Hi there. I'm new here. Just need to talk.

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Howmuchlonger

New member
Joined
Oct 24, 2017
Messages
5
Reason
DX FIBRO
Diagnosis
00/0000
Country
CH
State
VD
Hi there,
I've had fibro & CFS for 6 years now. Have made slow but good progress, but still can't work outside the house.

I'd be happy to share with anybody some of the meds & therapies that have been helpful for me, just ask.

But also I just need to talk to someone who understands. Sometimes I feel I just can't take it anymore...

I feel lost. I don't know who I am anymore & have become really isolated.
 

Tipnatee N

Very helpful member
Joined
May 8, 2017
Messages
594
Reason
DX FIBRO
Diagnosis
11/2012
Country
US
State
NY
hi Howmuchlonger welcome. :)

I guess your name is also good question to us all. Cause I don't know either.
 

Howmuchlonger

New member
Joined
Oct 24, 2017
Messages
5
Reason
DX FIBRO
Diagnosis
00/0000
Country
CH
State
VD
Hi Tipnatee, thanks for the welcome. Yes, it's how much longer do we all need to suffer, how much longer till the medical community wakes up & takes us seriously, and how much longer can we take it??

Something that has given me hope lately is the new documentary Unrest which is just coming out. Here is the trailer & website for anyone else who needs a little shot of hope!

https://www.unrest.film
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Welcome...oh my yes 10 years in and i think we all share this one thing in common yet knowing chronic illness is for a life time...causing many if us isolation and to totally loose our former selves. I used to be less affected than now and the most important thing if possible is to carry on doing what you can that does keep the things you enjoy alive...just less ambitious version of those things.

Make newer smaller dreams...its so very hard and you have come to the right place for support. Take Care and yes do share anything you have felt help improve your quality of life.

Many of us cant work despite longing to be part of society in that way so we have lots in common.
 

Lubkos way

Distinguished member
Joined
Oct 3, 2017
Messages
123
Reason
DX FIBRO
Diagnosis
03/2002
Country
CA
State
Quebec
Hi,welcome to the group,it is good to have you reach out for support with us!I am sure you will get some relief from the lonely place you find yourself in.


We all go through the realization,sooner or later,that the life we knew will never be the same.It is harder for some to accept it,but you have to come to terms with it.


The sooner the better,I fought it and was lost too for the first 10 years!I thought that it was the beginning of the end,and it is not.If you work at understanding that your life is not over,it is just going to be different.


You can improve,physically and emotionally,but it takes time and effort.The improvements are incremental and take constant effort.

You have to believe it,in yourself,and it will test you like nothing else you have ever been through!The person you know is still there,but without support,it is easy to get overwhelmed and lose yourself.


I am sure that you will find some relief and ideas on this site,I have,and I waited 20 years to begin looking for people to share strategies and support!I regret that.I wish you luck and strength in your struggle.
 

Howmuchlonger

New member
Joined
Oct 24, 2017
Messages
5
Reason
DX FIBRO
Diagnosis
00/0000
Country
CH
State
VD
Thank you for reaching out, Lubkos, Diamond & Tipnatee... I have tears running down my face as I read. Thank you for the wisdom and encouragement. Sometimes it is so hard. And I never tell anybody.

I will certainly share about the meds & therapies that have helped me, and will put it in a new post.

Bonne nuit from Switzerland
 

Francine

New member
Joined
Oct 25, 2017
Messages
1
Reason
DX FIBRO
Diagnosis
07/1980
Country
US
State
Pa
I am new to this sight also. Know the feeling of needing to talk. My cats are always listening to me. They help me get through my day now that I retired after having knee replacement. Want to walk a 3K run/walk for a fundraiser for a local women with stage 3 cancer. I am so afraid I won't be able to finish or push myself so hard that I will be totally shot for the next week. Frustrating. Be good to yourself. I been dealing with all the symtoms of this disease among other dibilitating illnesses for 37 yrs. Long hard road. One day at a time seems to be my mantra. Francine
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
oh i LOVE Switzerland Howmuchlonger..its my favourite holiday destination in the whole world!

So nice to have you on board this forum...i don't think we have had anyone from Switzerland before. I have had many amazing holidays and travelled your country....all that clean mountain air and beautiful lakes ....i have been transported back to my pre fibro years and many happy memories.

So thank you for that.
 

Tipnatee N

Very helpful member
Joined
May 8, 2017
Messages
594
Reason
DX FIBRO
Diagnosis
11/2012
Country
US
State
NY
I am new to this sight also. Know the feeling of needing to talk. My cats are always listening to me. They help me get through my day now that I retired after having knee replacement. Want to walk a 3K run/walk for a fundraiser for a local women with stage 3 cancer. I am so afraid I won't be able to finish or push myself so hard that I will be totally shot for the next week. Frustrating. Be good to yourself. I been dealing with all the symtoms of this disease among other dibilitating illnesses for 37 yrs. Long hard road. One day at a time seems to be my mantra. Francine

Dear Francine

Welcome here , don't worry we'll always listen to each other around here . I have to push my self everyday cause my pains won't give me any luxury of resting , but with chronic fatique I could hardly crawl sometime and next day might get shot completely too. Sometime people here replying slow do to the brain fog getting in the way or the eyes problem. But we supporting each other to get through every single day. Cause we all need that kind of encouragement every day that we still have any breath left in us. Just a little bit a day and just enough to get by.
 

Lubkos way

Distinguished member
Joined
Oct 3, 2017
Messages
123
Reason
DX FIBRO
Diagnosis
03/2002
Country
CA
State
Quebec
I was having a pretty good day,although I have been pushing myself too hard for the last month working outside,and trying to get as much done as possible for my best customer,before the weather changes drasticly.


So to my point,I was wondering if anyone else gets clumsy when they are running themselves too hard.I came close to hurting myself going down 5 steel steps to my bbq in the rain making supper.


My bbq is at the bottom of the steps,and I even made a mental note that they were slippery,when I started.So,I slipped the fourth or fifth time I went down,my feet went forward,and I started falling backwards!

Thankfully,I stuck out my arms,and literally slid down the railings on only my arms and crashed into the bbq at the bottom!

I suffered only a half inch cut and bruise on my right forearm and one finger feels funny,but the biggest casualty is my bruised ego!

I wish someone had filmed it,it must have been funny to watch.


I think it is time to maybe slow it down a tad.Am I the only one to whom things like this happen,is my question?Would it be considered fibro fog or simply fatigue?

I am mad at myself,because I even warned myself,yet.....I want to avoid it if at all possible in the future!
 

Tipnatee N

Very helpful member
Joined
May 8, 2017
Messages
594
Reason
DX FIBRO
Diagnosis
11/2012
Country
US
State
NY
Oh No! Lubkos way are you ok? :shock:

Bruised ego, yeah I know how that feel far too well. I'm usually a handy type woman , but with brainfog I forgot which way the screw turns sometime. I still love putting new furniture together and very pround to build it no matter how complicated it is. But when I finished the last new drawers for the person I'm staying with at the moment and finally loading her clothing in, the whole drawers fallen apart right in front of my eyes. Apparently I've forgotten to nails down in the back cover and a few uncompleted screws on the side, talk about bruised ego. :confused: damn it! Not to mention a few bruised toes after all it did fallen on them quite hard. :cry:
 
Last edited:

Howmuchlonger

New member
Joined
Oct 24, 2017
Messages
5
Reason
DX FIBRO
Diagnosis
00/0000
Country
CH
State
VD
Lubkos & Tipnatee, boy, do I get you. I do the stupidest things sometimes when I'm tired or fogged -- putting things in the wrong cupboards, forgetting appointments and breaking dishes. Thankfully I haven't had any big accidents. Lubkos, I hope you're ok!

But actually, when it comes to walking on uneven surfaces, any physical clumsiness is more because I'm totally out of shape, frankly. I used to be really athletic, so this is even more annoying.

Francine - good luck with your 3km walk. You are so courageous. Hope you have a big sack of magnesium salts for a week of healing hot baths after.
 

Howmuchlonger

New member
Joined
Oct 24, 2017
Messages
5
Reason
DX FIBRO
Diagnosis
00/0000
Country
CH
State
VD
oh i LOVE Switzerland Howmuchlonger..its my favourite holiday destination in the whole world!

So nice to have you on board this forum...i don't think we have had anyone from Switzerland before. I have had many amazing holidays and travelled your country....all that clean mountain air and beautiful lakes ....i have been transported back to my pre fibro years and many happy memories.

So thank you for that.

Hi Diamond, it's true - it is really lovely here. I'm actually Canadian, but came here 15 years ago for work and ended up settling here and naturalizing. Hope you got to enjoy some sunny days in the alps while you were here! 8)
 

Lubkos way

Distinguished member
Joined
Oct 3, 2017
Messages
123
Reason
DX FIBRO
Diagnosis
03/2002
Country
CA
State
Quebec
I have got to say it is kind of nice to feel some concern over me,Thanks,I am grateful!


I am sorry that the indignity of occasionally doing things that make us feel less than "together",happen to us all.



I ended up with nothing that shouldn't heal by the time I die.Haha.


I hope your spirits are up,and you are feeling better Howmuchlonger.


Tipnatee you always make me feel like I am not the only one having to deal with sudden chaos.


Diamond you are the steady one with calm resolve.


And last but not least,welcome Francine,I hope your 3 km walk is manageable and that recovery does not cost you too much.


I am finally off the entire weekend for the first time in a month,but I have to prepare for the winter,winter tires,plastic on windows(cheap landlord),and round two,of treatment two.A la prochaine!
 

Tipnatee N

Very helpful member
Joined
May 8, 2017
Messages
594
Reason
DX FIBRO
Diagnosis
11/2012
Country
US
State
NY
wait a minute Lubkos way

<<<< Are you saying I'm a completely helpless wrack? :mrgreen:
 
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