newbie looking in

[dusty65]

Hi, I was given this website addy by honey who writes here, thankyou for inviting me, we both craft and use an online  craft forum and I mentioned about having FMS, so here I am. I'm 43, married for 24 years to along-suffering but totally unsympathetic and sceptical husband who thinks i'm just lazy, we have a 17 year old son who thinks likewise, we also have a 21 year old brain-injured daughter who lives nearby and I am raising her daughter permanently, have done form birth and she is now 4 1/2 and just started school. I have had massive spasms for almost 6 years now, very little helps and I get very black in my thoughts, its so hard when I'm in agony 24/7. In July my amitriptilyne and RLS meds affected my heart and BP, so had to come off them but the withdrawal symptoms and the stress they had previously  masked is unbearable, neurologist has put me back on a very low dose, for me, of amitriptilyne, 10-20mg per night, only been on it 3 nights, no effect yet, and the rain and colder days of winter and earlier darkness don't help, sorry to sound so down, I'm not always like this, but I'd rather say how I really am than what I have to mask to the world and my family all the time, I need somewhere where I can be real and say how bad it hurts and how fed up I am, but having said all that I am a survivor and want to be well and do have a good sense of humour, hope to hear back from others who understand, thanks for listening, dusty65

[Honey]

Hiya Dusty nice to see you your not alone its great on here a mad bunch but thats what you need  no really they are a fab bunch and will help you all they can

see you soon

[elaine ann]

hello dusty
you have come to the right place. i once read that there is a pressure point at the back of the neck and when you press it it hurts i cant remember exactly where it is though.and non sufferers are supposed to press untill it hurts and keep it there for as long as posiible.this then gives them an idea of what it is like for sufferers that feel that pain 24 hrs a day.i am lucky that my husband understands as he has been quite ill for 15 years so knows what its like.as for the rest of the family you dont look ill so therefor your notany time you have just pop by these ladies are fantastic.i dont use the site as often as i should i should change that.
take care
elaine ann  

[Fibroman]

Hi Dusty

A big



from me.

Sorry to hear your family are unsympathetic, it's hard coping on your own when people don't understand but that's what we are here for, you will find lots of support from people who suffer just like you. Don't worry about saying how you really feel if you are down everyone will understand.

Its also a good place to come and have a giggle to cheer you up.

[Scribbler]

Hi Dusty

I hope that you've had a look at our craft section on this forum

I'm not quite sure what my 'kids' think about Fibro - except that they quite often phone and say how tired they are. Actually do wonder whether middle child has it but...

I have a brain-injured daughter too. A road traffic accident when she was 12 (she's 36 now). She's married with a 10 year old son and does struggle because she's sort of stuck emotionally at 12. My grandson is a really intelligent lad and I do wonder what sort of relationship he'll have with his parents later on. (sorry I'll stop there - it's not something I like thinking about - I get guilty on many levels - not least that I live 250 miles away...)

Anyway - welcome aboard - come and enjoy the company of fellow survivors of Fibro

[dusty65]

scribbler, my daughter was brain-injured by an RTA at 10 (she's now 21) and she's stuck emotionally too, so I can understand how hard it is for her and you and also we don't know how her daughter will react to her being unable to care for her, but she's only 4 1/2. thankyou for your welcome and to the other members who welcomed me, its not nice to know that others suffer but sort of good to know I'm not alon,e, if that makes sense, take care, dusty65

[Wendy]

Hi Dusty, welcome to this site we are a mad bunch but we mean well, Its a rotten think with your family, Im lucky mine are with me 100% I think a kick in the goolies for them both then they will hurt too, sorry but you must get them top read some of the stuff on the forum, maybe that will help.

[Honey]

yes Wendy and Joo i think this a task for the  swat team  are we ready

[Joo]

 SWAT TEAM ready when you are Honey!!! Just tell us where and when and we'll sort their goolies out won't we girls!!!!

And if you're very good Dusty then you can carry the battering ram!!

Welcome to the site mate, we all ended up here as we were the maddest of the sane sites and we all felt comfortable here!! Some of us are ever so more slightly comfortable than others I might add but thats probably due to over-indulging on chips and cream cakes!! 

Joo x

[Buffy Boo]

Welcome Dusty.
My cousin was brain injured at 19 after a RTA. Her daughter, miraculously conceived the night before the accident was born perfect ( the doubt was whether all the xrays and surgery that her mum had had to have would have damaged her but as they only realised she was pregnant six month after the accident there was not a lot to be done... )she was raised by my aunt and is now a Barrister. There is always something wonderful to come from the worst of disasters.
I'm sorry about the unsympathetic rellies..... unfortuneately there is usually nothing you can do about them, don't let that add to your woes.... you said you are a survivor, You show the girl! It's an oft repeated disappointmnet when you ope for something that they can't give and if your old man doesn't understand it's unlikely that your boy will. I live alone with my kids and so they have had to see for themselves what I have gone through. Be grateful that your grandaughter has kind of forced you to keep going.... once you stop it's a bugger to get going again....
I'm at a happy place at the moment, I have accepted that I will always have the pain....it's no different if I am honest, it's just that I am coping with it better. I am learning to cope with my new life instead of pineing for the life I have lost.
A brilliant book is "Coping with pain" by Neville Shone
It's not an overnight fix.... but it's a good place to start.
Be happy and loves to your little one.
Buffs

Ps sorry about any bad spelling, Scribbs..... oops

 

[hudson]

Hi Dusty65.
hope you are not feeling to bad...

not sure if that is you or not....
maybe you will recognise ny name.

Hudson