Questioning my ability to judge pain levels

[SBee]

There probably isnt an answer to this, but in the past few weeks I am almost starting to think I cant possibly be in the constant state of pain, and also of my feelings of the depth of pain.
When I speak with any medical professional I tell them the truth - I am in constant pain, 24hrs no let up, even if the severity can alter.

I have osteoarthritis in hips, knees and hands also inflammatory arthritis mostly in hands and wrists. The fibromyalgia nerve pain in mostly in upper body and arms, but like many I seem to feel pain in a very heightened way. Recently I saw a hand occupational therapists who gave me exercises to try to regain strength and movements in my hands - but not to use it on a 'bad pain day'. Thats left me flummoxed - for me, like many fibro sufferers every single day is a bad pain day.

Along with someone close to me who saw me finding it hard to move, and said 'well i get pain, you just have to get on with it' that and professionals seeming not to understand the concept of constant pain, these things has made me feel I'm just not strong enough to 'push the pain away '.

Like all of us, I DO 'get on with it '. After a night of pain, I always get up every single day, get on with the day and the daily tasks etc albeit with my health conditions limitations, and all this with all over pain and fatigue.

In short I guess this is a mini rant towards a world that doesnt seem receptive to the fact that every day is a struggle, and yet we all do the best we can despite being made to feel at times that because our brains and pain receptors get screwed up it seems ok to doubt that our pain is bloody real, that it simply cannot be as bad as the pain we actually do feel.

 

[sunkacola]

@SBee , here is what I think.
I think....because I have had the same feelings, thoughts, and doubts that you are expressing here..........that this is sort of a type of gaslighting that we do to ourselves because the world of people we live in often doesn't accept our reality as being real. It's very difficult to continue to feel real if everyone around you is saying or implying that you are not, so we start to doubt ourselves. This is one of the worst effects we get from having something like fibromyalgia, because it is so often "invisible" to others, and incomprehensible to people who have never experienced constant pain.

A very wise woman used to say to me, "You know what you know". This means, when you know the truth, it doesn't matter if others believe you or not. Their belief or disbelief does not alter the facts. And you do not need to let it make you doubt yourself.

Like you, I am in pain all the time. Where, and how bad it is, both vary greatly, but 24/7 if I ask myself if I hurt somewhere the answer is yes. I get relief when I am deeply asleep, because I am asleep. But if I wake up, the pain is there, so I can only assume it's there when I am asleep as well. It is not only possible to be in constant pain, it IS our reality. It IS that bad.

The thing is, we simply have to live with it, as you say. We get out of bed anyway. We go through our days anyway. We accomplish what we are able to do that day and do our best anyway. We do this because there's really only one alternative: die. And unless we take that extremely radical step, which most of us obviously don't, there is no other option but to live. There's no in-between thing!

I have a house and some land and three animals. These things have to be cared for. My house has to be clean and tidy or I get more depressed than I already am. The animals need my attention. I have to drive to town (45 minutes at least) to get groceries. I have to cook food. No one else is going to do these things for me, right? So, I do them because I am not dead and it's my job to do these things. That doesn't mean I am not in pain while I am doing them. You do the same, @SBee.

And here's what I always try to remember when I start to feel those doubts: We are so much stronger than other people think. So much stronger than we give ourselves credit for!! You know how people will say someone is "brave", or "courageous" to get on with life after they, say, became paralyzed or lost their legs? Well, it IS brave and courageous.....but at the same time, what choice did that person have? And what choice do we have? The only difference is that people cannot SEE our pain. We have our legs. We can move. So they don't give us the same credit. And then, because of that, sometimes we don't give ourselves the credit either.

Sometimes when this kind of doubt creeps up on me I go outside and look at the Mountains. They are Real. They don't judge. And they know that I am Real too. And it gives me back a little strength.

I think one of the purposes of this forum is to remind each other (and I need it too, sometimes) that we are REAL. Our pain is real. Our challenges and struggles are real. And we are brave and strong and courageous and we are hanging in there anyway. You, @SBee , are here often, encouraging others and offering support and kindness all the time. That is courage. That is strength.
Never doubt yourself. Or, if you do (which I do, too), come here and let us remind each other that we are Real.

 

[SBee]

Thank you @sunkacola I really appreciate your support and for giving me the reminder to believe in myself.

I know too well from experience ( indeed have written many times ) that we cannot expect people to understand how it is to live as we do. I know fully that we are extremely strong people, we achieve as much as we can every single day despite the constant pain... And yet... I still just want some people not to understand, but just to believe me, that my pain is, as you say, real. It is our reality.

Reluctantly I need to accept we are not always believed, no matter how distressing that can feel. Its kind of ridiculous that most of us are able to assure others with chronic pain that they really are pretty amazing for just doing what we do - get up and get on with it, and yet allow the self doubts to creep into ourselves at times.

Ive had a pretty crappy few weeks trying to constantly chase up medical appointment that I should have had 7 months ago and physio appts from nearly a year ago. I guess I was caught at a bad time and let the self doubts overtake my trust in myself.

You are so right that a large part of this forum is to reassure one another that here at least, we are believed, our pain is real, and we are so strong, even if we dont always feel that way. Thank you again.

 

[sunkacola]

Hugs to you, @SBee .
You are right.....so much of it is wanting to be believed. Truly believed, not just lip service.

My ex-friend, for instance, I am thinking did not really believe me when I told them what waking me up in the night does to me for the whole next day, and possibly even next two days. Even though I had explained it in detail, there was no real belief or they wouldn't have kept hurting me in that way over and over.
(Or, as has been suggested, they just don't care or are not able to think about anyone but themselves.)

I am so very sorry for what you are going through with trying to get appointments. I know that frustration ever so well!! It is actually one of the very worst frustrations I have ever known, because it combines the pain and disability that causes the need for help that we don't want to need in the first place with incompetence on the other end of the phone and complete lack of compassion or caring on the part of the professionals who are supposed to be helping us, for what we are going through. We don't even want to have to be asking, and to be treated with disregard and/or to encounter lack of assistance or incompetence when we do have to ask for help can (and does for me) create feelings of being utterly marginalized and disempowered. I end up feeling helpless, powerless, and surrounded by fools who hold the power to give or withhold what I need, and nothing feels more frustrating than that.

It reminds me of a time when I was so deep in depression and despair that I thought I might just take an exit, and I had been told my insurance company would refer a therapist to me. So I called them. I told them the parameters of the kind of therapist I was seeking, and they gave me 3 names. Well, none of those people even took that kind of insurance. I called them back and they gave me 3 more names, and I said, How about you give me 6 names, just in case?, so they did. Of those 6, 3 did not take the insurance, 2 of them were alcohol and drug treatment facilities (which I did NOT need!!!), and the other one was a child psychiatrist. I called them back and they gave me 11 more names and numbers. Not a single one of those was any good either. Did not take the insurance. Was yet another drug rehab center. Was a memory-care facility for Alzheimer's patients! Was a half-way house for people coming out of prison! ...and so on. I called the insurance company and told them they had just given me all the more incentive to do precisely what I was trying to get help to keep myself from doing.
And then, I managed to just keep going on my own with no help from anyone.

We are stronger than we think we are. And 'way stronger than others give us credit for.

 

[SBee]

You got those emotions and reactions to the utter chaos of seeking help just right @sunkacola

It is sometimes difficult to know we genuinely need ' outside' professional help, and the whole process of trying to arrange a much needed appointment - and for you, very urgent I see as not being weak, but a strength in recognising we need help,but the entire broken process of getting through to the correct dept rather leaves us feeling weakened.

It very much leaves us feeling unseen, and somewhat unworthy. So,I have left this continuing rigmarole of attempting to get the help until Monday, to give my head a little time away from the additional stress.

Again, thank you for reminding me of the strength we do all hold within us - and this forum giving us a safe place to unload and to realize we are not over sensitive or overreacting to incompetence from those who should be helping us when we need it most.

 

[JamieMarc]

We are real.

 

[JamieMarc]

It is a strange sort of life to live with fibromyalgia.

Seems like no matter how many times I remind a neighbor, say, of my pain (not whining, just comes up in conversation as relevant to whatever we're talking about), invariably the next time I see that neighbor no one EVER asks me how I am feeling today. Many of my neighbors have health problems that cause pain, and I ALWAYS ask them how they are doing but, apparently, my pain isn't real to them or they're just narcissistic asses. They ask me to do heavy work around my community despite knowing of my fibromyalgia. Yeah, sometimes I can do stuff like that, but why would you ask me to when you KNOW of my condition, my chronic pain? Again, another indication my FMS is invisible, unreal to them.

Same with family. Everyone is happy to talk about their own health problems and seek sympathy, empathy, whatever, maybe just attention. But no one ever asks about me, and I literally have the most serious, debilitating and painful health conditions of anyone in my family. Is my health and my pain not real to them? Are they just selfish people? I know part of it is because of my personality. I am a thoughtful person, a hugger and always express love for the people in my life, like with a heart or kiss or "I love you" at the end of my messages and phone calls. Nobody else does. Not patting myself on the back. Just saying, I don't know, what's the world come to? Why are people so self-involved to the point of uncaring?

I could go on, but that's my little rant and two cents today. LOL.

Again, I remind you that YOU ARE REAL. Your pain is real. Your suffering is real. I see you as real, and I care.

 

[SBee]

Shows we are quite a hurt group of people doesnt it @sunkacola and @JamieMarc. You know I desperately would like to gather us all up in a mass hug just so we are always aware that indeed we ARE cared for, even if so many times we and our pain seems invisible to others.
I truly hate that so many of us feel this.

Whilst I dont want to be defined by my poor health, if someone close tome has an illness I know little about I make a point to either ask them about it unless it may upset them, or do a little research so I can gain a small amount of knowledge so I can understand how they may be feeling and what they are going through. I think thats human decency. As you say @JamieMarc it not patting ourselves on the back, its just showing a small level of care.

I am fortunate, at times. Today a close family member did ask me how I am and was shocked to hear I can no longer pick up cups of liquid or saucepans etc. That in a recent flare I could not get the energy to even leave the house. At least they asked for me despite ( and i dont blame them for this) they have no understanding of the actual living with this. The worse thing for me is how bloody relentless this all is. If only some medical professionals understood this better at times.

I too believe I am avery caring person, I think its important to show love and kindness to those we have in our life,or indeed to a stranger if they need even just a smile. It honestly saddens me Jamie that much of your family are blind to the person you are.

We care for you as you do us, thats a solid true fact.

I also reiterate we are real, our pain is real. i will try to remember this if I doubt myself again.

Jamie and sunkacola, and anyone else having such difficult times and thoughts, , I send love and hugs to you.

Thanks for picking me up when I needed it and I hope at times you need it that I can do the same back for you. ❤

 

[JamieMarc]

Shows we are quite a hurt group of people doesnt it @sunkacola and @JamieMarc. You know I desperately would like to gather us all up in a mass hug just so we are always aware that indeed we ARE cared for, even if so many times we and our pain seems invisible to others.
I truly hate that so many of us feel this.

Whilst I dont want to be defined by my poor health, if someone close tome has an illness I know little about I make a point to either ask them about it unless it may upset them, or do a little research so I can gain a small amount of knowledge so I can understand how they may be feeling and what they are going through. I think thats human decency. As you say @JamieMarc it not patting ourselves on the back, its just showing a small level of care.

I am fortunate, at times. Today a close family member did ask me how I am and was shocked to hear I can no longer pick up cups of liquid or saucepans etc. That in a recent flare I could not get the energy to even leave the house. At least they asked for me despite ( and i dont blame them for this) they have no understanding of the actual living with this. The worse thing for me is how bloody relentless this all is. If only some medical professionals understood this better at times.

I too believe I am avery caring person, I think its important to show love and kindness to those we have in our life,or indeed to a stranger if they need even just a smile. It honestly saddens me Jamie that much of your family are blind to the person you are.

We care for you as you do us, thats a solid true fact.

I also reiterate we are real, our pain is real. i will try to remember this if I doubt myself again.

Jamie and sunkacola, and anyone else having such difficult times and thoughts, , I send love and hugs to you.

Thanks for picking me up when I needed it and I hope at times you need it that I can do the same back for you. ❤

@SBee You already have picked me up! Always do, and this afternoon you have again. @sunkacola too. Get ready.....

MASS. GROUP. (((((HUG!!!)))))

 

[SBee]

And now I'm really smiling and feeling the love - always back at you @JamieMarc

 

[Sueb24]

Not to belittle your post Sarah but I really do feel your pain. I’ve largely given up trying to explain my pain levels to people as I’m sick to death of all the comments like ‘maybe you’ll feel better tomorrow’, or ‘you do seem a little down at present’ or (the worst of all) ‘I know how you feel’ followed by a list of all their minor ailments. NO! You bloody well don’t know how I feel! Because if you had any idea of the pain I’m in each and every day you’d not make such stupid comments and maybe you’d offer some actual help since you are supposed to be a good friend. But hey, just say ‘you do seem a little down today’. Oh god I could rant, and rant, but I smile and say ‘Could be better’ because what good does it do to rant & lose yet another so called ‘friend’.

The only thing a good rant does is make me feel better briefly. I hope it did you Sarah but I doubt it helped your pain levels. I’m much older than you and now find I’m putting everything down to age & trying to cope with everything alone. My private physio does help but it doesn’t last & certainly doesn’t fix anything permanently. It’s shocking you haven’t received an appointment / let alone treatment as yet. It’s just rubbish.

 

[sunkacola]

@Sueb24 .....I can relate all too well to what you are saying. I wish there were something I could do to change things for you, for myself, for all of us in this conversation.

The fact is that human beings can really stink in some ways and one of them is that the vast majority of them do not want to have anything to do with the ongoing problems of others. If they can give you a quick fix, like offering you a ride somewhere, they'll do that. But if they can't "fix" you, and your troubles are on-going without an end in sight, most of them will abandon you.

I have almost no one left in my life at this point. I never, ever ask for any help from people, and I never spend time talking about my health problems (or any other problems) if I am in conversation with someone, so I know that it is not because I have "burned out" their willingness to listen or to help. What has happened, of course, is that I have had to cancel plans sometimes because when the day came I was unable to do what was planned either due to pain or to debilitating depression. But I never burdened a friend with that.
I don't blame people for jumping ship if that is what they need to do. I wish they wouldn't, but everyone has to do what they have to do.

People find this to be true no matter what their trouble is, I think. In my life I have found people to be intensely disappointing. I have never abandoned a friend because they were having difficulties, but most of the people I thought of as friends have stopped attempting to communicate with me. At this point, I am just letting it all go because I just don't have any energy for chasing after people who don't have time or inclination to reach out to connect with me. It's sad, but I am starting to think maybe I am better off just with my dogs.....and with the people on this forum, who show each other consistent caring and support and who understand what we are going through. I am grateful to all of you for the connections we have here.

 

[SBee]

Hiya @Sueb24 I agree. I would rather someone said nothing rather than the trite comments made if we try t o explain our pain. I am sure some people are well meaning, but this constant no relief pain is hard enough to have explained let alone living with on a 24 hr basis.
I prefer now, should someone enquire that theres good days ( lie ) and bad days. I usually brush off the comments of others but was caught out on a vulnerable day.

A rant does help! But also the knowledge that others really do understand. Whilst that is a comfort of sorts, there is always a slight guilt attached that others have to live like this without the lack of understanding from those about us. @sunkacola had the recent experience of a 'friend' who clearly ignored her explanation of why she should not be disturbed at night and @JamieMarc whose neighbours ask for help on heavy tasks that will exacerbate his pain.

All of us seem to need and 100% deserve if not understanding than certainly belief of our pain.

lets not get into my appt woes.... take care

 

[sunkacola]

@SBee ...sending you a hug.♥
Thank you for being here.

 

[SBee]

Same back @sunkacola - we all need propping up sometimes and no one knows better than us within the world of living with fibromyalgia and anyone with constant chronic pain, just how hard it can be. Its genuinely helpful to be able to lean on one another at times. Its plain to see that all of us need that, yet are willing to offer support back. Hope this week s kinder to you

Hug those dogs for me