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.

Definitely go for it. There is currently no talking therapy that is more effective for anxiety than CBT. If you have the opportunity to access it grab it with both hands.

Yes, the service policies are usually that if someone cancels or DNAs frequently they will be discharged, but it should be down to your therapist’s discretion. If you explain that your fatigue means there may be days where you can’t attend and are unable to give much notice I’m sure they’ll accept that in order to be flexible with your health issues, it’d be discriminatory not to! The only reason beyond that to be discharged is if you’re unable to attend frequently enough for it to have any chance at being effective. If you’re only attending every two or three appointments it’s not going to work so a discharge in that case isn’t a punitive thing, it’s simply that you’re unlikely to benefit so it would be a waste of your time.

Some people get mixed up between what’s offered in IAPT and mistakenly believe that working with a PWP (psychological well-being practitioner) is CBT. It isn’t. It can be very helpful and enough for some people, but if you’re not responding to that but putting the work in they should refer you further up the chain for CBT.

See how you get on with what’s offered and speak to the therapist about your concerns. Right now it seems you’re putting barriers in front of yourself with all of the ‘what if’s, which I’m guessing is partly how your anxiety manifests in your day to day life too. Try and let those worries slide for now, make the call and take it a step at a time.

It’s a misconception that CBT only helps ‘on the surface’ by the way, it can go very deep. Either way, if it works that’s what matters. You need to learn tools to handle and conquer your anxiety right now, whether that means skimming the surface of why you’re like this atm or going back to your childhood experiences doesn’t really matter, what you need is to figure out what to do when it strikes here and now.

Happy to answer any further questions.

CBT helped my anxiety but I think it laughable to use to it treat my CFS/FIBRO.

PS I’m talking about using it for your anxiety not your physical health issues. But your IAPT might also offer long term conditions support, the one local to me runs a group for people with chronic health difficulties.

But it’s very effective for anxiety. And getting a handle on your anxiety might take one problem off your plate.

I'm training as a counsellor and getting treatment myself.

All I can say is it probably won't help you physically, but any kind of counselling will help you see yourself and your life differently, which can have a positive effect on your physical health. Or at least give you control over your life again. Chronic illness takes that away.

As for CBT in particular, it's favoured by the nhs because it's cheap and produces quick results, not necessarily because it's the best form of counselling.

I'd ask to see an integrative counsellor who can tailor different counselling styles to your needs.

X

As for CBT in particular, it's favoured by the nhs because it's cheap and produces quick results, not necessarily because it's the best form of counselling.

It’s favoured because it has a strong evidence base for treating depression and anxiety disorders. It’s the gold standard if you check the NICE guidelines. It’s more effective than counselling for anxiety disorders.

Please don’t spread misinformation like that, it puts people off seeking help when they read things like ‘it’s only offered cos it’s a quick fix/cheap’. The NHS needs to make the most of its resources to ensure enough people who need treatment receive evidence based treatment, so of course they deliver a therapy which has the best chance of helping someone to recover in a reasonable period of time. That’s a good thing.

In my first paragraph I meant to write ‘anxiety disorders’ and not ‘depression and anxiety disorders’, it’s been discovered recently that counselling and CBT can offer equal benefits in treating depression.

I had CBT for CFS and anxiety over a number of months, and went on to include counselling as part of my uni degree.

It doesn’t work for everybody, but if it does work it can be very effective. If successful it will help you for the rest of your life (sounds so cheesy) as it will teach you coping mechanisms and ways of thinking that you can take with you through many situations.

Feel free to PM me

I second the links Gruff shared OP, have a look at them and see if you can work through the first couple of modules. That’ll give you a really good idea about what’s involved in CBT, which should help you make your decision whether to go for it or not.

If you don’t though, what will change?

I can only relate to anxiety and depression but I found CBT a positive experience. It was carried out over the phone and we agreed on tasks to aim for (nothing too taxing) by the following session. A lot of what we spoke about was to do with adjusting my perception of what was going on to eliminate the 'catastrophising' I had been doing. I really did improve.

My doctor also told me about an Australian website called MoodGym which is supposed to be a good CBT course (and free).

I was really down on CBT when I had anxiety - I used to think ‘I can’t help thinking stuff!’

However being 80% anxiety free I can now see how much it helped me get better.

Unfortunately anxiety is only controlled by gradually facing your fears & building your confidence - it’s very hard work.

When I thought about it I was more afraid of panic than the source of my panic. Eventually, with a lot of hard work, medication and CBT my anxiety is mostly under control.

Being my own cheerleader & friend in my head was CBT....
What’s the worst that can happen
You can do it
You haven’t failed
It’s just a bad day not a bad life
All key phrases in my head from CBT

I'm reasonably positive about CBT, it did help to some extent. Trying to separate mental and physical problems is quite counterproductive IMO, they are so closely intertwined and affect each other so much that tackling any part of the cluster could have a positive effect on other bits of it.

A close family member has CFS and as a side effect from being housebound started showing signs of anxiety. It was the best thing ever for them, if it's offered to you, try it. It helped assist with a what can I do approach and lots more.You can pm me, ps work out your red energy for the days so you can benefit the most that you can from the treatment as it's pretty tiring but the difference after a cbt session was so worth it. Skype was an option too. It wasn't a cure but definitely helps.

@ShmooBooMoo - there’s a book called “managing anxiety with cbt for dummies” - easy to read and to dip in and out of, just use the chapters you find helpful etc. I think it has links to additional online worksheets as well. Might help as a starting point?

Useless for Fibro & not great for Anxiety in group work. I can see it may be useful on a one to one basis though, so worth a try for the anxiety if you can get it one to one.

Hi OP
I had CBT for CFS (which for me presents itself in tiredness and awful headaches which can last weeks, and the resulting anxiety around work / sick days etc). It was a few years ago so can't remember exactly but think I had 6 - 8 sessions.

I found it a bit useful but not life changing. I didn't really like the therapist (nothing they did wrong, I'm just picky!). After delving into my thought processes for a few weeks he basically concluded my anxiety was logical and proportionate (was worried about my job after various discussions with managers about time off sick).

There were two useful aspects though. One exercise was to grade activities as low energy, medium and high. For example listening to music low, talking to a friend on the phone medium, working high. Then assign a colour to each (green amber red). Then keep a diary in the form of a table with days one side and hours or half hours the other and write in each block the main activity. Then colour code each square green amber or red. This was v useful for me as it showed I hardly ever truly rested. He challenged me to do a slow walk for 20 min 4x a week and also just sit and read / look at the garden / listen to music a bit more and I found that keeping this type of diary and writing it down made me do it so I naturally got better at pacing myself. Basically I was pushing myself too far and it helped me learn to stop and rest before I got to that point (I'm still not great at it tbh but better than I was)

The other thing was mindfulness. He just talked me through the body sweep (I think?) and it's something I still do sometimes to help relax. If I've got a lot on I try and take some time out to do it to rebalance and it does help. But could have done this with any mindfulness etc app

I don't have / didnt have severe CFS in that I could still work (if I didn't do anything else out of work) so not sure how it would work for other situations.

Hope this has helped a bit

I have a chronic pain condition which includes fatigue, and also have some symptoms of PTSD associated with my diagnosis, as it came as a bit of a shock. I had some telephone CBT and found it of limited usefulness, but mainly for two reasons - one because it meant that stopped burying my head in the sand about my feelings, and two because the mindfulness techniques were good - breathing and stuff. However, I know people who have found it useful, but I think you have to be in a receptive mindset for it to help.

I also got a referral to health psychology, which is much better, as it is focused on chronic pain conditions, and adjusting to them. There is a long waiting list - mine was a year. Not sure if you are under a pain management team at hospital, but mine have 6 week courses run by nurses/physios/mental health professionals etc which are really good - a kind of multi-disciplinary approach to managing pain and fatigue. You also see a consultant to discuss the best pain relief options.

When dealing with GPs, I find it is best to write things down, and to say why you think something would not work for you, and ask for their thoughts on an alternative that you think would be better.

Have you tried alternatives like medication? I take pregabalin for pain, and it is also used to treat anxiety, so could be a good option if you could tolerate the side effects. I also take duloxetine, which is also for nerve pain/fibro and is also an antidepressant. Also things like propanolol which stop the physical sensations of anxiety. Could be useful if only to allow you to access the talking therapies. Hope you find something that helps

Dd didnt benefit at all from her CBT

But she is 16 and knows everything so that may have had something to do with it

She has also been seeing a Psychiatrist...and that hasnt helped either (may be for the same reason)

I think its worth trying and the therapist did his best to work round dds school etc

I was suffering with severe anxiety that took over my whole life. I didn't believe it would work but I tried CBT and it's worked! You've got to work hard at it and give it a go but it really has changed my life and I never thought it would do.

Give it a go and see if it can help you. It's different for everyone but definitely worth a try.