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The UKFibromyalgia Forums • View topic - what do you think?



what do you think?

Introduce yourself and find fellow sufferers in your area or who share the same interests.

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what do you think?

Postby Butterfly8588 » Tue Jun 07, 2011 8:26 am

Hi there,
Im not sure if this should be in the introducing yourself forum but i was wondering if i could get your opinions on whether or not my symptoms match any of yours, obviously i wont hold you to it if my dr says no, im just wondering.

OK, im 23 next week and im female. For the last 2 years ive had this 'mystery illness' that has my doctors baffled, it started slowly but has progressed to now having the following symptoms: agonising pain down both sides of my face, jaw, ears, head and neck that regular pain killers just wont touch.

I get a lot of headaches, some at migraine levels and one that left me virtually bed ridden for a week. I get 'random pains' all over my body, legs, arms, stomach, hands, back. im tired all the time, its an overwhelming tiredness that stops me from being able to concentrate/think/function and this is no matter how much i sleep.

i seem to feel pain more then most, my boyfriend can hurt me so easily and he barely touches me and hes not a strong man. im rarely a comfortable temperature, im sat here with freezing cold hands and feet and its not cold in here. im also on anti depressents, i cry all the time, im so down its a struggle to get out of bed in the morning not only cos im so tired but i just dont see the point.

I dont mean to sound as moany as i do im just trying to get across everything i have so you may be able to give a more accurate opinion, the doctors have given up on giving me a diagnosis and are just trying to help me learn to live with it but im so desperate for a diagnosis cos if it has a name it wont feel so scary and unmanagable.

I hope you are all well today,
Take Care
Butterfly xxx
Last edited by denys on Tue Jun 07, 2011 4:20 pm, edited 1 time in total.
Reason: paragraph size
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Re: what do you think?

Postby denys » Tue Jun 07, 2011 4:37 pm

Hi Butterfly and :welcome: to the forum, firstly a couple of things, I've moved your post into where to say heloo as you will get more hits in here and secondly I've edited your post to break it down into smaller paragraphs as one of the things people with FM often find is long paragraphs are difficult to digest :hugs: :hugs: :hugs:

Right I'm sorry you are suffering so much and I know its really difficult waiting to get a diagnosis, but FM mimics so many other illnesses it has to be an exclusion diagnosis. No-one on here is qualified as far as I know to say whether or not your symtoms are FM related or not. Yes some of them are very similar to what we have but again FM is an individual condition so my symptoms may not match anyone elses completely.

Pain is also individual so I may rate my pain a 6 out of 10 and you may rate yours a 4 out of 10 but they may in fact be the same but you can tolerate yours better than me :dunno: :dunno: :dunno: :dunno: :dunno: :dunno: :dunno: :dunno: Stay with us until you get a firm dx as this forum is about comfort and support and we will offer you that unconditionally and there are others here that have no dx yet :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs:
Denys

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Re: what do you think?

Postby Butterfly8588 » Tue Jun 07, 2011 5:28 pm

Hi denys,
Thank you so much for modrating my post, im terrible with paragraphs because i never know when to break them but ill try my best in future :) :oops:
Can i just say i love the amount of smilies you have on the forum, i think they are very sweet and probably the most creative ive seen in a long time.
I apologise if my post wasnt very good earlier, id literally had no sleep from the night before because i was in to much pain to sleep, ive managed to grab a few hours now and although not quite as alert as normal, i dont think anyone would notice :lol:
Thank you for your offer of sticking around thats very kind of you. Do you mind my asking how long you've had Fibromyalgia? and how did you get dignosed?
I hope you are well today, thanks again for your kindness :D
:hugs: Butterfly :hugs:
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Re: what do you think?

Postby FluppyPuffy » Tue Jun 07, 2011 5:40 pm

:wave: Butterfly and :welcome: to the forum :chicken-dance:

With you saying the docs seem to have given up on you, have you seen all the GPs at your surgery, or is it just your regular one that is at a loss at to what could be causing your symptoms?? If it's just your regular one, then maybe seeing a different one might be an idea :dunno: :dunno: If it's all of them, then you may need to see if you can find another surgery to see if they are more helpful.

There's not really much more I can add to what denys has already said, hope you can get to the bottom of what is causing your pain and things :fingerscrossed: :fingerscrossed:


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Re: what do you think?

Postby Butterfly8588 » Tue Jun 07, 2011 5:51 pm

Hi fluppypuffy, :wave:
Ive seen all the drs i get along with at my surgery, 2 neurologists including one at Frenchay and a pain management team. To be honest i really dont know who else to turn to, my drs have been kind to me but they are really confused and i do feel sorry for them in a way cos one doctor in particular has gone above and beyond to try to help me.
Im seeing a pain psychologist this month, do you think it might be worth bringing up Fibromyalgia with him?
By the way when i got accepted i read the post it asked me to on rules and it said something about you must have a profile, how do i go about doing this?
Thank you so much, i hope your as well as you can be
:hugs: Butterfly :hugs:
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Re: what do you think?

Postby ciderpig122 » Tue Jun 07, 2011 6:28 pm

Hi :wave:

After 9 years of misdiagnosis i would push for a referal to a Rheumatoligist, if the GP is useless you can always pay for an initial private appointment then take the letter back to Mr GP and politley ask for Rheumatoligist now, often they will push you into their NHS queue when they see you are struggling.

Its very hard to diagnose (imho) and my neurologist laughed when I mentioned Hypermobility to him, but the Rheumatologist confirmed I was right along with Fibro, thing is when you have suffered for so long the only thing you can do is google for help.

I would keep a diary, I would never have considered bowel issues and pins and needles in my toes and fingers as part of the smae illness and the trouble is most GP's dont either

Write ever single thing you think of even if it seems ridiculous (IE sweating was somethign thats plagued me for years only to find lots of fibro people also have it to extremes) do it on a daily diary, if its EG pins and needles, wrote down if it affects every to and for how long so the experts can say, hang on she has this or the other.

I wish you all the luck in the world, dont give up loads of us are going through it with you and this forumvis awesome!

Just dont have a fibrofog and forget where youhave written it all ahah ! :wine:
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Re: what do you think?

Postby shazq » Tue Jun 07, 2011 6:35 pm

HI Butterfly :welcome: to the forum :wave:

I would keep going back to see your Gp until you get some answers, you could ask to be refered to a Rheumy, alot of GP`s used to send you to see a specialist to get the dx but now a lot of docs do it themselves but mention fibro to your gp and ask them if its worth you seeing a Rheumy.

Hope you get some answers soon. :hugs: :goodluck1:

(to fill in your profile go to user control panel then click profile then just edit it all to fill it in, you can also add a profile pic if you want to. Any probs just ask.)
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Re: what do you think?

Postby denys » Wed Jun 08, 2011 11:17 pm

Hi Butterfly I was diagnosed in 2009 but had been having tests from 2006 and pain probably for years before, my doc finally thought it had to be FM and I was referred to a rhuematologist specialising in FM :wave: :wave: :wave: :wave: :wave:
Denys

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Re: what do you think?

Postby Butterfly8588 » Thu Jun 09, 2011 1:47 pm

Hi all :wave: :)
Thank you so much for your replies, to be honest i dont know if what i have is fibromyalgia and i have this worry of wasting the drs time. I went to A&E once cos i was in so much pain i was gonna do something stupid and they told me (not in so many words) that they didnt know what i expected them to do about it and i should just live with it and stop moaning. I had this phobia of drs before and its 10 X worse now.
Im not feeling to bad today so in my rare moment of sanity im going to just try and stop worrying about what it is and start worrying about living with it. Im seeing a pain psychiatrist at the end of this month so hopefully he will be able to help me learn to cope better.
Anyway i hope you are all as well as you can be and you are all in my thoughts.

Take Care everyone
:hugs: :blowkiss: :hugs: :blowkiss:
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Re: what do you think?

Postby MichelleJ » Fri Jun 10, 2011 5:37 pm

I agree that you should ask for a referral to a rheumatologist. I was diagnosed by one and my docs hadn't a clue what was going on but they did refer me. My G.P has since done alot of research and reading on FM and keeps up to date with everything so she can help me. It's important you push to see one because once you're diagnosed they can better manage your pain and other symptoms as there are drugs that can help.

Don't be worried about making a nuicence of yourself, I think that keeping asking has got me my dx and also the right referrals. I even managed to get my rheumy appointment moved forward by 3 months by pushing. I paid to see a physio and she wrote a letter to my docs saying she felt it was neurological and I needed seeing by a rheumy urgently to work out exactly what was wrong and they should write to him for me asking for a quick appointment. Once diagnosed I then kept going back to get my meds right and made sure they knew how bad I was and got referred to a pain clinic where I now have accupuncture which is helping and also going on a pain management course.

Your symptoms sound similar to mine but as has been said fibro is similar to other things so a diagnosis is important. But the touch thing you mentioned with your fella was the exact problem I had/have and it was hard because he thought I was over reacting but once diagnosed he new I wasn't. Good luck hunni, really hope you get referred and get a diagnosis one way or the other. Just know that something is wrong and its real so don't accept being written off or given up on. :goodluck2: :hugs:
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Re: what do you think?

Postby efrem » Sat Jun 11, 2011 9:14 pm

hi butterfly,welcome to the forum.i to have not long joined myself and have found it to be brilliant.you can moan,chat and everybody understands what you are going through.as you are finding out with the docs you feel like you are not getting anywhere.you need to keep on at them.it took us 12mths to eventually get a dx(seeing different docs,until one listened and sent us to a rhuemy).the next job was to find out what fm was all about.the one thing you will read is that you have to learn to pace yourself and not to over do things and burn yourself out.this i found was hard to do as my brain keeps telling me that you used to be able to do it in a day not a week.try to keep smiling.take care,efrem :D :penguin:
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