Chronic Fatigue/dysfunction

[Finding Maeve]

I have done a lot of research and been in PTSD inpatient and outpatient programs, but I haven't met someone with my same symptoms. Even though I was granted SSDI (first application, no attorney) based on PTSD, sometimes I feel like a fraud. I can't explain to people what's wrong with me because they judge me (You get paid to sleep??) I sleep so much, I just don't function. I can't get out of bed and work normally. People say to me: "Put you alarm clock across the room" or "If you really wanted to go somewhere, you'd make it happen." I miss doctor and therapy appointments. I usually do not sleep at night, but even when I get several hours, I can't function the next day. It's gotten worse and worse. I missed my appointment with a new psychiatrist, even though I am desperate to get help. Does anyone have the same problem?

 

[Storm-ridden]

Hi!
First off, welcome to the forum! Its a pretty good place here.

I personally don't have chronic fatigue syndrome, but my mom developed it awhile back, so I've seen what it can do. I wonder if you could get a late appointment with your new psychiatrist? Like his last one of the day? Perhaps that'll give you a better chance of being upright at the correct time and able to get there. Does your new psych know about the chronic fatigue syndrome? Just so that way he knows you're not doing this on purpose, you're just stuck in a nasty catch-22 of needing help, but your disorder isn't giving you a real opportunity to -get- that help.

Just my 2 cents on the matter. I hope you're able to make it there! ((((Chronic Sleeper))))

 

[Echo]

Hi @Chronic Sleeper - I have CPTSD now (late onset - the symptoms hit me hard just over a year ago). About ten years ago I got CFS though and was really ill with it for 3 years and then gradually those symptoms lessened, though I don't think I've ever gained full health. Although it feels different now - I don't get that horrible internal 'falling' sensation and urge to collapse or the need for immediate sleep or I'll die feeling. I do though need a lot of sleep and have to sleep long into the morning on most days. I just accept that it is my body's way of processing so much of the trauma.

When I had CFS the mornings were always worse for me. I would get up for breakfast and that would exhaust me so much, I would have to go straight back to bed for several hours. If I went for a painstakingly slow 10 minute walk, I'd have to have 3 hours sleep. I found it hard to drive any distance and since I lived in a rural area, there were no buses, so everything was a huge struggle with no help from anywhere. I had to make any appointments, and there were very few, because I got no medical support, in the afternoon, and I often had to postpone.

What I think made a huge difference for me (and it is the approach I'm trying to take again now) is to get as much information about what is going on inside my body bio-chemically. It is all about the cortisol response after years of high anxiety due to trauma. I learnt that this is associated with our blood sugar levels. I won't go into all the details here (partly because I'm not qualified enough to do so, and partly because we are all different), but approaching things nutritionally made a massive difference. I don't have diabetes, but I found that if I got my blood sugar under control via GI (glycaemic index) diets (doesn't have to be weight loss), then I felt so much better. I made sure I had all the correct vitamins and minerals, ate organically as much as possible, and supplemented in those areas where high stress means you don't get the benefit from your diet. I also saw a kinesiologist (a very good one) who helped me a lot with my thought processes (she was trained in NLP amongst other things like Brain Gym). And I asked myself every day why I was like this. I had realised that the CFS came about as a result of high anxiety and that took me back to my relationship with my mother and the partner who had just left me. I think I made huge strides with it all and I got to the point where I could work through the night with no problem (not clever, but it did tell me that my sleep issues were gone).

With the PTSD now, I realise how related the two conditions are. I am again trying to go back to those healthy ways of dealing with it because it does make me feel better than clogging up my system by eating badly. I feel that if I hadn't already had that period of time healing from CFS, that I would be in a far worse state than I am now. I am not sure I would have made it actually. It is just too much. Having those hard-won resources really gives me a kind of strength.

So I empathise hugely with where you are at. I was never offered drugs for the CFS and haven't been for PTSD, and I am really glad. I was prescribed them (Librium) after being raped when I was twenty, even though the diagnosis was IBS at the time (stupid doctor) and I did really badly on them, and I did really badly when they were ripped away from me and I had no support to come off them. I would far rather give my body support in other ways.

I'm just reading Belleruth Naparstek's book, 'Invisible Heroes. Survivors of trauma and how they heal'. There is some really good information in there about the bio-chemical disturbances that happen in the body as a result of trauma, and a great section on the links between CFS and PTSD, as well as other conditions, such as fibromyalgia, IBS and other auto-immune diseases. I think doing things to repair or rebalance our internal biochemistry has to be part of a successful plan for healing, but it is not one that most medical professionals have thought much about or would know how to advise you on.

Anyway, I do understand. I had no financial support when I was ill and it left me in debt, so if you are "getting paid for sleeping" (what rubbish), then trying some of these options may make you feel so much better in yourself. I wish you well whatever path you take towards healing.

 

[Springer80]

Good morning (just) from the uk. Im in bed and I got in 15.5 hours ago. I rest to rest my body and then Im swallowed by the need of my brain to repair itself. Its literally like a foreman i my brain puts up a construction sign and orders the rest of me to stop. Im learning to respect and give in to it.

The emotional part of this is curious. The attachment feelings I have seem satiated after a sleep. I feel comforted.

I know its a.mix of exhaustion, repair, and removing dissociation I just couldnt really explain the mechanics.

I do work but I have a boss that lets me arrive when I can and pays me for the hours I can manage but I know a tide is turning and the feelings that force me to sleep will have to have more attention if I am to overcome the paradox.

It still hurts though because Im tired of feeling scrutinised or being judged as someone who thinks the rules dont apply to them.

 

[Springer80]

By the way thanks for posting this, I often dont feel alone when Im sleeping and when I wake I feel able to look after the distress I feel inside. But as that wears off and the day/evening comes on I feel on my own with it, without outside understanding. Frustrastingly the need for that is what makes me tired!? I live on my own and I dont have a partner so it can be tough.

Glad your here :)

 

[Pencil]

I know nothing about CFS, but I do know never to listen to or pay attention to people who don't have PTSD have to say about symptoms or the disorder. What they have to say is usually 'rubbish' - as @Echo so eloquently pointed out. While you're being paid to sleep, go for it and thank your lucky stars that you are not facing destitution or some other bad consequences, and send the comments to hell.

I feel on my own with it, without outside understanding. Frustrastingly the need for that is what makes me ....

@Springer80: As I said I don't have CFS, but I totally relate to the feelings.

 

[Hashi]

For long periods when things have been very bad, I have not slept at night and then have slept for 12 or 14 hours during the day.

I'm not sure if this is similar, because I'm not clear exactly what's happening for you. I wonder, if you'd be willing to say a little more:

Could you say what happens over a typical 24 hours?
What happens when you try to attend a daytime appointment?
You mention not usually sleeping at night - are you wide awake, doing things? In bed and groggy?

 

[intothelight]

Hi Chronic Sleeper,

Welcome to the forum!

I hope you find the information and support here helpful. As you read you will find there are many members who suffer from a variety of auto-immune disorders. Stress has an extremely negative impact on the body and don't stress yourself more by feeling guilty over something you can't control, but focus on getting better and making your life the best it can be.

Debbie

 

[Finding Maeve]

Thanks for all your comments and help. It certainly makes me feel not as alone.Argh. Another night and it's already 1 am. Tomorrow, I go back to afternoon babysitting and have therapy scheduled for noon.

My first appt with a new psych today was awful. After asking none of the right questions, and me trying to offer info to fill in the gaps, he wanted to prescribe me something to "calm" me down, a mood stabilizer that would put me on the low side. I couldn't believe it after telling him I was depressed and sleeping all the time. I don't remember the name of the med probably because I was so disappointed and pissed off. Not sure if I should pick it up tomorrow because as soon as I got home, I started calling other doctors on my plan.

To answer your questions, Hashi, I usually pick up two elementary school girls 4 times a week at 3 pm and look after them until 6 (although I've had the last two weeks off.) I am usually rushing to get there at the last minute and pushing through. I'm pretty good at faking being normal around them. I've also been in substance abuse recovery for over two and a half years and am supposed to be going to meetings, but all I want to do is get home and get into bed to watch mindless tv, which distracts me from reality.

When I was in an outpatient PTSD program and forced to sit for hours at a time, I'd fall fast asleep. It happened once in therapy, too. I had a babysitting job that started early in the mornings for a few weeks and I struggled to stay awake. But I don't think I could do that now that my symptoms have gotten so much worse.

At night, like now, I lie in bed with my eyes closed, tired but not sleepy with short, racing thoughts of bad memories. I try and focus on only my breaths, like meditating, but I can only do that for so long until I give up and get on the computer or something. During a typical recent night, I'll get in bed at 10:30/11, stay awake until 6 am then fall into a deep sleep for the rest of the day. But like I said, I've had a couple of weeks off and am nervous about tomorrow

I have had bursts of productive creativity and recently finished a novel that a literary agency asked me to finish years ago. I got it onto his desk Feb 24th and am waiting to hear back. It's like when I'm at rock bottom, I have to claw my way into something hopeful, and I feel like writing is my only hope for positive change in my life. I am 41, divorced, no children, living in a rented room with a successful journalism career long behind me. My first thought in the morning and last at night are the same: God, I'm miserable.