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diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
It's a lovely summers day here in the UK.

I am at a complete loss as to how to fight this illness anymore. The last year has been so awful....burning pain, deep aching, stabbing pains muscle weakness head to toe almost everyday.....not an inch of me spared.

I've also got interstitial cystitis, vulvodynia, stomach cramps, tmj, migraines and facial pain to varying degrees daily.

I tried to stay up for a few hours but it got too much and here I am in bed again useless to myself and my friends and family...all of whom don't bother much anymore unless I ring them and play along with the game of acting normal and chatty with no complaining.

My partners away on a golfing holiday....I know I can't make him happy anymore because this is my life and he resents it'

Not that long ago when i said sadly from my heart about my health 'This is not what I signed up for' he replied 'It's not what I signed up for either'!!!

That hurt!

The future looks so bleak....Thanks for letting me vent.
 
Your not alone. Just know your strong! Anyone who can service this crap alone is a Queen in my eyes. For myself, I have to stop sharing my hurts with family and friends, and do alot of positive thinking. It's a choice not an action. Beleave me, I've heard it all, your a hypochondriac, you just don't want to work, Gees pay attention to your walking so you don't fall. If you would just loose weight! Stop watching those utubes, you want this for yourself......excuse meeeeee?. Wow, you watch and if you beleave in prayer, do so. Forgive those who are not aware of your illness, don't harbor resentment or anger, been there, it will only hurt YOU.
Do what you can and forget about what you cant.
What do you Love to do? Can you do it in short intervells?
For instance, My little dog is the 2nd joy of my life, so I bath her ,feed her, comb her. In return she gives me UNCONDITIONAL love. If I don't have time, or feel I'll, I drop all my other regular duties. At the end of the day, happy dog happy me. I try to baby myself and not expect it from anyone else, because I'm worth it, YOUR worth it.
You can do this! P.S. feel free to personal message me any time.
 
Thanks Moe.

If only i could follow so much of the advice i have given on this forum in the last few months...maybe its time to get myself a kitten.

My gorgeous ginger boy cats both died age 17 and 18 in the last couple of years.....i loved them so much...and you are right our pets give unconditional love.
 
I am really sorry to hear about that, but like you say, many times our own advice works great for ourselves.
 
well my other half well ex.has dumped me .i might have copd and he said he wouldn't give up smoking for me.nice ah.
Atm I'm not worried about being alone .but I'd sure like to find a good man one days.
 
sorry to hear you're having a rougher time than usual willow. :( we're in similar boats fellow warrior.

i think many of our partners feel that they didn't choose this either, but the difference is actually saying it and wanting to be sensitive to our deep grief. i'm sorry he was being such a dick.

i've had a flare for the past few weeks - burning, deeper aches, more exhaustion, my whole body just feels like it's on fire - when symptoms get worse for a long period of time, i start to get very depressed. it's so difficult to be hopeful and positive on days like this, so today i am giving myself permission to feel what i feel and express it. does anybody else have a death wish? i don't mean to be crass but it certainly is on my mind a lot. i wish that fibromyalgia was an approved condition under the Death with Dignity Act. i feel it's such a cruel joke to suffer immense pain for the rest of our lives and not have any other option but to just bare it.. usually when people feel this much pain for such a long period of time, there's either treatment and we get better or your body will soon die. but there is neither with fibro, there is no end in sight except a long life with immense pain. it's horrifying. sometimes i think about getting addicted to pain killers, that seems to be a way out for some folks (ex. Prince) planned or unplanned. i just don't know what to do at times like this when there seems to be no end in sight. i get so dark and angry it makes me not like who i am but i think it's better to get it out than to repress it. i need a good cry.
 
I think we need to be warriors indeed because we need to fight this disease like it's a war.
 
Forgetmenot...sorry about your guy...he doesn't deserve you. You fight everyday ....look after your daughter...try diff meds...he is the weak one!

You must be a strong lady..happy on your own...I feel I have lost that inner strength since my fibro getting so bad seems to have stolen the last of the real me.

Nice to hear from you dancingwithfibro.....you seem to be suffering badly too...I am so sorry and send you a virtual hug and also much appreciation for simply replying and empathizing.

I agree with so much that you have written......this illness is such a life sentence and for those of us who have it at the furthest end of severity your mind wonders where it should never have to looking for ways out.

In fact the emotional toll it takes after years is quite unquantifiable ...I don't now how the human spirit is meant to survive in the face of such suffering....like you say usually there is some effective treatments for an illness or you are on your way out when such pain and weakness is present.

I agree our partners feel this is not what they signed up for but my partner seems to lack the instinct to keep these thoughts to himself and has over the years hurt me indirectly with passive /aggressive ways of showing disapproval...like the silent treatment or tuts and sighs.

I know that in times of difficulty for any of my friends and family i know instinctively what to say to support and comfort...and definitely what NOT to say!
 
willow i'm so sorry he's having such a hard time dealing with this condition. his lack of compassion and immature actions does not help. it makes it so much harder. has he considered seeing a counselor/therapist/support group to help him manage this new life better? i'm trying to find a support group myself to take my boyfriend with me but things are very limited where i live. so limited there's only one rheumatologist on the entire island and she doesn't even take insurance. pft.

until i got this condition and living with it for a few years, i now know what to say and not to say for those grieving a loss. any loss. a parent. a child. a partner. our health. things like "it'll get better" or "everything happens for a reason" or "God only gives you what you can handle"(someone actually said this to a friend who lost her child) - IS SUCH A CROCK OF BULL because you don't know what's going to happen or why it happened. they say crap to be supportive, but their need to say something can be so offensive. but i have to admit, before this condition i would say something idiotic like this too thinking i'm helping. so i try to remember this and have patience when a friend or family member says something offensive, but it's oh so hard bc i'm already hanging on by a thread. ahhh end of rant. =)

hang in there willow and thank you for allowing me to vent with you!! even tho i don't want to hear how hard it's on you it's incredibly reassuring to know that someone else is going through it too and GETS it.
 
Thank you again dancingwithfibro for connecting and venting with me.x
 
I am sorry that your partner is not being supportive, I hope that changes with time.
 
I so wish I had got on the forum this weekend and saw this. I have more then two cents to give but I think I'll refrain for now. Moe is spot on and I think that is good for now. As sometimes we really do just need to complain and vent and don't need my lengthy advice and perspective.

hold on tight Willow, this to shall pass.
When is the last time you change up your meds or been checked to make sure something new has developed?
 
hi my name is Chris and I am new here but I had to start somewhere and you all seem like a very supportive group.
my story is a long one and best saved for another day so here is the short version. I was diagnosed with osteoarthritis in both knees and will need complete knee replacements with in the year then in May of this year I was told I have fm. my pain is so high and I am so tired I take pain meds but that really doesn't help the shooting nerve pain, I not sure how I make it to work everyday (I really cant remember) I don't sleep all night anymore. how do you know when is enough, enough I am single have a room mate but no help to pay my bills I don't even know where to get the help for my fm, my doctor seems a bit lost. help please point me in some direction before I loose my job or my home.
thank you for letting me rant.
 
HI Chrisg and welcome. So sorry you are suffering too.

You really need a refferal to a good rheumatologist...some one who specializes in fibromyalgia.

I know you have to rely on people that your insurance will pay for but hopefully your doctor at least knows of someone who can help.

There are many meds and therapies that do help reduce pain and help with mobility for lots of people with fibro.

Mine hasn't always been this bad so don't be dispondant.

Try repeating your story under the main discussion section as more people will see it there and you will get lots of support and advice about dietrya changes...supplements...epsom baths, pacing activity.

Also if you read old posts there is already a wealth of information on the site.

A good book i can recommend too is FIRST YEAR FIBROMYALGIA bu Claudia Marek....its full of help from a suffer who is also in the medical profession...and helped me a lot to understand fibro and how to help myself....and i did pretty well for seven years before a series of emotional stresses turned the volume up on my particular battle with this horrible illness.

Welcome and take care.
 
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