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Old 10-02-2019, 01:08 AM   #1
lillib
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Default Chronic Fatigue Syndrome

I've been diagnosed with chronic fatigue syndrome. (I also have PTSD, IBS, sleep apnea, obesity, some female reproductive disorder - apart from past endometriosis, and a nodule on my left thyroid but no detectable thyroid disorder to account for the fatigue and other symptoms.)

I want to lose weight, but I don't have the energy to exercise.

I'm a veteran, so I feel really ashamed to be this out of shape with all limbs intact.

I've heard controversial stuff about chronic fatigue disorder, and the treatments for them are equally as controversial. Nevertheless, I'm willing to try anything. Doing dishes tires me. Taking a shower tires me. Going on an interview (which I have tomorrow for grad school) tires me. I'm not sleep tired, but just fatigued to the point where I have to sit down or lay down. I get headaches, and once in a while body aches and joint pain. But if I sit for too long, my lower limb or limbs swell.

I also have heart palpitations (not panic-related, though I do seldom get panic attacks from the PTSD).

I also have some sort of tinnitus, where I hear my heartbeat in my ears, and once in a while they ring.

I miss having energy to do just basic living stuff. I tried to volunteer doing research assistant work, but I'm limited to 5 hours a week, or about an hour a day. Sometimes I can last a bit longer, but then I'm out for two days resting to make up for post-exertional malaise (PEM).

I do not know how I got this.

If anyone has this condition, I mean, not just tiredness from a different disorder, but a diagnosed CFS/ME, please let me know what tips you have to offer.

It's getting hard, and even weekly therapy exacerbates my condition to the point that I have to have an appointment that is in the afternoon so I can spend a day and a half recuperating from mental and emotional stress that goes along with PTSD healing.

I know this is NOT just somatic. It's real, and it requires some lifestyle change, maybe pacing, but I don't know how yet.
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Old 10-05-2019, 07:38 PM   #2
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Smile Re: Chronic Fatigue Syndrome

I don't know anything about this. But I noticed you had yet to receive replies to this post. So I thought I would write one. The heartbeat in the ears & ringing made me think about blood pressure. But I presume you're probably on top of that one, so to speak.

The main thing I thought I would mention (just in case you're not already familiar with it) is that Psych Central has a sister website... NeuroTalk. There are a lot of members there who are knowledgeable regarding a wide variety of physiological conditions. So if you're not already familiar with NT, you might take a look at the forums there & see if you think NT might have something to offer. Here's a link:

NeuroTalk Support Groups

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Old 10-06-2019, 12:11 AM   #3
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Default Re: Chronic Fatigue Syndrome

@Skeezyks thank you so much for replying and suggesting the Neuro group. I will check that out. Maybe it will help. I am constantly resting throughout the day. I am not sleepy, but I am tired. It has been like this for the past 5 years, though ever since I was discharged from the military, I had bouts of this, though it worsened in the last 5 years due to stress and retraumatization. I am okay though; I am not depressed per se.
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Old 10-06-2019, 12:19 AM   #4
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Default Re: Chronic Fatigue Syndrome

I have it and it sucks. Iím sorry you have it, too. Adderall helps me a little bit but has some side effects. I also have POTS, which often comes with CFS. It helps that I have a job that I can do half at the office from midday til evening and half at home lying down via computer at whatever time I want/am able to.
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Old 10-07-2019, 10:20 PM   #5
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Default Re: Chronic Fatigue Syndrome

Quote:
Originally Posted by HowDoYouFeelMeow? View Post
I have it and it sucks. Iím sorry you have it, too. Adderall helps me a little bit but has some side effects. I also have POTS, which often comes with CFS. It helps that I have a job that I can do half at the office from midday til evening and half at home lying down via computer at whatever time I want/am able to.
What is POTS?

I am sorry you struggle with CFS. I have PEM really bad. I cannot take any psychotropic meds. I have had really bad reactions to them, and they never helped. I want to heal naturally if possible. I am fully disabled. I want to go to grad school and eventually work as a researcher part-time, but I do not even know yet if I can handle grad school. My CFS worsened after being retraumatized.
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Old 10-09-2019, 07:59 PM   #6
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Default Re: Chronic Fatigue Syndrome

Oh hon, I'm sorry you have CFS. I was diagnosed with it about 1t years ago. I would not wish this on anyone.

Not sure I'm going to be helpful with tips, but here goes....

I try not to judge what I can do one day by what I can do on another.
I try to give myself "permission" to have days where it's all I can do to drag my butt from the bed to the sofa.
If I know there's something I have to do that's going to knock me off my feet I give myself time off afterward to recoup.
This going to sound odd, but I give myself permissoon to climb on the pity pot once in awhile. There are days I'm just overwhelmed by the unfairness of it (I know life ain't fair). So I give myself a certain amount of time to be pissed, hurt, down, whatever about it. Then I make myself climb down off the pot.
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Old 10-09-2019, 08:50 PM   #7
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Default Re: Chronic Fatigue Syndrome

Quote:
Originally Posted by lizardlady View Post
Oh hon, I'm sorry you have CFS. I was diagnosed with it about 1t years ago. I would not wish this on anyone.

Not sure I'm going to be helpful with tips, but here goes....

I try not to judge what I can do one day by what I can do on another.
I try to give myself "permission" to have days where it's all I can do to drag my butt from the bed to the sofa.
If I know there's something I have to do that's going to knock me off my feet I give myself time off afterward to recoup.
This going to sound odd, but I give myself permissoon to climb on the pity pot once in awhile. There are days I'm just overwhelmed by the unfairness of it (I know life ain't fair). So I give myself a certain amount of time to be pissed, hurt, down, whatever about it. Then I make myself climb down off the pot.
@lizardlady

Thank you! You described some of the worst days I have, where I really cannot get up except to use the restroom. It's not that I'm sleepy; it is that I'm fatigued and exhausted. I do take periodic naps on those days, but for the life of me, I cannot figure out what happened to me. Thanks for this!
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Old 10-09-2019, 09:08 PM   #8
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Default Re: Chronic Fatigue Syndrome

@lizardlady

Oh, and I'm sorry you go through that, too. If there were a pill to make it all go away, I'd take it. I hope they find a cure or whatever the source is. I've heard it all, from something to do with some virus or another, to having a lack of blood or something, to it being psychosomatic, to it being a personality disorder, to it being from a form of herpes, to it being some effect from some kissing disease, and the list goes on.

I've tried the exercise thing with a personal trainer whom I paid lots of money. I got worse - I mean way worse after that. I should have never tried that exercise treatment. It was supposed to be twice a week, and I canceled the second day, sometimes an entire week, because I was ill the very next day after exercise. I tried so hard. And I used to be an exerciser. I don't understand.

I tried to see if it was my hormones, some strange form of depression without me actually feeling depressed - like a dissociative depression, or maybe I got bit by a tick since one of my classmates got Lyme disease after going out to the same campus-based fields that they hold events at every summer, and they warn us about ticks. But no detected Lyme disease, no depression (believe it or not), and no hormonal issues. Not even the nodule on my thyroid can explain this, the doctors said.

I'm not afraid of exercise, so it's not a phobia. I'm not clinically depressed, because I want to do things but just cannot. I am depressed about some issues in my life, but I'm not that depressed. I want to live, and this is not living to me, I told them.

I do have a vitamin D deficiency, so maybe that's part of the issue. I keep forgetting to take my vitamins. But, I moved out of the cold state where I was and into a sunnier state, which I hope will help me. I moved recently, so it will take a while for me build vitamin D again.

I feel like someone drugged me, which is a trigger. I am more jumpy than ever since my condition worsened, but I've always had some level of fatigue or post-exertion malaise since the military, so maybe it just took a toll as years passed by. Who knows.

I was once majorly depressed, but I've been relatively depression-free for the past 5 years. I only have the PTSD really bad these days, and the CFS. I am depressed, however, on the days that I cannot do anything. I'm not tired because I'm depressed, but I'm depressed because I'm tired. I'm not sleepy; it's as if my headaches coupled with my body feeling heavy coupled with my feeling really fatigued and weighed down are invisible ropes tying me down and making it impossible for me to break free. This is so triggering, but I work through it or try to shut it out with sleep or just darkness, because the lights on those days give me migraines at times. I'm sensitive to heat, cold, light, even though I still cannot sleep in the dark. So some dim light is always on.

I try to stay positive, but yes, I have the pity party - alone most times. I knew after a while that it subsides in a day or two - or four if I had a very exhausting week.

This progressively got worse, so it wasn't like a symptom out of the blue. I always thought that I was getting old or maybe that I was temporarily sick. It never went away.

I hope they do more research.

If this is all in my head, I'll do CBT again or anything. I'll think better or more clearly, or desensitize through fears - whatever it takes. I don't want to feel this fatigue, this trapped feeling that my body is holding me hostage.

And the triggers that my body is bringing up about the past abuses.

They think it is the PTSD that is causing my chronic fatigue syndrome. If that's true, then I want my PTSD to go away. I want all my hypervigilence and intrusive memories to go away. I want it all to go away. I'll take a pill, anything, to feel better again. I remember begging, pleading, and praying for someone to cure me. I don't want to die like this, and I don't want to get worse, and I don't want to keep going through this.

Then four years pass and I'm used to pacing and living this life while trying to do whatever to not cause this CFS to get worse. I don't know what to do, and neither do any of my doctors (yet). I have to see new doctors soon, so maybe they can help.
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Old 10-09-2019, 09:14 PM   #9
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Default Re: Chronic Fatigue Syndrome

POTS stands for postural orthostatic tachycardia syndrome. Itís a type of dysautonomia, which basically means dysfunction of your autonomic nervous system (ANS). Your ANS controls things like heart rate, blood pressure, digestion, fight/flight/freeze response, etc. When I stand up, my heart rate and diastolic BP go super high. Then they crash and I pass out due to lack of blood/oxygen in my brain. If Iím standing, I have to be moving or I get sick and pass out. Iím always pacing and wiggling. Or sitting or laying down. I can only sit for about an hour. There are two types of POTS. I have the hyperadrenergic kind. When I stand up, my norepinephrine/noradrenaline blood levels go really high. My body is in a constant physiological state of fight or flight. It makes me shaky and extra jumpy. It looks like anxiety to an observer, but itís not anxiety at all. Itís dysautonomia. On average it takes 7 years to get a diagnosis, usually because doctors are close-minded and say itís all in your head. But itís not. Itís in your autonomic nervous system. It took me 13 years to get a diagnosis.
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Old 10-09-2019, 09:27 PM   #10
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Default Re: Chronic Fatigue Syndrome

Quote:
Originally Posted by HowDoYouFeelMeow? View Post
POTS stands for postural orthostatic tachycardia syndrome. Itís a type of dysautonomia, which basically means dysfunction of your autonomic nervous system (ANS). Your ANS controls things like heart rate, blood pressure, digestion, fight/flight/freeze response, etc. When I stand up, my heart rate and diastolic BP go super high. Then they crash and I pass out due to lack of blood/oxygen in my brain. If Iím standing, I have to be moving or I get sick and pass out. Iím always pacing and wiggling. Or sitting or laying down. I can only sit for about an hour. There are two types of POTS. I have the hyperadrenergic kind. When I stand up, my norepinephrine/noradrenaline blood levels go really high. My body is in a constant physiological state of fight or flight. It makes me shaky and extra jumpy. It looks like anxiety to an observer, but itís not anxiety at all. Itís dysautonomia. On average it takes 7 years to get a diagnosis, usually because doctors are close-minded and say itís all in your head. But itís not. Itís in your autonomic nervous system. It took me 13 years to get a diagnosis.
The VA diagnosed me with CFS. I haven't had a dx of POTS yet. I tried the graded exercise thing, and it nearly crippled me. It made my condition worse.

I don't know if I have POTS. All I know is that I cannot stand for too long, that if I even do dishes I am exhausted. There are some days where I have energy to shower, go out, run an errand, or attend a meeting (like tomorrow), but then I'm out for the next two days. I try to only schedule two to three outings a week, and never back-to-back, because I need the break in between to rest.

I have heart palpitations at night when I try to lay down, but it's not from anxiety. It's every night nearly. I also hear my heartbeat in my ear. Sometimes I have to sit up and move around a little until I am sleepy enough to sleep. Sometimes I have heart palpitations in the day, or whenever I am about to go to sleep. One time I had to be rushed to the ER in an ambulance, and they gave me nitroglycerine, but it was just some strange heart palpitation, and the doctors there didn't believe me at the civilian ER when I said that I was diagnosed with CFS. They believed my PTSD though, but they suggested I see a cardiologist who can give me a stress test. This was just a few months ago, so I have yet to find the energy after the big move out of state to see a cardio. I will meet with my new primary care next week at the VA, since I barely had my papers transferred. I'm hoping they will see all the notes, but I'll hand them the copies I got from the ER.

Who knows what I have. I just don't want to die. I don't want to have a heart attack. I need to quit smoking, so that is first on my list when I get to meet my doctor and hopefully ask if they can prescribe the patches to me again. That would be a start. And maybe groups for smoking cessation, to help me stay motivated to quit.

But the heart palpitations thing I've had since my mid-20s, after I was discharged from the military. I always thought of them as panic attacks, but the VA stated that no, those aren't panic attacks, even though I do have PTSD. Okay, welp, then I will have to just deal with them every day, and I do. I calmly listen as the heart palpitations beat erratically. I calmly hope and pray that I'm okay every day. I do what I can every day to get through. Some days are better than others. My moods don't change much, but I'm not depressed; I try to stay occupied and really try to make a concerted effort to stay positive.

I'm doing all that I can.

If this is a neurological thing, they have yet to do a brain scan.
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