new to fybro

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Hi, I am 41 and have two children, and I have just been diagnosed with Fybro but when I think about it, I started years ago. I have suffered for years with painful periods (being treated for early change with HRT, which supprisingly did not work), and tiredness becoming worse in 2005 when I also started with IBS and I had to give up my nurse traing. I have since worked in the caring sector, managing but always tired, but at the start of this year I bacame worse with symptoms of irritable bladder, IBS, widespread pain, joint pain and a feeling of swelling in cartain places. I came to a halt last month when my pain became virtulaaly unbareable, I was very emotional, and my mobility poor, climbing stairs was like climbing a mountain. Everythig hurt. My G.P investigated and found me to have Fybromyalgia with depression and Oesteo arthiritis in my neck. I am on treatment now with amitryptiline 50mg, paracetamol and ibrophen. I sleep better now since I have been on medication but still get pain and fatigue on doing any task. I feel about 90! I appreciated reading about other sufferers with fybro, as I did feel quite alone.

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  • Posted

    Hi Jane

    You are not alone. When you come on here you will have lots of new friends who can understand exactly what you are going through. I am Tess you may have seen me on the site having a moan. I am 52 and was diagnosed with Fibro in June this year. Like you have had it for a long while before finding out exactly what it was. I too have irritable bowel and bladder and think to me that it is the worse to deal with. Especially when you want to go out. :cry:

    I started with ibs first and then irritable bladder, then all the aches and pains was forwever going back to the doctor. Kept blaming it on my Osteo arthritis and fobbing me off. Until I saw another doctor who did all the tests and sent me to see a Rheum. Had to wait about three months to see him but he diagnosed me with Fibro. I take 10mg or 20mg Ampytripline a night whichever I need to help with the sleep. Think also the sleep lack of it is not so good either as you can't function very well.

    Do come back on here and you will meet some of my friends Ses, Di, Linda, Skye, Helen and anyone else I have missed.

    Love Tess x x

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  • Posted

    Hi Jane,

    I have been diagnosed with Fibro since feb of this year, like Tess, I have IBS, and underactive thyroid and Osteo arthritis in the hip and spine, loss of curvature, along with cervical rib???? lol what a list smile

    It took me a year of pain and fatigue before I got recognition thanks to my Pain Management Consultant and due to all the negative sides of the build up of my diagnosis that is why I decided to set up a support group in my area as there is not enough knowledge it seems in many medical fields as to my experience you are lucky if medical professionals listen to you let alone any DWP department.

    Anyway Jane we all welcome you, we are a friendly bunch, we let off steam when we are down we literally share most things as we all listen and support each other so feel free to join in xxxxxxxx

    Take care and again welcome xxxx :cheers:

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  • Posted

    Hi Jane,

    Im Lindy, and relatively new to the \"hood\" also.

    I haven`t been given a diagnosis of fibromyalgia, but its seems I have all the symptoms.

    GP appts, blood tests....yadda yadda....nowt abnormal. Guess it must just be my madness... :lol:

    Ive just been referred to Rheumatology....so we`ll see what happens there.

    Welcome aboard... :D

    Take Care

    Lindy...x

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  • Posted

    hi jane sorry to hear u have fibro to.. its not a nice disease and i still struggle daily with the pain and fatigue..

    i have my tribunal tomorrow ses, and reading up on it because my own gp doesnt really know me and his report is basically going against me the only hope i have is the hospital report but reading up on it on the net they wont take that into concideration as i didnt have it when i first applied as i waited 22 months for my app.. so today im really stressed out knowing i wont get it but still have to go in front of a panel of 3 people, my husband is taken the day off and coming with me but i know im loosing a battle i feel we are all entitiled to... ses----- did u say u can go to a commisioner or somthing if it doesnt go well at the appeal?

    anyway never slept again last night so im very tired today and feel i just want to hide away from life..

    hope u all are not in to much pain today... luv di xx

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  • Posted

    Hi there Di,

    Is this your first appeal? I had a paper appeal as at first I could not face it...... chickened out and I felt like cr*p at the time anyway so didn't have the energy!!!!! I lost the appeal, I was kept on Low care........ I thought I am not standing for this as I am entitled to this!!!! so I went through to an independent adviser that works on a no win no fee basis...... ( he help my father in law win his) and so I went to an oral appeal....... this was not dealt with correctly as the 2nd appeal went on the basis of the decision from the paper appeal and so I was told to apply to the commissioner and I have \"leave to appeal\" due to the basis of how they came to their decisions as the wording does not make sense....... and apparently you can appeal as many times as you need to if the application is not dealt with in relating to the grounds of the law!!!! anyway I am waiting for my next appeal and I did forward further information to my last appeal as I believe that all the added information gives them the picture of the pain and difficulties....... DLA do not go on diagnosis as such they go on the basis how many times a day you are needing help, which mine is 24/7....... I cannot lean forward as my back locks...... I cannot open buttons very well, turn taps, do my hair, peal potatoes as my hands seize up and I drop things for no apparent reason..... I have incontinence and sometimes I do not make it to the toilet in time as I cannot get to the loo in time...... it goes on and on I have to get help of an evening due to the pain as my husband has to help me turn over when my back locks it goes on and on...... tell them how much your husband or helper helps you........I am in pain constantly and I predict you are too..... how difficult is it walking? I need help getting up from the chair as the pain is constant and more so when my back locks as I often get trapped nerves......... I do not like going out on my own due to the difficulties as I am unable to carry things and so I always have someone with me!!!!!! anyway you should make a note of your difficulties and then tell them...... I was told that you should have your partner to help you get up off the chair on the day rather than struggle on your own as I suppose it is showing that you are needing help on the day????? I keep my walking stick close by however but I did not enfisize that!!! Thinking of you hun just tell them the truth of how this nasty disease effects you that is all you do xxxxxxxx

    Take care everyone and I do hope everyone can sleep tonight xxxxx

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  • Posted

    Hello, I am Dale, usually found on the ME forum. I was diagnosed with ME in April but saw my GP yesterday because of changes in the sort of pain I was getting. (Does that make sense?) :?:

    I have been having neck and shoulder pains and strange sensations on the side of my face, like tightening.

    She said it was more than likely I had fibromyalgia. I know it goes hand in hand with ME cos quite a few of the ME forum regulars have it.

    Thought I would have a look on your site and I am almost sure I have it!

    Found some more indicators, I had a car crash in June, so that could have triggered it. I have always had painful periods (didn't even know that was part of FM)

    Is diagnosis by way of the tender spots? I am seeing a rheumatoligist in Dec (I also have osteoartritis!) Would he be the one to check?

    Hope you don't mind me nosying in on your forum :roll:

    Dale xxx

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  • Posted

    Hi Dale

    It would be the rheumatologist to would see to diagnose fibro. When do you go to see the rheum? By the way I am Tess and only been diganosed with fibro since June this year. Although it had been going on for about eight years. Not sure what caused mine. The only thing I can think of is that I had thyroid cancer and the trauma of that possibly triggered it off.

    The rheum will check for pressure points on the body. There is 18 they check for and they say if you have 11 they will diganose you with Fibro. I was lucky I did have exactly 11. Don't know what would have happened if only had 10 and below. :cry:

    I also have Osteo arthritis as well. Don't know if there is any connection with that but a lot of the other girls on this site have Fibro and OA. :cry:

    Can't me very nice with having ME as well for you. :cry:

    If you want to know anymore just come back on there is always someone on at some point who will talk to you.

    Love Tess x x

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  • Posted

    Thanx Tess

    Didn't mean the double post!! :oops:

    I see the rheum in Dec, so not long. My GP has been managing the ME mainly cos specialists in it are few and far between.

    Dale xxx

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  • Posted

    hi dale im diane i thought i had ME for years but saw a rhymatoligist last month and was diagnosed with fibro and oesto in my knees are hip and left shoulder, i wasnt told how many pressure points i had but on one occassion she poked my left thigh and i just about went through the roof lol

    SES.. my appeal wht a carry on... i sat for 40 mins before it shaken scared and though i felt like crying was angry that i was there.. well i had sent in a letter from the rhymatoligist and because that was extra evidence i walked into the room(after practacally on my knees as my back was so sore even though i walk with a crutch). anyway they said.. i decided i had to see one of there medical advisers for the care apponnent and this tribunal was now adjourned aaaaaaaggggggggrrrrrrr so now the clerk told me on way out that i will have to wait on this and go back to a appeal in january, i am so angry that we all have to go through this and fight for something we deserve, i also can cook and shower without help and my husband turns me over rubs my legs and puts tens machine on everynight...

    so i now have to get worked up again to go through all this again..heeeeeeeelllllllllpppp...

    hope u all are ok and i will talk with u soon xx

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  • Posted

    Hi Di, Tess, Ses and everyone,

    Oh Di, poor you. Did they say why, or what they wanted to know? You must be absolutely gutted! They could have at least let you know straight away instead of keeping you waiting. Try to relax for a bit, I know thats hard but getting stressed will only make the fibro worse.

    Talk again soon

    Love Linda

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  • Posted

    What a crap time u had Di...thats awful. I don`t think these people realise just how stressful tribunals and such like can be.

    It really annoys me as like others have said, there are people who receive DLA, when quite frankly, they shouldnt be. How they get it in the first place is beyond me!

    Do u have to be crawling on all 4`s before its considered \"deserving enough\" of a benefit that in my opinion u are entitled to?

    Im getting off my soap box b4 I start ranting and raving about it. These things are a bug bear with me!

    Don`t give up.

    Take Care

    Lindy..x

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  • Posted

    Hi Di, Ses, Linda, Lindy, Dale & Everyone

    So sorry Di that things didn't go to well for you! I hope things go better next time. Try and relax now. It is strange that two of your friends living so near to each other have Fibro. I have read that book Living with Fibro was ok. Read another one about Fibro as well but can't remember what it was called. I thought that one was better. Got both mine from out the library. :lol:

    Lindy I hope you get some relief from your elbow soon. Also I hope you get to hear from the Rheumatologist sooner rather than later. :cry:

    Hi Ses & Linda hope you are not in too much pain today and get a restful sleep.

    Its good Dale you have not got long before seeing rheumatologist. At least then you will get some answers. I was so relieved when told I had fibro because at least I had a name for something that had been going on for a long time. :lol:

    Lets hope we all get a decent sleep tonight! :lol:

    Love Tess x x

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  • Posted

    hi linda, lindy, ses and everyone

    linda my own doc which i have only saw on a couple of occassions( saw other docs in practice more) didnt give me a good report, but the rhymatoligist did so they said i need to see there doc but as u said they could have callled and let me know instead stressed me out and left me in total pain with going there and the worry. so now awaiting to hear from them but they said another tribunal would be in january.. why do i have to go there again is it to give me the docs report..oh i dont know lol

    anyway so glad ur all supporting me and hope u all are feeling ok today.

    luv di x

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  • Posted

    Oh bless you Di xxxx keep fighting though hun as they are wanting you to give up!!!! the majority of people that apply for this benefit actually have to fight for it so you are not the first hun that has lost and certainly you won't be the last!!!!! I am still waiting for my third appeal so hang in there hun..... we apply because we are in need of help we do not apply for it just for the sake of it....... people that are genuine always have a struggle as those that fiddle the system make it harder for us !!!!!! Gentle hugs hun xxxxx Get to see another doctor too one that listens as I have changed doctor recently and when I went to see him yesterday he is taking my notes home to read up before he is going to check if I need further tests and treated correctly so it can happen hun I have waited 8 yrs to get a decent doctor as before I was stuck in a surgery that was useless and it is only recently that people are able to apply to surgeries that are \"not in the catchment area\" a relief I assure you xxx alternatively write a diary from now on perhaps and then you could show the medical doctor the pain and fatigue you go through???? just a thought hun xxxxx and you seem that you were too honest and that is why they have ajourned things probably confused by what you can and cannot do? I cannot peal potatoes, use the oven as I have difficulties with my hands, I cannot lean forward due to my OA in my spine and so I get low care component on this basis, cause I am unable to make an evening meal ...... anyway hun relax now for the time being xxxx

    Welcome Dale to our forum xx I hope your rhuemo is helpful with you xxxxx I will delete your double post in a moment xxxxx I was diagnosed with Fibro and I have 18/18 tender points had bad experience with a rhuemo but others on here have been ok so hopefully you will be ok too x

    How are you Tess are you ok hun or is your OA bothering you, mine is been awful once again :cry: I hope you are ok Linda too xxxxxx

    Take care everyone and keep smiling as that is all we can do :cry: :oops: :P

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  • Posted

    Hi Everyone !

    How are you all today. I am having trouble with OA Ses. My joints of my fingers and wrists have been hurting the last few days. My wrist has even felt weak. Also knees and ankles are painful with the change in weather.

    Apparently suppose to be really cold tomorrow and over the weekend so wrap up warm everyone! :lol:

    Still waiting to go for my blood tests. Don't go until Monday at 10am. See what is happening with my thyroid levels. :cry: Have to wait a week for thyroid results, but the full blood count and glucose hopefully shouldn't take that long.

    Well take care everyone! :lol:

    Love Tess x x

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