Struggling with chronic fatigue syndrome

[problemsinthemind]

I feel so isolated and so frustrated. There seems to be nothing that can help and I’m really struggling.

it’s been 2.5 years now and it’s getting worse not better. Has anyone recovered ? How long did it take? Is there anything you can recommend? The gp is no help at all , I’m fed up of feeling like this.

Me too.

Ive just started seeing a private OT who deals with the mind body connection.

Look at the Coffi stuff on YouTube. Your body basically gets stuck in hyper vigilance . It’s new neuropsychiatric information.

Dh read it in New Scientist and l didn’t want anything to do with it at first. But then l realised trying to pace was making me anxious and scared.

Anyway l’m one week in. I definitely feel better.

Thanks I’ll have a look . Today has just been the worst day so far I’ve tried so hard and it’s getting worse. I’ve struggled today to lift my phone or a small glass of water it’s like I have no energy at all now I don’t know how to keep functioning

You’re brain is trying to protect you and keep you safe.

It needs to relearn this.

Watch it in chunks.

Sorry you’ve had such a bad day 💐

I’ve had it for 8.5 years. I’m better than I was, but definitely not recovered.
You have to do lots of research for yourself I’m afraid, because you won’t get much help elsewhere I’m afraid.

25 years so far for me. No cure.

I’m so sorry. It’s just so awful. I just don’t know what to do it just gets worse I honestly worry at some point will I just fall unconscious one day it scares me , I can’t do even small normal things now

@problemsinthemind Have you had the rest of your health checked eg blood tests for iron, vit D, B12, diabetes etc? Are you eating a fairly balanced and varied diet? Is your weight in an okay range? Are you treating and managing any depression and anxiety with medication, psychologist/psychiatrist, support group, etc? Done a sleep study to check for sleep disorders? If you’ve got all of the basics like that covered then that’s good. My biggest reason for getting out of bed each day is my DD. That and if I want to watch tv I need to go out to the lounge room where the tv is.

Yes vitamin d and b12 are fine. Iron is fine but ferritin has always been a little low but that’s been an issue for longer than the chronic fatigue and I’m on iron medication. Thyroid is under active but well controlled. I have regular therapy for any emotional issues etc but I’m struggling with that due to the exhaustion even if I make it a phone call so I don’t have to travel because it drains me to even talk. I havent had any sleep investigations.

I was really unwell 2.5 years ago which I think was the trigger for this and I’m at the point I’m just feeling a decline almost daily now and I don’t know what to do

I have cfs. 5 years in.
I work full time, but can wfh a few days a week which has been addressed game changer.

At the start I could hardly sit up and I didn't leave the house for 2 years.

I use a smart watch to bio hack everything and there is now an app, I like its called something like liveable or viable or something?

I take d- ribose 3 times a day which is well used by the me/cfs community and gave me my first big change.

You need to learn to pace properly, many micro rests through the day to get out of the boom and bust.

To the naked eye im cured, but I hsve to look after myself. In asleep by 9pm every night. I can do a day of fun at the weekend so long as the next day is resting.

Its a slow crawl out with no quick fix but I promise things can get better.

I'm so sorry you're going through this. It is incredibly tough. My daughter developed this 4 years ago age 14.
We've tried anything & everything. In our case, NHS & private medicine were beyond useless.
My best recommendation is to go to Raelan Agle's page on youtube. She is a mine of information. She interviews hundreds of people who have recovered, & how they did it.
Many people used the mind/ body connection/ brain retraining/ calming the nervous system programmes to get better.
My daughter did the Lightning Process, & really it's been the only thing that has helped, although in retrospect there are more slow & gentle programmes that may be a little better. The LP was amazing though, & although not fully recovered, my daughter is way way better.
My daughter was extremely poorly, was bedbound & could barely speak. I truly sympathise with you as at least I could care for her & research a way out.
I wish you lots of luck. Many people have recovered & there is HOPE x

Sorry you’re feeling so crappy right now. I’ve had ME/CFS for 35 years, I’m not good at the moment but I’ve had times where I’ve been a lot better than I am now. It really does fluctuate so for me, when I’m feeling particularly shit I know that better days will come.

Don’t fight it. As scary as that is, the biggest turning point for me was accepting it.

Are you getting any treatment @Op?

I also recommend Raelan Agle's facebook group: ME/Cfs & Long Covid Recovery. It is a very supportive & positive group with lots of info & excellent advice. X

No my GP just told me to keep on top of all other medical conditions, try to eat healthily and get outside for sunlight at least once a day even if that’s just sitting in the garden. They said they’d refer for therapy but the wait was so long I had to go privately.

I don’t know where you are in the country, but there is an NHS CFS/ME/Long Covid clinic that takes referrals from all over. They run a treatment program that has excellent success rates. I’m on the waiting list at the moment, I’m not expecting any miracles after this long but I’m hoping for some improvement.

Try and get on a list for a clinic. The wait will be long and hopefully you’ll be recovered by the time you get to the top of the list. But if you’re not, it’s worth giving it a try.

Our local ME clinic is crap.

Where is this one?

Regarding nhs treatment program - what exactly are they providing and what are the outcomes for the clinic?

Dear OP
I’ve joined to reply to you
5 years for me, I’m at about 10% of my previous capacity. Full time work or even part time is out of the question.

What have you tried so far and what does a normal day look like for you?
What is the most you ever do in a whole day and what would be different for you the next day?

Whats the least you ever do in a normal day (excluding symptom flare day)?

Honestly I don’t believe regular therapy is the answer. I know for myself that there’s no medical appointment that would give me enough benefit to be worth the cost in symptom flare up.

But I can probably share some tips and ideas

I've always had horrible tiredness, period migraines, getting sick feeling working in an office on a computer, in buildings with not enough natural light

My blood tests always come normal so I just plough through the blizzard one day at a time, lots of coffee, yawning and spending time outside

I have chronic pain (10 years) rather than chronic fatigue and it has been very difficult.

Curable app helped me. It also focuses on the mind- body connection. They have a podcast with recovery stories that gave me hope when I was really in despair about ever getting better.

Some people have found it helpful for chronic fatigue too.

www.curablehealth.com/podcast/fiona-recovery-story-chronic-fatigue-syndrome

I think that everyone needs to find their own way in it- things that helped me have not helped others and vice versa.

I am doing a bit better now ( can work, albeit part time).

I know how difficult it is when something like this disrupts your life. But I wanted to say that things can get better.

I work a physical job. It's a life saver for me. Keeps me paid, focused, exercised and thriving

Sitting on a sofa is the worst draining thing

Some of us can’t leave the house though. Or even sit on a sofa.

I can’t do the first and have only recently managed the second.

May be I'm just physically tired all the time or sleepy

Broad Green, Liverpool. I can’t vouch for it yet, but 81% of patients report an improvement. I’m not sure how much they can teach me after 30 years that I’ve not already worked out for myself but I’m looking forward to the group sessions.

Hi OP diagnosed in 2013. Couldn't leave the sofa for a year. I'm now maximising my limited capacity. I had a traumatic incident, followed by a virus and boom.

Pacing is vital but it's very difficult to know when you're doing too much or too little in the early years. Because my bloods have consistently shown inflammation in the body ( I also have had chronic pain) I started with addressing that with supplements and vitamin d. I find heat exacerbates my symptoms so I don't sit in the sun unless it's the shade and with a breeze but the vit D did help. Along with magnesium and good strength fish oils. None of this cures me though, it just helps maintain the health I've rebuilt. I've started researching the vagus nerve reset and think there could be something powerful in that.

They actually do something to make you improve?

Ours just do pacing and mindful acceptance.

The very hallmark symptom of ME/CFS is post exertional malaise; if you can manage a physically demanding job without having to “sit on a sofa”, I’d question whether you actually have ME.

People with ME don’t choose to sit on the sofa, it can be physically impossible to do anything else. Lots of people are given this as a diagnosis without proper testing or investigations.