Does the pain get any better as time ... - Fibromyalgia Acti...

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Does the pain get any better as time goes on!!

tenpen profile image
8 Replies

I sit here once again wiht the pain getting worse the doctors state that you should excerise every day how can you when you find it hard to walk up stairs let alone go walking for 20 mins. I try to keep active but I am so tired and find it hard to keep my eyes open. Take painkilers but they don't seem to work for long my doctor is not understanding and states that I have to learn to live with this. Only 12 months ago I could run and keep going for hours and hours I am only 52 and feel like 92. I managed over a team of 28 at work now can't manage to make a cup of tea. My family try to understand but find it hard and still expect me to be the same I find it hard to keep the mask on and keep the tears from falling. I keep forgetting things where I put things drives me mad! Sorry to go on but i feel lost and lonely sitting here on my own .

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tenpen profile image
tenpen
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8 Replies
LindseyMid profile image
LindseyMid

I hate it when people are told that! Why you should just learn to live with it, other than that would make your GP's life easier?! Fibro can be managed but you need to fight for decent treatment.

These blog articles may help:

Becoming an Expert Patient - article 1

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Becoming an Expert Patient - article 3: Dealing with Doctors

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Becoming an Expert Patient - article 4: Medications & staying in control

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Becoming an Expert Patient - article 5: Listening to your body

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I saw one gp who advised I exercise, bit of a joke when I can barely walk, do these idiots have any idea how bad things get, any movement I make causes severe pain, any walking sees me in pain all night so much so I cant sleep. Ive raised 5 kids, never claimed benefits, I was a community carer on call 24/7 I walked and walked and walked, Im 54 and my lifes in ruins, oh Im given pill after pill but nothing works, I saw a rhuemmy who dx me and then discharged me, as this thing is for life and there nothing more they can do.

Do people honestly think we d choose this none existence, I sure as hell dont want it.like you Im lost and lonely,I try so hard to stay strong, but to be honest Im sh1t scared, over the last yr Im getting worse,

Ive been given a wheelchair, and I feel sick at the thought of using it, Im still not ill enough for dla which is a bloody joke, Im so tired of fighting, but what choose have I got, I know how deperate you feel for some relief, I hope to god we can get it

in reply to

I fought long and hard against using a wheelchair felt embarrassed and useless not mention being a burden. i am not a small person and that also had a bearing.I now have no choice because i can hardly walk to the bathroom as i am in heart failure as well. so I do not go out at all if I can help it. am becoming a hermit. I have a carer/friend who has persuaded me to move to her twon in hatfield so that no ne knows me there and says I can start again in a whellchair without thinking people are whispering and staring.. try to use wheelchair bfore you turn into me a bitter twistedold lady who is in a world of pain and isolation. petal

my new gp asked how many pain points you needed for a diognoses, she should know, she s lost and doesnt know what meds to give me, she has to ask another gp,

my gp just put this lady cannot walk at all or use her arms for anything and as her doctor i am officailly stating she is very disabled and will only get worse at time goes on. it did the trick but at the mo they are refusing all claims at first so if that happens dont give up re try asking for another assessment its the way the govt are saving money for dub things like the olympics and cable cars etc. petal

Hello

I don't think the pain gets better, I think you learn to

Live with it and get used to it.

Some of the medication does help a bit, it's being so

Very tired that I can't get used to and I think that's the

Same with most people. Unless you are having a flare

And that's some thing that I dont think any one can

Put up with.

Its hard to do much at all, but a walk is some times good

As it doe s. seem to help with the stiffness.

I think you have. To find your own levels as every one

Is so differient

SuzySparkle profile image
SuzySparkle

Hi, I can empathise with you about your pain. I do have a pain specialist at the neurology hospital involved - in my experience medication has a limited role. It can only help to some extent, and there is a definite need to adjust your thoughts about being completely pain free. I have been attending a wellness clinic where they use chiropractic techniques to 'adjust' your spine and release the pressures on the nerve supply. I was not sure that it would help, but I can definitely say I am feeling much improved. I think it is worth looking at alternative therapies - as the NHS has a very limited proactive facility. Long term care as is needed for us with fibro is just not widely available or very limited on the NHS. I have read up on the expert patient stuff and found it very useful to take control of my own issues. I have generally improved since my diagnosis - even though I thought it would never change. Counselling is also very helpful. I hope that things do improve for you. :-)

irishlady76 profile image
irishlady76

I sympathise with you my specialist and rhumatologist have both said there is no more they can do for me just good pain control well I think I rattle with the amount of pills I take but still have severe pain my gp doesnt know what else to do I have days where I just dont want to move and laying in bed seems a better option but I force myself up and try to do things but cant do much it does make you depressed. I have had this for 20 years and its hard going but we have to try dont we I ma in process of renewing my DLA it took me 3 years to get it and they now a year later want me to renew/reapply again its hard going and there sseems no help for us with fibro does there but chin up things could get better they might find a cure fingers crossed eh xxxx soft hugs xxx

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