Fibromyalgia Syndrome

Hi Laura

It is really difficult having fibro but with you being so young must be more difficult for you. :cry: When all your friends are going out having a good time you are left behind. You are right only other people with this condition can fully understand what it is like.

I am Tess and 52 years old. I have been diagnosed with fibro since June last year but feel I have had it for about 8 or 9 years. Even now I am still trying to take each day as it comes. I can understand how you must be feeling with being so young as well. My daughter doesn't have fibro but when she was 13 was diagnosed with crohns disease. This is an entirely different illness apart from the fatigue. But I could see how it affected her with her school work and social life. It really took its toll on her but I am pleased to say she is 23 now and has her condition under control. Like fibro it can get better for a while and then come back. Its is a very difficult time when you have to go to college to pursue a career. My daughter didn't let it hold her back and is now a trainee paramedic. :lol:

I know everyone is different but just wanted to give you some hope that things can get a bit easier.

We are a friendly bunch on here as well as me there is Ses, Linda, Di, Lindy, Helen to name a few who are often on and will offer you support to. :lol:

Please don't be alone with this and is there is any questions you want answering one of us is sure to know. I hope this has been of some help to you.

Love Tess x x

[b:c301407901]Thank you for replying, it is lovely to meet people who i can talk to your completely right with my college work and social life its hard to keep up, but im a fighter although from time to time its very painful and the pills dont help at all but its something you have to deal with isnt it.

Im glad your daughter is able to move on from her illness and intend to do the same, i just need someone to talk to and get advice about the condition.

Talk soon

Laura xx[/b:c301407901]

hi laura

Im diane im 45 with 3 teenage children... im so sorry u have fibro, u are so young, i worry about my 15 year old kerri she has symptoms of it so im just watching her at the moment..

Any way..... we are a lovely lot in here we come on here we moan we scream but most of all we are here for each other.. sometimes we just come on and talk about our lifes, then complain how the effect its had on us... i will come on later just going out to visit a good friend with my family tonight so will come on for a wee chat..

take care di xx

Hi Laura

It is good to hear that you are a fighter. Don't let the illness beat you and take over your life. :cry: Like Di said we are all here and will support you.

We do talk about other things as well. So if anything is worrying you come on and chat. Its not all doom and gloom we do have our funny moments to. :roll:

Keep fighting and I hope your studies go well. What do you want to do at the end of your studies. :lol:

Love Tess x x

hi im sarah and am 35yrs,and a mum 2 2 children 16yrs and 5yrs, i was diagonose with fibromyalgia 3yrs ago,after feeling like a hypocondriac for a year with multiple syptoms that my gp kept trying 2 pass off as a viral infection,i thought i was going 2 die with all the sypmtoms that i was experiancing it was horrible,and even since i have been diagonosed i still have nights where i go 2 be and think im not goin 2 wake up in the morning as i feel so bad!!! its hard trying 2 explain 2 family and friends as we may look alright on the outside but feel absolutley crap on the inside!! I was told that i was young 2 have this condition it must b really hard to have it at 17,i also take 100mg of amitriptyline a nite,i used 2 have sleeping tablets as well to try and get me bck in2 a sleep routine,then they took me off them as they said i was 2 young 2 stay on them,i also have dimazepam as i suffer alot of panic attacks brought on by the illness,i also had physio and a 6wk pain manegment course not alot of help either!!

I had 2 give up my full time job as a nanny which i found hard,as im a on the go person and find it hard 2 stop,its been difficult trying to learn 2 pace myself to slow down a bit,but if i dont and overdo it i end up having a panic attack which i think is my bodys way of trying 2 tell me i have 2 take it easy. I have returned back 2 a job 4days a wk shorter hrs,i manage but often feel exhausted,my way of describing this is like having bricks tied 2 my muscles and limbs which feel like thet are pulling me down,i experiance most of my pain at the bck of my neck which is a killer it feels like someone has karate chopped me across it,i also suffer in my chest,sternum and armpits,i used 2 think i was having a heart attack b4 i was diagonosed,i find a surgical collar helps my neck pain,sleeping with a v pillow at nite wedged in2 the bck of my neck and heat pads seem 2 help other aches and pains,my gp did prescribe me diclofenic tablets for the pain but dont really like 2 use them unless i have 2.

I was disapointed when i saw a rumetologist who confirmed my gps diagonosis as when i asked my gp why i had not been back to the consultant he just said,all they could do was confirm my fibro and that i just had 2 learn 2 live with it,GREAT LOT OF HELP !!!! so thats what ive had 2 do and i imagine everyone of u have had 2 do the same thing.

Hi Laura and Sarah and everyone else,

I`m Linda age 56 with two grown up children who seem to refuse to leave the nest :!: I`ve been diagnosed with fibro for just two years now, but like most people feel its been going on a lot longer than that. I take a very low dose of Amitrityline at night, its an anti-depressant as well but not at such a low dose. Its used at the low dose as a pain killer and to help with sleep. I suffer dreadfully with chronic fatigue and find it really hard to cope with. I finished work almost a year ago and still haven`t got the pacing thing right. I also find it hard to accept that I really have got this illness and on good days I think well I`m fine today it really is all in my mind, go mad and try to do things I used to be able to do and then suffer for days after because I`ve overdone things :!:

I am fortunate in that I have a fairly good GP who referred me to the rheumatologist straight away but like you they just confirmed the diagnosis and discharged me into the care of my GP I know it feels as if the professionals don`t care about us and that all GP`s seem to treat in different ways, but I really don`t think there is a standard treatment we just have to go along with what seems to suit us best. There are some people who, after several years don`t find anything that helps them,, but there are also people who can carry on an almost normal life and continue to work. That is just the nature of this beast unfortunately.

Well, must go now, do keep coming on here to chat, scream, moan or whatever you feel like, we all do all of those things sometimes, the main thing is we have each other and coming on here has helped me an awful lot.

Love Linda

thank you all for replying, i am going to definately sign up for this, its just what ive been looking for!

someone to finally talk to, haha

I am a fighter, i hardly ever let it get me down, unfortunately for me it does get hard in the morning getting up and what not, but i do try to think of it in the long run, i have a boyfriend that looks after me and a family that half understands.

I want to become a Drama Teacher At the college im currently going to after my studies. with a bit of determination i will get there (haha sorry if my spelling is totally wrong haha)

Im happy but i do have my odd day where i cannot help but breakdown because some days it gets so hard to carry on, i just think oh gosh why me? Why this much pain at such a young age. But ive had to live with it and ive got to carry on living with it.

Ive just recently been able to calm and relax myself which is hard to it as my dad is disabled and my youngest brother is ADHD i have to care a lot for the both of them as im like the mother in the house. It gets had but now ive got someone to rant to i'll but much happier!

Talk soon Love Laura x

Hi Laura

Bless you! No wonder it get you down with all the caring you do for your dad and brother. :cry: I am sure they do appreciate what you do for them but it is even more difficult for you with having fibro as well. Its not surprising you have days where you get really down. :cry: You are so young to have fibro and being a carer as well. It is good you have a boyfriend that understands and takes care of you. :lol:

Like you say you are a fighter and you need to be with everything you have to deal with on a daily basis. You sound very determined to do something with your life. Do go for your dream of being a drama teacher.

With support you will get there. Don't let this illness take that away from you. You have your whole life ahead of you and deserve to enjoy it! :lol:

This is a very good website to come and talk on and has really helped me as well. My family are very good and try to understand but unless they have a on going illness that won't go away they can't fully understand. My daughter who has crohns however is the one that does understand more having to deal with an ongoing condition day to day. Her dream was to be a paramedic one day and an ex boyfriend of hers said she wouldn't do it.

She has prooved him wrong and now going out on the ambulances and doing her final study to become a paramedic. She also in 2007 climbed Mount Kenya and went out to africa to help build a nursery while she was there. Not long after she came back though there was a lot of trouble where she was staying with fighting and killing etc. All though it was dangerous at the time she did achieve what other people told her she would never do because of her illness. It did take her a good few years but she did finally reached her goal. :lol:

If no one replies on this page of yours, come over to the other site where there are about five pages where we probably all be chatting. Don't be alone. Eventually one of us will start a new page so just come on. :o

Hope you are not in too much pain today.

Love Tess x x

Hi Sarah

I was like you kept going backwards and forwards to the doctors with different things but this went on for over 8 years. I knew I had OA at that time in my big toe but felt there was more going on than just the OA. It wasn't until I changed my doctor at the practice that he took more of an interest in me. :lol: If it hadn't been for him doing all the tests and sending me to see the rheum I feel I wouldn't have found out what was going on. I only saw the rheum once more after I was diagnosed and then they discharged me. There isn't any more they can really do apart from explain the illness to you and give you the relevant booklet etc about fibro. Thats what happened to me. Really now if I have a problem with anything I go see the gp.

I take 10mg of ampytripline at night to help my sleep. Not too sure if it really works it might help. It has helped the irritable bowel though and made that a bit better. :cry:

Do come on a chat if you have a worry. There are a lot of us that come on Ses, Di, Helen, Lindy, Sue, Linda, Laura and yourself.

Love Tess x x

Hi Ses, Linda, Di and Everyone!

Thank you my appointment went ok. Apparently when I saw different doctor last time he shouldn't have discharged me :cry: I do have to go from now on every year for the rest of my life. This is because the thyroxine I take is a higher dose and has to be watched with blood tests closely to make sure if doesn't get too low to let any cancer cells form. :cry:

Saw my consultant who did my operations so feel more reassured now. :lol: Although the mix up should never have happened. :cry:

Thank you all for your support. :lol:

Had a bad night sleep last night with restless legs and for the first time had to take some pain relief overnight.

On my own overnight as Stewart is on nights. Should have been on nights tomorrow but with going to party has managed to have night off. But back on nights again for one more on Sunday until his next shift of nights in a couple of weeks. :cry:

Hope everyone is as well as they can be. :lol:

Love Tess x x

Love Tess

hi everyone havent been on 4 a while,lots going on as per usual which in turn have made me ill over the last few months with 2 a&e admissions where ive overdone it yet again when will i learn!!!!,the last one a few wks ago was one of my worse i think, ive never been in so much pain that it made me physically sick,a few hrs in a&e helped with morphine anti sickness and a pain killer drip helped,felt rubbish for the nxt few days though,felt quite down that it had hit me so hard,as soon as the pain in my neck starts now i know its time 2 stop!! easier said then done its so hard 2 control,oh well carry on as usual til the next time,hope everyone is getting through this as best as they can,catch up with u all soon xx

Hi everyone I'm new here, I'm not even sure I'm posting in the right place.

My names Toria and I'm 24 I've been diagnosed with fibromyalgia only for a couple

Of weeks now but I've been suffering for about 7 years.

I feel relieved that I know now because it was all getting too much, at the

Same time I'm not sure how to go forward. No one around me gets

Me at all they have no sympathy an I often feel as if

They think I'm exaggerating about it all an I'm just lazy but honestly sometimes I feel

Like a spell has been put on me an I can't help but go to sleep.

It will be really nice to speak to others who know what it's like xx sorry it's all over the

Place I'm trying to do this on my phone it's not easy lol

I

Hi toria1,

Yes FM is a pain (sorry no pun intended) but apart from you having to put up with the pain and what the meds do to you you also have the problem of looking healthy! I found printing out some of the notes on sites like this as well as NHS as well as the side effects of any drugs your on can help when given to people at work or home. Also I find that giving one to people who are less understanding just after you ask them for their medical degree helps me as it shuts them up and I fell better for a while. Hope this helps and if you haven't already asked see if your area has a pain management service.

Best regards

Dear friends I have been reading how terrible you feel with this condition "fibromyalgia". I am no 75 years old, male, living in Sydney Australia and I have been in constant pain since my teenage years. I was taken by my parents in those days to several doctors who couldn't diagnose what was wrong with me. About 20 years ago after several blood tests by a Rheumatologist I was told that I have "Fibromyalgia" and I was given NASAIDS which did not help at all with my pain. These days I take TramalSR1000ne tablet a day which aften works and when I get very bad periods of pain I have been prescribed Prednisone 5mg to take 1 tablet in the morning for four weeks and than reduce to half a tablet till pain subsides. I find that I am coping very well with this dreadful disease.

Hi everyone,

I'm Doris from Gdansk (Poland). I was diagnosed with FMS 3 years ago after 15 years of looking for an explanation for my chronic pain, tenderness and fatigue. Here in Poland we have no clinic, no specialists or professional help so I had to work it out with my wonderful GP. I take Poltram, which is a combination of Tramadol and Paracetamol. I also keep a wheat-free diet, exercise on a regular basis (moderately as too much effort triggers pain) and try to stay positive. I work full-time as a freelance language teacher, socialise and have a normal life. I have learnt that the key to managing FMS is an organised everyday routine. Gentle hugs to all fibro-people!

Doris