not coping with fribo

i have had fribo for nealy a year but i no i have had it a lot longer i am only 32 and have a young family i am not copeing with this illness at all as i was working as a carer and had to pack up work as the pain got to bad i am finding i cant do all the things i want to as the pain gets me so bad and i walk like a little old laidy as the pain is so bad in my back /hips/legs i even walk with a realy bad limp i cant get my head around at all but sometimes i cant hardley move and feel so tryed even my hubby dont get it i am on tabs for this but i cant take it

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  • oh stoker, I am so sorry that you're having such a hard time, it is a horrible condition, but I'm hopeful that once they get your meds right you will start to feel a bit better. there will be good days too although at the moment it might not seem like that.

    You are not alone. here people care,share, know and understand. ask away and feel free to tell it how it is. if one person doesn't know, someone else will. it might take a while as we all read at different times, but you will get a response.

    have you been offerred counselling? it helps. as do anti-depressants.

    have you applied for DLA? please do so and then ask on here or pm me for help with he forms.

    sending you a virtual hug.

    sandra.

  • yes i have had counselling and i am on anti-depressants the cab helped me with wining the disibilty but said i cant applie dla as it has run out as i was on conibution base and only will pay for 12 month witch i have had it for so cant have it as i went to have an assment with them and they come back with fit to work if only they new how much pain goes with fribro my doctor wont change my tab and i just cant cope with all of it anymore .my hubby says i have to go back to work i want to but its the pain i just dont no what to do

  • do you mean the ESA was for 12 month? I don't know how you reapply once it has run out but someone on here might. You need to be reassessed as the support group is not based on contributions. A welfare benefits advisor could help you and maybe get an advocate - these can be found via google put in advocacy and where you live. I got mine as a "vulnerabe adult" - hard to accept that title, but I'm told it applies to anyone with long-term debilitating condition; sad but true, they have access to agencies that can help you.

    Go for the DLA if you can, again the welfare benefits advisor could help.

  • Hi Stoker

    It is so difficult at the decent of times and having a family is hard too as i know too.

    This site helps me realise we are not alone and everyone is here to support one another the best we can.

    Just never bottle things up to yourself! Xxxx

  • i have been bottleing it up and putting the brave face on for far to long but people dont get it as they cant see it and think i put it on as i look fine but at the mo i am haveing more bad days then good how do you cope with it and haveing a familey

  • God love you, it's an awful illness, I feel it every minute and very much like yourself, (in feeling so weak, all the time) keep pestering your doc or try and change him, I think it gets to the point with some of the doctors that they just look at you and say nothing sometimes when another symptom pops its head up, and actually needs his healing, words and meds, to try and sort it as much as possible. I'm thinking of changing my doc too, I don't think he's doing a good enough job I really dont.

    Love and gentle hugs,

    Take care

    Claire xxxxxxxxxxx

  • he wont change mine i am going to the hospiltal this week so i hope they will i feel like an 90 year old woman and even walk like it now i have it so bad in my hips/back /legs/neck it seem like an never ending list as more pops its head up i am just not copeing with it at all i cant expect it at all

  • Hello Stoker you poor thing, you sound swamped at the moment. Have you actually been diagnosed with Fibromyalgia? The reason I ask is that if you haven't officially been diagnosed you could ask your GP for a referral to a Rheumatologist to hopefully get a diagnosis and also to ensure you get the correct meds and support for coping with Fibro. Perhaps a referral to a Pain Clinic to help you manage your pain better.

    However, if you have been diagnosed, you could still ask your GP for the Pain Clinic referral and also for a review of your meds as you should be better controlled than you are. You are struggling too much with your pain etc., you need help for this.

    Perhaps taking your hubby might help him to understand how poorly you feel and what a struggle it is managing your illness and a young family too. You could also ask him to help you around the house a bit to take some of the strain off you, also perhaps to give you a break from the children for some "me" time.

    We are here for you Stoker, we all understand as we are in the same boat. Take care and I hope you manage to see your GP and explain what a struggle you're having at the moment. Here's a hug for you.

  • yes i have beem diagnosed with it by doctoer and the hosiplit i have an a appoment with physo so i am going there once a week i just am very low at the mo and things just seem to be getting worse i am so glad i have found this group as i dont have anybody who realy understands thank you

  • Hiya Stoker. My heart goes out to you hunny. xxx

  • Aww Stoker, it so is not nice and we understand the good and bad very much.

    I say 'decent' no idea what feeling great is anymore.

    It is all about managing, coping getting the right meds to feel comfortsble and not stressing oneself the best you can.

    The family am very very sure they will understand.

    I printed info off as i never heard of any of it until going back n forth all appointments etc so i had to research it as my Dr's handed me a piece of paper just with initials written on it,

    Thats why under brain specialist as they are the ones that understand the brsin and the signals etc.

    You can get very good Dr though that are understanding and i ser every Dr in my surgery and know all receptionists too now.

    See the Dr trust me am sure they treat you different in surgery too soo much more nicer as they know you are suffering.

    Very soft hugs

    Caroline xx

  • Hi Stoker,Ask you husband ,friends,& family to log into this site ,it may help them understand a little more about the condition and that you are not alone in the struggle with coping with fibro as all of us on site have similar stories some better some worse but there is hope and help here and what we don't know is'int much lol .Then tell you hubby what you find most difficult to do in any day if its housework ie hoovering /bed making ask him to do it for you.Shopping make it easy do it online free delivery.Depending on ages of your children you may be entitled to 15hrs free childcare enquire at local nursery.It all helps if you get a chance to rest even for an hour as tiredness is hardest part for most sufferers.I really feel for you as i am in a very similar place minus the hubby and i have no family residing in England.I also have four children ranging from youngest just reached 4 eldest is 21.My life has changed dramatically since the onset of fibro stupidly it started with sudden allergies ie prickly heat ,hay fever,skin rashes,wasp sting reactions although i knew i had arthritis for years, tiredness i got vitiam injections i also have raynaud's and ibs.All my aches were blamed on arthritis ,raynaud's just unlucky and ibs blamed on me lack of fibre even though i tried everything even prune juice yuck daily nothing worked.It has taken 7/8 from above to finally get diagnosed via rheumy appointment as like you i have now got a limp, all lower regions were on fire bright red and burning the pain i can't describe, have trouble standing/sitting/lying down even with two mattress toppers the pain persists in hips lower back and knees.I rely heavily on older children to keep house tidy and take youngest to swimming and park.I get so frustrated when i can't play in the park with my youngest or do all that i did with the older kids so i try do other things to make his life happier ie painting ,reading ,jigsaws ,construction sets,which he is great at thankfully all soft play things which don't hurt but gives him a bit of quality time with me.I was self employed up to April this year but i had to retire as it became impossible to continue ,now i hardly go out at all to avoid the struggle of walking ,bending ,lifting and carrying is a no no.I potter and keep myself occupied and do what i can leave what i can't as it will be still there tomorrow.I invite friends round for takeaway's or arrange bingo night lol so i am not missing adult company.I had to readjust slowly and work out what hurts most by keeping a notebook on what i did today see how i felt tomorrow and avoid what hurts ,sounds silly but it helped me.I truly hope that you can get people to view this site and you know that whenever your low someone on here will help you through it.Get as much professional help as possible,persist,make your doctor take notice of you ,keep a notebook show him/her that of your daily life how this affects you.Mostly i wish you a pain free day and good luck with getting help xx

  • thank you i dont no anybody elce with fribo and i have felt so alone i am very much like you dont go out far as the pain and it realy frustrated with it all as i cant do all the things i used to do i am so low at the mo as its getting realy bad at the mo i try to sleep but the pain wakes me and this week i am getting realy bad pain in my legs even when i sit the feel heavey and hot and the pain is so bad no matr what i do and pins and niddles in both my feet

  • Hi ,Your very welcome and the only ones i know with fibro are on here.If i am being totally honest only another person with fibro can truly understand the condition.I have to keep reminding and explaining why i don't go out or why i won't do things that i used to continually to friends and even my older kids who even though they live here bar my eldest son who lives near me seem to forget as i look healthy and fit.I am 44 and size 10/12 now as i am nowhere as near active so weight is an issue mainly trying to keep it off as rhumie letter states no dry land exercise due to arthritis i think, as knees are my biggest problem in that condition but i did used to cycle daily(NOW I DRIVE EVERYWHERE LOL) 20/ 25 miles a time and was always doing everything with too much gusto hindsight would be great if you could have it beforehand lol .It is very hard to readjust listen to what your body is saying (sounds mad i know but it will soon tell you via pain factor after any activity) like you i feel like i am an elderly lady most days.I try to avoid any form of stress as it makes my symptoms much worse i have noticed that maybe why docs think it all starts in the head how we react to stressful situations.I get loss of sensation numbness in hands and feet ,the pads of my fingers shrivel up as if they have been in water for ages,raynaud's get the blame from docs but it happens 10/20 times daily even on warm days so i am not convinced it is raynaud's.Not a lot i can say with how best for each person to cope with fibro on any scale except take it slowly day by day see what hurts you and avoid doing it if possible,keep your notes it gets easier once you see a pattern emerging.Try getting friends and family to read all they can on fibro to better understand the new you.Do not despair help is always on hand here and if it helps heres my number if you want a more instant answer my name is jo on 07999227890 call or text anytime you wish.My son starts school next week so im ok with free time.Good luck and please please call if you need to just get out of a bad patch or need an ear x

  • Stoker & Jolow, I hear both of you, Im nearly 62, had fibro for the past 6yrs, been up and down with it, I feel now today just as much in the dark as I did in the early days, same old dont look ill, I have lost over 2stone not from choice but rather glad that I did, never have looked my age, have been on all sorts of medication, managed to ween myself off a lot of the medication I was at one point on 11+tablets three/four times a day, now only on morphine and an anti-depressant, with extra pain relief as required. Currently in a flair, and would say every inch of my whole body is being messed with, its like a current of pain flying around the body that is not in control so it can be at one part of my body then anywhere, legs and hands have spasms, drag my feet at times not necessary when tired either, sweats, water just drips off me, most of all is an anger, dont know why Im so angry all the time. I wish that it would ease, I dont know how younger people cope with a job and a young family, I had a job but due to fibro they released me, if I could change things I think I would have left work earlier to try and have a better life now, but its hard and I want help thank you for read Kath gentle hugsx

  • Hi stoker, I just wanted to add to what Jolow said about childcare. I'm a family support worker in a children's centre and if you contact your local children's centre they will help you with applications for childcare for under 5's.

    You can get funding for 15hrs if you have a 2 year old (called disadvantaged 2yr childcare) if you get any income related benefits e.g. income support, child tax credits, working tax credit, housing benefit etc.

    You can apply for targeted funding which is also 15hrs, but is for families in crisis (who get the above benefits) and can be used in school holidays for 3yrs+ children, or at any time for under 3's.

    Targeted and 2yr childcare can also be used together for 30hrs per week.

    You can also ask your local childcare for extra support around your condition and they will probably assign a family support worker to you, who can negotiate with mortgage lenders etc and liaise with citizen's advice for you.

    If you need anything else, just drop me a message.

    Don't give up! Big hugs x x x

  • Big Hugs sent your way,going through it myself at the moment so much pain i don't know what to do with! xxx

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