I have been told the truth : Fibromyalgia doesn't exist

All your fibromyalgia experiences, questions and answers.

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Re: I have been told the truth : Fibromyalgia doesn't exist

Postby spencebel » Sat Jun 23, 2012 2:42 pm

Same here, gp i saw last week told me that because my Vitamin D levels are low, on tabs for it now, that when my levels are back up i will be fine. My reply i have had pain for the last 12yrs, did not find out till Feb this yr from rheumy, gp's reply to this "They did not do Vit D levels blood test, that far back......................................I came out confused, angry,upset...
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Re: I have been told the truth : Fibromyalgia doesn't exist

Postby wobblycat » Sat Jun 23, 2012 2:49 pm

Hi Kat ,just read this post&last nights post under doctors &health services so really feel for you after your visit to the pain clinic.Ican fully understand why you have written this.

The fact is there are no agreements nationwide between health professionals i.e gps ,rheumys.neurologists,physios &painclinics overany aspect of fm &it is the luck of the draw who you get &if they can help you.Chronic pain treatmentis poorly funded &often unsuccessful.Fm is often used as a label when the cause of chronic pain cant be found.

Ihave had fm symptoms for over 25 years butonly got dxd last year despite seeing several different rheumys in different areas(move around a bit!)Like you I attended the pain clinic this week&am being offered pain management(some form of counselling, physio,etc.plus an epidural as I have sciatica which is believed to be caused by a disc problem.

Ithink you are lucky to be offered an in patient pain management course as this is not common but it may be difficult for family reasons.I
I have noticed all the medical problems you have at the bottom of your posts most of which would cause you some on going pain & over time your nervous system becomes hypersensitive giving you more pain . Isay this having worked in the nhs for many years as a hospital pharmacist.

When I attended the pain clinic the doctor told me that in her experience fm sufferers never get any help from medication just the sideeffects.Another person being told this may have been upset by this comment but not me as this is how Ihave found things to be &Idont take any medication.We are all different but most posts on here suggest at best drugs just take the edge off the pain& long term side effects can be very serious-liver ,kidney.addiction problems etc

Try not to be tooupset by the doctor in the pain clinic -their explanations&people skills are appalling but I hope you willbenefit from pain management(ihope this for myself).Remember you have enough physical medical problems to justify the pain you have whether you have fm or not. :hugs:
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Re: I have been told the truth : Fibromyalgia doesn't exist

Postby Erin E » Sat Jun 23, 2012 3:19 pm

Well I actually do not take any prescibed meds for the FM. My sister does and still gets it..my friend does and still lives on disability pension so the meds dont seem to work anyway. I do take a number of supplements..... and I am sure you all know about them.....and use meditation to help with the pain management. doing my best to keep my stress level under control does help when i am successful. I have also just been diagnosed with Hashimotos Disease and have been told it just might, could possibley, that there is a chance, that it has contributed to me acquiring FM. Whatever.....the thing is i dont believe the doctors and do my own research and do what i can to manage it as best i can. Some thing work for a while then it is back to square one again. But I refuse to let it rule my life....i truly wish it was all in my mind coz maybe then i could do something about it.
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Re: I have been told the truth : Fibromyalgia doesn't exist

Postby suenew54 » Mon Jun 25, 2012 5:37 pm

Well im gobsmacked. i wish i could get out of bed pain free, have a great day. fibro stinks we all hate it and we are not frauds .lets hope one day you will know our pain see how you feel.
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Re: I have been told the truth : Fibromyalgia doesn't exist

Postby fibrobilly » Mon Jun 25, 2012 6:03 pm

If it was all in the mind, our brains must be superior to those who do not have this dreadfull illness, if so I can ensure you I would put my brain power to something far, far better than feeling like a bag of ----- every day. :nono: :evil:

Take care
John
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Re: I have been told the truth : Fibromyalgia doesn't exist

Postby Adam 1972 » Tue Jan 22, 2013 1:25 pm

I have had fibro for most of my life and I never knew what it was, I have being called a hypochondriac, that I have health anxiety and I am over sensitive by at least seven doctors. Now I am forty and I am no longer stressed that I have some terminal illness causing these very strange symptoms. I have had only had 10 days off work in 24 years, I have a wife and two kids ,no worries in my life apart from the constant pain, but the pain is not as bad for me as doctors telling me that I am making it up. I have actually thought I had cancer on more than one occasion (Brain, Bowel, and liver) this is frightening especially when no one can give you an explaination for the IBS, nightmares,sweating,nausea, etc and headaches that feel so bad that the back of you head is going to burst open.

This Christmas however I was really run down and it hit me hard and I got all the symptoms at once, and now after all this time I feel free even though I feel awful.

I do not doubt that there are people that fake symptoms and there are people that like to ridicule when you feel like you just want to cry and for the pains, shivers, fatigue and nightmares to go away.

I am naturally a cynic but ask me if Fibro exists there is no doubt in my mind and if you have got it I hope you manage, and if you fake it or doubt it I pity you.

My life began this Christmas!
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Re: I have been told the truth : Fibromyalgia doesn't exist

Postby denys » Tue Jan 22, 2013 2:36 pm

Hi Adam and :welcome: to the forum :wave: the original poster is not saying she believes FM is not real, she was in a very bad place when the post was made and if you follow the link she has added you would see why the post was made.

We all know its real, we live with the pain and other symptoms daily and the consequences of the other symptoms and side effects
Denys

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Re: I have been told the truth : Fibromyalgia doesn't exist

Postby simples77 » Wed Jan 23, 2013 10:36 pm

Can I ask who told you it doesn't exsist? :-)
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Re: I have been told the truth : Fibromyalgia doesn't exist

Postby denys » Thu Jan 24, 2013 1:24 am

Her Doc
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Re: I have been told the truth : Fibromyalgia doesn't exist

Postby Patched » Thu Jan 24, 2013 2:46 pm

I think Fibrobilly made a good point, and got me thinking that perhaps if all our aches, pains and everything else that goes with FM is all in our special FM minds, well...... maybe we're all missing a few tricks here. My symtoms are pretty darn tooting real to me, as are I'm absolutely sure all other victims of FM. So if we are only imagining our pain & fatigue etc as being this real, perhaps we should all start imagining ourselves as young, healthy lottery winners! Worth a try anyway. LOL. If we could conjour up our realities just like that, well, we'd still have the aches and pains etc but we could at least suffer in luxury.
Doctors are just human beings like everyone else (yes, even the ones who think that they are demi-gods) and like everyone else on this planet there are 'good' and 'bad'. What makes them 'good' or 'bad' isn't all about their ability to cure all ailments, or mend every broken bone. It's also about how well they treat their patients with dignity & respect. I believe there are many who are sadly lacking in the 'empathy department' and who are probably just as obnoctious & self-opinionated in other aspects of their personal lives as they are in their professional lives. We at least have the option to change or seek out a more empathetic doctor. Whereas they are stuck with themselves for their entire lives.........poor devils!
Fibromyalgia is definitley real.

I do my thing & you do your thing. I am not in this world to live up to your expectations, and you are not in this world to live up to mine. You are you, and I am I, and if by chance we find each other, it's beautiful. If not, it can't be helped. (Fritz Perls, 1969) :-| :crazy:
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Re: I have been told the truth : Fibromyalgia doesn't exist

Postby Katblack » Thu Jan 24, 2013 9:11 pm

Just wanted to say a massive THANK YOU :flowers: to Denys for your support in this thread, I really wish other people would read the whole thread before flipping out at me though :( makes me feel even worse about myself and my situation

Could my original post possibly be edited to include the link to my other thread that I put on down the page? Might stop people from getting so mad?
Kat x

Scoliosis, 2 major spinal surgeries, DDD in neck and lumbar spine, Spondylolisthesis, HMS and now FM!
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Re: I have been told the truth : Fibromyalgia doesn't exist

Postby denys » Thu Jan 24, 2013 11:53 pm

will do Kat and add a little explaination that it isnt you who believes this :crazy: :crazy: :crazy: :crazy:
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Re: I have been told the truth : Fibromyalgia doesn't exist

Postby Flash » Fri Jan 25, 2013 12:22 am

:flowers: I think some got the wrong end of the stick, I was going to respond before but some of the other posts were a bit too hot. I know where you are coming from and why you wrote it. I wrote something similar but deleted it quick. Good on you for posting it.

I also read the link, so yes, I do know that you are not attacking the condition or fellow sufferers. You have just highlighted the fact that 'The Powers That Be' are attacking us all. You vented your frustration after such an attack became personal. I get that!

It's hard enough not being believed by the outside world, I know. It makes me angry when I read reports or get told by a docter that the condition doesn't exist.

We are all together on this, or at least, we should be... Take care and I hope you have found a GP with better understanding. :hugs:
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Re: I have been told the truth : Fibromyalgia doesn't exist

Postby LouLou » Fri Jan 25, 2013 12:10 pm

Hi Kat

Like Flash I'd read the whole of your thread and the links and wanted to reply but saw things got a bit heated with a few people. I can't believe your Doctor had the cheek to say that to you!!!!!! It makes me mad thinking about it so I can't begin to imagine how you felt! I think a big issue is that FM isn't widely recognised not like other conditions and it isn't talked about on TV/radio shows like other illnesses. We hear about famous peole suffering a lot of things but if they don't have FM it doesn't get talked about.

Kat I hope you're not letting any negativity get you down. I also hope you have managed to find a better doctor. I admire you for posting something like that and by the way I thought it was very clear how to follow the threads - well I got it anyway and I have constant Fibro Fog lol.

Take care and stay positive :hugs:
What doesn't kill you will only make you stronger ;-)
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