New to this have C-PTSD and Chronic Fatigue Syndrome

Delly75 · ‎29-04-2020

Hi.
i’m new to this. Just feeling very lonely and isolated. Woke up this morning crying and i’m feeling very lonely and isolated. I have complex PTSD from childhood sexual abuse, and also constant trauma throughout my life. I also have chronic fatigue syndrome with little to no family support and no friend group. I find it very difficult to get out of the house due to the fatigue and also the C-PTSD. I don’t trust anyone, due to the constant trauma throughout my life. I’ve tried counselling before with no benefit. No one understands chronic fatigue syndrome, and the effects it has on you. Anyone else out there with chronic fatigue syndrome or had anything to do with it.

Al_KB · ‎01-05-2020

Hi Delly! Me. I have CFS and it is the worst, isn't it? There ARE counsellors and docs out there who get it but they are not at all easy to find. I also wake up crying every morning, often after dreaming about something I've lost to CFS. I wonder if there is a CFS support section on this website? I'm also new here.

I have a couple of tips to leave on the table in case it helps.
1.check your local CFS organisation. ME/CFS is a better term to google. Emerge Australia may be able to put you onto a local group. They might have meetups (when this COVID thing is over). Anyway, learn about pacing if you haven't already.
2. If you do reconsider finding a counsellor, look at what they do in the way of therapy. Acceptance and commitment therapy (ACT) and interpersonal neurobiology (IPNB) have seemed helpful to me. CBT is generally not for the likes of us; it's so much like gaslighting it's super-triggering for me.

Aaronsis · ‎01-05-2020

Hello Al_KB

I am so very sorry that you are going through this and I have no idea how difficult it would be to manage CFS.

I just did a bit of a search on here and there are some threads that people have started, I will see if I can post them here, however you can put CFS in the search bar at the top of the online support section and they will appear.

https://www.beyondblue.org.au/get-support/online-forums/depression/any-fellow-cfs-(chronic-fatigue-s...

I hope that you can get some support through these threads and to see how others and managing through these times.

Hugs to you

Sarah

PugsLoveHugs · ‎01-05-2020

Hi,

I don’t have chronic fatigue but I have a friend who just got diagnosed with it last week. I actually came here for advice about that friend but I’m too scared to ask because I made my account name when I was a kid and she knows I have a pug so I’m scared I’ll accidentally run into her on this forum!

What is it like, if you wanted to share? My friend who has it talked about not being able to even stand up in the shower (and I’ve seen a few docos where people go from being super active to bed ridden) but then she also sends snaps of her volunteer dog walking and fully intends to compete in high intensity sport with us, which could impact her teammates safety, but she doesn’t care (that’s part of the advice I am looking for but it’s too much to get into really).

From that I assume there are good and bad days maybe? I’m not too sure I really am pretty ignorant to the whole thing. I know there’s a lot of stigma because as soon as people hear the word fatigue they go “oh they’re just really tired well me too!” which would make me pretty angry having to constantly explain to people that it’s not the same thing.

I’d also love to hear if you find any good groups to talk to because my friend could definitely use something like that.

I hope I don’t sound like I’m treating you like a medical textbook, my brains pretty shut down at the moment (it’s kinda the only time I find myself on these forums) and I hate saying stuff like “hope you feel better” because I just ignore that when people say it to me, almost like “yeah any good person would hope that you don’t need to say it?”You don’t have to reply to this either if you don’t want I haven’t really responded very well. I do hope you find people who understand better than me though!
Take care

Al_KB · ‎02-05-2020

Definitely we have good and bad days, and different levels. I've been ill since 2011 and for a while I could work a 20 hour week. Now I'm almost housebound. Can maybe go out twice a week, like to a doc one day and a lunch one other day - or I could when the cafes were open.

What is is like? Awful. People have compared it to operating on 10% battery level. Or feeling like you've just run a marathon with also the flu and a serious hangover. It's the aerobic energy system that's broken for us; I can do some weights and yoga and slow walking as long as I don't do hard and get out of breath.

I could write essays on this, and go on forever.

Also go to https://www.emerge.org.au/ for a really good start. There is an enormous amount of online support and groups (I'm in a couple of facebook ones.)

One thing that really worries me about your friend is the idea of high intensity sport. If they really have ME/CFS, then this could make them worse.
I tried going to the gym to "recondition" based on some terrible medical advice. And then later a cardiologist sent me to a cardiac rehab class in which 70-90 year olds who had just had heart surgery were way outdoing 50 year old me with a perfect heart. They got better. I got worse.

I say "If they really have ME/CFS" not to doubt them, but to note that diagnosis takes ages because it's all about excluding other causes of the chronic fatigue. Post viral fatigue is a thing that can resolve with months of rest. Anemia, thyroid conditions, other autoimmune diseases, cancer etc have treatments. Also depression, ugh.

therising · ‎03-05-2020

Hi Delly75

I really feel for you so much regarding the trauma you've suffered, the challenges you've faced over the years and, now, CFS.

My friend's in the process of elimination and waiting phase of being diagnosed with CFS. She's now struggling with depression on top of it. As I mentioned to her 'It's important you say 'My body and mind have been chronically exhausted over the years and now I'm feeling it', instead of I'm hopeless and can't do anything'. She puts her symptoms down to the crazy hours she worked in a job she just resigned from but I beg to differ. For the past 5 or so years, since she split from her husband (who was an emotionally abusive and exhausting guy), she's faced the recurring stress of 'Where will I get the extra money from to pay the bills ? How do I deal with an ex who doesn't seem to give a damn about the kids? I feel like I'm doing a lot of this alone!'. The list goes on. With each state of hyperactivity, the vascular system, the endocrine system, the nervous system and all the other systems go through, they're put under pressure and can be exhausted, depending on the severity and duration of the stressors. Do this again and again and again over years and the systems are chronically fatigued through reoccurring states of hyperactivity. Eventually, the body says 'Enough is enough!'

The next stage involves restoration. Kinda like saying to the body 'Okay, I'm going to be really nice to you now as you recover'. My friend is going through this stage and it's definitely a multi-faceted stage. Not only does it involve gentle kindness to her body through a change of diet, some gentle relaxation , very low level exercise (that may only last a few minutes at a time), music therapy, aromatherapy, bath time therapy etc, this has proven to be a time which has involved a lot of letting go. She's held onto a lot of resentment, anger, disappointment, fear and fluctuating self-esteem over the years and these factors have also exhausted her.

When dis-ease becomes so great that it leads to disease, it's at this stage that we're feeling the dis-ease. It can become physically debilitating.

By the way, after some months of kindness to herself, my friend is now looking to go back into the workforce. My advice 'You're body may still be in recovery mode, so don't be too quick to begin exhausting it again'. She has support in the meantime.

Delly, this is a time of kindness, to yourself. You deserve it. You've been through so much.

Take care

Dimi_J · ‎05-05-2020

HI

I know how you feel. I was diagnosed with cPTSD 2 years ago and have been through so much and working so hard to get through the last 2 hellish years- and now this. I’m really struggling right now too. I’m glad you posted. Just joined the forum right now as I’m in tears. It’s so hard to know where to begin...

PugsLoveHugs · ‎08-05-2020

Thanks for sharing and helping me to understand better! I learnt a lot. I really hope scientists get to understand chronic fatigue better and come up with a treatment. There is some hope at least, my mum has MS and we thought she’d have to have injections every 3 days for the rest of her life and all other treatments seemed out of reach but over the last ~15 years since she’s been diagnosed they’ve developed tablets for it which is a win! I really hope people start to work towards something for chronic fatigue because it just sounds awful to live with let alone the added stigma of having an “invisible disease”. Thanks for your help!

maddwadd27 · ‎15-05-2020

I have had CFS since August 2006 I was in my mid teens at the time and felt it really hard to deal with, especially when all my friends were going out to parties and I could barely get out of bed. CFS has definitely come along way since 2006 , there is a lot more understanding and good to not be told its all in your head like the old days.

Tolbex · ‎06-11-2021

I think you just haven't found the right specialist to speak with. I think that firstly you should understand what are the signs of PTSD and how this affects your body and emotions.