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Talking to Fibromyalgia sufferers

Mon, 27/07/2009 - 2:00pm — Kimmy
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Hi all
I have been looking for some time for a forum just for Fibromyalgia sufferers. When I found this I thought I hit the jackpot however on closer inspection it looks like no one other really is talking much lately so hopefully someone is reading this.
I just want to chat with people with FM and ask how they are coping etc.
I am 31 and have only recently been diagnosed however in hindsight have definately been living with thechronic pain and associated problems (IBS, severe depression, flu like symtoms, exhaustion, anxiety and nervous stomach) for at least half my life. I work fulltime and have a 2 year old boy. It has been a good thing to finally have a name for the symtoms and to accept and realise this is not just going to 'get better' however am now feeling quite alone and still not confident in my coping ability. I am hoping talking to others will help me come to terms with it even more. Do other have similar health issues to those I have just mentioned. Also what meds are you on?

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Thu, 24/09/2009 - 6:00pm — dockey

fibromyalica

Hi I am answering to the person about fibromyalica; I have a 15 year old son who is doing Year 9 Distance Ed homeschooling as he was misdiagnosis at the time two years ago 2007 we went to our GP and he said your son has got fibromyalica in 8 tender points and sometimes 11 depending on what he is doing at the time and this year 2009 he has still got the system no pain killers because they don't hit the sides and also he is in tolerant to pain killers.
He just goes along each doing his school and doint a part-time business in computers at home since he can't do any sport like he used too.

It is hard being a parent with a teenager who was healthy one stage and not the next. It was the 2007 January we had a holiday in Newcastle and he was stung by a sea lice we think but no doctor could tell us. We went to one doctor and he it was Interbago that rash thing that children get well she said it was that but to this day we think the sting might have not done good in his immune system and that is where he is today. Just going along doing home schooling from home and doing the best he can.

I wish he did not have the situation but that is how things are I also have a husband with CFS but he copes the best way he can so I am a carer for my husband and a mother looking after my son and a mother who is in a hostel. So I am pretty busy with that but to get back with the question this person is saying.
Yes, my son get those system when he over dose it or it is part of the condition have you got anyone to help you because you need help if you have a baby it is probably after the birth you feeling bad probably.
regards
Dockey.

Tue, 28/07/2009 - 3:23pm — gbrown2

kimmy

i have me cfs fms mcs and have suffered from severe depression. i live at kurri kurri.i know a lady with fibro she attends a f ibro group somewhere in newcastle. meds are very tricky you have to decide which is the worst medicine side effects or the fibro sad but true.i can probably get you elaines phone number she is not on the internet.another lady who is very kno wledgable with fms is moira smith she is on the net she lives in canberra.another web site i recommend is [me cfs comunity ]it is an american site it great for support lots of young girls like you.my e mail address is gbrown2@tpg.com.au

Sun, 02/08/2009 - 6:54pm — Kimmy

Thank you so much for JUST listening

Thank you for those contacts. It is nice just to talk to someone else like me. As I have only recently been diagnosed, I have been reading a lot etc and have been thinking about whether I may have other conditions as well. Did the same specialist diagnose you with CFS& MCS? What if you don't mind me asking is MCS? I was diagnosed with FMS by a rheumatolist (Ratnaraja) who, to be honest did not provide me with much to go on. He said, you know, this is what you seem to have and hear is some pain medication and sent me on my way. So, I now have obtained referal to another rheumatoligist who may offer me a second opinion. Does this sound like a good idea do you think? I have just discovered Cymbalta and am finding that is working well but still am needing daily painkillers to cope with everyday life which is a worrying thing. I have a 2yr old boy and work fulltime so don't have much time for rest. Thanks again.

Wed, 05/08/2009 - 3:04am — gbrown2

answers for kimmy

sorry i am so long in answering kimmy
no the same person did not diagnose me
proff wakefield for me cfs
dr dobler for fms
i find the side effects of drugs like cymbalta or any other ssri impossible but this is because of the me cfs not the fms
lyrica is a good fms drug but has side effects
go into a web site called [me cfs community] its an american site run by dan morrelli he is a magic man the answers lie here
i am not being disloyal just practical the yanks are a mile in front of us in reseach
are you able to have your little boy minded rest and a calm mind do wonders for fms cheers geoff

Mon, 03/08/2009 - 10:55pm — Diane

ME/CFS & FM forum

Hi ,
Another link you may find useful is the new forum at Phoenix Rising ....
forum.aboutmecfs.org/ this is only new I am yet to sign up ...have a look and see what you think ....I hope you can find a support group as they are very wonderful....and you are definitely not alone even though it may often feel like it......take care of you.....
Diane