Newly diagnosed

Posted , 4 users are following.

Hello everyone,

I've just been diagnosed with fibromyalgia after over 6 years of pain, my last gp was pretty useless and with hindsight I don't know why I kept going to him! I have a new gp now who is fantastic - he actually listens and seems to understand. The previous one had referred me to a neurologist and even though all their tests came back clear he wouldn't try any other routes to a diagnosis. The new doc referred me to a rheumatologist who very quickly diagnosed me. It's such a relief to finally have a name to hang on to all these horrible symtpoms!

I have pain and pins and needles in my hands and feet constantly and on a bad day the pain spreads through my arms and legs as well, also have back pain/tenderness most of the time. I don't sleep well and usually wake up feeling like I haven't slept at all. I get restless legs and irritable bowel and basically have a struggle to get through each day. If I have a busy day and have to do a lot of walking around I can barely stand come the evening.

I'm taking pregabalin, amytriptaline and tramadol which all help a bit. Does anyone have any suggestions for anything else I can do to help?

All suggestions gratefully received!

Caroline

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15 Replies

  • Posted

    Hi Caroline

    Hi I a Tess and have had fibro I think like you for a lot of years. Was only diagnosed by rheum eighteen months ago. I am 53, married and have five children. Also have two lovely granddaughters.

    It is such a relief when you find a doctor who will listen to you. I was like you for about seven years kept going backwards and forwards to see different doctors at the surgery and getting no where. I finally went to see another dr and he was so good and listened to me. He finally sent me to see rheum and the rest is history.

    My advice to you is to try and pace yourself on a daily basis and take one day at a time. It is so hard to do as when you feel well you just want to get everything done. :lol: Its only after that you feel really tired and make things worse for yourself. I find it good to have a list of things I need to do. I don't do them all but even if I only do a couple off the list it is an achievement and makes me feel better. Its also good I find it you do some jobs and then make yourself have a rest in between. I tend to sit and read for about an hour and then will carry on if I am not too tired.

    Exercise is good as well. Whether you do some light exercises as they can help with pain. They release endorphins that are a natural way of easing pain. Or just a little walk around your garden or to the end of the road. You can then increase it when you feel able. I find it helps me feel better just getting out of the house for a little while.

    I find that my irritable bowel is the worst thing for me to deal with on a daily basis. The pain I can deal with and the tiredness. :cry:

    Well hope this is of help to you! I feel in time you will find your own way that is best suited to you.

    We are a friendly bunch on here! :lol: There is Lizzy, Linda, Di, Lindy, Ses, Brian and Richard. Not everyone comes on all the while it depends on how they are feeling and family life.

    Take care

    Tess

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  • Posted

    Hi Caroline

    I hope you have had a good day today.You could try the tens machine I use mine a lot. I use normacol for my IB it helps a little and you can buy it over the counter.

    Tess how are you? I have slept the whole weekend away and thinking about going to bed now. Been thinking about my visit to the doctors getting a bit nervous I don't like going at the best of times, but this time is going to be even worse. Lets hope the letter is very clear from London.

    Richard hows the ice hockey going are panthers wining. I hope you have a good week at work.

    Lindy hope you are feeling a little better now that your mum is getting some help.

    Alan is off to London on tuesday. So not much longer before we know whats going to happen.

    Take care everyone.

    Lizzy

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  • Posted

    Hi Lizzy & Caroline

    How are you today Caroline! I do hope you are not in too much pain today. :lol:

    Lizzy hope all goes well for Paul tomorrow! :lol: Will be thinking about you all.

    I am not too bad today apart from the usual aches and pains. Still trying to get back into my exercise routine with being away. Takes time to get back into it. :lol: Theres not enough room in the motorhome lol to do any exercises while we were away. :cry: Although I do enough walking anyway. :cry: Think I am still getting over all the walking we did in cornwall. It was had some very beautiful scenery and was made even better with the sun being out. Had a scare with a steep hill and got half way in our van and it couldn't make it. Had to go back slowly down the hill so we could take another run up at it. Luckily we got up that time. :lol:

    Won't be letting Stewart take the coastal roads again somewhere different. :cry: If we couldn't do it we would have to pay a tractor to help us out.

    Hope everyone else is ok today.

    Tess

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  • Posted

    Hi Tess and Lizzy

    Thank you both for replying. I'm going to try to start going swimming again as I've heard that can be quite a good exercise. I've not felt too bad today managed to survive the monday morning madness at work (I'm a doctor's receptionist) and now just trying to deal with the possibly hormone induced moodiness of my daughter Bethany, she's only 10 but I swear the mood swings are the start of things to come!!

    Take care

    Caroline x

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  • Posted

    Hi Tess and Caroiline

    Tess you not the only one who struggles up the hills many a time our peugot estate 7 seater and trailer have struggled up the hills especailly if we don't get a good run up. Like you I do exercise every day as it keeps me going. I walk 3 miles every week day.

    Caroline I can't think of a worse job all those phone calls on a monday morning. As for the swimming thats a good idea but you do need to find a pool with fairly warm water all our local pools are too cold.!!!!!!!

    Well having slept the weekend away I haven't done much today either. I'm now begining to worry about tomorrow Alan is not showing his concern but I know he is as frightened as i am. My IB is begining to play up again. Can't see me having much sleep tonight.

    Richard Di Linda Ses and Lindy hope you are all ok and had a good start to the week.

    Lizzy

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  • Posted

    Hi Lizzy & Caroline

    Lizzy will be keeping my fingers crossed for Alan tomorrow. :lol: The stress is not very good for ibd. :cry:

    Caroline good to like to go swimming. I don't go as I can't swim. :cry: Thats why I do walking or gentle exercises the physio gave me.

    Don't envy you with your job as doctors receptionist as must be really stressful especially on a Monday. :cry:

    Linda I hope you are doing ok and your mum is alright.

    Take care everyone!

    Tess

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  • Posted

    Hi Caroline,

    I`m Linda 57, married with two grown up children still at home. I`m carer to my husband, and frequently make the 90 mile trip to my Mother who has dementia :!: Yup and on top of all that I have Fibro :!: Been diagnosed just over two years and take Amitriptyline to help sleep pattern. Worse thing for me is the fatigue, I think because of my family commitments I can`t manage it properly. Hope you are not too bad today, keep coming and chatting, we talk about all sorts not just fibro :!:

    Hi Lizzy, thinking of you and hubby today, hope all goes well smile The stress won`t do you any good at all sad

    Tess, Mum has her carers sorted now, twice a day for medication and they bath her twice a week too. Going over this afternoon to take her to the bank, just can`t risk her getting confused on the bus again and getting off in the wrong place sad

    Well after two frantic days we have our house ready for the builders to start the lift today........ they are stuck on the A14 :!: It could only happen to us :!: So watch this space.

    Take care everyone,

    Linda

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  • Posted

    Hi Linda, Lizzy, Caroline & Everyone

    Lizzy yes hope all goes well for today. :lol:

    Linda its good your mum has her carers sorted now. Do you have to pay? As when a person is diagnosed with Alheimezers (think I might have spelt that wrong) all help they need etc is free. Did you also know that if you want you can have a power of attorney set up so you can deal with your mum's money in paying her bills etc. :lol: Only know about this as Stewart's family were able to do that for his mum. She wouldn't go out anywhere so they had to take on looking after her money etc. Stewart's sister has a friend who is a solicitor and told her about this.

    Well I hope your builders get to you in good time to start your lift today. :lol: Will be good when all your alterations are complete and you get a little bit of normality back lol. :lol:

    Hope you are not to tired after your trip to your mum's today.

    Caroline like Linda said do come back on the site. We talk about a lot of different things or just have a bit of a rant if we need too. :lol:

    Tess

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  • Posted

    hello all my good friends... im back from my wee break up in the restbite home with john... but... know how john got a heart prob well we only arrived at the cottage and he got tested at the nurse and his heart rate dropped to below 30 beats per mins..so it set all alarm bells off.. cut a long story short he ended up having to see a doc up there and got a esg done which was sent to his consultant in edinburgh royal... so.. he is def to get a pace maker and he is not happy about it at all.. it might affect his job..

    well me.. im cracking up... i feel so depressed and down i have been feeling really ill... coming out in hot and cold sweats... feeling so tired and in pain... went for the sleep clinic over night stay on fri night.. thats a sham as well as because i didnt fall asleep in the first 3 hours and start the other part of the test that takes 5 hours the nurses couldnt tell me if i have sleep apnoa.. found out there was no doc on a sat morning so have to wait 6 months for the results... what a country eh... also she woke me at 6.30am and told me i was free to go so i had to phone poor john to come and get me....ooooooohhhhhhhh friends i feel so stressed out..

    hope u all are doing well... luv di xx

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  • Posted

    Hi Di

    It is such a shame you have come away from your rest still really stressed. :lol: I hope all goes well for John and it is probably for the best having a pacemaker if he has problems with his heart. How will if affect his job? What does he do?

    Di sorry things didn't go so good with the sleep clinic either. Why does it has to take six months for you to get results. Are they having a sleep in between as well lol. :lol: Sorry couldn't resist that one.

    Hang in there Di and take one day at a time. Come back on and talk to us if things are getting you down.

    Take care

    Tess

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  • Posted

    Hi Di, Tess and everyone,

    Sorry you are so rough still Di, and about John`s heart. Ray`s heart beat goes the other way, really fast, and they have to shock it to get it back to normal. What a lot we are :!: I also get hot and cold sweats, put it down the menopause at first, several years ago, then blamed the Fibro, but now I tend to think its more stress related sad Who knows with this dreadful condition we have to live with :?:

    Thanks for the tips, Tess. Mum does seem more settled with the carers going in and its a bit of peace of mind for me too. Glad I went and took her to the bank cause she really wouldn`t be safe alone sad Don`t think she actually had lunch today, although she tried to cover it up when she realised what she said :!:

    Well, builders arrived and should finish this stage by tomorrow lunchtime.....then we wait till a week on Thursday for the lift to be finished :!: We can`t put any furniture back in the bedfoom till then, unless we move it all out again :!: So it looks like the sofa bed for a week :!: I keep telling myself it will be worth it in the end, but I know I`m going to be really stressed out by then sad

    Take care, Linda

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  • Posted

    Hello Everybody

    Linda hope you are Ok and managed to find some time to unwind. I hope your alterations are completed with no complications. At least when they are done and everwhere cleaned up life will be a lot easier for you. Sofa beds are only ok for a couple of nights.

    Di I'm sorry that the sleep clinic didn't go too well. Tess I agree with your joke. I hope it all goes smoothly for John getting his heart sorted. Hope you feel better soon.

    Tess hows life treating you?

    Richard hope all is well with you.

    Alan had his hearing yesterday and now he has to wait up to 7 days for the outcome.

    Lizzy

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  • Posted

    Hi Lizzy

    Another waiting game for you! :cry: Keep my fingers crossed that it all works out.

    Got to go as got Sophie coming in the minute. Looking after her today and just trying to eat breakfast before she arrives. :lol:

    Catch up with you later.

    Hope everyone else ok today.

    Tess

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  • Posted

    Hi Lizzy and Tess,

    Oh dear Lizzy, this week will seem like a month waiting for the outcome sad Keep your chin up and try not to get too stressed. I`m a right one to talk, already getting stressed about the mess we are going to be in for a week :!:

    Tess, enjoy your day with Sophie, she must be turning into quite a little girl now :!:

    Well going to wait for builders to arrive, catch up later

    Linda

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  • Posted

    Hi Tess and Linda

    Hope you had a good day.

    Tess sounds like fun having your Grandchildren round. When my time comes I hope i am able to do all the fun things my Granny did with me. I can remember once my mum gave me a spoonful of mustard to put in Grandpa mouth while he was asleep :lol: :lol: I'm not sure he saw the funny side. :roll: My Gran use to have some very large greenhouses and a wonderful garden, which had become very overgrown, she use to take us down and play games in the orchad crawling through the overgrown bits and we use to eat plenty of gooseberries and cooking apples. I do miss her.

    Linda hows the building work going? At least now you can see an end in sight.

    My letter from the specialist has got caught up in the postal strikes in London so i don't know how long it will take to get here. I really would like to start my medication as soon as possible. I hope the waiting for Alan is not too long as my IB is really bad and i feel like a bag of nerves.

    Take care everyone.

    Lizzy

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