AIBU to ask if CBT is a waste of time for Fibro/ CFS/ anxiety?

[ShmooBooMoo]

Posting for traffic ...

Can anyone, speaking from experience, say whether they have found CBT helpful for Fibro, CFS and anxiety mostly around the conditions?

Info on sites states that every CBT session must be attended and 48 hours' notice given if attendance is impossible. Obviously, as Fibro / CFS can make it difficult to commit to attend every session and 48 hours' notice would not always be possible, would it be worth pursuing?

Also, what happens if a person has a lot of anxiety around unfamiliar places for various reasons, meeting new people and knows they would not feel able to share particular aspects of what makes them anxious? Is CBT right for a person for whom speaking about their situation makes anxiety so much worse?
Plus, there are stories that for many CBT can increase anxiety initially... Does anyone find even the prospect of CBT increases anxiety for them?

I know doctors seem to think CBT is helpful but is it really....? Looking at reviews it doesn't seem to be as helpful as some GPs seem to think it is? It doesn't change the reality of a person's life if they are sick... There are such mixed reviews of CBT and, taking into account the physical/ emotional effort involved in attending when ill, is it worth it?
What are the alternatives?
If you've not felt it was right for you, how did you get your GP to stop suggesting it without sounding like you don't want help?
Any views/ advice/ thoughts...especially if speaking from personal experience are really appreciated!
Thank you.

I wonder whether a “cbt for dummies” book might suit you better? I’ve found it just as effective as the sessions with a therapist, and obv means you don’t have to worry about getting there etc.

Do you not have a CFS clinic in your area? CBT isn't the best sort of therapy for CFS, but it depends on what you want to eliminate.

I have fibro and severe anxiety as well as health related PTSD.

CBT was laughable for me. Didn't do a thing at all.

I only ask because my therapist that I saw for CFS did give me relaxation and distraction methods, but didn't feel that CBT was worthwhile.

PalePinkSwan Would you recommend a particular book? Ideally one that can be dipped into (rather than long chapters) due to limited concentration? Thanks.

Birdsgottafly
I don't believe so... Doc said can self-refer (new doc after old doc left recently, seems nice but perhaps not as knowledgeable about CFS/ Fibro as previous one). Suggested CBT for severe anxiety (related in the most part to CFS/ Fibro difficulties and worries re the future) but didn't say anything about a CFS clinic. Do they do CBT at CFS clinics or are you suggesting CFS clinic as an alternative? If so, could you please tell me what they do there...and, if you know, how helpful it is?

GP is pushing the CBT option but between limitations and how much worse talking through problems makes anxiety, it doesn't feel like the most appropriate thing. Changing your thinking doesn't change the reality of living with life-limiting conditions, does it?

Thank you both.

I had very severe social anxiety and didn’t leave the house alone for the best part of a decade.

Over the course of a few months I had CBT and went from being basically housebound to holding down a full time job, which I never would have even imagined before.

I’m now a fully functioning adult and have recovered from my severe social anxiety, all thanks to CBT. I couldn’t recommend it enough.

The thing with CBT is that it only works if you put yourself out there and push yourself. If you don’t do the work and follow their advice, you won’t get better.

I do CBT for fybro/CFS and used to work in a pain management clinic. Our service were very sympathetic to our patients and understood that some days it just wouldn't happen, and that's fine. I would always just rebook you until you'd had your allocated number of sessions.

If attending sessions in person is difficult, you could look at CBT via Skype or using an online therapy platform. Lots of therapists do this now and it makes it so much easier to access therapy if you're living with a chronic condition.

There's really good evidence that CBT is useful for people with fybro/CFS. Sometimes it can help minimise symptoms because it helps you to get moving more (or less if you're overdoing it) and generally help you to 'pace' yourself so you're not constantly in a 'boom and bust' cycle energy-wise. It can also help with working through the complicated emotions attached to being ill without having to talk to family or friends about it, which can be hard.

A really good alternative (or to compliment CBT) is mindfulness for health/pain. There are courses on this or books like this one: Mindfulness for Health
If reading is too draining, it's available as an audio book and I know several people who've found this to be a turning point for them.

for you OP, living with this is bloody hard. Feel free to DM me or ask questions here if you want.

Good luck

We had a local CFS clinic which I was referred to because of anxiety about the future and how I would manage. I had been turned down for PIP and was getting into debt etc. I also had no quality of life.

There was a lot of Counselling and just listening. For me that helped, because my Family didn't seem to take on board what was happening

As different issues came up, she advised strategies to counteract them.

She also made suggestions to my GP/Consultant.

"Changing your thinking doesn't change the reality of living with life-limiting conditions, does it?"

No it doesn't. Perhaps general Counselling to start with, if there isn't any 'living with a disability' Counselling.

She helped me to identify what I could do, so I would go for a few minutes walk after dark etc.

That was a year ago and I've made a lot progress, so how you are now, might not be long term.

Thanks ProfessorMoody May I ask how long you gave it before you realised it wasn't helping? Also, if not too intrusive, were you able to attend every session? It seems attendance at every session is key (from persp of CBT orgs) but, as you'll probably know, with some conditions that is not always possible... It seems like a huge investment - emot, phys and psych'y) when resources are low for potentially very little return. New GP and appts (2 so far) have been dominated by anxiety with not much time to speak about CFS/ Fibro, so CBT has been really pushed for anxiety without implications this may have for other conditions... Speaking about anxiety creates anxiety in itself!! Not GP's fault but hard to give whole picture in appts.

Thanks, Birdsgottafly maybe I'll look further into that... 'talking' worsens the anxiety but relaxation and distraction might be worth a shot... Done alone, you mean? Can you rec any books etc you've used to help? Thanks so much.

OP, I second the mindfulness for health. I did reading, around this. I had a lot of time and was sick of the television.

It helps to block out the rest of the World, whilst you recover.

Who have you talked to though?

I used to go in a ball of anxiety and hopelessness and come out feeling better, because she would help me clarify things and as cliche as it is, count my blessings.

I still use some of the methods to not dwell about losing two years and not feeling able to return to the job/hobbies that I used to do.

So grateful but will take me time to reply to messages. It's great to get
a variety of views and opinions.
Sorry if I've not replied to your message yet but I honestly appreciate you all being kind enough to share. I feel like crying at your lovely thoughtful, understanding posts and the flowers whingeyarse - thank you.

This sounds suspiciously like IAPT that you're describing, do you know if it is?

IAPT is notorious for setting people up with harsh tripping points for immediate discharge for the service, and is accessed on a self referring basis.

If it is, it's not really likely to have a transformative impact on anything other than mild and straightforward problems. It tends to be quite basic - completing worksheets - without much basis to dig deeper.

However, plenty of the therapists working within the service are good and will be able to help get you started, give you a direction to aim towards, and work out key areas to target.

I had to start off with IAPT before I could get access to any other kind of service. The things I learnt there, and the experience of trusting the therapist, laid the foundation for the more difficult work I did later elsewhere.

Any form of therapy can initially be destabilising. But you do have to remember that after that initial period comes improvement. I tend to think of it as having to leap through the edge of flames to escape a burning building - tough and scary, but necessary and temporary to get somewhere safer and better.

But I can understand your apprehension. It really worried me. I think it gets talked up a bit sometimes to make sure people are aware and it doesn't take them by surprise. It won't necessarily be a bad as you're worrying. And it will only be temporary. They also provide support with coping mechanisms.

Three is another thread running at the moment about whether psychological therapy is useful for chronic pain. You might find some of that helpful /relevant to your circumstances? It has "am I being palmed off?" in the title.

Most if not all therapies for anxiety will involve you sharing your thought process and feelings with a therapist. So it is something you need to feel ready to work towards. They won't expect you to pour out anything on day one.

It won't be an interrogation. You'll be asked what you feel able to share. They'll also provide tools for you to think things through on your own at home, and then you could come back and ask questions on anything extra that came up, for example.

It might be worth thinking about whether it would be helpful to view it as the start of a process of facing your anxiety about working with a therapist?

Unfortunately, the way mental health services are set up and funded right now it can be a bit game playey, where you have to show you've taken up what is offered, worked at it, yet are still struggling before anyone will consider alternative services. That's why it has the "48 hour notice or you'll be discharged" rule written in, to get people off the books at the earliest opportunity.

I do not remotely agree with it, I think it's wrong, but I'm just giving you the heads up.

When I was full of worries she used to do visualisation exercises with me.

I used to go camping, so we picked a stream and I use to put myself in a spot that I used to love and visit regularly. I'd take in the environment/smells/sounds and them I'd pick up leaves and on each one, place my worries. Then I'd let them be carried away by the stream.

It would help me sleep.

When I was out, she would tell me to focus on one thing that I could see. Not to look around, or at other people. (I was struggling with my weight and other people's reaction to me). Whilst waiting for buses etc, I would have other visualisation techniques.

I was largely housebound, at one point. So I would make it my aim to keep the living room as clean as I could. I read Marie Kondo about decluttering and used her methods, to the best that I could.

Then I felt a bit better and put together some flowers in pots.

So slowly got 'me' back.

CBT has a strong evidence base for treating anxiety. Depending on what is available in your area you may be able to access telephone- or Internet- based therapy.

Speaking about anxiety does not create anxiety in itself. Avoidant behaviour makes anxiety much worse in the long run, though.

OP also see if there are any support groups in your area. My clinic would run over and we would start talking to each other in the waiting room. Or on our way out etc.

It was strangely worthwhile, although to other people it might have seemed like a moanfest.

There are some CBT resources here:

www.cci.health.wa.gov.au/resources/consumers.cfm

They're short modules so you could dip in and out. There's one on panic, another on social anxiety, and possibly some others you may find helpful depending your personal circumstances. Each topic has a series of modules once you click through.

(If you go through IAPT you'd probably be shown these at some point anyway! I have found some of them helpful. Take the parts that work for you.)

This is the other thread: www.mumsnet.com/Talk/am_i_being_unreasonable/3287072-AIBU-to-think-Im-being-palmed-off

And the pp is right that avoidance does make anxiety worse in the long run. It teaches your brain that you definitely do have a reason to be anxious, so then you can't even talk yourself down, etc. But it is important to face it in manageable steps without beating yourself up along the way.

"Changing your thinking doesn't change the reality of living with life-limiting conditions, does it?"

It changes your perspective, which, in my experience, matters more than reality. Imagine two people who decide to weigh themselves. In both instances, the scale shows the same number. However, their reactions will differ widely depending on their expectations because eg one person lost weight and the other put it on. Or one person thought they were heavier and the other thought they were lighter. So with the same number representing the same reality we can experience a different emotional response and it's all down to our thinking.

CBT is not a talking therapy as such (you won't lie down on the couch and discuss your childhood or your last argument with your partner). My CBT (on the NHS) concentrated on negative thinking patterns. Changing those patterns made my life better so it was certainly worth it. It's objective, universal and logical. There's really no point in making ourselves miserable with our own thinking.

There are plenty of resources online - have a look at them before making your decision (could you perhaps ask if the session could take place over the phone or Skype in case you are unable to leave the house). Also, CBT is not an instant cure. The "rules" are simple enough but putting them in practice time after time is hard even if very much worthwhile.

I have used self help CBT techniques for my chronic pain (and the thoughts that accompany chronic pain).

It was helpful to a limited extent. Worth doing, but not all of what I have needed to live with this, by any means!

I think it depends on the therapist tbh. I had one lovely man who also had chronic pain (as did his wife) and he got it. I had to stop for treatment (pain was too bad apparently) and then come back, but the new therapist was awful. Had no understanding and made no effort to understand. I ended up just worrying about the appointment all week, every week, and felt so much better when I rang and said I was stopping. So I guess it's worth a try, but it's put me off it.

It can help with anxiety definitely. I don’t have the others, so I can’t say, it seems to me it might help but I don’t know.

Recent studies show that it is ineffective and can actually cause harm. There is a lot of discussion about it on Twitter with various ME charities linking to the research.

CBT for anxiety yes but fibro is a physical condition.

I have tried CBT twice for panic / anxiety and did not find that it works. I suppose it is different for different people.