So sick of it :(

[Chronicrxx]

Hello, I'm new here <3

Been having a really bad few months with the constant pain from fibro as I'm sure everyone on this forum is suffering

I joined a new gp last year after moving and I feel so stuck with my pain and not being taken seriously. My pain used to be very centred around a trigger point in my shoulder but over the last year or so it's spread to my mid back and ribs with no relief with whatever I try! I'm waiting for a pain management appt next month but feel so low, crying every morning when I wake up. I take one Tramadol a day for the pain but it rarely takes the edge off and I don't want to start taking more and more as it's not ideal being such a strong painkiller. So sick of how much of my life it has affected - I recently had to quit my job of 8 years as I just can no longer cope. Ive been on every medication under the sun and nothing helps. Exercise seems to exacerbate the pain and I feel so stuck.

I wish fibromyalgia was taken more seriously by the healthcare system and we weren't passed off as JUST having fibro.

 

[sunkacola]

Hi @Chronicrxx . Yeah, I know that "just" is hard to take sometimes. As if it being fibro means it's really not that bad, when we all know that it can be life changing and debilitating.

I have a kind of personal collection of things that help me get through the day.
One is my animals, and really that's the most important thing in the world to me, as I wouldn't want to live without my dogs.Tehy bring me joy every day, and comfort me when things are really bad.

Another is the various ways I find to distract myself on the days when I am too laid up to get anything meaningful done. On any day that I can, I try to work on a project of some kind around my home, so that I can feel a sense of accomplishment, and even if I work on it for 10 minutes I give myself a lot of credit for that. Things get done, even if it takes vastly longer than it used to. Even daily chores, I pat myself on the back, tell myself I got this and that done today. That helps.

For distraction, I read a lot....lose myself in a book, and that helps. I make art, and couldn't care less whether anyone would think it's "good" or not, since I never show it to anyone anyway. If I don't like it, I toss it or paint over it!

If I lived someplace where I could have a garden of any size or kind I'd do that, but I live in a desert.

I think it's vitally important to find something.........literally anything..........that brings you a bit of joy and make sure you get that little hit of joy every day. And if you can find any kind of hobby at all and do that, it can distract you from the pain and help the hours go by.

I don't know if any of that is helpful at all.
Mostly, just know that we on this forum understand and are here to help if we can.

 

[Chronicrxx]

Thank you Sunkacola, that's really helpful advice

Despite feeling really awful today I have managed to get a few things done at home and the next goal is to try and have a nice bath. It's so hard most days when you wake up in such a severe amount of pain and feeling hopeless for the day ahead, but it has helped a little finding the forum and knowing I'm not alone.

I've recently discovered reading again and ordered a few new books so that will be something to look forward to soon

It's so difficult feeling stuck with it when the world is so fast paced these days and wishing that I could just be 'normal' whatever that is! It's taken a long time to come to terms with my body's limitations.

Hopefully we can all help each other a little with the every day trials and tribulations of this condition

 

[sunkacola]

@Chronicrxx , remember to give yourself tons of credit for everything you get done in a day. Treat yourself as if you were a child or a puppy you were training. Every little thing you get done, tell yourself what a good job you did.

At first, it feels really silly to do that, because we are not children or puppies! But after a while you get used to it and honestly it helps. These days I am so used to doing that that it no longer seems the least bit silly to me to tell myself something like: "Well, I worked for half an hour on that new area in the yard today, and I did laundry and cleaned the floor, and that's a lot. So, good for me." Or, "Well, I got laundry done today and that's all I could do, but I did that, so good for me!"

For me, this helps me not to feel that stuck feeling you have, because you're really not stuck. You are just having to live differently, more slowly, but there can still be forward motion, progress. I remind myself that even if I were to move one pebble a day, a pile of rocks the size of a house could still get moved, given enough time.

 

[Chronicrxx]

That's a really good way of looking at it

I am starting to give myself some praise for accomplishing things and like you say it will take time to get used to doing that

I do have a habit of comparing myself to others and feeling like a failure when I see other people doing normal everyday things with ease. Although I do have to remind myself that every one has their struggles.

However today has been a bad pain day and I've still managed to get out of bed and do a few things so it's more than I thought I'd be able to do the moment I woke up

Thank you for the kind words and advice, I'm glad I found the forum and can talk and share with others

 

[Auriel]

Hi Chronicr, welcome to our forum , yes it's really sad when people in the medical field don't take it seriously (amd even see it as imaginary!) But it can be really painful, debilitating, and life changing (cause and effect so on) I know of someone who's only given paracetamol (I would never be able to manage on that!, it would be like taking nothing!) I take gabapentin (only thing that helps with mine, though not on bad flaire days/weeks) It can be VERY painful, If they had it too (though I don't wish it) they'd understand what it's like, it's VERY painful (and if you've got chronic fatigue with it it's just double) I was offered counselling but they wouldn't understand (how could they?) I've had to try to accept what I can do now (how much I can manage and how often and not be so mean to myself for not being able to do everything I want?, also helps me to remember everyone's lives are all different when I start to feel a bit jealous when I see people doing all the things I want to do too)

 

[Chronicrxx]

Hi Auriel, Thank you for the reply and kind words

It's taken a good few years and numerous tests and different gps to get to the fibro diagnosis - it's good to finally have a diagnosis but at the same time a double edged sword with regards to managing it, although I do find hope in the advice and kindness I've found so far on the forum

I'm at the stage where I don't know how I'd cope without the medication but I do hope to be able to manage without in the future (baby steps )

I've had a few courses of CBT therapy for my fibro and never have found it of much use yet - but it may work for others, we are all so different in the way the pain affects us and how different things benefit different people

Hopefully I can gain a few friends on here who understand just how hard it is to navigate this condition daily and hopefully we can have a few laughs along the way!

 

[Auriel]