I need your views on pain and fatigue for the NHS.

[DISC]

Hi all. My senior pain consultant is interested in changing attitudes in the medical world when it comes to fatigue when ilinked to pain, any type of pain, as he feels that fatigue is often negclected, overlooked, brushed to the side, or simply labled as just a 'symptom of pain', and therefore something to just 'deal with'. Therefore I would like to collate your views. How would you like medical professionals to tackle fatigue when it is linked to your pain? What words would you prefer they use? What questions would you like them to ask? What would be helpful? What is NOT helpful? How could your fatigue be better understood? How do you cope with your fatigue? What would help you to cope with it? What has been helpful in the past? Has anything a medical professional has done in the past been particularly helpful, or not as the case may be? How important a factor is fatigue on your pain? How does fatigue affect your pain, and your condition generally, day to day etc? Any of your views I will be glad to pass on to better help all of us in the future.

[Jay66]

Hi. These are my views:

1. I would like fatigue renaming. I don't know what with. But it sounds like you are just having a Victorian lady's attack of the vapours.

2. I would like a chart from 1 to 10, with 10 meaning barely able to lift your head, just like there is for pain, with examples given to illustrate each level.

3. It has been entirely ignored by GPs except when one cited it as a symptom of stress when he tried to convince me that the cause of all my problems was stress and depression.

4. I cope with it by regularly resting during the day, if I can. Sometimes I work though it, but this always has consequences - sometimes being wiped out for the whole of the next day. I also quit working.

5. I don't think it features at all in my GP's assessment of me. He can get his head around pain, but not fatigue. The physio is the only one who mentioned it. She gave me a booklet about 'pacing' yourself which was useful if a bit impractical when working.

6. I did not recognise what was 'normal' and what was 'ill'. It isn't like pain where you often know you shouldn't feel that way. I eventually concluded that I must be lazy because I couldn't do the things people were saying they could do in a day.

7. I am sure the fatigue makes the pain worse. If it hurts to lift my arm - that is my muscles telling me they have no more to give - so fatigue leads directly to greater pain.

8. Forgot one - it stops me thinking straight. I am not a stupid person but by heavens I do some stupid things when I am seriously fatigued. Doctors should tell people not to make decisions until after they have a good sleep.

[DISC in reply to Jay66]

This is great! Thanks, I WILL pass this on!

[cyberbarn]

I would like them to start by reading this paper:

onlinelibrary.wiley.com/doi...

The two main contributing factors for chronic fatigue is pain and disrupted sleep. One of the factors in disrupted sleep is pain. But the other is autonomic problems.

When someone has chronic fatigue and pain, instead of referring people to pain management clinics and CBT they should be referring them to sleep clinics.

[Debra0001]

Hi

As I'm currently on an NHS pain rehabilitation course this is an interesting part that isn't being specifically covered. They do advise that pain stress and activity can increase fatigue so try to do a restorative 'green' activity after a 'red' activity. And mustnt go to bed when a flare. Laying down just for a while may be ok but keep moving for long term benefit.

I think fatigue is a obstacle to work and good mood. It would be useful if there was a web presentation to help with tips to manage ourselves. Medication can both be helpful and a terrible problem with drowsiness. This also affects relationships. Good restorative sleep, learning about the negative effects of stress and pushing through pain to get a job done could be additional great information to help. Maybe a copy of this rnoh programme and videos? What we don't want is dismissal, no advice or just discuss medication. Send us off to resources that may help at least slightly.

[DISC in reply to Debra0001]

Thanks for the comments... really helpful. I WILL pass them on!

[FlissFloss]

Just to be taken seriously would be good! I sleep between 12 & 15 hours at a time. Just to cope! Doctors need to understand that pain and fatigue are intrinsically linked and need the be treated as such.