Cfs

LadyMorticia

Mojisola wrote: »

From reports back to our group, where it has been of benefit it has helped people who were still fighting the illness and mourning the loss of their previous life. You need to accept that you are ill before you can start to manage the symptoms. This doesn't just apply to ME but any other chronic health problem.

It also caused serious relapses in some people whose therapists were working with the model that ME is down to behavioural and cognitive factors. They were told that their symptoms were down to "wrong thinking", that they weren't really physically ill and that their symptoms only persisted because they were frightened of getting well.

I didn't find CBT beneficial for my mental health. I had it when I was 15 and I had it more recently as it was thought that being so young at the time, it wasn't beneficial. I had it more recently and I didn't find it helpful then either, so I'm not sure how helpful it would be for the M.E if it didn't even help my mental state!

Unfortunately, there are many out there who believe that M.E is all in the mind (a kind of mental illness in a way) which is sad. We find it hard enough to get taken seriously as it is, without being told that our physical pain and exhaustion is all in our heads.

Mojisola

LadyMorticia wrote: »

Unfortunately, there are many out there who believe that M.E is all in the mind (a kind of mental illness in a way) which is sad. We find it hard enough to get taken seriously as it is, without being told that our physical pain and exhaustion is all in our heads.

It is unfortunate, especially as the government has spent a lot of money testing CBT as a treatment for ME - https://www.meassociation.org.uk/?p=4607

If only they would put money into looking at the physical changes in people with ME, we might be able to get some kind of treatments.

Lum

I think CBT only really works, for anything, on a certain kind of person anyway. I was sent for CBT after a fairly severe car accident as I was having issues of tensing up and reacting badly around tailgaters.

Turned up the shrink and explained that I'm fully aware that this reaction is completely irrational and that the logical side of my brain knows that just because someone is tailgating doesn't necessarily mean I'm going to get hit again, and he looked like I'd just knocked the wind out of his sails (or perhaps more likely, the fees for 20 sessions out of his wallet) as it turns out that CBT is basically about making you try to think in that way.

Complete waste of time for someone like me who already does this.

sunnyone

Anubis wrote: »

To be fair, apart from a pain clinic and a bit of physio thrown in, there is little they can do. I was referred to the pain clinic years ago, who gave up on me "nothing we can do, you are too limited in mobility for exercises" followed by the same attitude at physio.

Until they find out more about things, there is little that can be done which is why it is impirtant you pace yourself etc to do what you can, for you.

Have you not been offered alternative solutions to pain? I meditate which is really juat a deep relaxation technique and I have tried accupunture etc. too all on the NHS.

I also have been prescribed books which have really helped me.

Chronic pain patients need to understand the origins of pain and how to best deal with that pain with and without drug therapies.

Torry_Quine

sunnyone wrote: »

Have you not been offered alternative solutions to pain? I meditate which is really juat a deep relaxation technique and I have tried accupunture etc. too all on the NHS.

I also have been prescribed books which have really helped me.

Chronic pain patients need to understand the origins of pain and how to best deal with that pain with and without drug therapies.

Can't speak for Anubis but I haven't been offered anything else other than pain killers.

sunnyone

Torry_Quine wrote: »

Can't speak for Anubis but I haven't been offered anything else other than pain killers.

I have been offered many diffrent pain relief options as well as drugs, are you seen at a pain managment clinic?

Torry_Quine

sunnyone wrote: »

I have been offered many diffrent pain relief options as well as drugs, are you seen at a pain managment clinic?

Didn't even know there was such a thing never mind be referred to it.

Anubis_2

Torry_Quine wrote: »

Didn't even know there was such a thing never mind be referred to it.

Ask your doctor for a referral. They are meant to be good nowadays. It is a long time since I was at one and they didn't do much and since then my conditions have become far more complex down the years.

I think it is definitely worth you asking your doctor to refer you. My specialist referred me but like I said it was years ago and I had less conditions back then.

Anubis_2

Ellejmorgan wrote: »

I've had some hypnotherapy for chronic pain..
I felt very relaxed if nothing else which I think for a I was less tense which helped my condition..

I'm thinking of alternative therapies, was considering reflexology...
Has anyone else had it done, was it any good. ??

Haven't had reflexology but almost had accupuncture. I say almost as I was referred to an NHS specialist in accupuncture a few years ago. It was on my birthday my appointment and I had to wait a couple of hours to see him as there was a delay. The hospital was quite a number of miles away as it was the nearest one to me that did it back then so it took a good while to get there.

I was excited and nervous at the same time. I was prepared and on the bed waiting and when he came he drew the curtains and sat reading my records and asking questions. He then point blank refused to carry out the treatment as he said he wasn't prepared to take the risk given the conditions I had. I was really upset about it as I had been looking forward to it and hoping it would help.

I asked him why could he not have made that decision previous to me having an appointment. His response was that he hadn't read all my notes and mumbled something about his understudy. A whole (birth)day wasted going there and travelling for nothing!

Mojisola

The three alternative treatments that I am sure have helped me are cranial osteopathy, homeopathy and acupuncture but you need to find a good therapist and be willing to stick at it.

And before anyone starts on about alternative therapies and particularly homeopathy being nonsense - I don't care. For a price I could afford, I have made great improvements in my health. If it's all down to my mind because someone gave me a sugar pill - I don't care. I wasn't getting well without the sugar pills so I am happy with the results.