Daily living with FM

All your fibromyalgia experiences, questions and answers.

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Daily living with FM

Postby ToniJShuttleworth » Thu Feb 13, 2014 2:18 am

Hi everyone.

It's been a while since I last posted, right now I feel I'm in a loosing battle.
I have been recently diagnosed with FM. And I'm sooo not getting my head around this.
I was diagnosed in nov 2013 but didn't believe it until I saw my FM doc at my local hospital who confirmed yes you do have FM. In the January of this year.
I've pretty much been on the same meds for a while now and am coping mentally I have only just started saying to myself yes I do have FM
My family (mostly) however don't believe that this is real chronic wise spread pain. My mother and one of my brothers do not believe in
This at all. It's sooo hurtful my fiancée however dose believe it exits he lives with me 24/7 my sister in law also has FM so it's soo nice that when we do "catch up" we can rant and rave. I'm (almost 28) I have 3 wonderful children a boy is 4 and boy/girl twins who are almost 2.
My daily living is starting to become unbearable. I can't sleep because of the pain and this tends to have a "knock on affect" for the rest of the day. I'm not hearing my alarms going off in the mornings to take my oldest to nursery. I find it a struggle to b on time with anything I can hardly make it up and down my stairs. I'm feeling soo frustrated with myself I just wanna cry! My fiancée says it's my own fault I need to manage this FM and start by going to Bed early!! This is not always possible. I've recently been keeping him awake on the nights I do have early nights as he says I've recently been having very bad mussel spasms I however am not aware that this is happening. I'm exhausted all day everyday and yes I do try and chip in with housework. Only light duties though as I can't do much anyway. I should b playing in the park with my kids but we stay in because mommy can't drive today. I used to give them all a bath it was my favourite thing to do before my FM got quite bad. I can't cook or lift up a heavy object I burn my hands on my cooker I'm so forgetful and can't use a tin opener. The simplest things are becoming a nightmare. I'm so scared too my fiancée has cut down his hours to look after me our kids and our housework. My docs have said I'm unfit for work I always worked from the age of 15 up until my kids and now I dunno how we are gonna do for money. I'm so frustrated with myself with this FM already

I'm so sorry for the long message I just really wanna chat to other FM suffers.
Thanks for taking ur time to read this.

Xxx
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Re: Daily living with FM

Postby Purplepig » Thu Feb 13, 2014 2:51 am

I was diagnosed in Nov 13, I am fortunate that my children have left home, so I have lots of time to do nothing. Been signed off since last July would love to get to work, I'm a carer in community. Last week I thought to myself that as well as FM I've developed Tourette's because I seem to curse with every move. My hubby, family and friends are very good, but nothing for me beats reading the posts on this site, it is a lifeline, people accept the good with the bad and always have a kind word for each other. I know it's not much, but hope it helps. (((:))) :-|
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Re: Daily living with FM

Postby Carphil » Thu Feb 13, 2014 4:55 am

So sorry to hear your having such a hard time of it right now. It must be really hard with young children. You are really lucky to have a partner that understands and helps you so much.
There will be others on here that will guide you to maybe getting help financially. There are benefits that are out there to be claimed.......not without a fight though. Nothing seems to come to us very easily, but fight for them you must. You will get it in the end. As I said.......others will be able to guide you with that and there is lots on this site to help.
You have to learn how to pace yourself more. That way you will cope a little better. Your meds may need changing and modifying to your needs. We all are different. This comes with time. With FM everything is with time.
Fibro fog is one of my worst parts of this illness. My memory is impossible. Today I was going through my phone bill that was unuasually high this time. Several calls were very high and I asked my husband if it was something to do with him. I wasn't happy. He went over it with me and they turned out to be all mine. Even though I never use the phone. I checked the numbers with my contacts and yes they were mine! I had a reverse charge call from my grandson December 28 for over £10 plus I had rung him several times at that time. The thing is I can't remember any of the calls!!! This morning my alarm went off at 7.15am. I have no idea why. I can't remember setting it and have no idea why I would set it. There was no need for the alarm. This is happening all the time but now my husband have to laugh about it as I do some odd things these days. And yes like you I don't do the cooking as I burn everything. I forget that I have put anything on to cook and don't smell the burning!! We have thrown so many pans away that it isn't worth it. Maybe it will get better in time lol. I get the constant pain and weakness plus the drugged sleep where you aren't completely asleep and wake up worn out. I'm much better at pacing myself these days so that I can do some gentle things with the family.....it's nice. If I can't join them then I say and send them off without me. But I no longer feel bitter about it........it never helped and just made us all sad.
Wow......this is longer than I expected so I will stop now.
I do hope things get better for you. It was good to hear from you so thank you.
Gentle hugs. X
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Re: Daily living with FM

Postby daisies » Thu Feb 13, 2014 5:08 am

Hi sorry to hear you are suffering but reading your message it sounds just like me but I do not have children to look after. Apart from my husband no one else in my large family believe in fm and think I am just making things up. I also suffer muscle spasms whilst I sleep and this keeps my husband awake. I do claim ESA and after a battle which meant going to tribunal I am now in the support group. You should give this a try. Hope things get better for you.
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Re: Daily living with FM

Postby libbiek30 » Thu Feb 13, 2014 8:30 am

It does sound like u r really suffering it must b so hard with 3 young children. I work in pre-school so I know. But I also know how bad u feel we u cant do what u want with ur kids. My daughter is twelve now but ive had this since she was little. My hubby has always had to do a lot but even now I just don't have the energy. Talk to ur gp about ur meds u need sleep a d also ask if u an be referred for acupuncture. I had it at r local hospital for over a year and it really helped my pain and migraines and Iits relaxing.
Gud luc :-D
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Re: Daily living with FM

Postby Ria Landon » Thu Feb 13, 2014 10:50 am

It infuriates me when people say this disease does not exist. If a doctor has confirmed your diagnosis how can they argue it? Just a suggestion but maybe you could get hold of some information for them and next time somebody says something so insensitive tell them to go away, do some research, then maybe they can discuss it with you. I printed off all the info from the NHS website and took it everywhere with me for a while, highlighting all the symptoms that related to me and how the disease affected my life. Very useful when I went to my surgery and would see a different doctor to my own very understanding GP. I know the NHS do a leaflet too, I found some in the rheumatology department at our local hospital. There are other sources of information around from other great Fibromyalgia support groups.

I know its not fair that we should have to do this and although I've been blessed with understanding and supportive family and friends, it does help me to answer questions and explain when people do ask.

Hope you feel better soon. Please make sure your doctor knows how you feel

Tender hugs love Ria x
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Re: Daily living with FM

Postby LauraInWonderland14 » Thu Feb 13, 2014 11:57 am

Hi hun,

Im so sorry your feeling so bad. But honey go easy on yourself. Once you accept the fibro you can start to fight it. Bit giving yourself a hard time won't help, it'll make things so much worse. First get right meds, talk to your Fm doctor. Then get the "what to say to the nonbelievers' post of this forum, and show your mum & family. If they're still dicks then that's their fault not yours- you tried to tell them. I was diagnosed 4 years ago, and its a very tough road I won't lie. But in many ways your lucky, your partner loves & supports you, and you have children!! Try and swim/yoga/gentle exercise because although very likely you want to stay in bed- the weaker your body becomes the worse your pain will be. Get the right meds and remember to talk on here to stop feeling alone. If you want to you can manage your fm but its very hard work. Stay strong & gentle hugs x
Your fighting this horrible illness,this awful system.
You've helped me so much & we've never even met.
Thank you & Stay strong.

Laura x
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Re: Daily living with FM

Postby Libby28 » Thu Feb 13, 2014 3:01 pm

Hi there - I'm really new to the site, but have been diagnosed 2 years now with fybro & RA for past 4 years. I'm 45 & do manage to work but is really hard. My boys are teenagers & everything lands on my husband to do & he workd FT as well. Know how hard & frustrating it is! My extended family dad & sis don't understand either think that is an excuse, but don't say as I am unable to assist in helping my mum who has mental health illness. Unfortunately you have to learn to let go of peopl who don't understand as stress will make you worse. Is their prob if don't get it. I've found that counselling helped with this on peoples opinions. Also for the fybro fog I have note book & diary that is my life line especially for work. Guys at work understand now & are really supportive but not management. You can only do your best as my husband now say's as he does most chores & cooking etc. Try giving the kids small tasks to help is learning for them as build skills to learn about supporting each other as family. When I was first really ill 5 year ago is what had to do just to keep house running. Try to make sure you get sleep at night as really helps. Also for the legs jumping or spasms try Tonic water wee glass every day possibly at night with your last meds. Really helps is something to do with the quinine in tonic water. I have used fizzy indian tonic water with lemon - draws your jaws a bit, but lemon can help flush your liver which then helps you. Also Hyulroinic acid vitamins & milk thistle agine for you liver, but Hyulroinic helps the goo molucules in your joints.

Hope this is of help to you xx :) take care there are people who know is real & know how it hurts x
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Re: Daily living with FM

Postby calipsopink » Thu Feb 13, 2014 6:47 pm

Hi ya girl I know the feeling I've prob had the problem for yrs my boy is 15 my girl 4 I remember not being able to run round with him and I can do less now so its worse now the Docs barley help and. I am a single mum and it's really hard but I just. Carry on best I can do And financialy best I can suggest hun is if u in UK apply for PIP and ESA there is no guarantee but worth a try I'm still waiting and hoping good luck
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Re: Daily living with FM

Postby bandj » Thu Feb 13, 2014 8:53 pm

Hi, I tok some info into my manager and she found it helpful. Maybe that's something you could do. Im blessed in that my family do believe in fibro and are understanding. However, my huby hss loads health problems too and im his sole carer. He does his best to help me but I have to do everything for him.
Try contacting CAB for help with claiming benefits.

Hope things improve fof you soon.
There are these three things that remain: faith, hope and love. And the greatest of these is LOVE.
1 Corinthians 13:13
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Re: Daily living with FM

Postby ToniJShuttleworth » Thu Feb 13, 2014 9:32 pm

Wow! Thank you all for ur kind words gental hugs and advice. I really think I'm going crazy.

My fiancée and I are gonna start looking into PIP as he is so willing to give up his job and become my full time carer. I however feel like I don't need PIP BUT I also know I really do. I also feel ashamed about claiming as I know there are a lot of other people worse off than I. But I guess that is what it is there for.

As for other benifets I'm not 100% sure on I've never had to do this sort of thing b4. I'm from the UK South Devon but I would love to chat to other people as I have no clue on what's what atm x
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Re: Daily living with FM

Postby Libby28 » Wed Feb 19, 2014 4:58 pm

I felt same about claiming DLA/PIP also blue badge, but have got over that, learnt to let go of what other people think! They don't know you, don't live in your shoes & would be entitiled to it. Will really make difference to your quality of life, blue badge for parking - can't beleive how it helps & if you get high rate DLA/PIP can get you a reliable car if you can afford to give up the money awarded. x
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