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Doctor Doctor, gimme the news - but not that again.

It's been a full month since my last visit to the forum and my flaky streak continues as my online footprints prove me to be a 'hit and runner.' When people talk about 'online footprints' my first thought is, 'well the Tory government can bloody well see how sick I am because I post so much and Google so much.' My second thought is, 'why do I join all these communities and write these posts if I then stay offline for a week, or a month, like how rude must I appear to people?' I know that the internet is just the internet; I have seen many people 'disappear' in my time online (particularly in the mental health communities), and I know that chronic illness is, logically, going to stop people from actively engaging online as much as other people do. Still, I wonder why I bother if I'm just going to shout something and then walk off. My online footprints show I am a lost wanderer. Not really belonging anywhere. Just breezing through.

It's also hard to know where to begin when you decide to get writing. A foggy, fuzzy mind is no help when you're trying to work out how to articulate your current concerns and symptoms, the experiences of the last few days, or weeks. Since my last entry I have thought a lot about how to speak to a doctor; more specifically, WHO the doctor should be. My lifetime GP, the only doctor who has ever understood me, has retired. I'm now faced with the task of finding a new GP, one that can listen to and fully comprehend my story, as I start from scratch. My former GP had known me since I was a baby. My story is not a simple one, as I've been a psychiatric case for most of my life. I'm painfully aware of how much that complicates things. Mental health professionals, especially, have made me painfully aware of how much that complicates things in the minds of others.

My first post here was a thread about how little credibility I seem to have as a lifelong psychiatric patient. It made me hesitant to make my concern public on this forum because I know what a battle it is to have M.E/CFS taken seriously as a physical illness and not a psychiatric one. It made me feel like I should be shunned. Without going into it again too deeply, I've had anxiety for most of my 29 years, diagnosed with social and generalised anxiety plus agoraphobia at 14, and my life has pretty much been defined by that since. In October 2011, I finally hit a wall in my toxic, 5-year relationship, and my body responded to the hopelessness of the situation and my need to escape it by panicking, my heart rate leaping to 120, then 170, for which I was hospitalised for 24 hours as they ran tests. When I came home, I noticed a number of physical sensations that I'd never felt before, such as permanent indigestion, a light, fuzzy head, dizziness. I also suffered a vomiting bug in November, but I can't be sure if symptoms actually began after that. I was told, 'It's your heart rate.' All right. I improved after a couple of months, got mentally and emotionally calmer and healthier, ended my relationship firmly with no fanfare, and started up my life. Symptoms stayed and I noticed more. 'It's the beta blockers.' I came off the beta blockers. 'You have acid reflux and maybe some IBS.' And on it went, years of mostly acid reflux treatment (to NO relief, I might add), with little attention on my numerous other symptoms, until in 2017 I decided enough was enough and wrote my GP a letter, detailing all the symptoms I experience. I was then tested for celiac disease as my father had tested positive in blood a few months before (he didn't even know), but both my blood and my biopsy came back completely negative. My father's biopsy was then negative, too. I haven't heard from the hospital since, and I'm left without a GP.

The plan of action I keep coming back to is speaking to my father's GP. He knows all about dad's M.E and his celiac results, and if I want any answers to this mysterious illness of my own, my dad's GP may be the best candidate to consider me seriously. I am, after all, directly related - I'm his daughter, my symptoms are many, varied, debilitating, consistent with testimony about M.E/CFS (and celiac), and a few mirror my father. Logically, he may be my best hope. However, my mum disagrees, saying he's 'weird' and 'doesn't know' anything about me, unlike my old doctor's son, who I have seen a number of times but dislike because he condescends to me and makes me feel like a stupid child. He may know me, but he doesn't understand me. And that's the problem.

It has been very, very hard to get people to take my physical complaints seriously, especially since my celiac biopsy came back negative. Even a gastroenterologist in 2017, after I described the last few months and the sudden worsening of my reflux, which now had me vomiting, throwing up acid in the night, unable to swallow medications, cutting out foods I previously ate just fine, told me he couldn't understand my weight loss (a stone in a year), and referred me to a psychiatric dietitian for an eating disorder.

It's a fight for anyone with M.E, or Celiac Disease or any other hard-to-diagnose illness, to be taken seriously. It's another fight altogether when you have a very long, very full history of psychiatric disorders. I'm a nervous nelly. I'm a paranoid nut. I'm young. And I'm a woman. All of this scratches a line through my file and gets me buried away in a drawer. I can't have a physical syndrome/disease, because apart from acid in my esophagus and a hiatal hernia, nothing is evidently wrong with me. The abnormalities are in my mind, not my body. I do not have a neurological disease, I have a psychiatric disorder. This has been hammered home to me on more than one occasion by mental health workers who have sat in my living room and told me, in no uncertain terms, that stress and depression are giving me these symptoms and my mind is conjuring them so I can avoid life.

The saddest thing is, sometimes I believe it.

Comments

Have you actually been able to meet your dad's doctor? I just wonder because he sounds preferable to Dr Condescension but only if you've actually gotten to meet him and see that he is sympathetic.

Alternatively, has your dad said his doctor is good and understands the ME and takes it seriously?
 
@PoorlyPixi
Noooooooooooooo ...... do NOT believe it !

For one, I'd hazard a wild guess that at least 50-75% of us here on these threads have bumped hard into the " ....all in your head" school of dismissive dis-diagnosis, usually from Drs who simply don't have a clue. Keep in mind the ancient joke about Drs: "Whadaya call the guy who graduates dead last from Harvard Med School? ......Doctor." God help us.

Secondly, and I've caught flack for this in another thread, I'm not a fan of the "Everything Is A Mental Illness" school of thought. I tend to believe that a certain amount of depression is an indication of someone who thinks about, and is aware of, what's going on around them. Grnted, long and unshiftable bouts of depression don;t fall into this category, but they're often caused by other illnesses, as yet undiscovered by the sufferer or their Drs, who prefer to stamp "Mental Illness" on them and hand out massive amounts of psychotrophic , often brain and life damaging medications, and way worse than whatever they're intended to treat. Not to mention useless.

Anxiety/Panic are also often symptoms of other , very physical, diseases or disorders. Unfortunately, Drs know less about the human brain and what influences it, and how, than a gnat knows of quantum mechanics, so there'e that.

I have more thoughts on this, but am running out of steam right now, will come back and post again when my brain kicks in.

In the meantime, know that it's entirely possible that you know more about your condition then all the doctors you've seen, combined. And factored to about 10.

Don't lose hope. Sending you huge empathy, hugs, and great clouds of hope.
:hug: :hug: :thumbsup::thumbsup: :woot::woot::woot: :xeyes:..... this guy's my current fav smilie, and past time for his morning stroll .....
 
Have you actually been able to meet your dad's doctor? I just wonder because he sounds preferable to Dr Condescension but only if you've actually gotten to meet him and see that he is sympathetic.

Alternatively, has your dad said his doctor is good and understands the ME and takes it seriously?
I haven't met him yet, just smiled and nodded when he walked by in the waiting area. Since my doctor left, I have seen temporary doctors at the surgery. I try to avoid Dr Condescension as he has asked me in the past, even while battling a virus, if I'm underweight on purpose because I want to be thin. My whole family was down with that virus with no appetite and lots of resting, but no, I lost weight because I wanted to be thin. It begs belief sometimes...

My dad has said good things about his doctor, seems to understand the M.E and has written notes for my dad's Personal Independence Payment forms.
 
@PoorlyPixi
Noooooooooooooo ...... do NOT believe it !


For one, I'd hazard a wild guess that at least 50-75% of us here on these threads have bumped hard into the " ....all in your head" school of dismissive dis-diagnosis, usually from Drs who simply don't have a clue. Keep in mind the ancient joke about Drs: "Whadaya call the guy who graduates dead last from Harvard Med School? ......Doctor." God help us.

Secondly, and I've caught flack for this in another thread, I'm not a fan of the "Everything Is A Mental Illness" school of thought. I tend to believe that a certain amount of depression is an indication of someone who thinks about, and is aware of, what's going on around them. Grnted, long and unshiftable bouts of depression don;t fall into this category, but they're often caused by other illnesses, as yet undiscovered by the sufferer or their Drs, who prefer to stamp "Mental Illness" on them and hand out massive amounts of psychotrophic , often brain and life damaging medications, and way worse than whatever they're intended to treat. Not to mention useless.

Anxiety/Panic are also often symptoms of other , very physical, diseases or disorders. Unfortunately, Drs know less about the human brain and what influences it, and how, than a gnat knows of quantum mechanics, so there'e that.

I have more thoughts on this, but am running out of steam right now, will come back and post again when my brain kicks in.

In the meantime, know that it's entirely possible that you know more about your condition then all the doctors you've seen, combined. And factored to about 10.

Don't lose hope. Sending you huge empathy, hugs, and great clouds of hope. :hug: :hug: :thumbsup::thumbsup: :woot::woot::woot: :xeyes:..... this guy's my current fav smilie, and past time for his morning stroll .....

Thank you so much :D:) It's really hard not to believe it as I'm getting it from all sides, the mental health team hellbent on getting me to concede it's all psychologically-rooted, and even a few doctors looking at my tiny frame, very low weight and BMI, and concluding that reflux can't make a person so small and undernourished so there must be a psychological disorder. When I was first diagnosed with social anxiety and agoraphobia I had been bullied at school about being 'ugly.' However, I was never called fat - I was actually the butt of jokes because I was skinny - and my issues were with my face, mostly my acne, my overbite, and my hair. With my figure, I actually wanted it to be bigger, more shapely and feminine, like a woman. But that is not what mental health professionals are taught and trained in, it doesn't fit the 'typical' case of a young woman who dislikes her appearance. So I was slapped with the 'anorexic' tag and it's stayed with me for over 12 years. Even when my weight was actually healthy for 7 of them. Go figure I guess! I lost the healthy weight gradually until it suddenly fell right away in 2017 as I tried desperately to get help for my 'worsening reflux,' and the rest. But I am dealing with the deaf and stupid, it would seem! I 'want to be thin.'

I think you make interesting points and I agree with a lot of it. In my case however, anxiety disorders go way back to my early childhood as I grew up in a chaotic home of anger issues, domestic abuse, theft, police raids (not plural, actually, one raid as far as I know), and repeated separation, so it's really no wonder I went on to be an incredibly nervous child, and then an emotional, fragile adult. However, this has never given a doctor pause about whether or not my father has M.E or if he's just psychological. With me, I can only ever be psychological as far as professionals are concerned, be they physical doctors or mental health workers, and it doesn't matter if M.E is hereditary or not, it doesn't matter if I mirror my father, I only get to be a mental case. I do think physical illnesses can be triggered by mental distress/trauma/disorders, but it doesn't mean the physical illness doesn't exist, which is my battle. It's hard to know what to believe... sometimes I think maybe I am just a mental case. I also believe that psychological disorders can actually be caused by physical illnesses as you say. I remember reading that Celiac Disease, and I think M.E/CFS too, causes terrible anxiety and depression. Which makes sense. But I can't say I fit with that myself because my psych history goes back much further, before I was even 5. My psych history is... everything, in my case.

Despite all this I'm convinced, as you said, that I know my body better than they do. I live here! And it's terrible! :xeyes: haha. I often have daydreams about giving them all my body for 2 weeks. Wouldn't it be satisfying to watch? :smug:

Thank you
 
My dad has said good things about his doctor, seems to understand the M.E and has written notes for my dad's Personal Independence Payment forms.
I would try your dad's doctor then. It sounds like he would believe you. I think that is so important with this horrendous disease.

I'm going to a new doctor tomorrow. Like you, mine retired about 2 years ago and I don't like the one I picked instead. This new doctor was recommended by my neighbor who has thyroid issues.

She said the doctor listens and also works with her on deciding dosing, etc. She also sent me a 16 page form to fill out so it seems like she really wants to have a good understanding on what is going on with me.

I'm in the same boat as you with the anxiety/agoraphobia in my record. Have only called paramedics 2x in my life for severe chest pain and it turned out to be hyponatremia (still dangerous per the ER) but the paramedics immediately assumed panic attacks with my history.
 
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@PoorlyPixi
anxiety disorders go way back
We both had difficult, destructive childhoods and carry the scars. I had bad rash outbreaks, angry weals all over arms and often painfully visible. The anxiety didn't hit seriously until the ME, and it nearly killed me. You have my deep empathy. I know that road, it sucks. But it does get better, little at a time. Oddly, this petulant little misery of an illness has some hidden benefits. For one thing, living with it makes you stronger, as Hemingway said, in the broken places.
I went on to be an incredibly nervous child, and then an emotional, fragile adult. However, this has never given a doctor pause about whether or not my father has M.E or if he's just psychological
I posted an article and started a thread on it called, I think, "It's not in your head, women ARE treated differently by medical community" .... it engendered close to zero interest. But the proof is everywhere. I deeply fear medical apptments, and have given up on them entirely.
I do think physical illnesses can be triggered by mental distress/trauma/disorders, but it doesn't mean the physical illness doesn't exist,
Why can't doctors get that? Oh. Yeah. Because BigPharm, which funds almost all medical schools through research programs, grants, "free" medication samples, medical trials, and hundreds of other programs, doesn't let that particular mindset into the classroom. Not good for business. Bad return on their investment.
It's hard to know what to believe... sometimes I think maybe I am just a mental case
No, I don;t think you are. I've read some of your other posts, and you seem eminently sane to me, particularly considering the hellish stresses your surviving under and with. Don't let them shift you into their thinking. Don't let them win.
I also believe that psychological disorders can actually be caused by physical illnesses
Abso-toot-ly. Cancer=depression and anxiety. ME=depression, anxiety, agoraphobia. Hypothyroid=energy debt that turns into ....depression, anxiety. There's more but I'm worn out and can't think.
I often have daydreams about giving them all my body for 2 weeks. Wouldn't it be satisfying to watch? :smug:
Oh, church!!!! We have the same fantasy!!! Just once, I'd like to see their condescending, arrogant, smug little smiles fade as they reach for the razor blades after 2 weeks of this shite.

You just hang in Pixi. There has to be a pony in here somewhere, and you're overdue to find it. I'm sending you empathetic hugs and all the support I can muster :hug: :hug: :hug: :woot::woot: :thumbsup:
 
I would try your dad's doctor then. It sounds like he would believe you. I think that is so important with this horrendous disease.

I'm going to a new doctor tomorrow. Like you, mine retired about 2 years ago and I don't like the one I picked instead. This new doctor was recommended by my neighbor who has thyroid issues.

She said the doctor listens and also works with her on deciding dosing, etc. She also sent me a 16 page form to fill out so it seems like she really wants to have a good understanding on what is going on with me.

I'm in the same boat as you with the anxiety/agoraphobia in my record. Have only called paramedics 2x in my life for severe chest pain and it turned out to be hyponatremia (still dangerous per the ER) but the paramedics immediately assumed panic attacks with my history.

Thank you for this encouragement, I really do feel like I crumble under their insistence that I'm just a psychological case at times, and question myself. Like I wonder if I'm in denial. So it means a lot to see others in the same boat, fighting the same tag and label. How did the appointment go? I hope you've found a good one now. The form sounds promising. I know how frustrating it is to try out new doctors and find they're not a good fit... and that's putting it mildly at times!

Mmm, they would definitely assume panic attacks with me too. Thank God the real problem is found. But it's a scary thought, having our history, things can be so quickly and easily missed
 
@PoorlyPixi

We both had difficult, destructive childhoods and carry the scars. I had bad rash outbreaks, angry weals all over arms and often painfully visible. The anxiety didn't hit seriously until the ME, and it nearly killed me. You have my deep empathy. I know that road, it sucks. But it does get better, little at a time. Oddly, this petulant little misery of an illness has some hidden benefits. For one thing, living with it makes you stronger, as Hemingway said, in the broken places.

I posted an article and started a thread on it called, I think, "It's not in your head, women ARE treated differently by medical community" .... it engendered close to zero interest. But the proof is everywhere. I deeply fear medical apptments, and have given up on them entirely.

Why can't doctors get that? Oh. Yeah. Because BigPharm, which funds almost all medical schools through research programs, grants, "free" medication samples, medical trials, and hundreds of other programs, doesn't let that particular mindset into the classroom. Not good for business. Bad return on their investment.

No, I don;t think you are. I've read some of your other posts, and you seem eminently sane to me, particularly considering the hellish stresses your surviving under and with. Don't let them shift you into their thinking. Don't let them win.

Abso-toot-ly. Cancer=depression and anxiety. ME=depression, anxiety, agoraphobia. Hypothyroid=energy debt that turns into ....depression, anxiety. There's more but I'm worn out and can't think.

Oh, church!!!! We have the same fantasy!!! Just once, I'd like to see their condescending, arrogant, smug little smiles fade as they reach for the razor blades after 2 weeks of this shite.

You just hang in Pixi. There has to be a pony in here somewhere, and you're overdue to find it. I'm sending you empathetic hugs and all the support I can muster :hug: :hug: :hug: :woot::woot: :thumbsup:


:thumbsup::hug:Very inspiring and encouraging, thank you! I feel like printing out this bit: "Don't let them shift you into their thinking. Don't let them win."

I'm sorry you also had to deal with a tough childhood. I think that can cause permanent scars both mentally and physically. It really sets the future path of a person's life, imo, but it's possible to overcome I think. I hope!

I would have flown to that thread because I really believe it. I don't know if I'm a 'feminist,' I probably have some feminist views, and I think maybe this topic is ignored and steered clear of because it looks like a feminist issue/rant. But there seems to be evidence that women have been considered 'hysterical' in the past, and wasn't M.E put down to simple hysteria? Also, M.E is more common in women isn't it? There's something there. Is it just male doctors that are intimidating? I find even women look at me as just mentally disabled and don't take me 100 per cent seriously.

I think anyone regardless of gender has a black mark on them that affects their credibility when they have a long history of mental health disorders. But it's definitely worse for women and maybe dare I say young women, who aren't far from their chaotic teenage years. Millennials get a bad rep too.

I never know what to think with the topic of Big Pharma. I would have thought they'd want to throw painkillers at M.E patients like candy!

Haha, I wonder how many of us have had this fantasy actually. I think I may be influenced by TV like Vampire Diaries because I've imagined myself sort of like a witch, making them feel all the symptoms of my body and watching from the sofa as it hits them :rofl: . I've had a few too many people come into my home and condescend to me.
 
How did the appointment go? I hope you've found a good one now. The form sounds promising. I know how frustrating it is to try out new doctors and find they're not a good fit... and that's putting it mildly at times!
She was difficult to read but she put in for a bunch of tests so it seems that she believes something may be going on which is encouraging.

The tests are coming back with some red flags but nothing I think she is going to say is anything remarkable. We will see though because she wants me to come back in 2 weeks.

But it's a scary thought, having our history, things can be so quickly and easily missed
Exactly. The medical profession always says anytime you suspect a heart attack get checked out right away but then so many of us get lumped into the "Oh, :rolleyes:it's just a panic attack." basket. :bang-head:

The thing is, I know when I'm having a panic attack because it is usually attached with feelings of fear and I did not having that with these incidents. I just knew my symptoms matched all the things they say to look for when you are having a heart attack.
 
@PoorlyPixi
I'm sorry you also had to deal with a tough childhood.
I'm guessing that we're not alone. Probably somewhere around 60-75% of all adults come from a troubled, sometimes devastating, childhood.
But there seems to be evidence that women have been considered 'hysterical' in the past, and wasn't M.E put down to simple hysteria? Also, M.E is more common in women isn't it? There's something there. Is it just male doctors that are intimidating? I find even women look at me as just mentally disabled and don't take me 100 per cent seriously.
Women Drs are often worse than their male counterparts. They have to fit in to what is still a Good Ol' Boys community mind-set, and going along to get along is rampant.


And the 'hysterical' tag has been around for 130+ years. We can mostly thank that misogynist Freud for a lot of it. Even the word 'hysterical' comes from the Greek 'hystos', womb.
I never know what to think with the topic of Big Pharma. I would have thought they'd want to throw painkillers at M.E patients like candy!
Not under the prevailing atmosphere re: opioids and the unbelievable problems of drug-addiction usually with roots in earlier Drs prescriptions, suicides, etc.


Now even cancer patients have a hard time getting adequate pain meds, because Drs don't want to fall under the scrutiny of the AMA and/or the DEA, gutless little $%^&&*(@!# that they often be.

How're you doing?
 

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