Just found out.: Hi I have just found... - Fibromyalgia Acti...

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Just found out.

fairylady profile image
16 Replies

Hi I have just found out that I have this, after struggling for months with the symptons and just thinking it was my age. I still cant believe that I am going to feel in this much pain and so tired. It is hard to take in I am a single mum and trying to explain it to people and to my 11 yr old wears me out. Will it get worse? I am so tired all the time and doing the simplest of things is hard work. I still feel that I should be able to do everything Maybe I just dont really understand it. Any help would be gratefully recieved thank you Penny

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fairylady profile image
fairylady
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16 Replies

Hi Penny,

Welcome to a great group. I thought it was my age too. I've got fibro and osteoarthritis. It's the young ones on here who have it so bad I feel sorry for, they have their lives ahead of them and they've got this 'thing'.

I don't know if it will get worse, if you click on tags along the blue line at the top, there are loads of things you can read on there. I think I've had it for years but was only diagnosed in August and I think it's got worse but there are drugs we take to help. Loads of really helpful posts on here. You'll need a day or three to read them lol.

Have you spoken to your doctor or rheumatologist about medication?

Sue xx

fairylady profile image
fairylady

Hi Sue and thank you for replying. Yes mine has got worse I suppose that is what prompted me to go to the dr. I too have osteoarthritis in my knee. Plus an underactive thyroid, they thought it was my thyroid problem causing the pain but that is stable. Yes I do feel sorry for the younger ones at least I have had many yrs of being ok and they have their whole life ahead of them. My dr has given me tranadol for the pain.

I will read the posts etc I am sure I will find alot of useful stuff and thank you again xx

Penny

A lot of us suffer from under active thyroids Penny and IBS and RLS - me included. Strange isn't it. A lot of us have had a really stressful life too - we were saying stress seems to be a likely factor.

My osteoarthritis is in my knees too and my lower back and hips.

Happy reading lol. :(

Sue xx

hi and a very atrm welcome to you you are on the right place now you will find alot of help advice and support on here as WE ALL definately undrestand exactly how you are feeling and what you are going throgugh you can shout and scream on here you can share anything you want to your highs your lows anything you wish , we are all here for you and each other and we do have some laughs on here so if nothing else i hope that you have now found somwewhere you can be yourself no front no mask jus you love to you diddle x sorry bout typing errors i have had about 10 hours sleep all weeek due to this lovely fibro and am absolutely washed out but cant sleep see i am already burdening you lol love diddle x

fairylady profile image
fairylady

Thank you so much for your replies and lovely to meet you all. I have IBS too and suffer with severe bouts of depression. I rang my sister and told her and she says she has it too and so does my other sister, but they are so active hold down jobs, one sister does dancing nearly everynight I cant even manage to do the housework without feeling shattered and needing breaks in between. Now I feel like I am lazy. My sisters says she sleeps well everynight I dont remember the time I slept the whole nght I am in to much pain to stay in bed. Sorry I am moaning but she just made me feel like 'so what get on with it' I am thinking or cancelling the holiday I booked for my daughter and me as I cant walk far let alone get on 2 busses 2 trains and then another bus with the luggage. It is not the only holiday she is having she is going away with friends and her dad. I just feel like crying

Thank you Jules 58 for the websites and thank you all again xx

fairylady profile image
fairylady

Hello Lynn,

Thank you for the welcome,

I was on paracetamol and codine for my osteo but off the codine and now on tranadol.

I am on mitazapien and doloxutine for my depression, and meds for my thyroid.

I know my thyroid has just been checked but will ask about a vit D test.

Yes my dr did mention hydrotherapy and is going to refer me to the hospital as thats where the pool is.

She did mention amertripiline ( sorry about spellings) but she said she will look at that as I might have to change my depression meds. I take docusate too

Hope that all make sense

xxx

Hi fairylady. Welcome to the site.

You will find it extremely helpful and the lovely people on here are so understanding.

I have had the symptons since i was 22 when my son died and it started off years of depression and chronic fatigue, i was only diagnosed with FM in 2010, bt like a lot I also have IBS, chronic fatigue syndrome, and TMJD.

Luckily my thyroids are fine.

I was working up until feb last year but every year i felt it harder and harder to cope with and finally gave up.

I rarely have a good night sleep like most.

But we are all on a lot of different medication so I would check with your doctor on what other meds are available to help with the pain.

As for explaining to people well its hard but you have to learn not to let the people who make you feel like a hypochondriac or lazy get to you as this will cause more stress.

Gentle hugs to you. Kia xx

fairylady profile image
fairylady

Thank you Christine and also Kia ( beautiful name by the way) I think it got to me that my SISTER made me feel like that, I know everyone is different and the symptoms are different for everyone. I will try and not let it get to me.

You have all been so helpful and welcoming I am so pleased I found this site thank you all again xxx

FionaP profile image
FionaP

Hi

It is good for your sisters to realise that we are all different too and also have different point counts when we eventually get diagnosed. You could ask your doctor for a muscle relaxant as I did not see one mentioned. There are a few if you look through the tags to the right of this page, Medications. I take Baclofen and it has made a world of difference.

You could also ask if you could have assistance for your journey. Ask the bus company and train operator. They were great for me a few years back. Even ferried me between trains and to the bus stop. Maybe your daughter could manage the luggage a little. And will understand your limitations on the break, talk it through.

I still find my condition gets worse each year so I say take every opportunity you have if possible for holidays, days out etc. as long as you can get some help.

Best of luck. Fi x

LindseyMid profile image
LindseyMid

The aim with Fibro treatment is to try and manage the symptoms so that your quality of life is as good as it can be, ideally that you do not have ongoing problematic symptoms.

But for that, you need effective treatment. Many people struggle to access effective treatment - because doctors are not well educated about Fibro, you need to educate yourself and take control which many people find hard. It can be also be difficult to just access the treatments you need on the NHS, especially non-medication measures like hydrotherapy or specialist massage or ongoing physiotherapy (the NHS doesn't fund indefinite courses of physio or hydro for anyone). And quite a few people struggle to use what treatments they do access - e.g. dealing with initial side effects of medications can be complicated if you are coping with young children on your own.

In mild cases, Fibro can be managed by exercise and lifestyle measures (stress reduction, relaxation, etc) alone. In anything but mild cases, medications and more specialised care are likely to be needed.

If you have multiple conditions, this is going to make your symptoms harder to control, partly because to use targeted treatments you need to know exactly what is causing what symptoms and partly because if you have something that cannot be controlled well (for example, if you had a degenerative disc disorder) then that will flare up the Fibro.

Getting control of Fibro takes time. And my opinion is that the more you have gone downhill before diagnosis, the longer it may take for you to get to a good point.

I hope that explains why your sisters may be coping better than you right now.

Ang01 profile image
Ang01

Hi Penny, I agree with Lindsay that you need to get control of the fibro, it took me a long time to crawl back to where I am now as I refused to give up or give in to any of the effects I was having especially the extreme tiredness. It is quite difficult because there are so many different symptoms with fibro and you need to learn how to deal with each one of them and how to manage them effectively.

I eventually had to give up work completely although I was only 54 and hadn't anticipated retiring this early. However, once I had made the decision and especially now I have managed to secure my benefits etc. I find I am able to have more control over the illness. On the days I feel worse I allow myself to relax and chill as much as possible and only do the things that are absolutely necessary, on other days I lead as normal a life as possible but pace myself so that I dont over stretch myself. Its all about learning what works best for you and acting accordingly. It is difficult with an 11 year old but hopefully you can explain things and they will adjust and work with you.

Take care, love Angela x

fairylady profile image
fairylady

Thank you Fiona, lindsey, Ang01 all your comments have been very usesful. I am sure that I will get my meds sorted out eventually it maybe a bit of a juggling act to start with but its good to know that I will get there. I think the hardest part will be learning to cope with the fatige and learning to pace myself and to accept that somedays I am not going to be able to do much. Its all still new to me I suppose but with all of your help i will get there, you have all been so lovely and helpful so thank you all. What a wonderful site this is xxxx

jazher profile image
jazher

Hi penny,

Its lovely to meet you. :)

Theres not much else i can say that everyone hasnt said, just hope you enjoy this site as much as i do.

hugs, kel xxx

fairylady profile image
fairylady

Thank you Kel, and lovely to meet you too xxx

nadine1974 profile image
nadine1974

hi hunni, im a single mum with 2 kids, which i know is hard enough on its own without health problems!!

if you ever want a chat message me , im here for you!

ps i have fibro, bulging discs, degenerative spine, bipolar,ibs, overactive bladder, intersystial cystitis, anxiety and panic attacks and alopecia, lol if i was an animal i would be put down lol!!!!

dont let anyone get you down! they may not understand, but they dont have the right to make you feel worse/guilty etc, we beat ourselves up enough as it is without others doing it as well!!

lots love and hugs,

nadine xxx

hi penny,im new t the site but let me tell u that u already av loads of friends,their all lvly ppl n sooooo supportive.they cnt fix ur pooly but avin sum1 t let off hot air t or just chat makes a lil diff....well it has t me,try t keep livin not existin,lv fm me xxx

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