pain clinic

[SchroedingersCat]

The pain clinic I was offered was also 6 weeks during working hours, so I turned it down. It's almost as if the NHS assumes if you're suffering chronic pain, you won't be working. Ha!

[Brian]

The pain clinic I was offered was also 6 weeks during working hours, so I turned it down. It's almost as if the NHS assumes if you're suffering chronic pain, you won't be working. Ha!

Well I would assume that as well as I couldn't work

[SchroedingersCat]

Plenty of us do, though. I can think of several friends with FM, ME, arthritis, EDS, or rheumatism who do still work, either full or part time.

[Brian]

Plenty of us do, though. I can think of several friends with FM, ME, arthritis, EDS, or rheumatism who do still work, either full or part time.

I suppose it's like everything it depends how bad you've got it

[Zia2014]

I think it's sadly too common SC. it's the same with the support groups I've seen - all set up for non-workers. The only reason I'm not currently working is so I can attend all these appointments. Once they are done I will be looking for another job, but I am fortunate that I have a choice in that.

There are lots of people who can't attend due to work and the hours offered really should be changed so some is OOH. Think how many more could benefit...

It's not necessarily how bad you have it Brian, it can just depend on personal circumstances at the time. Some people have fibro very badly but work as they can't afford not to.

[dazzleship]

The pain clinic I was offered was also 6 weeks during working hours, so I turned it down. It's almost as if the NHS assumes if you're suffering chronic pain, you won't be working. Ha!

that does seem to be their assumption, annoyingly. it's probably the same reason why they never seem to make any effort for appointments to be on time. when I've already taken time out from my working day to attend this GP / hospital / whatever clinic, I would appreciate if the clinic concerned at least attempted to make an effort to see me on time

I suppose it's like everything it depends how bad you've got it

oh, the ol' "if you're working you can't be too ill/disabled" chestnut huh? so the fact that I spend my evenings and weekends recovering just from working, and many days at work in so much pain/uncomfortable that I struggle to concentrate, means I have it easy? I don't think so.

It's not necessarily how bad you have it Brian, it can just depend on personal circumstances at the time. Some people have fibro very badly but work as they can't afford not to.

quite.

[Brian]

If you were that bad you couldn't work it doesn't matter how many bills you have to pay, I was only saying there is different levels as in everybody's different

[carolad]

If you were that bad you couldn't work it doesn't matter how many bills you have to pay, I was only saying there is different levels as in everybody's different

Yes, it is really impossible to compare people's experiences. We are all different, we are all unique in the symptoms we have, how we deal with them and our personal circumstances

I work, though last year cut my hours down to 30 hours a week. Like some others on here, I really have no life outside of work because it takes all my energy. But I know I'm lucky that I can still work - it gives me a reason to keep going!

[denys]

Pain is a perceived emotion, if looking at a scale of 1 to 10 and I said my pain was a 4 and you said yours was a 6 doesnt mean your pain is worse than mine its just what you perceive it to be.

We shouldnt talk about how 'bad' one persons condition is compared to another's as its just not fair to try to do that (as well as not being very supportive)

Its the same as working, some find they can push through as they will hurt whether they do a task or not, others (myself included) cant, doesnt really matter. Doesnt mean my condition is worse than theirs, it just means no matter how much I tried I couldnt do it and I applaud anyone who can.

[Brian]

Pain is a perceived emotion, if looking at a scale of 1 to 10 and I said my pain was a 4 and you said yours was a 6 doesnt mean your pain is worse than mine its just what you perceive it to be.

We shouldnt talk about how 'bad' one persons condition is compared to another's as its just not fair to try to do that (as well as not being very supportive)

Its the same as working, some find they can push through as they will hurt whether they do a task or not, others (myself included) cant, doesnt really matter. Doesnt mean my condition is worse than theirs, it just means no matter how much I tried I couldnt do it and I applaud anyone who can.

I disagree with this as I had one Job that lasted 17 1/2 years and I didn't want to stop working and if I could still work I would as being on benefits is sh*t,so I disagree saying like we've all got the same pain it's only some of us that can push through it and keep going

Plus after much research there is different levels of fibromyalgia some people can still work others are bed bound

[denys]

I know that Brian but people saying oh my pain is much worse than yours is of no benefit, I too loved my job and if I could have I would have kept pushing through but couldn't but who is to say that the bed bound persons pain is worse than the working person's It is a fact that pain is a perceived emotion. It cannot be measured so therefore cannot be compared

This is a very emotive subject, I am well aware how horrible it is to live off benefits, I do it myself. I was used to being able to afford nice things and took a heavy financial loss as many many of us have had to and that is why I salute those who still manage to drag themselves into a work place and perform any sort of work

[carolad]

I agree, it is impossible to compare people's experiences of pain...or fatigue, since these things are all so subjective. You know how it feels to you, but you can't convey your feelings to another person.

And you have to remember that the perception of pain is 'in your head'. Saying this always provokes a negative reaction because it implies you are just making it up, but that is definitely NOT what I mean! But pain does have an emotional side to it. I'm sure everyone has heard the stories of soldiers getting terrible injuries in a war situation but they don't feel pain at the time, due to the adrenalin rush and the determination to get the job done... And I'm sure we can also relate to the situation where if you are in pain and you concentrate wholly on that pain and think of how awful it is and how it is stopping you doing everything you enjoy, then the pain will seem even worse, you will get depressed about it, that will make the pain worse etc etc. But if you can lose yourself in an activity you enjoy, you stop thinking about the pain for a while and so it 'seems' less painful. This is why things like CBT and meditation are very helpful when dealing with chronic pain.

So pain is very complicated, it is tied up with your emotional state and you will have different levels of tolerance to pain at different times of your life. We can all agree though that pain is unpleasant and it can interfere with people's ability to live a 'normal' life. We all have pain, we all deal with it differently but we should try and be tolerant and supportive of others, whatever their personal circumstances.

Gentle hugs to you all

[SchroedingersCat]

Pain is a very funny thing indeed. I can have pain that makes me gasp for breath when I move, and still make it into work, I can have nagging all over pain that makes my body feel like it's made out of lead, and I'll still get to work. Give me a bad headache and I'm out.

[Zia2014]

I agree with Carol and denys, very well put.

Like SC, using myself as an example, I can be in agonising pain, dizziness, being sick or confused - I could still make it into work. However, two nights of no sleep and my exhaustion levels were through the roof. Having to drive to work and do a complicated/strategic role meant I would be off sick with those symptoms.

The thing with Fibro is it does vary, not only between people but by symptoms and by the hour. It is impossible to compare. And I feel a little sad to read a post like that on here, because we need the support and understanding of our Fibro Family - we have it hard enough from people without it!

It is a highly emotive subject and whilst I really sympathise Brian that you had to give up your job (and to anyone else who has), I do think fibro is still very misunderstood and confusing. Comparisons are never helpful, least of all with fibro.

[MPSGuy]

Pain is a perceived emotion, if looking at a scale of 1 to 10 and I said my pain was a 4 and you said yours was a 6 doesnt mean your pain is worse than mine its just what you perceive it to be.

I thought the whole point of pain scales, when applied properly, was to try and give an objective view of 'how bad' a person's pain was. I think the problem is some people can be a bit dramatic and rate their pain as 9/10 all the time without actually looking at what that rating objectively means. 8 or 9 out of 10 on most scales means awful severe pain, unable to do anything, barely able to speak if at all, and maybe even contemplating suicide if no relief is available.

Assuming the same scale is applied and the people are giving a considered answer then I would say someone who states their pain is a 6 is in more pain and most likely more disabled than someone who rates their pain as a 4.

I don't buy into the idea that some people can 'push through it' and others can't. I think that implies some kind of mental or character weakness when that isn't the case. I think that thought process is what leads some doctors to prescribe every patient paracetamol or ibuprofen and then label anyone who asks for something strong as a drug seeker.

I'd rate my pain as a 2/3 today. Annoying and distracting but I can push it to one side and do the things I want to do. Once it gets up to a 4 or 5 then I struggle. A rating of 6 for me means I am swallowing every pain killer I can find and I'm not going to get anything done for the day as the pain and side-effects from the drugs creates a perfect storm of disorientation, fatigue, lack of concentration, etc.