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Fibromyalgia Action UK
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My road to fibromyalgia

Hi and my heart goes out to all who suffer pain. Depression crept in after I had my fist daughter then fell ill in late 2003 and was diagnosed with breast cancer in 2006, followed by chemo in2007 which resulted in blood poisoning ( only just escaping death) followed by radiotherapy in 2008, then a double mastectomy and a painful reconstruction in 2008 which took serval years to complete by this time 2011 my muscles had deteriorated so badly I spent years trying to build them back up, I had fits and seizer and collapsed and stop breathing in 2013 after my dad died, then I had a car accident and cracked open my skull ( this prevented brain from swelling) so I survived, 2014, I was taking codine for most of the duration and many other pills that made me sick, then in 2015 fibromyalgia ( not diagnosed till 2018) the only thing I'm trying to do is get to a hydro pool and try this one last thing. . After 15 years I feel like I have no more puff left in me,

Some days I don't have then energy to speak

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Hi Osirus,

You have had such a dreadful time for what must seem like your whole life. We who are gathered here, brought together by this evil condition, share your pain. You, perhaps, have had even more to contend with than most of us, but living with pain, which often seems unbearable, unites us all. There seems to be less and less joy to be had in life. I am not a religious person at all! But the notion that we all have our cross to bear, seems to resonate somewhat.

It's 4.00pm and I'm sitting on the bed, not yet washed or dressed, wondering if I could manage to throw on some clothes and go out. 'Going out' means getting in the car (parked right outside the door) - Sainsbury's - trolley park (in as few steps as possible), leaning heavily on the trolley and walking round aimlessly (for daily exercise, if I can possibly manage it.) Fortunately, in this nice weather and time of year, there is more time to make this decision! Can I perhaps bite the bullet and 'jump'up? I'll let you know!

Lots of love and good wishes to you.

There is little I can say but to remind you that you are not alone, although it sometimes feels that way.

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Thanks Marty,

Yes I often wonder is my cross was made in the iron age! I have been a fighter through all the past stuff, but this fibro is just taken the get up and go from me

I started using one of those scooters in the grocery store, I was bumping into everything and everyone, not for me. So I started online shopping, seems to be working.

this is my first time on anything like this, I don't even do facebook, I have always been a very private person. I do feel there is still things i can try, but all this experimental stuff with different foods and different types of exercise, countless doctors and hospital appointments, pills and potions, sometimes feeling that I let my family down, I keep moaning and groaning im totally sick of being sick, and sadly my doctor is not listening to me, he actually laughed in my face when I told him I had fibromyalgia, I was horrified! my daughter (21) was with me, we both looked at each other with despair. He had not even read my letter that he received 4 weeks prior, he soon realised his mistake and has now put me forward for physio, when ? hopefully not too far away

I hope you managed to get up! I still try and take my daughter to work in the morning as an incentive but she has a bus pass if I can't make it.

take care

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Hi Osirus,

How are you doing today?

I did manage to get out the other day - eventually!

Yesterday was an almost identical'Groundhog' day! Sitting on the bed until about 3.30pm and then a sudden and determined spurt of energy, quick shower and out! Can you guess where I went? You've got it - Sainsbury's!

Today is going exactly the same way (almost spooky!) Each day I try to get moving sooner but rarely manage it!

Today I've actually showered a couple of hours ago, but still find myself back in the same position!

My left hip is crippling me today (osteoarthritis) which adds to the disincentive to walk, but I really need to get my newspaper for the week's TV! programmes!

Take care!

Love

Marty.πŸ•“!!!

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Good that your trying, I have decided to come to the coast for a few weeks and already the quietness has made a huge difference, so when I get home I am changing bedrooms. No more train noise for me. Vibrations truly affect my pain, take care and keep trying x

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I'm so sorry, you have had such a bad time. I truly hope you get your hydro pool.

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ty, for your kind words. I will find a hot spring if it comes to it. shame to think that its money that once again gets in the way of healing. I am learning to meditate so there is hope yet and now I have found this site who knows.

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Ohhhh Osirus 😳

My heart β™₯️ goes out to you ...you have really been through the trials and tribulations my dear. πŸŒΈπŸŒΏπŸ¦‹πŸŒΈπŸŒΏπŸ¦‹πŸŒΈπŸŒΏ

My deepest sympathy for your losses and there are so many.

πŸ¦‹πŸ’•πŸ¦‹πŸ’•πŸ¦‹πŸ’•πŸ¦‹πŸ’•

Ohhhh I feel sooo badly for you.

I hope and pray πŸ™ that you will make it to the hydro pool and that you will finally get the relief you so deserve sweetie. Please take care and best wishes. Sending you gentle gentle hugs πŸ€— love πŸ’— and kisses 😘.

πŸŒΈπŸŒΏπŸ¦‹ πŸ€—πŸ’•πŸ˜˜

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I good with most of it most of the time, but now this fibromyalgia, I just had enough and now I have to fight to get a treatment, it just reminds me of fighting to get cancer treatment, BUT

I just joined this site today and have been truly inspired by all the wonderful and heart felt responses, just these few hours reading and chatting has opened a New Door with a shimmer of light reaching out to me. I have already been able to respond to others, this has made me feel useful. It has also inspired me to paint a picture. Now that's a feeling I have not had for a while.

What a difference a day makes.

Thank you for your support

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Soooo very glad you’re feeling a little bit better.

There are so many wonderful people here. You will make tut friends on here as well.

Blessings and well wishes.

πŸ˜ŠπŸŒΈπŸŒΏπŸ¦‹πŸ€—πŸ’•πŸ˜˜

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Hi Osiris,

You poor thing, what an awful time you’ve had, I really hope things start to improve for you, I know suffering constant pain is horrible, sending you big hugs πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—πŸ€—NanaT

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Words seem meaningless after reading what you’ve been through so I’m just going to send you the biggest gentlest hug πŸ€—β€οΈ

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I am so very sorry to hear of everything you have been through its brought tears to my eyes but you are strong after your cancer treatment that's a hard burden to bear on its own and you can do this there will be lots of sympathy from this site people know what you are going through will listen and give good advice on what works for them when your in pain you will try anything to ease it . GPS in this country don't know enough and don't have sympathy there's no money to spare on research so most of the sites seem to be American I was told they have the money to throw at it unlike NHS my old Gp doesn't believe told me to go away stop doing my own research put up with my symptoms I had back neck injury and osteoarthritis end of story . Had to move home due to lots of reasons found a new gp who is really helpful I have tried mindfulness I know it's hippie dippie but it worked for me bought CDs she's the course finished but that lady helped and I am sure she saved my life I did a chair yoga course and I'm now doing aqua can't do as much as the other but I'm trying and I'm out of the house I do go with my neighbor whose a nurse as well and has had bilateral mastectomy last year. Yesterday was bad when I eventually dragged myself out of pool I couldn't dress there was no cubicles left ended up in communal changing room where a lovely lady helped me my neighbor diddnt know where I had gone lol but this lovely lady turned out to be a nurse who works with my son on the same unit where I work ed untill my back injury lol . There are lots to try and lots of lovely people out there who will help as long as we ask I was told at a pain clinic that the people we do ask for help feel better as well cos they feel we have made a difference in their day . Be strong and sending gentle hugs xxxxx you got this love carol

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Hi Osirus

Your are a survivor, so hold onto that part of you. You have a lovely daughter, and despite your own misfortune, you are a caring Mother, hold on to that too.

Don't let ill health define you. Ill health is very challenging. I do not need to remind you, of that. However, sites like HU, we get to realise, just how much suffering people endure. Many people learn a lot about life and themselves, in the process.

I became acutely ill, 4 years ago. I am recovering, day by day. I will not tell you of my ill health journey. Now is not the time. Though, I will agree, GP can be experienced as a real let down at times. My GP did not listen to me either. Thus, I began to lose confidence in myself, my body, mind, and spirit...

However, coming to HU and realising we each have to fight our own corner (despite feeling so ill), helped me to muster what dregs of strength I had.

From what I read, of your (awful), ill health experiences, I feel that whilst you are struggling, with each ill health setback, it is your overall experience of being a patient that is leaving you sad? Anxious about a future? Hurt about a past? Isolated, etc...... (I may be wrong. Forgive me, if this is so).

I say this, because I reasoned, (for myself), I wasn't coping (accepting), being a patient; needing to depend on medics.

My previous GP, did not take my symptoms seriously (I got myself diagnosed after seeing medics in London, some private), I had become emotionally (may be mentally), definitely spiritually, depleted.

I stopped trusting, that I would get care from medics, as she didn't understand how ill I was. She refused blood tests (guidelines said yearly), she refused referral. I lost faith and trust, in NHS, and in myself. I was very confused. I eventually, explained this to my GP and requested a refer for counselling. I was told there was an 18 month waiting list! She suggested I go private.

I am on a meagre pension, but eventually, I decided I knew when I was ill when I was ill. I was correct, despite GP (yes, laughing at me too), dismissing my concerns. So, I now knew, I needed to talk about the ill health experience, with a skilled caring professional. I searched the internet, found a very well qualified (and local), Dr of psychology.

Having weekly sessions, at a price I found hard to pay, was worth everything I own. If I had to go without food, it would have been worth it.

I managed to safely offload, all of the sadness, anger, anxiety, despair, etc.... that my acute ill health/lack of good care provision, (my own response?), had created.

In the process, I even managed to offload my previous GP, and some family members, and friends that were not able/willing to support me, at my time of need.

Long essay for you, I know. However, my intention is to let you know, I relate to many of your stored feelings and thoughts. I found, through talking everything out, with honesty, to a skilled practitioner, counselling helped me find my way back.

Please, know that what you feel, so many of us, have (and do), feel. HU members will always give support, understanding and renewed confidence.

I urge you to think an out asking your GP for counselling, to help you clear some of the clutter ill health experience has left within you.

Good luck and best wishes.

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Can i start by saying i think you are true hero to have gotton through all the awful things life has thrown at you. I cant begin to imagine what it must have been like for you and your family. However i can fully understand the dramatic effect fibromyalgia has on you and your life being a fellow sufferer. Like you i dont use any other social media and am also quite new to this forum but have already found the wonderful people on here a great support. I was referred to physio last year and given hydro therapy via them. I found it helpful but exhausting. Unfortunately you are only given about 6 sessions on nhs then you have to pay (i couldnt afford this) so fingers crossed when you see physio they will give you hydro. Please know we are all on here to help and support each other the best we can. Sometimes just knowing others understand what your going through is a big comfort. Take care of yourself and rest lots. Sending you gentle hugs. Xxx

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My heart aches for you! You have been through the mill..The fact that you are still here proves you must be a fighter. I hope you can find something that brings you relief.

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O M GOSH, my heart goes out to you. The punishment that some of us have to endure. I don't understand . Water is good for relief, please do try.

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Yes my thoughts too! a Hydropool, we need more of them and free access,

i've started meditation and bought myself a star chart, so i can keep a check on any patterns forming,

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