How is it even possible

All your fibromyalgia experiences, questions and answers.

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How is it even possible

Postby Butterfly8588 » Fri Sep 05, 2014 1:12 am

Hi everyone,
I'm sorry I always seem to be on here moaning but I'm really struggling at the moment, I'm really hurting and I hate it. After 5 years you'd think you would get used to it but sometimes it feels impossible. I'm sat up in bed and I hurt in so many places I just don't know how it's even possible.

Last Thursday I was sat down and I turned at the waist and felt the most awful pain in my back, on the far left just above my bum, it was a bit sore after but not to bad. Since then the pain has gone all across my back along the knicker line and all the way up to my mid shoulder blades. Sometimes its not to bad and sometimes its truly awful, with firey pains shooting up my spine. Since then my fibro seems to have taken on a life of its own and I've been having more pains and worse pains.

Even before it though I've been having pains in my fingers and hands for days on end and I'm so tired of it. I can't get comfortable in bed sometimes cos even the weight of the quilt on my legs hurts.

Why are we put through this? It's not fair. I keep thinking I'm only 26, had it for 5 years and hopefully got another 50 years in me yet. How do you live with that idea? Most days I try to only think of the here and now but occasionally it creeps up on me and it frightens me to death to think how I'm going to be in another 10 years.

Anyway sorry to moan again, I just needed to speak to someone who understands.

Gentle hugs xxx
Last edited by FluppyPuffy on Fri Sep 05, 2014 11:02 am, edited 1 time in total.
Reason: Made paragraphs clearer for easier reading.
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Re: How is it even possible

Postby elliemay4 » Fri Sep 05, 2014 4:08 am

Hi there, I feel exactly the same. Have constant pain, morphine not working, stuck in bed most days and use electric wheelchair when I can get up. Tried to think positive and got myself a Motability car with a hoist for my chair. But now the fibro is attacking my arms, elbows and hands and I'm finding it difficult to drive. I'm also finding the drop in my money of £200 difficult to adjust to.

I have had this cruel illness for 13 yrs and it has robbed me of my career as head of department teaching in a secondary school. I am a lone parent and have two boys who are 23 and 24 . The oldest has moved 200 miles away and my youngest who lives at home with me is moving out next month and is moving 15 miles away from me. I hardly see my older one and know that when my youngest moves out I will hardly see him. They have got girlfriends and as they keep telling me they have their own lives to lead, which I find very cruel when I need their help. They find little time to help me around the house. It took me three months to get my son who lives at home to mow my lawn.

I have carers three times a day, my mum is 76 and in poor health and I have one friend who has stuck by me but now only visits me once every three months, even though she only lives around the corner.

I suppose what I am saying is that I have no quality of life, the GP doesn't want to know, the rheumatologist couldn't help me, the pain clinic discharged me because they could do no more, the Physio only gave me one session and discharged me with same advice as others, so where does that leave me? I do know that I am not suffering like this for the next twenty odd years. I cannot put up with the pain, insomnia and all the rest of the symptoms that are ongoing day after day.
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Re: How is it even possible

Postby Librarychick » Fri Sep 05, 2014 6:31 am

Hi sweet. I had the same problem with he weight if the quilt until we ought a silk one. It's about £150 for a king size but it's so light you don't know it's on you, such a good investment for me.
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Re: How is it even possible

Postby Garyl » Fri Sep 05, 2014 8:25 am

sleep was rare to me until i invested in some grey compressions gloves from great ideas via amazon, the hand pain is 90% less now and i am happy for once great investment
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Re: How is it even possible

Postby migrembe » Fri Sep 05, 2014 9:31 am

Anyone who has fibro should learn to meditate. Although i have meditated for years on and off i have found that since i began again in January the pain and fatigue or not necessarily less but i am able to cope with them better. I know you are saying how can sitting or laying still possibly help but it all about feeling your body and allowing your mind to accept it. I still get days when i hardly get out of bed and when i do i shuffle bedroom to bathroom and back, but living on my own i have to take care of myself. Sometimes i think we get it into our heads that if we can 'do something' we should be doing it for someone else, but why don't you do something for yourself and besides you have tried everything else and nothing worked so far.

I am teaching very basic meditation on my blog. Just search under 'meditation'.

And butterfly you are not moaning you are just stating it has it is! :hugs:

And i sleep better when i meditate, not every night but on a good night i can sleep 8 hours and it's normally my noisy neighbours that wake me up grrrr!!

Beverley x
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Re: How is it even possible

Postby Theresa34 » Fri Sep 05, 2014 9:39 am

Butterfly, I like to think that we are one of the strongest people there are in this world. I know we dont feel strong, but we are. We are in pain and or fatigued all the time, but we're still here, still moving forward. What helps me cope (most of the time anyway) is taking one day at a time. At the most a week at a time. Dont think of the future, live in the now. It really does help. Also focus on the things that you CAN do rather than what you CANT do. Its humbling to see people and especially kids who have life threatening illness and how they still carry on with a smile. DIYSOS for example last night on BBC one. If that little boy can carry on, so can I. My father has terminal cancer and he's still fighting with a smile on his face. Most people would have given up. He gives me the strength to carry on.

I know the pain you're going through. We all do. I know how horrible it is. I've had the shooting pains in my back and cried because my back would spasm whenever it fancied. I totally empathise with you. Just try and focus on what you can do for yourself. Know that this pain will be lifted if only slightly, it will go. Focus your energy on getting better (if you know what I mean). Have a cry if you need to. Curse if you need to. Telly this effing condition to fe off if you need to :-D Thinking of you x

Gentle hugs to you xxx
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Re: How is it even possible

Postby Butterfly8588 » Fri Sep 05, 2014 7:14 pm

Hi everyone,

Thank you for your lovely replies, please forgive me that was a lot of info to take in so apologies if I dont address everything said. I'm sorry you're all suffering so badly from this to, its a horrendous thing to get and I do try to think of it day by day but sometimes it feels impossible. I feel like I'm climbing a mountain and just when I'm gaining a foothold I slip back down to the bottom and have to start over. Maybe that's why we're in so much pain and so tired!

I'm really sorry to near about your dads cancer, its a truly awful disease and I dont know how people manage. I have nothing but admiration for people who can just get on with things even with such a thing hanging over them. i truly hope he defies his diagnosis and lives for many more years to come xxx

I do try to meditate in a way I suppose when I'm in pain. I just try to concentrate on breathing through it and sometimes it helps me sleep. The problem I have is I can't relax my muscles, they are constantly taut no matter what I do. Worst still is I cant switch my stupid brain off. I have literally had one line of one song go round and round in my head for over a week non stop and that's no exaggeration.

Anyway I feel slightly better today, although I've tried to take it easy so I'm hoping for a better nignt. I hope you are all as well as you can be, thank you so much for being there for me. Your replies help me more then I can say.

Gentle hugs xxx

P.S. sorry fluffypuppy I'll try to remember to double space between paragraphs from now on! Xx
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Re: How is it even possible

Postby FluppyPuffy » Fri Sep 05, 2014 7:27 pm

No need to apologise Butterfly, when you're posting the thing at the front of your mind is getting down what you want/need to say, esp when it's one of those extra emotive/sensitive times we have.

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Re: How is it even possible

Postby migrembe » Sun Sep 07, 2014 6:17 pm

Well butterfly you made me smile today - i am teaching a friend how to meditate, she also has Fibro and she said the following to me recently - I am there, doing it (meditating) and then the next minute i find myself having a three way conversation with myself -

Every night before i go to sleep i sit or lay in a meditative pose, nothing fancy and i concentrate on the breathing in and out. I do not try and stop my brain from thinking or my make my muscles relax but after practising every night and some mornings (now) i have found that there are times when my brain stop muttering and my muscles relax on their own. It's all about the breath.
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Re: How is it even possible

Postby kayhealey » Mon Sep 08, 2014 1:09 am

Hi Butterfly-

I finally figured how to usually get to sleep--- along with my sleeping pill. For the past 6 mths., I have been going to bed with my MP3 player, ear buds in my ears and my favorite singer, an Australian named Keith Urban and 88 of his songs which are all pretty mellow and comforting and soothing to me and volume turned down low. I downloaded them on Amazon. Occas. I go to bed with the tv on timer. (I know that's a no-no according to the sleep hygiene experts, but it works for me if I only do it once in awhile). But Keith Urban puts me to sleep most nights now (took me years to find something that worked). Thank you Keith! Maybe you could find some music that would soothe you to sleep. I hope so.

Gentle Hugs to all of you and hopes that tomorrow will be a better day.
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Re: How is it even possible

Postby Butterfly8588 » Mon Sep 08, 2014 4:59 am

Hi there,
Thank you for your replies. Migreme thats exactly what happens to me. One minute I'm breathing and the next I'm off, it drives me mad! I'm glad I made you smile though :-)
Kay I'm glad you've found something that works for you. I used to take tablets to help me sleep but I stopped them in the end cos I found they stopped working for me and even when they were I found the 'artificial sleep' was worse then my regular type of broken sleep. Unfortunately part of my fibro means I'm very sensitive to noise and I can't sleep with music on, I have tried it and found I was just led there listening to it!
As the time of my posting this will attest to, I'm struggling to sleep tonight and I've had to get up. My right arm is hurting and I can't get it comfortable. I'm so bored of this now I really am. I have to be up tomorrow for 8.30 to take my gran to the hairdressers, then I'm busy with my mum and then its supposed to be something for me after and I'm going to really struggle today now. Typical isn't it that the one day I do something for myself a week and I'm going to be a blimmin zombie. Wonderful xxx
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Re: How is it even possible

Postby migrembe » Mon Sep 08, 2014 10:15 am

I hope you have a good day today Butterfly, sometimes doing something is better than sitting doing nothing but you seem to have a lot of things to do today and i never book anything before 10 am.

There is a book called The Quiet - Paul Wilson which i have found useful when it comes to meditating and i what i would say is get into the habit of practising at about the same time every day - teach your body and mind a new habit. I do find moments of quiet in the madness and i sleep better too.

And if i really cannot go back to sleep at silly o'clock in the morning then i go and have a bath as hot as i can bare it, i think the heat confuses the signals to the brain and then take more pain pills and go back to bed. A young Dr once said to me, that if i am supposed to be asleep then act as if you are and leave the lights out and the technology off.

Beverley x
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Re: How is it even possible

Postby Butterfly8588 » Mon Sep 08, 2014 12:04 pm

Hi migreme,
Thank you for your reply. Believe me the appointment wasnt my idea! I was roped into taking her cos my mum couldn't. Usually I'm not with it till after midday! I try so hard to stay in bed but I just have to get up cos I'm just led there tossing and turning getting myself worked up cos I'm in pain and my darling boyfriend is snoozing quite peacefully next to me! Pain killers just dont work for me, or if they do its not for long.

Right I'm going to have to sign off cos I'm being kissed to death by my mum's sausage dog :-D xxx
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Re: How is it even possible

Postby migrembe » Mon Sep 08, 2014 8:25 pm

:dogrun1: sorry not a sausage dog but best i can do,

Beverley x
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Re: How is it even possible

Postby Tally1068 » Mon Sep 08, 2014 10:48 pm

Just to add my condolences to all who are having a rotten time at the moment. Hang in there Butterfly. (I love Keith Urban)

I'm going through one of the toughest times myself at the moment and while I would never have the guts to do anything, suicidal thoughts are most definitely there. Normally I'm an upbeat, happy sort of person but bad asthma which is giving me up to 20 minutes nap at a time and panic attacks along with the constant pain and uselessness of my life have really got me so low. :roll:

I cant use my arms, slow typing is about my limit at the moment and I'm bored, fed up and cant see the point. It helps so much that others can be vulnerable that I can join in without feeling judged.

I wish I could meditate. Throughout my life I've been to various relaxation classes, psychiatric courses etc but every single time the end of session meditation happened. I would have massive panic and anxiety attacks. I had much worse asthma 20-50 years ago and lying down immediately brought on a worsening.

I have recently gone stone deaf in one ear so that has really made my week. :evil: What next?

Thanks for listening.
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