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.

 

[Frizzybee]

This may not help either, since many people just cannot seem to empathize with other people but are awfully quick to judge. I usually try to make them understand by explaining the fMRI research done several years ago (sorry can't remember the source anymore) where an even amount pressure was applied to the same point (thumbs I think?) on the bodies of people with and without FMS, and a pain scale was recorded by using what showed up on the fMRI. I'm not sure of how that was manifested on the machine, but the results were that people with FMS registered between 3 and 10 times as much pain with the lowest amount of pressure that caused minimal pain to the normal controls. The degree of pain correlated to the severity of symptoms reported by those with FMS. I also ask them to remember the last time they were in awful pain and describe it to me. Then I ask them to describe how long it was before it ended (usually not long) and how relieved they felt when it stopped. Lastly, I ask them to try to imagine what it might be like that to feel that way forever with no let up. If they still don't understand at all, I give up, since they are probably aliens disguised as humans, or they may as well be!

 

[Altered life]

Agree. I get angry, then remember that my anger is born out of disappointment. At the medical system that says: [ If we can't see a cause for pain on an x-ray, or other test, then, we can't find anything wrong with you. So it must be, that the state of your mind, is causing the pain you feel. ] No, my mind did not just suddenly decide to produce pain! And that is an uneducated, poor excuse they throw at us. That's why this forum is important. When the 'attending doctors' convince your support system that it's a result of 'your brain wires getting crossed'. I sometimes have to stop everything and have a good cry. And I remember Luke 23:24, ''Forgive them Father! They don't know what they are doing". That is, they don't know how much they wound my spirit, with their casual disregard for my daily struggles.

 

[SBee]

Thanks for the extra hugs @Nan -i send some back your way. I mostly shy away from trying to explain fibromyalgia. But having osteoarthritis ( and inflammatory arthritis) are conditions that most people have heard of so at least anyone asking can grasp onto that and kind of bleep out the fibromyalgia...

@Frizzybee ... There are obviously a huge amount of aliens around then! The pain levels felt by people with fibromyalgia is something most of us experience. My rheumatologist ( in UK, at my hospital at least they will not touch fibro sufferers) diagnosed me also with central sensitization syndrome, the reaction to certain stimuli are documented in this. Strangely there is very little about CSS to be found in the UK.

@Altered life I do get the same anger, generally followed by some tears. I assumed after years of symptoms, actually having a diagnosis would mean a better understanding from others, but of course it doesnt. I understand your feelings of hurt.
In some ways I do think my head does come into play with fibro, in that my own belief of the possible causes, is that the brain, spinal cord and nerves ( workings of the central nervous system,) cannot process correctly our pain,reactions to light, sound smells and the many many varied symptoms we get.

BUT this is massively different to the glib comments of ' its all in your head' that tries to make us believe we almost make things up, that we can 'create pain' . This type of speech is cruel,belittling and very damaging. I am sorry to say I dont always find myself able to forgive as you try to.

 

[sunkacola]

In some ways I do think my head does come into play with fibro,

BUT this is massively different to the glib comments of ' its all in your head' that tries to make us believe we almost make things up, that we can 'create pain' . This type of speech is cruel,belittling and very damaging. I am sorry to say I dont always find myself able to forgive as you try to

^This.
Many researchers into fibromyalgia are now thinking that fibro is actually "brain pain", rather than "body pain", meaning that the actual source of the pain is in the brain rather than in the body part that is hurting. In other words, the brain is sending pain signals to the body when there is no physical injury or other cause that they can find for the pain.

This makes sense to me, because we all know that one of the definitions of fibromyalgia is that the person feels severe pain, yet tests on the body, scans, x-rays, ultrasound, MRI and so on cannot find any thing happening in the body that would account for the pain. So, in that sense, it's true that our brains are misfiring and deciding to send pain signals out to the body without there being a physical cause for it. I think...this is my way of looking at it.... the difference is that there is the brain and there is the mind. And the physical brain is the thing that is malfunctioning, not the person's mind.

The problem arises, of course, when people think that they are the same thing, and the physical brain misfiring is the same thing as the person imagining the pain, being paranoid about pain, being a hypochondriac, or being in some other way mentally ill or impaired, because nothing could be further from the truth.

I try to explain this to people by pointing out that there is a huge difference between being mentally ill and having a brain injury. No one would accuse someone with a TBI of being mentally ill if they could no longer, for instance, use their right hand because the portion of their physical brain which controls that hand got damaged in an accident.

Although fibromyalgia is not the result of a brain injury, it is a misfunction of the brain (or so it is starting to be believed by researchers). Understanding that a misfunction of the brain is NOT a mental illness, and not something which mental health professionals can help with is hard for some people. Unfortunately, people get a set idea in their minds about how the brain/mind functions and they won't expand their thinking.

They also don't want to take the initiative themselves to open their minds, do research, or try to grasp the concepts. And those of us who suffer from their misconceptions are expected to help them to change their understanding. But most of the time, we are just too exhausted to do that.