, it causes their veins to do the exact opposite.

I just disappear for a while and do just about nothing.

I haven't been actually napping lately, but I have to do extensive collapses, and I lie on my stomach and must s imply do vast amounts of nothing. If I can unwind enough (wired but tired being common..)..I might drift off or at least feel ALOT better some time later, perhaps having gathered up a few more spoons.

 

[Rufous McKinney]

As soon as they are more moderate or severe, they are generally ostracized or viewed as quacks - no matter what their previous experience

A doctor spoke to me yesterday when I asked where are you all describing your symptoms.?

She had a huge list including most of her teeth have been damaged by the long covid.

But no answer for is anyone keeping track of this?

 

[Rufous McKinney]

This all comes at the same time as when you tell them how miserable your day to day experience is you get told things like "well I just take a few Ibuprofen and that works for me."

I"ve managed to avoid taking most of their crappy pills, most of my life.

Thats nice, some ibuprofen works for the doctor. The doctor is not sick with THIS. Having never had this, they know not what they are talking about.

 

[Rufous McKinney]

Does anybody have any suggestions on how to talk to these people to get treated like human beings?

How do doctors: learn new things?

where do doctors obtain insights and revelations?

I was shocked one day, when I mentioned to my GP, how the state is going after doctors who write vaccination waivers for peoples's children.

My doctor knows ME exists, he knows Stanford studies ME, and he doesn't know they are going after the doctors licenses?

 

[Insomniac]

Cannabis is not a good alternative. It worsen autonomic dysfunction.

I get a big improvement in pain with old fashioned Vallium, as opposed to clonex and lorazepam ,which just relaxed me, then lost effectiveness and were hard to taper off from. I don't ask for it because I am worried that the vallium will also lose it's effectiveness on me.

I also find it shocking how psychiatrists know nothing about the Heather Ashton protocol and slow tapering.

You are correct on how they go overly scared about Benzo addiction yet are not bothered about pushing Lyrica and amytriptaline on me and others with "fibromayalgia".
I suspect the latter two are harder to taper off.

 

[Rufous McKinney]

I get a big improvement in pain with old fashioned Vallium

any theories on why that helps with pain?

I seem to love GABA...so part of a Xanax can really improve ambient anxiety associated with having to go do something when you are too sick to go do it.

 

[Rufous McKinney]

yet are not bothered about pushing Lyrica and amytriptaline on me and others with "fibromayalgia".

somehow I never even get around to discussing the pain aspects and the fibromyalgia. And my old GP I can't see any longer, does fifty minute appointments.

the new doctor I saw last week, knew about fibromyalgia but not ME. And I didn't even get to say well I have that every day.

same at the rheumatogist. She indicated I don't have Sjogrens when it's very clear I have a serious case of it.

She then suggested I increase my LDN from 3.5 to 4.5 Which I did not do, since I'm having a heck of a time just reordering it.

My GP didn't bother to forward the email his receptionist told me to send. so they did nothing for ten working days. SCREAM. I still don't really know if they are ever going to refill it, and I pay myself.

 

[SlamDancin]

@Rufous McKinney My rudimentary theory is that benzos have a multitude of effects that help a lot of us. A mix of vasorelaxation, decrease in vascular resistance, muscle relaxation, some of them agonize TSPO like Valium does which is anti-neuroinflamnatory.

One thing I do not understand is why Ron Davis is not studying the GABA system. He obviously knows because Whitney uses Lorazepam to withstand his hospital trips to change tubes. That would seem to me to be a major major factor to study considering it even works with the most severe of patients. But I emailed Janet back in the day about doing a study of GABAA receptors and/or other factors thought to be involved in ME/CFS after a small-medium dose of any number of benzos. Maybe I should try reaching out again at some point.

I really truly think, and I’ve been trying to convince skeptical doctors for years now, that benzos are not simply lifting anxiety in me and other patients. If that were the case then they might as well admit that they believe we are all simply psych patients. We have fought too hard to get rid of that stigma and yet…