Frustrating doctors appointments

[BabyAby123]

Myalgic Enzephalomyelitis (ME), also known as Chronic Fatigue Syndrom (CFS) or SEID. ICD Code is G93.3.

About 30% of LongCovid cases fulfill the definition of ME, but it is treated as a new disease in most studies.
Usually it is described as "post-viral-multi-system-autoimmune-illness".

I personally explain it like this: "The unknown sister of MS", as about 80% of symptoms are the same.
MS attacks the CNS and ME attacks the autonomic / peripheral nervous system (ANS) mostly, main symptom of ME is PEM, post exertial malaise,
but it has got about 1000 symptoms, like MS has got also.

I got this after some unknown virus infection when i was 29 years old, i was told to be bedridden with 40 and dead with 50.
I was able to prevent this with an enormous amount of effort in all directions, but i can not escape the fact it is getting worse every now and than.

My incontinence is part of it or of some comorbidities.

It is hard to find a doctor knowing AND taking it serious, medical gaslighting is extreme with this condition.
These days i almost not mention it at new doctors, but only the commodities, like POTS, Polyneuropathy, Dysautonomia or Neurogeniv Bladder.

Good explanation of ME. People never seem to get it when I try to explain it.

Sorry your doctor experience was so horrible. Unfortunately, it is becoming more and more common for doctors to just dismiss patient’s concerns. And even more rare to find a doctor that cares, listens, and tries their best to help. It is an ongoing issue across the world. Where I am in Canada, we either get stuck with very rude, dismissive physicians who couldn’t care less about your issues or symptoms, or we get no one as there is a massive doctor shortage. When chronically ill, that’s a tough option.

Are you able to get a second opinion where you are? I hope you can get someone else to pursue this further, and that you can hopefully get some answers

 

[Pino]

Good explanation of ME. People never seem to get it when I try to explain it.

Sorry your doctor experience was so horrible. Unfortunately, it is becoming more and more common for doctors to just dismiss patient’s concerns. And even more rare to find a doctor that cares, listens, and tries their best to help. It is an ongoing issue across the world. Where I am in Canada, we either get stuck with very rude, dismissive physicians who couldn’t care less about your issues or symptoms, or we get no one as there is a massive doctor shortage. When chronically ill, that’s a tough option.

Are you able to get a second opinion where you are? I hope you can get someone else to pursue this further, and that you can hopefully get some answers

I will have a talk with my family doctor about it, i need to read the letter from that Rheumatologist first.

 

[daylight]

@Pino, if not already thought of it, have you discussed with your specialists the use of SSRI medications?

 

[CptKirk]

Have you been able to find a really good rheumy yet?

By the way and don't laugh. WTF is gaslighting? I hear this term all of the time and have no idea what the hell people are talking about.

 

[Angelapinks]

Hi Pino,

Do doctors always act like this? Happens to me much to often, they do, what they always do, nothing else.

yes they do… At last from what I can say in Germany. Just a hint: Tell the doc exactly what you’re expecting and what you want him to do. I think you are meanwhile also pretty well educated to do so. The funny thing is - since I communicate in that way they are more serious and open because they understand that someone with a medical knowledge asking the questions.

If they do blood work and I want something specific I always ask for the specific test. Often they tell me it’s not covered by insurance but then I ask for a separate bill.

The same is for fancy testing. I always ask what diagnostic he expects to see, why he’s doing this test in this context and what a resulting therapy would be. If X-Ray’s are involved I always ask for options.

I know this especially from orthopaedics who try to generate some extra money from their lousy over-aged X-Ray equipment to the cost of my health…

But at last from my experience the good news is that things are manageable if you talk in the right way with them.

I guess I have been pretty lucky in that most of my doctors have evolved into good friends and take good care of my needs. I read up on what my problem may be and wait for his diagnosis before I ask lots of questions. I also tend to joke around a little to lighten the mood and they talk to me as if I am knowlegable and explain my testing results if I am not sure I understand. My urologist is a bit diferant in that he does not listen or explain too much. I need to pull answers out of him. When I explained about my dizzy spells getting up at night to pee he was not a fan of me using diapers but I just told him it was best for me at the moment. He offered another pill which I questioned and then he admitted that it doesn't really help much. I have been seeing him for about 12 years now and even entered a drug study at his request when he said it would help my problem. It did but when the study was finished he told me it was for a German company and even though the meds worked for me they were not available for use in Canada and I could no longer take it.

 

[dogboy]

Have you been able to find a really good rheumy yet?

By the way and don't laugh. WTF is gaslighting? I hear this term all of the time and have no idea what the hell people are talking about.

The term Gaslighting is from an old Alfred Hitchcock movie with the eponymous name, Gaslight. (I've always wanted to be able to use the word, "eponymous"...meaning of the same). Anyway, in the movie, a cheating husband is slowly making his wife believe she is going insane by changing and manipulating things in the house. The house is lighted by gas lights hence the title, Gaslight. It's a period film where I think he's able to make the gaslight go on and off by itself.

So gaslighting usually refers to someone who is manipulating facts or reality to trick or fool someone into believing something that isn't true.

 

[CptKirk]

@dogboy thanks. Seems to be a weird term and it makes sense with all of the assholic stuff going on in the US today!

Have you found a Rheumy worth seeing yet? If not, where are you located?

 

[Pino]

@Pino, if not already thought of it, have you discussed with your specialists the use of SSRI medications?

I did try that a long time ago, no effect at all (only nasty side effects).

 

[Pino]

Have you been able to find a really good rheumy yet?

By the way and don't laugh. WTF is gaslighting? I hear this term all of the time and have no idea what the hell people are talking about.

In Germany the term is used when a doctor does not take your symptoms serious and, instead, blames you for it, famous sentences like: "It is all in your head", are a big "red flag" for it. Same for example: "Your blood work looks O.K., your are healthy", ignoring the fact there are other markers present.

 

[Pino]

And now something positive:

I got a good information at twitter from someone with my diagnosis AND excessive thirst either, he was "gaslighted" with "Primary Polydispia" - It is all in your head - as well. He tried ORS to solve the problem, Oral Rehydtration Solution and was successful.
So i ordered sodium citrate and potassium chloride, additional table salt i had in big amounts at home and mixed it like WHO standards.
I trying this for three days now and i could reduce my fluid intake about 30%, my number of micturition is lower either.
All that without (!) worsening my POTS symptoms.

When somebody likes to know how this works and why, look at:

healthrising.org/blog/2023/12/09/chronic-fatigue-syndrome-thirsty-psycogenic-polydipsia/

Great article but no medical advice!

 

[dogboy]

@dogboy thanks. Seems to be a weird term and it makes sense with all of the assholic stuff going on in the US today!

Have you found a Rheumy worth seeing yet? If not, where are you located?II

It's my daughter-in-law who has all the medical problems which seems to include autoimmune disease. We both live in Lynchburg, VA and so she's been driving 50 miles to UVA hospital which is a very good teaching hospital. They've recently done some DNA testing so I think she may get some pertinent results at some point.

As for me, my biggest problems are degenerative osteoarthritis, the dubious joys of getting older. I'm always in pain but most of it's manageable. I'm sure you're in the same boat in that we begin to not only live with the pain but it starts to become our new normal which is weird.

 

[CptKirk]

It's my daughter-in-law who has all the medical problems which seems to include autoimmune disease. We both live in Lynchburg, VA and so she's been driving 50 miles to UVA hospital which is a very good teaching hospital. They've recently done some DNA testing so I think she may get some pertinent results at some point.

As for me, my biggest problems are degenerative osteoarthritis, the dubious joys of getting older. I'm always in pain but most of it's manageable. I'm sure you're in the same boat in that we begin to not only live with the pain but it starts to become our new normal which is weird.

You hit that nail on the head! On a GOOD day today I am in moderate pain, at my very best! Unfortunately, from mid October through at least April, moderate pain is something I'd damn near kill to have as more times than not I am in significant pain to INDESCRIBABLE pain! What pisses me off the most is BECAUSE I am a chronic pain patient and on multiple opiate medications (for more than 20 years now without ONE SINGLE issue) the instant people in the ER discover this (I always have my prescription list on me as there are too damn many pills to remember all of them) they INSTANTLY treat me like a fucking drug seeker, which is the fastest way to set me through the roof! The 2nd fastest way is to play Rap/techno/hip-hop/pop etc. which is *usually* on the radio in the ER!

IF you feel she needs a better Rheumy, the one I see is in Lebanon, Pa (not far from Lancaster) and is truly WORLD CLASS. If she ever needs to see a great one send me a PM and I'll get you all of his information.

CptKirk

 

[daylight]

When somebody likes to know how this works and why, look at:

healthrising.org/blog/2023/12/09/chronic-fatigue-syndrome-thirsty-psycogenic-polydipsia/

Great article but no medical advice!

Interesting read along as well as personal hardships related to living with ME. Thanks for sharing.

 

[dogboy]

You hit that nail on the head! On a GOOD day today I am in moderate pain, at my very best! Unfortunately, from mid October through at least April, moderate pain is something I'd damn near kill to have as more times than not I am in significant pain to INDESCRIBABLE pain! What pisses me off the most is BECAUSE I am a chronic pain patient and on multiple opiate medications (for more than 20 years now without ONE SINGLE issue) the instant people in the ER discover this (I always have my prescription list on me as there are too damn many pills to remember all of them) they INSTANTLY treat me like a fucking drug seeker, which is the fastest way to set me through the roof! The 2nd fastest way is to play Rap/techno/hip-hop/pop etc. which is *usually* on the radio in the ER!

IF you feel she needs a better Rheumy, the one I see is in Lebanon, Pa (not far from Lancaster) and is truly WORLD CLASS. If she ever needs to see a great one send me a PM and I'll get you all of his information.

CptKirk

Thanks for the references for her. She's also been to Duke medical, another great teaching hospital.

I'm sorry you're in so much pain. I can relate to the cold weather pain. It gets worse for me through the winter. I'm glad my wife and I moved to Virginia more than 40 years ago because Virginia winters aren't as long. Believe it or not, next week we're going to be in the upper '60s. Of course it will be raining but at least it won't be cold.

 

[CptKirk]

I tried Tn and though it was frequently much warmer, it was the radical temperature swings that hammered me, making it FAR worse that it ever has been here in Pa./

 

[Angelapinks]

Thanks for the references for her. She's also been to Duke medical, another great teaching hospital.

I'm sorry you're in so much pain. I can relate to the cold weather pain. It gets worse for me through the winter. I'm glad my wife and I moved to Virginia more than 40 years ago because Virginia winters aren't as long. Believe it or not, next week we're going to be in the upper '60s. Of course it will be raining but at least it won't be cold.

Winters in Southern Ontario bother me more now that I am older and of course Arthritis does not help at all. At least so far we have not had half the snow that Buffalo has had but it has been pretty darn cold and windy. I could go to the bathroom 5 times before going outside but as soon as I am out and in the car it seems I need to pee again. I have been to Virginia a couple of times and stayed in Richmond. Went to Luray Caverns, an awesome sight. Of course this was in summer so I am not sure what your winters are like.

 

[dogboy]

We have moderate winters with much of January in the mid 40's. What I've noticed as I've gotten older is that when the weather changes with a low front coming in, my arthritis is worse. It's the old "I can tell it's going to rain because my arthritis is acting up", something that I thought was hooey when I was young but now seem to experience.

 

[CptKirk]

My headache 1st and my lower back 2nd ALWAYS predict a change for the worse, weather wise! Someone should give me one of those 6 figure/year jobs as a weatherman! No way I can be wrong as often as they are as my body has been remarkably accurate!

Wish I had a job that not only paid as well as Meteorologists' jobs pay but the fact that they can be so badly off (wrong) yet never have any fear of losing their job because of that! Hell...screw up with what I do and people can die and it IS going to cost you directly, one way or the other!