Trying to connect with outside world - Fibromyalgia Acti...

Fibromyalgia Action UK

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Trying to connect with outside world

kezx69 profile image
9 Replies

Hi its been a yr I think since I wrote a post and it's been nearly 2 yrs since my world turned upside down I wasn't coping with my fibro and other health problems but 2 yrs ago I was in that much pain all over I didn't know where it hurt then my back started then sciatica which trapped my sciatic nerve in my left leg for about 2 weeks the doc said I was on a lot painkillers they couldn't offer anything more I couldn't move I had no feeling or sensation of needing a wee I slowly got moving a little when 3 weeks later I had just been for a wee and it happened again I couldn't get down the stairs I was in a mess I'm lucky my husband is my carer and got me down on his back because of what the doc had said before I thought no point ringing them so I suffered the pain for 3 weeks by this point I couldn't cope with the pain I couldn't move eat or sleep I couldn't pass urine at all and I have a bowl problem I had not been in such a long time I am embarrassed to say to say how long I decided to go to see a chiropractor I couldn't walk and had a lot of help to get me there but I got there thinking he might be able to help within 5 mins of being there he did a few things and passed me his telephone and said I've called for a ambulance they need your details you need to be in hospital I was mortified I told him I had stuck the pain for that long and my gp didn't seem to be to bothered was he sure I was admitted to a&e I was still in hospital 9 days later I signed out as they was moving me to another ward I insisted I couldn't cope in there anymore and could rest at home and come in for rehabilitation from home which is what we did the test result showed I have problems with 3 disc's which 1 disc had traped the sciatic nerve for quite a time I could use my left leg my bowl condition had become life threating and on top of that I had had a fibromialgia flare up .

it took me months to walk just a few steps with 2 crutches I couldn't make it across the living room its been 2 yrs now I still have my crutches I also have 2 sticks I still have big mobility problems as well as other health issues I have learned to take every day as it comes and don't look to far in front I have had to let my family down a lot either because I can't go out or I can't eat I don't go to family events anymore and I found when it really counted I have no friends that was a eye opener so as the title looking to reconnect with the outside world thankyou for reading my rant if there is anyone thats had a similar experience be interested in your story

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kezx69
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9 Replies
Royalspec01 profile image
Royalspec01

Hey glad to hear your rant and I promise you your not alone with this we all learn to cope as time goes. Really hope to hear you more up here its a fibro community and everyone has something in common and for the mad ones they have fun too.

you might even get to know fen with his colourful family god bless xx

kezx69 profile image
kezx69 in reply to Royalspec01

Thankyou for your reply it's very much appreciated being ill & in pain is very lonely & when you do need your so called friends they not there I know I've isolated my self but sometimes it's self preservation thanks again

Naylee profile image
Naylee

Hi kezx69, I'm sorry to hear how much you have been through. The doctors make me mad, you had to suffer all that time. They make us feel very small and as if we are wasting there time. I wish you some good luck in the future and some relief from your pain. You have been very strong to deal with it all. Take care xx

Furry profile image
Furry

Hi kezx69

It's shocking what you have been through, I'm so glad things have improved slightly and you have some mobility back. Hope things continue to get better for you. Take care. X

TheAuthor profile image
TheAuthor

Hi kezx69

I have read your post with so much pain and sorrow for what you have endured, and my heart and thoughts go out to you and your husband. It must have been awful for your to endure such pain and misery? And I genuinely hope that you can find some resolution and relief to your issues.

I would definitely find myself another GP? Or another GP surgery and get all the help that you desire and deserve. I want to wish you all the best of luck and we are always here if you ever want to use a post to talk to us.

All my hopes and dreams for you

Ken x

TIDDLYF profile image
TIDDLYF

Hi, you poor thing. I have many health problems sometimes really extreme pain and mobility problems. I was diagnosed with fibro about 4 years ago and felt that once I knew what it was at least now I could start to get better - WRONG. It just goes on each day different but the one constant is pain. The levels differ but it is always there.

I did the same as you, Can't say a definite yes to anything in case you can't make it. People get fed up and stop asking, you reach for the phone and realise that there is no one to phone! Where are all your friends? I feel particularly let down by a few I had always been there for. (New babies, break ups etc.) It never entered my head how much I had helped them until they were nowhere to be seen when I needed help.

Instead of feeling bitter I have just refocused on those who are about. My family, extended family and a few true friends.

Start by inviting those few people round one night for a drink and nibbles (just things you open and put on a plate/bowl). Hey, you had a party!

Do you know anybody who 'sells' anything like Avon, Tupperware etc. Could they use your house and guests (you may even get a %). This way you may meet new people.

Do you have a support group anywhere near you? There you would meet people who would understand what you have been through. I don't have a group near me, at one point I toyed with setting one up but felt it a little bit daunting. Maybe you OH could help?

I really hope you can find your way out of this rut you have fallen into. Positive thoughts/mood can help enormously. I recently had my brother and two sisters visit on my birthday. We spent the whole afternoon chatting, laughing, reminiscing and just catching up. When they left, I went to get my night time tablets and realised I had missed my evening ones. The power of laughter! If I had been sat on my own in pain, I would have been waiting for the time for my next dose.

Please for your own sake, whatever your interests TRY to find somewhere to go be it bingo, knitting club, book club anywhere. Just try to be a bit more sociable, it will help. Meantime there are always people on here to chat with.

Take lots of care Tina x

MKMale profile image
MKMale

Hello Kezx69,

I'm so sorry to hear all the troubles and pain you've had to go through. I agree with TheAuthor about changing your GP and or GP Surgery if need be. I changed my GP about a year after my Fibro really started to get bad. I got very lucky and found a fantastic GP and his determination to make sure I got as much help as possible made such a difference.

Without him I would not be here today. Unfortunately he retired about 5 years ago.

Hope things continue to improve for you and your pain eases for you soon.

Your not alone with this we all struggle with it and try to cope with each day as it comes. Like you I soon discovered how few friends I have since Fibro took my life away. The ones still around are true friends and learn with me everyday.

Any time you need a friend I know you will find everyone here willing to be there for you.

Hope today is a little better than yesterday.

Sending gentle hugs.

Blessings Be

Drew x

mikipaulo profile image
mikipaulo

Hello! Welcome back!! Congratulations for your first step out of the darkness

mitziblue profile image
mitziblue

I did sweetheart!!! It's so sad what we go through. My first symptoms were my IBS and it continued for a few years before it finally let up. I still have lots of stomach and bowl trouble but not like at first. I have bulging disks in my back but thankfully I was always able to walk. I limped a lot at times as it felt like I had a Charlie Horse in my hip. I went to Physical Therapy and kept doing the exercises at home and do okay thus far. Now I'm fighting something else the doctor thinks it's Cushing Disease. I get the test tomorrow. It seems it's always something going on along with the fibromyalgia, as if that weren't enough. Hope you get fixed up honey!!! xxxx Mitzi

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