Newbie - Just looking for clarification....

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Newbie - Just looking for clarification....

Postby Mayham » Mon Apr 12, 2010 1:30 pm

Hello everyone

I have been primarily diagnosed with fibromyalgia by my Rheumatologist. He has taken X Rays and Bloods but has put me on Amytripline (or something like that!!) meantime.

My concern/question is this.....

My aunt has fibromyalgia and she says I cant have it because I do not have the "pain on touch". I have every other "classic" symptom except this one and it seems to be the "biggie".

Can anyone tell me if they are in the same boat?

Apologies if I have posted a question already asked or put my post in the wrong space.

May
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Re: Newbie - Just looking for clarification....

Postby velvet » Mon Apr 12, 2010 6:15 pm

you do not have to have every single symptom to have fibro - everyone is different and the way people experience their symptoms differently - you may actually experience "pain on touch" only think you dont it is because it doesnt hurt "that much" - it is not supposed to hurt at all. the idea of no pain can actually be difficult for people with fibro to get their head round - i am so used to pain when touched that i cannot comprehend what sensation without pain is - i dont think anything of the pain, it is generally less than other problems, and to me it is normal so i dont think about pain on touch - even though i do have it.

dont know if that made any sense but when you talk about pain on touch you need to really concentrate on what you feel when touched - and try and compare it with someone "normal" - which will probably result in confusion as they wont get how such gentle pressure can be felt so deep and you wont get the idea you can feel something without pain sensations which you dont even recognize as pain.
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Re: Newbie - Just looking for clarification....

Postby smoky » Mon Apr 12, 2010 6:26 pm

I agree with velvet. It took docs a long time to diagnose me because I also dont scream with pain on being touched. However, when moderate pressure is applied to the pressure points I do ( I seem to be able to block the pain most of the time) I realised that I do sometimes have different responses to others though, when, for example, someone knocked into me in the street last week and I nearly vomited with the pain my body told me I was experiencing.

As velvet says it is now difficult for me to recall a completely pain free time; the only time I realised how different my life used to be was on tramadol a year ago, which took the pain totally away (unfortunately it also took away my ability to stand, which was a problem as I still work!!) :roll:
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Re: Newbie - Just looking for clarification....

Postby smiler22 » Mon Apr 12, 2010 11:29 pm

fibro is usually diagnosed throug the tender point tests which involes the gp or rhumeo lightly pressing your body in the key points and they say that you should usually hav eto have 11 of the 18 points. however there is alot of research on different books an dwebsites that say that it is now clear that you dont need to hav ell these tender points to get diagnosed. which is obviously the case in yourself.

i found that when the rheumo touch ed me i did get some areas that was very painful and others that didnt hurt on ly slightly. but the rhuemo never told me whether i have and how many points if any. so i dont know if i have or not. but i still got diadnosed as having fibro as i have all theother symptoms of fibro plus a few more that isnt usually on the list of symptoms for fibro but the rheumo thinks is for my fibro.

as the others have said if you have a diag of fibro it doesnt mean that everyone of us can tick all the symptoms off on the said list. as some only have a few syptoms where as some hav eall of them. everyone is different.

i have severe fibro and am in ableto work. an dhave to walk with crutches. but i know of a nother lady who is older than me who still works and walks a snormally as she always has. she just occasiona;;y has flare ups where she has to stay in bed.

so have a gentle word with your gp. the owrstthey can do is say no. but you have a diagnosis.now so they should help you.
live life to the full as life is what you make itxx
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Re: Newbie - Just looking for clarification....

Postby velvet » Tue Apr 13, 2010 10:54 am

my tenderpoint test was 14/18 as i have found out recently ( :shock: ) but i wasnt going ouch at any point in it - i didnt realise it was even being done -i presume the rheumatologist was merely checking my reactions at each point - watching for face reactions or me flinching. as i have said i dont rate it as touch pain - touch discomfort maybe, - it just is, but what i feel would be considered pain by someone without fibro if that makes sense
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Re: Newbie - Just looking for clarification....

Postby Mayham » Tue Apr 13, 2010 1:17 pm

Thanks to everyone who replied. All comments were really helpful. I was confused as my aunt suffers real agonising pain when touched so I thought you had to have that to classify as pain on touch. I do get pain on touch, mild but certainly not agonising and so I thought that was a normal response - whoops!

Thanks again to everyone and I look forward to reading more posts and finding out more about Fibro.

May :D
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Re: Newbie - Just looking for clarification....

Postby velvet » Wed Apr 14, 2010 11:34 am

welcome to the "i thought everyone felt pain when touched" club - apparently they dont lol
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Re: Newbie - Just looking for clarification....

Postby LinzWorld » Thu Apr 15, 2010 3:19 pm

The tender point test shouldn't be done lightly unless you get pain with just a light touch. Up to 4kg pressure should be used, enough to blanch the nailbed of the thumb and this is quite a lot. The examiner should ask you if it is painful when they do it as not everyone winces or complains no matter how much pain it causes.
I run FibroAction, a small national charity raising awareness of Fibromyalgia Syndrome. I am not a qualified healthcare professional. If you would like medical references for any facts quoted, just PM me.
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Re: Newbie - Just looking for clarification....

Postby velvet » Fri Apr 16, 2010 12:09 pm

i guess i must have been wincing or flinching enough lol
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