I need help/support

[hope23]

Hi all I am new here. I am 23 years old and have lived with pain and exhaustion for as long as I can remember I suppose it became more noticeable in my late teens. I am currently in the process of being diagnosed with fibromyalgia and potentially endometriosis. As well as this I am also hypermobile. To put it bluntly I am not coping and am drowning in my symptoms it's like a traveling circus of pain around my body paired with debilitating exhaustion. I guess what made me decide to join is today was a bad day I just about fell asleep driving home I'm exhausted constantly and on the verge of sleep always. I have a fiancé who loves me to bits but he doesn't understand to him when I say I'm tired he thinks just a tad tired after a hard days work he doesn't understand this bone weary inescapable exhaustion. My doctor although trying to be helpful kinda sucks. His catchphrase seems to be "it's not that I disbelieve you when you say your in pain your just so mobile" I'm sitting there like I'm hypermobile you idiot!! He doesn't seem to understand that I'm constantly in pain which is exhausting and depressing. I'm trying not to be a cranky cow but the reality is I'm so exhausted I just don't have it in me to be nice at the moment my left hip/leg/back is the worst at the moment I can walk but my steps are very short otherwise it all but collapses under me. I feel so helpless in this in between stage of this is what it might be but we aren't sure. I feel like I can't make changes to my life when I still don't know for sure I mean in my head I know but is that enough?
I need help and I need to feel like I am making steps to cope with this pain/illness any ideas and words or wisdom I need that right now.

 

[vickythecat]

First of all welcome to the forum. You can be assured that you are among very kind, very understanding people, so share all your dilemma's and vent whenever you feel like it.

Chronic illness - especially an invisible one like fibromyalgia - is very hard to deal with it, mainly also because it is such a lonesome illness. But I think you have to see it as a process. Any process takes times and it comes with ups and downs. Getting the diagnosis and finding the right doctor or your doctor to take your complaints seriously is the first big hurdle in the way. Along with this, it is the people that we love....it basically takes a long time for everyone to understand, accept and live with the new reality.

You are in the process of being diagnosed, so it is key to communicate real well with your doctor. Keep a pain/fatigue diary, write down the things that are seriously affected by these symptoms, try to look for patterns - when do you feel the worst? do you feel tired upon waking up, or is it with cold weather/hot weather? This is also very important for you to learn what situations can be a trigger and to learn your new limits in life. Once a diagnosis is made, you can hopefully find the right medication and therapy for your body and mind.

In the meantime, you really need to take real good care of yourself - which obviously involves eating well, moving as much as possible, doing breathing/relaxation exercises, finding things you enjoy and doing those as often as possible. I find it important to find joy in the smallest things in life - a nice cup of tea, a new book, a new TV show/film, discovering new musicians, a walk in the park, watching the world go by waiting at the bus shelter etc.

Take care

 

[hope23]

Thank you!! I guess the thing for me is not feeling like I'm crazy and having people to talk to is a huge help with that I will definitely start keeping a diary I hadn't thought of that before.

 

[diamond]

Welcome to the forum dont be so hard on yourself chronic pain can make us cranky and doctors can be so patronizing and im sure if they lived in our bodies for a week would have a whole new perspective and compassion for us.

There is lots of information and videos on the internet that might explain the level of pain and fatigue to your fiance,....there is one on this forum and lots on utube...maybe a little exposure might help him understand you are not a tad tired.

Stay here and get support and understanding from this great community of fellow sufferers.

 

[hope23]

Has anybody had issues with pain medication not working? Saturday was a real bad day I took 2 panadol 2 15mg codeine and a nurofen at 1030 in the morning waited and got no relief like none!! 230 took a 50mg tramadol waited an hour and still nothing what the hell!! Painkillers are supposed to do something!!

 

[medicmurphy]

hope23, in my experience, analgesics never take my pain away. The most I can hope for is for the 'edge' to be taken off.

 

[Tipnatee N]

Go back on forum form and scroll down to "Help and inspiration". Then look for th post " video on how to explain fibromyalgia to family&friends"

Then show the video to whoever you wish to explain your symptoms of fibromyalgia to. I could never explain fibro any better than that.

 

[diamond]

i get almost no relief either....its hell when your fibro gets severe so my heart goes out to you x