Hey, I was diagnosed with fibro about a year ago after being told that it was growing pains and being told countless times to go away and stop wasting valuable doctors time until I was admitted to hospital being unable to move because my knees and hips just locked and refused to move at all. I've been put on amitriptyline, taking 40mg every night and I'm taking co-codamol (the strongest ones you can get) and have just been put on gabapentin because the co-codamol were doing nothing and I was having to be given beupranorphine (morphine) in orger to manage the pain in any way. I can't even sit down for more then about half an hour without my back feeling like it's on fire, seizing up and just being down right agonizing,
I am still waiting for a physio appointment for the second time because the first time I just couldn't hack the pain.
I just don't know what to do to manage the pain, I've found that music helps with the depression and mood swings but I really need help with trying to deal with pain, depression, and general fed-up-ness!
Does anyone know of any 'methods' that can help me in any way? :/
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Berthy
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hi not sure if I can help only to say everyone on here understands what firbo is like I am waiting to go to pain clinic not sure if it will help but hey I will give it a go you are young at 17 bless you do your friends understand sorry I can not be more helpful to you it is a bad day today you know what with this firbo you got to make the most of your good days that is the only advice I can give you sweetheart I DO understand how you feel my son is nearly 16 and suffers with seizures and is unable to go out on his own I do hope you feel better soon take care love & gentle hugs love beth xx
God no! They just assume I'm being fat and lazy. And I feel so terrible turning down invitations to go out and go shopping or something because if I stand up for more then about 10 minutes my back feel like it's on fire and I'm on the verge of tears (which also bodes well in college - being an art student and needing to do still life against easels all the time) and they just don't seem to understand that after looking around one shop I need to sit down for about half an hour - which being teenage girls, they obviously don't want to which I can accept fairly happily. It just upsets me when they think I'm trying to avoid them when I turn down invitations and such.
I've noticed I'm pretty young compared to most on this site and other people I've come across online that have fibro, I've had it since I was about 12/13 but was diagnosed properly last year but on the bright side, I guess it could be worse.
You may not think you've helped, but just being able to talk to someone that can actually say they understand or they're sorry for me with the knowledge of ACTUALLY knowing what I'm going through helps a hell of a lot more then you might think. (hope that made sense xD)
I'm sorry to hear about your son by the way, I hope at some point he can become independant and gain control of his seizures, I really do. I know how much not being able to go out on your own with your friends at that age effects you...maturity wise and by way of a social life. The internet has a tendancy of becoming your friends and you can live in your own little world, it's rather nice sometimes.
Awwh thankyou! And the same to you darlin' here's to hoping for a cure at some point? :)<3 xx
hi I told you bout my son because of the 2 year gap so that you know that I understand you as a young person as you said above you are young but the freind thing I UNDERSTAND only too well I do have 1 freind that understand better than the others I have other health issues as well as fibro but as catsrule said below it is the fatigue that I FIND HARD well you take care love beth xx
Yeah, I've one friend who tries her hardest to understand but bless her can never really grasp hold of it all when I explain how it effects me but I know she's trying so that's all that matters really.
Hope you find a way to deal with everything better soon, thanks Xx
Hi, I try not to take lots of medication for Fibro as I have a 5 year old son and I obviously need to be coherent for most of the day! Having said that it does leave me in lots of pain. The pain I can manage really its the fatigue that I find really hard to cope with after being diagnosed 6 years ago at the age of 37. I do belive that my "Pain Gone" pen has helped with the pain. You can buy them from Boots but I actually got mine on ebay. If you do get one make sure its a real one and not an imitation. It is completely natural and it sends signals to the brain to block out the pain. Read up about it and see for yourself. I have tried lots of lotions and potions over the years and in fact went out in my lunchbreak today and bought a magnesium spray from boots for £8.9 which I have read good reviews about so we shall see. The big thing is to pace ourselves and I don't actually know how to do that! There is always so much to do. Take care and fibro hugs x
Thankyou! That sounds like a really good idea, I've looked the Pain Gone pen up on Amazon and I can get a mini one for about £15 so I might have a go, it genuinely sounds like a good idea and something I would probably use an awful lot.
I'm the same with pacing myself, I always emnd up regretting doing pretty much everything I've done half way through a day because I end up sitting down and unable to move, sounds strange but it's almost like you forget, if that makes sense?
I'll certaintly try the magnesium spray too, thankyou Likewise <3 x
Hi Berthy, sorry you are not a happy bunny with how things are and how you been treated with things
looking at what you take and what you take for like any fibro suffer it is about finding something suitable to suit your body and you and if it takes umpteen different meds to get it rite then that is how it is you should never ever sit back and put up with the problem because that will not help you at all.
I am no medical expert and only go on experience and what bit of knowledge i know.
a lot of us are on a combination of meds to deal with different things.
Is Amitryptiline the 1st med you was tried on and is it being used for depression or nerve pain as it is used for different things and does not suit everyone over 20yrs i have experienced this drug twice in my life and it can make for a short while the symptom your treating more obvious for a while and then it should go away.
Sme ppl can handle if very very well and some do not (i do not) you do not want to feel more depressed than what you originally asked your dr to help with.
I was given amitryptiline originally years ago for depression but working in a busy job and a busy mum life it made me a Zombie, so changed .
On this occasion it was given for nerves! to relax them stop them talking to one another.
zombie again and just could not be bothered and again diff job very active on the go driving and full time mum (no good) but it was side effects that were bad.
Gabapentin i also tried that made me ill (on the sofa alll the time)jsut felt rough! so changed again and at the moment am stable but with some side effects involved but you cant have everything but i have half a brain now thats stays awake lol.
Pain relief there is a variety for us sufferers to take and everything does depend on your health and of course what you mix it with.
At the moment to try cut short on this
I take Lyrica -pre-gabalin (magic to me)
Co-dydromol as none of the others mix with lyrica for me ..i can have either codeine or Tramadol with lyrica so it is safe but only obviously if prescribed by your Dr.
I will go on as long as i can before i ask for injections as i can cope at the moment (except on flares nothing works)!!
i take beta blockers too and have gastric problems and BHMS, so it can be hard to distinguish which is causing what.
Diazepam for neck muscle spasms.
beupranorphine?? are you still taking this .as generaly used for withdrawal or after an operation.
Getting a balance rite is quite hard.
i had to go through different things to get it maneagable lol
It is hard to know which one is the one causing most of problems unless its the newest one and sudden things occur a lot more often .
Sorry you had not very good Dr's to help you along the way as sometimes you can be shoved out the door and it is only when you in A&E and the proof is there your paid attention to.
A lot of ppl out there also do it for time off work or claiming benefits, so it makes everyone suspicious. But at the end of the day WHY ON EARTH would you go faking a problem ???it so frustrates and make me mad.
I would go and maybe ask about the Amitryptiline and gabapentin if you are not happy with the depression or pain and how it is making you feel.
Hope you do get sorted out soon and yes i know i talk for ever and ever lol .i was never blessed with a simple phrase hehe xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
No, no don't apologise for talking forever, for one thing it gives me something to do and for another I like reading!
That was an incredibly informed answer so, thankyou I only ever take the morphine in extreme circumstances and get it from my dad who suffered a swvere back injury before I was born when in a car accident (he was a rally driver so I'm sure you can imagine the mess that occurred) and he's on everything from tramadol to morphine to paracetamol and gabapentin, every day so really I'm on nothing compared xD
My 'family doctor' just kept telling me to go away and deal with it essentially, she gave me a minimal amount of co-codamol every month and told me to make it last or I'd have to go without (fortunately my mum is on them as well and if I REALLY needed to I could nick a couple of hers every now and again) But I went to go and see a new doctor in a slightly less local surgery the other day and he was the one that put me on Gabapentin so, here's to hoping I might get some sort of a positive reaction out of it!
I'm on amitriptayline for depression and to help me sleep and to help with managing the pain, I find it helps mainly with the sleep, despite the fact I am still ALWAYS tired.
I've found that being on co-codamol as my only real pain relief has presented quite a few problems with either being in pain whilst out with friends, away from home or especially at college, I'm forever either missing college through not sleeping from the pain and taking them in the early hours or having to take them throughout the day and passing out in a classroom so being sent home! Or through not being to get out of bed because of the agony in my back hips and feet/ankles.
I can see you've been through a long list of pills but I'm right in the beginning of my journey through medications and my fight for DLA and stuff, but I'm sure I'll go through just as many and keep fighting for more recognition and such
Might sound silly but thankyou for the long message, it really cheered me up, I'm easily pleased
Simple phrases really never do it for me anyway, I'm always after more!
If you knew my personality i am described as bubbly, and very giggly.(that was prob more annoying tgan how i am now) lol but i still have a good laugh i just do not really socialise so much since i feel like a Voodoo doll'!!
It can really take it out of you and i feel for you i do as i do all the others on here.
Your Dad has had a whack ! How does he cope?
Saying that end of day we learn to live and cope with changes i guess as we are Thank ful for still being here but not thankful for what it gives to us in return in some ways if i make sense ( what did any of sufferers do to deserve this)
I just watched Mrs Browns boys as i had a moment (a long one ) had to lay down as felt so yuck !! (ladies things too) but i turned over the chanel and that made me laugh so much so feel better for laughter i can still have despite how we deal with what we do.
I lurrrrve to talk !! I txt my dad or mum most of time as i think as much as we love each other my phone gets hot, my fingerd go numb, my mouth starts seizing up and then i need my bed from talking about nothing for nearly 2 hrs a time! hehe.. Actually nooo am not that baaad i have quiet moments and thats when everyone starts damping my forehead .
It is so nice to beable to communicate with others in very much similar situation as we understand what it feels like !
You get those that not ill talk about each other (ohh did you hear about what she did other nite)
You get us that say ohh has anyone tried that drug or that drug and ohh anyone had wrestless legs or spasms etc etc .
Much better than gissip haha.
Well i do hope this otger Dr sorts you out and that gapapentin wrks for you !
Theres so much more i want to say but somehow i am seeing through fog at minute lol
I am always alll ears and a shoulder and an inbox anytime xxxxx
Oh I'm the same! I just manage to come across slightly less ditzy through writing and words
Yeah, I barely ever go out anymore and especially because of where I live (the nearest town/friend is 30 miles away) so no one can get up here to see me either :/
I won't lie, he doesn't really, my family - baring my brother - are all disabled in some way, my dad because of a back injury, my mum with suspected fibro and parts of her brain that are attacking themselves and dying and me with diagnosed fibro.
I'm fortunate that my family relationship is very much a group of friends that banter and joke about everything possible, ripping the piss out of anything pissible really (only where appropriate obviously) and so we all make one another laugh every now and again and at the dinner table it's so hectic it's just down right hilarious, I love them, I'd be nothing without them
Awwh I'm pretty much the same! I'm constantly texting and on the phone at any opportunity, I like texting people more though because it gives me a chance to just not have to physically laugh and be able to laugh inwardly (if that makes sense?) Sometimes it just feels good xD
I more then agree, it's helped me more then talking to my frinds about it ever has and I've only had an account for 2 days!
It's our own little fibro gossip
So do I, believe me! I think I'm getting some adverse side effects though, hopefully it's just been a coinsidence but, only time will tell
Sorry you're having such a hard time right now. How old are you now? I know a lot of younger people with Fibro struggle even more to get diagnosis and treatment for various reasons. I developed Fibro when I was 21 and I was told everything from "you might grow out of it" to "it's getting older"!
Have you ever been assessed for hypermobility? It can affect children and young people badly - I started having back and knee issues related to hypermobility when at secondary school and I now know that my hypermobility causes a lot of myofascial pain for me.
This site has good information about hypermobility syndrome: hypermobility.org/
If I were you, I would stick with the new GP who sounds far more helpful.
I got diagnosed when I was 16 and I'm 17 not (18 in about 2 weeks) but I was being told from about 12 that it was all just growing pains so I'm assuming it was fibro right back then as well but it was kinda a relief to just be told I wasn't going mad or imagining it all!
Thanks, I'll take a look I've never heard of hypermobility but I'll look at that too, thankyou
My best wishes to you - it is hard enough being a teenager without having to deal with Fibro as well .... my response to Fay may well apply to you too (Okay I'm saving myself typing, perhaps I'm not as stupid as I look after all lol)
Hi, 17 yrs old!!!!!, that's young, you sound so grown up and mature, you've come too the right place for advice and help,, I've just started taking duloxatine and seems to be suiting me , I take codeine as and when I need them, I'm quite good with pain, but not always so I do use meds when needed, I just hope you get treated with the respect and Dignity you deserve as it can be difficult but your new doctor sounds like he talks sense, hope you have some good friends to support you, and like me a good sense of humor, most part, is the best tonic
I've always been "old before my time" as it were, but I aprechiate being told so, thankyou!
I really hope he's not just another one that will loose interest after the fourth or fifth appointment (as previous doctors have done so) but - only time will tell on that front. I really hope that the dulocatine continues to help you
Oh yes, my sense of humour had got me through an awful lot more then just my diagnosis so far and it's not disappeared through many difficult circumstances so it appears I'm stuck with it, however twisted and interesting
Ive just read fays blog and put a little message on it too, you are both so young but hopefully you are finding all the help and advice available on here is helping you cope. Definitely stick with the understanding Doctor and there are a few bits and pieces on here that you can use to try and explain to your friends, just do a search. I am sure a lot of them will be only too happy to help if they know what you are going through xx
try groovy food company, organic virgin coconut oil, you find it in tesco in small jar, by the cooking oil, cost about 5 or 6 pounds and look,s like lard, lovely smell, one tea spoon morning and same later in afternoon, been using it week and it,s helped my pain, xxx
also you can use for cooking and spreading on bread, I was told about this ten day,s ago and I had not bad week, fibro pain still there, yes it does make you lose in the bathroom bit, but I okay now and coping fine x
Hi all i suffer with depression and mow fibro and its driving me mad the pain even with all the tabs i feel down really low itd affecteing my hole life i dont want to go so low down as i have been in a black hole not a mice place to be i feel for all of you hugs to u all xxxx
I know how you're feeling, I was diagnosed with severe depression before I was actually diagnosed with the fibro so I'm not entirely sure if initially they were linked but now I'm just about positive they are....it's something that most people that I've encountered with fibro have as a 'sife effect' of the fibro for lack of a better term...one thing I was told to try and is like a MIRACLE for the pain is something called a Pain Gone pen, type it in on amazon, it's about £40 for two of them and they are more then worth their weight in gold, the pain just disappears and when I used it when I was out yesterday I used it when I was first starting to hurt (the main pain for me is in my lower back) and I basically gained another 3 hours in town that I otherwise wouldn't be able to have endured!
It's completely natural and it like a tiny tiny electrical charge that releases endorphine inside your body that help stop the pain and like I said, it's like a miracle! xxxx
Hi berthy wow that sounds good i not long got up from having a kip and im in so much pain i could cry my eyes out waiting for my phone to ring going to ask doctor to send me to a speccalist thanks again yvonne xx
Ugh I've been fighting with my doctors for months about sending me back to the specialist - they just won't refer me -.-' I really hope you have better luck hun :)xx
Well, I hope you have better luck with your referal then you did, I've been to four different doctors in the past month all in different surgeries around my area and NONE of them are willing to refer me, maybe repeatedly smacking them round the back with a baseball bat all day might help them realise quite ehat I'm going through and urge a referal on? We can but hope!
Hi Berthy, I'm sorry to hear how things have been for you The Mini paingone you mentioned above are only £4.95 at freepainrelief.co.uk i have ordered one but yet to try it out. Hope this helps. Let me know how you get on.
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hehe.. Actually nooo am not that baaad i have quiet moments and thats when everyone starts damping my forehead . 
The Mini paingone you mentioned above are only £4.95 at freepainrelief.co.uk i have ordered one but yet to try it out. Hope this helps. Let me know how you get on.
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