Fibro does it get any better

Fibro does it get any better

Hi I'm Leanne. I spent 5 years pushing my mum around in a wheel chair she had COPD and fibromyalgia . I took her every week to pain clinic to find some help with the pain.as much as I helped and supported her I couldn't really understand the pain she had every day. Then sadly 3 years ago I lost her to lung cancer it was quick we only knew a month. I'd lost my best friend il never get over losing her. Last October I hit rock bottom, then I started in pain gradually over the months it got un bearable I just plodded along each day was back and forward from doctors . In between I was looking after my dad he was in bed with a pulled muscle running a home looking after my 4 children . My doctor finally referred me to hospital I was in constant pain it was a job just getting up in the morning. My dad was getting worse he in June got told he had secondary bone cancer, so with being back and forth to Sheffield my own health getting worse I was finally diagnosed with fibromyalgia. And have tried all different pain killers, my day finally gave up the fight for cancer in September, in 3 years I'd lost both of my parents it's hard. My pain is still bad I just about get out of bed each day. My twins who r 14 help me my 2 little ones try, I'm sure my hubby thinks I'm making it up every day is a struggle even sat now my legs r hurting will it get any better , it wud just be nice to meet and talk to people who understand xx I feel all I do is moan xxxx

12 Replies

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  • So sorry with all you have gone through ... And if you feel you are moaning too much at home , which probably you aren't it just seems like it, come here and rant, A lot of us on here can pinpoint our fibro to a time of trauma , stress or a loss like you have gone through. You mention pain killers , have you been prescribed anti depressants ? They help scramble your pain receptors and actually do help with sleep for a lot of us I take an antidepressant and a low dose muscle relaxant at night and pain killers in the day as needed. Anyway welcome here if you have any questions, want to rant or join us in a laugh just post away. fibro doesn't ever go away but yes there are good patches as well as the bad.

    VG xx

  • Thanks yes I'm on duxlatine and amtripaline and recently been put on patches but not doing anything it would be nice to get out of bed with out feeling like I've done to much at the gym x

  • i hope it does!!!! for u and me. i used tio look after my dad so i can empathize how hard that is with 1 kid how hard wen u got 4, shows your strength and determination. enjoy the good days and just know that the bad days dont last either, there is great info and support on this site and only been a member since this morning! already i feel at home i found the right fibro communitysite as there are a few im glad this is the one i joined. hope u get thru this bad time, sending u huggles and blessings xxx Tink

  • Thanks hugs to u to. It's nice to talk to people who understand. I keep on working and getting thru the day even if its just for my kids, I feel so lonely without my mum or dad to go to xxx

  • I was diagnosed 20yrs ago lucky for me that I had been sent to pain clinic and a new specialist had started 'chinese' I have been on every med that exists. After so many years I have now adapted to the fact that each day is a different day. Thankfully, for me my children have fled the nest so I do not have an added problem X got to the point he would not believe how much the pain differs - so to make my life easier it was preferable for him to be an X.

    Another big problem arises when you start suffering from something else and you are not believed the doc just says it is the fibro. Got to the point I paid private with help from family had MRI done for them to find I had decease of the spine. Now I am being sent round in circles to make it look as if something is being done i.e. All the stuff I had done previously going here and their. Now I am waiting to see a neurologist to check my MRI privately again so that he can inform my doc what has to be done - on the NHS. Best part was last week saw family doctor and he is telling me it is the right leg the twat I said no its the left 4 times this was repeated then he said what if we do something with your leg [the right one lol] My response was there is nothing wrong with the leg it is the spine. Docs are told to cut down on meds to save money. Then if you have to get checked out for the DLA get told to go back to work - Which means no matter what the doctor informs them they will take no notice. Yep it is all so distressing for everyone. Hope I have not babbled on too much. I told the doc I will have to go on the game so I can pay for private. Said it in disgust - imagine I am 70yrs old lol.

    Oh just to end it do not smile or laugh you do this and you asre definitely well!!!!!!

    Hugs xoxox

  • Gosh Leanne, loss of both parents in such a short space of time is just tragic - how rotten for you.

    I've been diagnosed since July and on Duloxetine for a week .... I hope it doesn't get much worse; in an ideal world I'd like my life back; in reality I'll settle for good times now and again and necessary pain relief. I have CFS/ME as well and it is the extreme exhaustion I really struggle with.

    ((((( gentle hugs )))))

    Julie xx

  • It sounds like you've been through a really tough time Leanne. :(

    As to your question, yes, things can improve with Fibro. If you get an accurate and comprehensive diagnosis and effective treatment then you can get far better control of your symptoms. The aim with treating Fibro is to make your quality of life as good as possible - ideally so that the Fibro does not impact on your ability to have a normal life. You may not be able to climb mountains (though you might be able to!), but you shouldn't have to have out of control Fibro forever. Fibro can go into remission after effective treatment but this is sadly rare and there has not been enough research to work out why some people get there and others don't.

    The people who seem to struggle the most with Fibro, based on all I have learnt running FibroAction for 4 1/2 years, are those who have something else perpetuating the Fibro. Occasionally this is a bad personal situation, such as a very stressful job or abusive marriage. More commonly, it is another condition that is itself uncontrolled so keeps on triggering off the Fibro. That doesn't mean that some symptom control for the Fibro cannot be achieved, but it is a lot harder to improve as much. Managing the other condition - if possible - is very important.

    I hope that helps. I also hope you have a good level of support for you now to help you as you grieve.

    If you would like to meet other people with Fibro, you can look in the Directory for other members of this community in your area and Message them (always take appropriate safety precautions when contacting people on the internet though!). Or one of the Support groups on the link below might help:

    fibroaction.org/Pages/North...

    Best wishes

    Linz

  • It's not that it gets better but we get better at handling it. We learn what we can and cannot do and then push the boundaries. We learn different ways of getting in and out of cars. We try and keep up and WE forget we're ill so how do we expect our partners and family to remember.

    I think the trick is to learn your level and try to live by it and also explaining to your family and friends this is as far as you go. We get used to the pain like a very bad nagging tooth ache.

    Physio (hydro pool), tens machine and Reiki work for me but this combination won't work for everyone so you have to find what works for you. Learn as much as you can about FMS and then you'll understand what's happening to you.

    Once you know what you are able to do then you can use the SPOONS method. If you have 12 spoons daily then each day you work out what you want to do and how many SPOONS that activity is going to use that day so you can balance out what you can and can't do that day. Today I am going to the opticians, this will take up 3 of my spoons. I want to do a little embroidery on my machine this will take at least 6 spoons so today I have 3 spoons left. This means that I won't be able to go out to dinner tonight as that takes between 8 and 10 spoons but I can maybe have a drive out in the car with my husband leaving me with no spoons or I can just sit and rest. It's all about knowing yourself and your levels and it will come, I promise.

  • Thanks people I now feel im not alone

  • Thanks people I now feel im not alone

  • So sorry to hear about everything Leanne, here's a hug for you ((( hug ))) x

    You are never alone here, we are always here for you and for each other too. Any concerns you have, please pop in and we will do our best to help and support you wherever we can. Take care and please let us know how you get along.

  • Thanks everyone it's nice for all the feedback .ive had a very bad day today my whole body hurts dint feel like getting out of bed but I did had a tearful day but got thru it lets hope it's better tomoz xxx

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