Medical PTSD: how many have you had?

[vision blue]

I guess we have more med visits increasing probability of harm. Borrowing @Rufous McKinney clever phrase medical PTSD, i was reminiscing that Ive had four permanent bad effect visits- 3 docs (all i would argue malpractice) and one test had bad reaction to . Lifelong consequences

Also caught two very bad infectious diseases from doc , both in 2014, that also have been life altering

In addition , 2 further doc visits count as med ptsd. The effects did not last forever, but they both changed how I interacted with docs forever. One was an old-school doc otherwise very good but also with a God complex who as a test of how bad my liver was pushed on it really hard and just kept his hand there until I screamed in pain. I guess I screamed in pain faster than if I had no liver disease but he recommended at that point I get to a specialist. Well that gave me pain for I don’t know months I guess and from that point on I have never again let a doctor palpate in upper tight abdominal quadrant. callingvitb PTSD because we trust these people not to harm us When I dwell on it what kind of barbaric test is that for someone who has elevated liver enzymes and is ill.? The othet one that comes to mind is a rheumatologist who was just too rough with my joints giving me long lasting pain and mobility problems so now I won’t let anyone move my joints on exam again. Oh I almost forgot there’s a third one physical therapist who started me on such a bad advanced exercise for knees that seem to cause my kneecaps to pop out or something and I had trouble walking for about six weeks I don’t even know how to categorize that I guess that’s three things that affects from med staff. Long lasting but not lifelong

For test, side effects , ive gotten from MRIs , especially with injecting contrast, and I have this quirkmthat I happen to have of getting side effects from sonograms/ultrasound tests so these all gave me negative affects although we did not last more than well I don’t know if they were not lifelong I don’t think (except for one)

Others im not sure of. Was the 1/10th of a dose i finally allowed of iv iron life damaging? Not sure- had real problems from it.


OK so now it’s only fair on the positive side since presumably we have to assess the cost benefit ratio of med care . There have been three big ones on the positive side. I had an outpatient procedure/surgery under local anesthetic that arguably prevented cancer which most likely would’ve occurred. Second, a doctor said sonething that got me to alter behavior (tonprove her wrong) but I think probably also prolong my life by 10 years and avoid other med issues and finally a different physical therapist introduced me to kineseo taping and range of motion excercises. Even though he actually made both of my shoulders worse misdiagnosing them as frozen shoulder his two contributions have been life altering positive change

This is just medical not dental thatbthrough some historical accident was not considered medicine if I go through dental issues and catastrophes then my blood pressure will rise too much so I will explain what happened with dentistry another time

SonJust considering medicine what’s the balance on my experiences? Id say on balance, it was negative and even with the cancer risk I don’t know for sure it would’ve become cancer and I think on balance I would rather have taken my choice so if I could take it all back and not have the positive outcomes in exchange for not having the negative ones I would do all the med visits for sure. I think this is also behind the deep bitterness (or han for those who know the word) against medical care.

Now people can ground me. In terms of quantity and quality how to my experience is compared to others? Seems to me like I’ve had an excessive number of bad things and a minimal number of good things but perhaps I’ lack the perspective to know

I’m not sure what forum to place this thread. If the moderators want to pick up the whole thread and move it elsewhere, I’m OK with that just let me know where to find it. This did not seem appropriate for the lounge because I don’t know it’s not about cat videos or guitar music but it’s also not about treatment for CFS so not sure yet I think it’s still relevant because what CFS comes lots of doctor visits which themselves can be life-changing as they have been for me. Should I add two of my catastrophic things were before I was ever sick well I should qualify that but I’ve said enough

 

[Rufous McKinney]

otherwise very good but also with a God complex who is a test of how bad my liver was pushed on it really hard and just kept his hand there until I screamed in pain.

My husband and I were just discussing how current doctors won't TOUCH YOU. Its like your contaminated, or have leprosy.

I had a very old school doctor who could do all the chiropractic/energetic adjustments...he would touch you all over the place.

Well I see what you described I'd be never going back there, add to the list.

 

[Rufous McKinney]

I guess we have more med visits increasing probability of harm. Borrowing @Rufous McKinney clever phrase medical PTSD, i was reminiscing that Ive had four permanent bad effect visits- 3 docs (all i would argue malpractice) and one test had bad reaction to . Lifelong consequences

My nightmares started at one year old. So I could just keep listing.

Loss of control sets in; traumatic. THAT is a huge aspect of all this, if you ask me.

So they subject me to tests that hurt when I'm a toddler. Hello? Who allowed that?

The car rolled over wiht me in it: 18 months old.

Im 68 years old, now.

67 years of this.

I"m really grateful for my life. yet This exists every day, now, still.

 

[BrightCandle]

At about 20 appointments in I started counting both the appointments and the different people I was seeing, keeping a list. I had 170 appointments with 70 different people. All but one of them was negative where the outcome was either mildly harmful or extremely so. The physiotherapist put me in a wheelchair, the complaint team and PALs helped cover it up by fabricating my record. The neurologist was dismissive and gave me drugs that have left me with lasting visual hallucinations. The headache team just wont call me back at all, they promised me some fancy CTRG atongnist drugs but having followed up 4 times over the past 2 years they never call me back, Neurology discharged me so I can't even get rereferred. My GP combined with physiotherapists are the ones that worsened my fatigue with exercise. The CBT therapist also did the same, you get GET inside of CBT in the NHS, its part of the treatment they believe in ever increasing outside activity. I never found a GP who gave any care, lots of drugs that hurt me, no useful diagnostics were ever done. Urology just wanted to cut my testicles out, for what I now know is nerve pain from my lower back and a kidney infection.

When Covid hit all my specialists appointments were cancelled. Not postponed just cancelled, like I had been discharged. I got discharged a lot when they couldn't treat me which frankly is ridiculous, refer me onwards to another specialist but no they discharged me like there was nothing wrong.

By the time I got to the ME clinic it was already 7 years on and I was a bit wiser as to the harm doctors were doing to me so when I got a psychology questionnaire on my teenage years I was having none of it and avoided being abused by that nutter who never once asked what my symptoms were.

I used to provide a symptom summary to every single person, as my condition progressed I kept that sheet up to date. Not one person in all those appointments actually looked at it and asked about the symptoms, it never made it into my medical record and so large chunks of reports of what I suffer from are still not in my medical record at all. I have no diagnosis of anything at all on my medical record, 170 appointments and they have given me no diagnosis at all.

I don't just have medical PTSD I have murderous rage towards the NHS.

 

[themjay]

@BrightCandle I echo all your above. It would take far too much energy to recount the agony, humiliation and neglect that our sainted NHS has meted out on me over the past 20 years. Thank you for sharing.

My partner who suffers with mental health issues has accompanied me to every one of my appointments (she is my carer and wheelchair propeller!) The trauma it has inflicted on her is in some respects worse than on me - she shares your rage.

The sneering, disbelief and ignorance slowly aggregate and it is only in hindsight that you comprehend this hell of an illness has a parallel partner in crime - the medical profession.

 

[YippeeKi YOW !!]

This did not seem appropriate for the lounge because I don’t know it’s not about cat videos or guitar music

YIKES !!!

The Community Lounge threads are about wasaaaay more than cute kitty videos and guitar, or any other, music threads, and to reduce them to that is a disservice to members here, searching for support and a sense of community and camaraderie in areas not strictly covered by the other, more medically oriented, threads.

It's also what separates Phoenix Rising from the other ME/CFS sites, and makes it unique in terms of service to all its members needs, from the medico-scientific to emotional & community support ....

• It's about places to share small triumphs or painful stumbles, things whose importance won't be apparent to the non-ME community, who don't face the same challenges that we do, every flucking day, 24/7/365 ....
• To vent frustration and anger and feelings of despair (the Post Your Daily Moan thread) that you can't share with family or whatever friends have hung in with you thus far, because they've heard it all before and may have reached tolerance limits .....
• A place to send up an R U OK post to members whom you haven't seen posting for awhile and are concerned about (Updates And Follow-Ups)....
• To share things that you've bought that have improved your ME/CFS life, and that you want to share with others who might also benefit from them (Retail Therapy: What you’ve bought that was useful, helpful, healing, or just for the hell of it) .....
• Its for a place to remind yourself what you still have to be grateful for, or to read what others are grateful for (What are you grateful for today?) .....
• A place to share something that made you laugh, smile, or chuckle and improved that particular moment in a day which probably isn't exactly overloaded with fun, fun, fun (Joke Of The Day). A function that was deemed important enough for the ME community that it was opened by the venerable Cort Johnson, the founder of Phoenix Rising ....
• A place to share spiritual beliefs or thoughts that might be helpful to others (Something to Ponder) or that you just want to give more personal reality to by putting it in writing ...
• A place to share the distractions that keep so many of us going, like good movies (Old And New Movies & TV: The Good, The Bad, The Meh), good books (there's so many threads in this category, like Books To Expand Knowledge, Books on ME, that you should just use the search feature in the far right of the dark blue band at the top of any page, and enter 'Books', then 'Search titles only')
• A place for nifty and often off-beat animal posts, almost always amusing and often edifying (Animal News and Smiles of Today)
• A thread for the uplifting, or witty, or edifying Quote of the Day ....
• Threads with various games, many of which will help kick-start staggering brain function (Keep Training Your Brain, Pass the Torch...)
• Tongue-In-Cheek threads like Want an argument?, which invites posters to release pissed-off or other negative energies by starting a non-inflammatory argument about anything at all, and the sillier the better .... a lot of the entries are side-splitters ...

There's soooo many others, but these are the ones that spring readily to mind ....

This site is about a whole lotta things, and every one of them is an integral part of our community. Including the cute kitty, puppy, bird, and other threads ... so far, no adorable baby threads, but that's not a hint .... definitely NOT a hint .... please, not a hint ....

 

[YippeeKi YOW !!]

Medical PTSD: how many have you had?
God, I've lost count. I really have.

I've gotten to the point where I will literally do almost ANYTHING to avoid EVER stepping into another Drs office / waiting room again. Which probably isn't the healthiest approach for an ME/CFS sufferer, not to mention some other previous health issues of a seriously life-threatening nature, and the constantly looming threat of resurgence.

The fact is that the medical system, whether the NHS in the UK, or our own badly flawed one here in the US, is a BUSINESS. The object of a business is to make as much money as possible, in any way possible, for as long as practicable, and damn the torpedoes. And it's a business run roughly along the same lines that the Mafia found so remunerative in the 50's, 60's, 70's, and 80's ....

It is what it is.

None for me, thank you. Had as much as I can take. Please God.

 

[Blue Jay]

I've had a mixed bag of experiences. On occasions, I've been so grateful to the NHS - other times have been life-changing but not in a good way.

My worst experience was when a badly botched and misdiagnosed breech delivery changed my life forever. Much as I love my first born, that mistake eventually disabled our whole family. We seem to be teetering on the edge of catastrophe every day.

current doctors won't TOUCH YOU.

Is this because of fear of being sued? It seems common to all doctors nowadays. My GP seems much more relaxed doing telephone appointments (since covid).

 

[vision blue]

That so totally sucks @BrightCandle I didn't list btw all the things they wanted to do to me. Its not just the NHS but i guess that doesn't help anyway. I share the rage. And like you i used to bright eyed and bushy tailed do so much prperation for visits- bring in symptom summaries and journal articles and trends in lab tests graphed with trend lines, and relevent records from my history. Of no use. I was did my own heart montiroing overnight with a Heal Force (one lead) EKG i bought but since it wasn't his ofifcially ordred tests, it was just ignored. Obviously too much to tell and there's lots of category Theres the "insult to injury" category and the Injury itself category. And others.

I am very glad they did not despite there best efforts extinguish your bright candle

I wan't dissing the lounge @YippeeKi YOW !! I love the lounge and post there too. love your retail therapy thread btw. Just pointing out best place for this I think important thread wasn't clear

@Strawberry was it what they did after the car crash that was the first med ptsd?

so well put @themjay : "The sneering, disbelief and ignorance slowly aggregate and it is only in hindsight that you comprehend this hell of an illness has a parallel partner in crime - the medical profession. " I could say more but you put it so well i'll just mangle it!

I still need to read through others. Comparing is helpful here. Incidentally, in the two years i've been mostly doc free from the pandemic, i've had much fewer setbacks. The only in person med visits i had was 2 last minute urgent eye visits, one of which left me with permanant damage which fortunately is just minor cosmetic (so far) and neither found the real source of pain.

 

[YippeeKi YOW !!]

in the two years i've been mostly doc free from the pandemic, i've had much fewer setbacks.

The only in person med visits i had was 2 last minute urgent eye visits, one of which left me with permanant damage which fortunately is just minor cosmetic (so far) and neither found the real source of pain.

I rest my case ....not that I have to here, I think we've all had the .... hmmmmm .... distinctly different .... unusual unsettling experience that medical care today is, at least for a lot of us here.

I wan't dissing the lounge @YippeeKi YOW !! I

Somehow dismissing it as kitties and guitar music sort of felt ... you know .... hmmmm .....

I think that posting it in the Community Lounge might have been a good idea, since this deals distinctly with our emotional (and fully justified) reactions to the kind of care that's dispensed on a regular basis to anything coming thru the door that Drs can't immediately pinpoint and assign a hearty dose of those all-time faves, anti-d's, anti-a's, abx's, whatever's on the Pharma Specials list that day ....

But here's good, too ....

PS .... The more I think about it, the more I think this place is the better choice ....

EDIT .... for P.S.

 

[YippeeKi YOW !!]

The physiotherapist put me in a wheelchair, the complaint team and PALs helped cover it up by fabricating my record

Yeah, been there. I thought it was an aberration by a particularly third-rate Dr, and not the usual pro-forma go-to ...

Why they bothered making the altering of medical records a felony in the US beats me. Try to prove it.

I don't just have medical PTSD I have murderous rage towards the NHS.

Cheez-us .... given what they've done to you, I dont know why you're not a medical specialty-axe-murderer.

 

[YippeeKi YOW !!]

@Loomcgoo , @Blue Jay
It's good to see you here. Or anywhere., for that matter. It's nice to know that y'all are around ....

 

[Tammy]

I've had several incidents of gaslighting during Dr. Visits but no physical harm done.........UNTIL a visit to a Neurologist just this past February. Why I didn't walk out...............I have no idea. I'm disappointed in myself that I didn't. She was determined to prove to me that I did not have any muscle weakness. She kept making me over and over again stress my muscles out. Push harder.............push harder! She was applying her muscle strength against mine and I was to resist. You're not pushing hard enough! Sit up straight.............your posture is terrible. Push harder...........come on! (I'm not exaggerating). She was determined that I was going to pass the physical challenges she was giving me. I should have walked out there and then with my middle finger in the air. Of course the next few days my muscles were screaming.

So far most of my negative experiences have been with neurologists. I swore I would never go back to one after the first time one asked me if I had considered the illness to be all in my head............but I did and I payed for it. I know I know, i should have never cooperated with the physical challenge in the first place............and that was my bad. She told me that if I would just go to physical therapy things would be better and if I took gabapentin that my numbness would go away. Good grief. She also talked to me half the time in a demeaning way. I know what my body has been through. DON"T ADD INSULT TO INJURY. PHYCIAN DO NO HARM

 

[YippeeKi YOW !!]

My GP seems much more relaxed doing telephone appointments (since covid).

Probably because that way, he doesn't have to look you in the eye ...

Ad the touching part? I think you're right. It most likely has to do with fear of being sued. Like there aren't any number of other grounds for that ....

 

[YippeeKi YOW !!]

Why I didn't walk out...............I have no idea.

Oh Tammy, it's because we all hope for a miracle, and after all, they have all that education and experience, and I'm going to pay for the stress and effort of getting here anyway, and maybe if I do everything she demands she'll see that I really DO have something more than muscle tone issues, and if I don't try, I'll never know if this could have turned into the miracle I've been looking for ....

And on and on and on .... because we're desperate. For help, for hope, for someone in the medical community to actually believe us ... and they're perfectly willing to take advantage of that .... we're the Little Red Riding Hoods of the medical community ....

Now I'm pissed again .....

 

[Tammy]

@YippeeKi YOW !! Actually, the ONLY reason I went to the visit was to appease my Daughter. I really had zero hope for a miracle nor did I expect anything positive to result from the visit. I've been to half a dozen neurologists. The way this recent visit came about is that I had some pretty serious neurological issues come up last December. MRI's and Cat Scans all came out clear so specific things were ruled out which I was relieved about and after clear results I really didn't feel like I needed to follow up with a neurologist visit which was suggested for me. My Daughter told me that she would drive down from where she lived to go to the visit with me and when I informed her that there really wasn't any need for me to go and that I really didn't want to go she continued to persuade me and I gave in. She didn't make it after-all to go with me and I do wonder if she did if the Neurologist B**CH would have acted differently had she been there.

 

[Rufous McKinney]

I should have walked out there and then with my middle finger in the air.

Oh Tammy that's awful.....just awful.

It is what it is.

None for me, thank you. Had as much as I can take. Please God.

thats close to my position as well.

I"m headed out at a bad time, to desperately see new dentist this afternoon. I'm covered in Magnesium and Xanax.

"I do not believe you" said the dental surgeon....whom I never returned back there.

The sickest part of my body is my mouth and do I want to show it to anybody? Do I want to open it even? No.

(scream) (OK, calm calm its ok Tom Hanks Castaway Howard is bravely getting tooth procedures. be brave rufous.)

 

[Tammy]

I"m headed out at a bad time, to desperately see new dentist this afternoon. I'm covered in Magnesium and Xanax.

Hope all goes well for you Rufous. Magnesium and Xanax for me too before dentist.................only I wasn't used to the Xanax so I walked into the dentist office like a drunken sailor! woops

 

[Rufous McKinney]

Hope all goes well for you Rufous. Magnesium and Xanax for me too before dentist.................only I wasn't used to the Xanax so I walked into the dentist office like a drunken sailor! woops

Thats the "other problem" with the whole deal. I can't think straight the entire time and they want to tell you all this stuff.

I'm bringing my husband and I"ve tried to Prep him. I did 10 minutes of downloading into the receptionist. She was great....hurray for her already.

nothing like the total stupor while totally anxious. It just sucks.

 

[YippeeKi YOW !!]

Actually, the ONLY reason I went to the visit was to appease my Daughter.

My bad.

How'd the appeasement part work out?