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Default May 20, 2019 at 08:56 PM
  #1
Hey PCers...

So I am having a horrible time and was hoping y'all could help me. I turn to y'all because my brain just isn't functioning, and neither is my body.

A little bit of history, part of my history of abuse includes being denied medical care for serious injuries/illnesses and being told I'm just "looking for attention."

Now, with chronic illnesses and conditions, I'm having a lot of trouble just dealing with some days being too unwell to do things, and explaining this to people or even just not judging myself for it.

Does anyone have any articles on a) dealing with fatigue from chronic conditions b) dealing with the side effects on not believing you're ill and even being trained not to believe you're ill? It's less about making others believe that I'm ill as actually feeling like I can say "I'm ill" and will be believed. That I'm not faking. That there actually is something wrong.

And of course, anyone who can commiserate or experiences this, feel free to chime in.

Thanks y'all.

Seesaw

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Primary Dx: C-PTSD and Severe Chronic Treatment Resistant Major Depressive Disorder
Secondary Dx: Generalized Anxiety Disorder with mild Agoraphobia.

Meds I've tried: Prozac, Zoloft, Celexa, Effexor, Remeron, Elavil, Wellbutrin, Risperidone, Abilify, Prazosin, Paxil, Trazadone, Tramadol, Topomax, Xanax, Propranolol, Valium, Visteril, Vraylar, Selinor, Clonopin, Ambien

Treatments I've done: CBT, DBT, Transcranial Magnetic Stimulation (TMS), Talk therapy, psychotherapy, exercise, diet, sleeping more, sleeping less...
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Default May 20, 2019 at 09:42 PM
  #2
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Originally Posted by seesaw View Post
Hey PCers...

So I am having a horrible time and was hoping y'all could help me. I turn to y'all because my brain just isn't functioning, and neither is my body.

A little bit of history, part of my history of abuse includes being denied medical care for serious injuries/illnesses and being told I'm just "looking for attention."

Now, with chronic illnesses and conditions, I'm having a lot of trouble just dealing with some days being too unwell to do things, and explaining this to people or even just not judging myself for it.

Does anyone have any articles on a) dealing with fatigue from chronic conditions b) dealing with the side effects on not believing you're ill and even being trained not to believe you're ill? It's less about making others believe that I'm ill as actually feeling like I can say "I'm ill" and will be believed. That I'm not faking. That there actually is something wrong.

And of course, anyone who can commiserate or experiences this, feel free to chime in.

Thanks y'all.

Seesaw
I usually just call my doctor and ask them to mail me some of their information pamphlets, you know those little fliers they set around their waiting room and in their exam rooms for patients to read while waiting.

this way I dont have to do a bunch of guesswork or leg work. one phone call and with in a couple days the information that I need is delivered in my mail and its information that comes from places my treatment providers trust for factual information.

you can also use google to find official medical and mental sites like hospitals and doctors offices that usually have resources and site map pages.

Im assuming you are an adult now so no one can refuse you access to treatment providers any more except yourself. if you dont have a primary care doctor call your insurance. they will tell you who is listed on your insurance.

your mental health treatment provider can also help you get connected with the correct information directly related to your problems.
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Default May 20, 2019 at 10:43 PM
  #3
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Originally Posted by amandalouise View Post
I usually just call my doctor and ask them to mail me some of their information pamphlets, you know those little fliers they set around their waiting room and in their exam rooms for patients to read while waiting.

this way I dont have to do a bunch of guesswork or leg work. one phone call and with in a couple days the information that I need is delivered in my mail and its information that comes from places my treatment providers trust for factual information.

you can also use google to find official medical and mental sites like hospitals and doctors offices that usually have resources and site map pages.

Im assuming you are an adult now so no one can refuse you access to treatment providers any more except yourself. if you dont have a primary care doctor call your insurance. they will tell you who is listed on your insurance.

your mental health treatment provider can also help you get connected with the correct information directly related to your problems.
I appreciate your attempt to respond, but I think you've missed the point entirely. I don't need help finding a doctor.

Thank you.

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Primary Dx: C-PTSD and Severe Chronic Treatment Resistant Major Depressive Disorder
Secondary Dx: Generalized Anxiety Disorder with mild Agoraphobia.

Meds I've tried: Prozac, Zoloft, Celexa, Effexor, Remeron, Elavil, Wellbutrin, Risperidone, Abilify, Prazosin, Paxil, Trazadone, Tramadol, Topomax, Xanax, Propranolol, Valium, Visteril, Vraylar, Selinor, Clonopin, Ambien

Treatments I've done: CBT, DBT, Transcranial Magnetic Stimulation (TMS), Talk therapy, psychotherapy, exercise, diet, sleeping more, sleeping less...
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Default May 20, 2019 at 11:09 PM
  #4
I've REALLY limited the number of different foods i eat, and been more regular as to timing and quantity, and that seems to help my moods and overall sense of well-being. I also cut out dairy. Any deviations and i know im down for a nap with a queasy stomach.

But basically im a mess and in no position to advise others. But i can commiserate
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Default May 20, 2019 at 11:34 PM
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I've REALLY limited the number of different foods i eat, and been more regular as to timing and quantity, and that seems to help my moods and overall sense of well-being. I also cut out dairy. Any deviations and i know im down for a nap with a queasy stomach.

But basically im a mess and in no position to advise others. But i can commiserate
Thanks @unaluna. Yeah, my diet is really under control as is my sleep hygiene. I get regular physical activity (when I am not having days like this where I can barely stand).

The problem is more the second half of my question. In the aftermath of abuse where I was always told I was faking, it's hard for me, nearly impossible, for me to see a doctor, and when I do, I have flashbacks and panic attacks. I have a high level of medical mistrust. But also just extremely severe anxiety with going to see doctors (with good reason) and am barely able to advocate or communicate for myself when I do go. I was kind of hoping there were others who had experienced something similar who would comment.

I mean the first part was trying to ask people how they cope with the fatigue brought on by their illnesses, but I guess that didn't come across.

I don't know. I guess it's as hopeless as it feels.

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What if I fall? Oh, my dear, but what if you fly?

Primary Dx: C-PTSD and Severe Chronic Treatment Resistant Major Depressive Disorder
Secondary Dx: Generalized Anxiety Disorder with mild Agoraphobia.

Meds I've tried: Prozac, Zoloft, Celexa, Effexor, Remeron, Elavil, Wellbutrin, Risperidone, Abilify, Prazosin, Paxil, Trazadone, Tramadol, Topomax, Xanax, Propranolol, Valium, Visteril, Vraylar, Selinor, Clonopin, Ambien

Treatments I've done: CBT, DBT, Transcranial Magnetic Stimulation (TMS), Talk therapy, psychotherapy, exercise, diet, sleeping more, sleeping less...
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Default May 21, 2019 at 12:01 AM
  #6
I would think it would be easier to find a holistic practitioner in your new location?
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Default May 22, 2019 at 07:58 PM
  #7
Seesaw I grew up hiding any illnesses because it would piss my mother off and she would make me feel bad for annoying her and being a burden so I ignore my issues and just trod on with life until the pain is so bad I can no longer hide it.

As for chronic fatigue you can eliminate the usual suspects, diary, gluten, grains, sugar....try doing the Whole 30 diet for 30 days and see if that helps with anything.

Honestly I am not sure if there is any literature on you childhood experience. My T would say small doses of exposure therapy can help with that.

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Default May 22, 2019 at 08:56 PM
  #8
I just wanted to say I understand and can very much relate. As someone who deals with chronic illness and pain, multiple surgeries and a past similar to what MoxieDoxie described (where it was almost like I would get in trouble for not feeling well.) I am having a very rough time sorting out what is organic (physical cause), what is psychological. I have the tendency to totally dissociate from pain and deny that it is happening. And yet, at the same time this tremendous guilt and shame for still being a mess, or always seeming to be suffering with something. I also know that when I am very stressed, triggered and worried (but won't allow myself to express these things) it comes out in my body. Like my body is screaming for my attention. But my mind is telling me I don't matter or must be mistaken. It's a mess!

Pain is complex. Trusting doctors is complex. Trusting our own selves and bodies is complex. So while I can't point you to any specific articles or special tips on dealing with it...I just wanted you to know that it IS indeed a rough struggle and can zap our souls at times. Since I am currently under the care of many providers, I go into each appointment with a list of questions I want answered, and then take notes of things they tell me. This at least gives me a sense of agency over the very little that I can control at this time.

I try not to minimize whatever it is I am feeling. (My personality is such that I can be smiling and laughing and not clearly communicating how difficult things are. At the same time, I try to celebrate small victories and keep a sense of humor to help me cope.

Over time, I have finally been able to acquire a whole medical and psych team who I can be brutally honest with and we all have the common goal of doing whatever is possible to help me heal. But in complex cases, where one is dealing with past trauma, dissociation, any kind of mental illness struggle, it can be quite difficult to pin point what is what....as it is ALL connected. Body, mind, soul, spirit.

Become your own personal advocate. Practice asking questions during visits. Try finding things that help soothe or calm or energize you. And see if perhaps, perhaps....you might be able to invite a bit of self compassion. When the judgement monsters come in, let them, but then show them the door. I have gotten to a point where I can no longer wear my "everything's fine" masks. I practice just being as authentic as I can. If I feel like s**t, I let myself simply feel that way. If I feel decent, I try to celebrate the moment.

Keep sharing...you are not alone in this bee's nest of struggle.

FearLess47

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Default May 23, 2019 at 12:01 AM
  #9
@FearLess47 @MoxieDoxie

Thank you so much. I think you really "get" what it was I was trying to say. I'm struggling with very severe brain fog and confusion right now, so I'm afraid my posts are not as articulate or clear about what I'm asking as they may normally be.

It's not diet-related. I know that. Can't go into detail, but I've been up and down that road so I know that diet isn't the issue. Nor is exercise.

I managed to, despite the distress it caused and the total mental breakdown afterwards, to get some medical stuff scheduled today but it won't be for another couple of weeks. So I'm trying to do as Fearless suggested and I'm going through all my notes to write down the history of what I've been experiencing, what I think, and what I need help with.

Thanks so much everyone who replied.

Seesaw

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What if I fall? Oh, my dear, but what if you fly?

Primary Dx: C-PTSD and Severe Chronic Treatment Resistant Major Depressive Disorder
Secondary Dx: Generalized Anxiety Disorder with mild Agoraphobia.

Meds I've tried: Prozac, Zoloft, Celexa, Effexor, Remeron, Elavil, Wellbutrin, Risperidone, Abilify, Prazosin, Paxil, Trazadone, Tramadol, Topomax, Xanax, Propranolol, Valium, Visteril, Vraylar, Selinor, Clonopin, Ambien

Treatments I've done: CBT, DBT, Transcranial Magnetic Stimulation (TMS), Talk therapy, psychotherapy, exercise, diet, sleeping more, sleeping less...
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Default May 23, 2019 at 10:21 AM
  #10
Hi seesaw,
I was thinking about the seesaw smilie in your signature last night, and it made me laugh...because I found myself wondering "I wonder what tomorrow will be like?" Life feels like a seesaw at times!

YAY you for scheduling some medical stuff. When I see doctors nowadays, I often say "Bye, Hope I never see you again!" Because I am so sick of filling out new patient paperwork. I am so sick of telling the history and leaving some docs with false hope that they will help me, while others are left scratching their heads and passing me along to yet another specialist. I am so sick of peeing in cups, paying copays and sitting in tiny rooms waiting for someone to come in and help me, see me. So sick of trying to remember where I parked my car at the hospital or of hearing silly suggestions like "Have you tried vitamin B12, heating pads, yoga?" Yes, I am a yoga teacher!"

Anyway...keep at it. We must as human beings accept something that is difficult - sometimes doctors don't know the answers. That is why they call it a medical "practice." Our bodies are incredible. They are like emotional shock absorbers. They contain the imprint of our past. Bodies do weird things sometimes. It can be tempting to say, "Here, my arm hurts, fix this arm." But, we are not made up of pieces and parts...other than the ones created by scalpels and named in books. We are instead a complex, layered and fascinating network of connections and expression and mechanisms happening all day every day to keep us alive.

Recently an osteopathic MD walked into the little room I was sitting in. He was looking at my chart. He quietly lifted his head and took off his glasses and said, "Man, you've got a really messed up spine."

I laughed and cried at the same time. Somehow it was so good to hear the truth. And to know that he is just a human and doesn't own a magic wand...but that maybe I can have some help figuring out this mess.

Fight for you. And fight to also not beat yourself up for feeling like crappola.

FearLess47

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Default May 23, 2019 at 11:10 AM
  #11
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Originally Posted by FearLess47 View Post
Hi seesaw,
I was thinking about the seesaw smilie in your signature last night, and it made me laugh...because I found myself wondering "I wonder what tomorrow will be like?" Life feels like a seesaw at times!

YAY you for scheduling some medical stuff. When I see doctors nowadays, I often say "Bye, Hope I never see you again!" Because I am so sick of filling out new patient paperwork. I am so sick of telling the history and leaving some docs with false hope that they will help me, while others are left scratching their heads and passing me along to yet another specialist. I am so sick of peeing in cups, paying copays and sitting in tiny rooms waiting for someone to come in and help me, see me. So sick of trying to remember where I parked my car at the hospital or of hearing silly suggestions like "Have you tried vitamin B12, heating pads, yoga?" Yes, I am a yoga teacher!"

Anyway...keep at it. We must as human beings accept something that is difficult - sometimes doctors don't know the answers. That is why they call it a medical "practice." Our bodies are incredible. They are like emotional shock absorbers. They contain the imprint of our past. Bodies do weird things sometimes. It can be tempting to say, "Here, my arm hurts, fix this arm." But, we are not made up of pieces and parts...other than the ones created by scalpels and named in books. We are instead a complex, layered and fascinating network of connections and expression and mechanisms happening all day every day to keep us alive.

Recently an osteopathic MD walked into the little room I was sitting in. He was looking at my chart. He quietly lifted his head and took off his glasses and said, "Man, you've got a really messed up spine."

I laughed and cried at the same time. Somehow it was so good to hear the truth. And to know that he is just a human and doesn't own a magic wand...but that maybe I can have some help figuring out this mess.

Fight for you. And fight to also not beat yourself up for feeling like crappola.

FearLess47
Oh yes, I am quite tired of people asking me have I tried x,y or z treatment yet. Or some other random thing that they heard about. My housekeeper yesterday said I should do yoga. And I'm like, yeah, okay, thanks. Not like I haven't been doing yoga for years. They really often dont even have any clue of what having my conditions is like and why some suggestions are just so ridiculous. Sigh...it's well meant I know, but they just often don't understand severe chronic illness.

Yes, I also appreciate it when a doctor just admits that something is wrong but not like it's some user error. Half the time it feels like that irritating call to tech support when they asked you if you tries unplugging it and plugging it back in.

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Primary Dx: C-PTSD and Severe Chronic Treatment Resistant Major Depressive Disorder
Secondary Dx: Generalized Anxiety Disorder with mild Agoraphobia.

Meds I've tried: Prozac, Zoloft, Celexa, Effexor, Remeron, Elavil, Wellbutrin, Risperidone, Abilify, Prazosin, Paxil, Trazadone, Tramadol, Topomax, Xanax, Propranolol, Valium, Visteril, Vraylar, Selinor, Clonopin, Ambien

Treatments I've done: CBT, DBT, Transcranial Magnetic Stimulation (TMS), Talk therapy, psychotherapy, exercise, diet, sleeping more, sleeping less...
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Default May 23, 2019 at 11:16 AM
  #12
Something that came to mind that I experienced myself was having your horomones checked. I forget how old you are seesaw, but, often one can overlook that horomones can play a huge role in how we feel and function. That can be checked through a blood test too. Just a thought.
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Default May 23, 2019 at 11:39 AM
  #13
I like that metaphor of tech support....

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Default May 23, 2019 at 12:27 PM
  #14
Thanks, Open Eyes, I'll mention that to the doctor too. I doubt that it's hormones because I did have everything in that area checked out recently. But I'll mention it. I'm not really old enough to be having an menopausal symptoms. And early menopause doesn't really run in my family.

I'm actually going to go to Urgent Care, and I will probably strike out, just to see if I can get some support until I get into my new doctor.

Seesaw

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What if I fall? Oh, my dear, but what if you fly?

Primary Dx: C-PTSD and Severe Chronic Treatment Resistant Major Depressive Disorder
Secondary Dx: Generalized Anxiety Disorder with mild Agoraphobia.

Meds I've tried: Prozac, Zoloft, Celexa, Effexor, Remeron, Elavil, Wellbutrin, Risperidone, Abilify, Prazosin, Paxil, Trazadone, Tramadol, Topomax, Xanax, Propranolol, Valium, Visteril, Vraylar, Selinor, Clonopin, Ambien

Treatments I've done: CBT, DBT, Transcranial Magnetic Stimulation (TMS), Talk therapy, psychotherapy, exercise, diet, sleeping more, sleeping less...
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Default May 23, 2019 at 02:03 PM
  #15
I'm waiting in the lobby of an urgent care clinic right now. I've already been seen. They said they'd give me a small script and a referral for a few things. They said it was difficult to prescribe certain meds because I really need to see a specialist but they seemed to understand that I was dealing with this gap and not wanting to have to go through it all twice.

If they can get me into an appointment in the next couple of days I'll certainly go, but I just dont see it happening before 6/1 so why should I schedule something with someone out of network?

They want me to do full bloodwork and a head ct. They should just throw in the lobotomy and get it over with.

Lol.
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What if I fall? Oh, my dear, but what if you fly?

Primary Dx: C-PTSD and Severe Chronic Treatment Resistant Major Depressive Disorder
Secondary Dx: Generalized Anxiety Disorder with mild Agoraphobia.

Meds I've tried: Prozac, Zoloft, Celexa, Effexor, Remeron, Elavil, Wellbutrin, Risperidone, Abilify, Prazosin, Paxil, Trazadone, Tramadol, Topomax, Xanax, Propranolol, Valium, Visteril, Vraylar, Selinor, Clonopin, Ambien

Treatments I've done: CBT, DBT, Transcranial Magnetic Stimulation (TMS), Talk therapy, psychotherapy, exercise, diet, sleeping more, sleeping less...
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Default May 23, 2019 at 04:36 PM
  #16
Honestly, if you can get a ct scan and full bloodwork which can also check your horomone levels too, then try to get that all done so you can eliminate some things. If you have the blood work done, get a lyme disease check as you did and do a lot of walking out doors. A doctor I saw once tested me as she said a lot of people actually suffer from lyme disease not even realizing it or noticing a tick had been on them. I even had a friend that struggled for a few years, turned out to be lyme disease and she did not realize or see a tick on her, they can be very small and go unnoticed and often they come in from hitching a ride on our dogs too.
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Default May 23, 2019 at 04:41 PM
  #17
Have a look at these guidelines, I know they're British, but they might help you navigate CKS is only available in the UK | NICE
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Default May 23, 2019 at 05:38 PM
  #18
I can relate too. I have dreadful chronic fatigue. I can get out once a week and that is a struggle. I have to go to the doctor tomorrow because I need my meds refiled and I hate going to the doctor for a lot of the same reasons you listed.

My energy gets tiny bursts only when I do this: When I work through an emotional issue that bothers me and I get it out of my head, or at least reduced, I feel better. It doesn't last long, but it's there, I can feel it. So, that is what I focus on.

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Default May 24, 2019 at 12:12 AM
  #19
@Little Cat, I'm not sure what that link is supposed to send me to? But thank you for trying.

I went to Urgent Care today, and that was a bit frustrating, because I had to give the whole story to a doctor, and she didn't want to prescribe because she thought I should see a pdoc, and I said, yes, I agree, I'm just trying to get through to when I can get an appointment. Well, she gave me a script, not for the right dosage, instead of .5 mg she gave me .25, and only for 6 days. I don't know how long it will take me to get into see a pdoc in the new medical provider system I signed up for. I'm going to call tomorrow to see if I can get an appointment for next week just using my Medicare. If I can't, then I can't, and I will wait, but I'm going to at least try to see if I can see someone next week. I hate to see a pdoc that I will have to immediately change from to a new one, but I just have to do what I have to do right now in terms of at least getting some klonopin. As far as the other things, the urgent care doc said, as I knew she would, and as I agree, that I get full bloodwork and a head CT. (I wanted to joke she should just give me a lobotomy already.) But she didn't give me a referral for it. So I guess I'll just be waiting until after June 1.

I don't think they realize how waiting many weeks to get care causes so many problems. When you're so sick, it's not like it's just an inconvenience. Sigh...

__________________


What if I fall? Oh, my dear, but what if you fly?

Primary Dx: C-PTSD and Severe Chronic Treatment Resistant Major Depressive Disorder
Secondary Dx: Generalized Anxiety Disorder with mild Agoraphobia.

Meds I've tried: Prozac, Zoloft, Celexa, Effexor, Remeron, Elavil, Wellbutrin, Risperidone, Abilify, Prazosin, Paxil, Trazadone, Tramadol, Topomax, Xanax, Propranolol, Valium, Visteril, Vraylar, Selinor, Clonopin, Ambien

Treatments I've done: CBT, DBT, Transcranial Magnetic Stimulation (TMS), Talk therapy, psychotherapy, exercise, diet, sleeping more, sleeping less...
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