Questioning my ability to judge pain levels

[SBee]

I think @sunkacola its also a case of " cant see it, cant understand it so I choose to ignore it". But I have to be totally honest and say prior to my proper diagnosis of fibromyalgia I had very little real knowledge of what it involved myself. In some ways it was reassuring to be able to link up so many symptoms.
We are back to previous talk of if we cannot have understanding can we please have just belief in us.

 

[SBee]

Couldnt put it better myself @30 plus years !
Its a bit like dangling the much needed help in front of me then pulling it away again. ( those in my age bracket in the UK could liken it to Bullseye in TV years back - Here's What You Could Have Won )

 

[Sueb24]

@Sueb24

I'm back in a face mask and using hand sprays when in crowded spaces now. Just cant risk it and hospitals have a 95% increase in flu cases compared to last year.

Yep! At present I have an awful cold which has now gone to my chest. I’m wheezing & rattling like a decommissioned Thomas The Tank Engine. And everything takes so much longer to shift.

Boom and Bust? I'm legendary at getting it wrong. The rheumatology occupational therapist said how important pacing is and I gave her a guilty look - naturally she said, in a kind manner ' but you have fibromyalgia, you know how that goes' I just agreed but said, anyone with fibromyalgia knows they are really on their own with it.

Oh tell me about it. They lecture you kindly but try practicing what you preach. It’s simply not that easy.

Physio request has been a mare. I asked for referral in Jan, the physiotherapist declined to see me, so was referred to a pain clinic. Imagine that waiting list. I am now on a waiting list to go onto their waiting list.

Wrong, wrong, wrong. It makes me so very angry.

 

[Sueb24]

The other day I got a phone call from someone I almost never hear from, someone who knows I have fibro. During the conversation, which was almost all solid talk from the other person, they asked me how my health was. I said, "Well, actually not good at all these days." And without ever responding to that, they immediately started talking about something else. It made me wonder why they asked. Now, don't get me wrong....I don't really want to talk about it! There's really no good that comes from me telling someone else how bad I feel these days, how diminished my life has become. But it would be nicer just not to ask than to ask and then change the subject, I think. I ended up feeling dismissed once again.

Ah well. So it goes.

So it goes indeed but god does it hurt sometimes when people do that. I’m waiting for a Christmas card to drop through the door from one of my neighbours. They never ask how I am, or if I need any help, or anything at all. Not that I’d welcome it now but the card will be full of platitudes and ‘merry’ season wishes and you know, deep down, that don’t care a hoot so why do they bother? Why? Because it makes THEM feel better.

 

[SBee]

Oh @Sueb24 I think I will take you and your supportive indignation for me along to my next appointments.
I'm sorry you have caught that infection. I hope it wont set up a flare in the fibro or the RA. I am so cautious now in crowds or enclosed spaces. Its taken me a while to ignore the stares as I am back in masks, but tbh I'm now just grateful for the potential protection it gives.

Apparently the hand occupational therapist sessions will include the fine art of pacing... As you say the principle is fine, its a fabulous aim that we can put into practice quite a bit, and I know that it really does work. But the actual difficulty in working with pacing in Real Life comes a cropper sometimes. If I know I simply have used up energy reserves, or pushed (my hands in particular) too hard, its out with the heat bags or ice packs for instant temporary relief, and an exceptionally restful day the next if possible.

I hope that potentially if the occp therapist sees how debilitating the rest of my body is, she may be able to push things further.

Take good care of yourself whilst you are so poorly.

 

[Nan]

Hi I sympathy with you with pain it builds up and up every day and overpowers us and we get further down in the depression. All we can do is the best we can and not forget to ‘keep taking our tablets’. Take care and keep going.