How old are you, how long have you been a fibro warrior?

[nofunmyalgia]

This is very very good question. At least for me. Many times I felt as if I just accepted it. I am a counsellor and we say that any anxiety is there to serve us!! Shocking eh? Then I wondered how is fibro serving me? I am sure I have used it as an excuse not to do as much as I can. And honestly, I never talk about it, I don't think my family even knows the name of it! My ex husband of 15 years as well. It was my thing and I wanted to live with it, not to give hard time to others. But still, I know I have 'used it' and I recognized that when I heard others doing the same thing. I like to think we can always do better, I mean anyone can, but we have to. Most of my years I spent not moving, I developed the way of turning my whole body just so I would not turn my neck. It was as if my whole body was in cast! then doctor told me that even if healthy person lives like that they would end up in lots of pain. It made sense to me. And I do so much more now, and feel much better but I feel I can do even more and for some reason I am not. I constantly end up sabotaging. I do yoga 5 days in a row, feel great and then stop for days. When my pain goes away I somehow want it back, it is my familiar state. Stick to the devil you know

I did not find anything offensive, thank you so much for your sharing.
And what is the therapy you are talking about. I might think about doing it for next couple of years

 

[nofunmyalgia]

How far would you go or What would you be willing to do,to get back your health??!![/QUOTE]

This is very very good question. At least for me. Many times I felt as if I just accepted it. I am a counsellor and we say that any anxiety is there to serve us!! Shocking eh? Then I wondered how is fibro serving me? I am sure I have used it as an excuse not to do as much as I can. And honestly, I never talk about it, I don't think my family even knows the name of it! My ex husband of 15 years as well. It was my thing and I wanted to live with it, not to give hard time to others. But still, I know I have 'used it' and I recognized that when I heard others doing the same thing. I like to think we can always do better, I mean anyone can, but we have to. Most of my years I spent not moving, I developed the way of turning my whole body just so I would not turn my neck. It was as if my whole body was in cast! then doctor told me that even if healthy person lives like that they would end up in lots of pain. It made sense to me. And I do so much more now, and feel much better but I feel I can do even more and for some reason I am not. I constantly end up sabotaging. I do yoga 5 days in a row, feel great and then stop for days. When my pain goes away I somehow want it back, it is my familiar state. Stick to the devil you know

I did not find anything offensive, thank you so much for your sharing.
And what is the therapy you are talking about. I might think about doing it for next few years

 

[Lubkos way]

I will not ask questions that make anyone have to think about the strategies they have chosen to be able to live with fibro anymore.

I thought that the only way to find the right road to a real solution is that,we should think out of the box,because conventional thinking has been a failure.

I did not say look in the mirror to find blame,like so many so called loved ones or friends have inferred!

I will keep my thoughts to myself as I have for 20 years,since apparently I am insensitive.

So,I will share what I learned on Dec.1st as I said I would,and you all can use it or lose it!All I wanted to do was to help.

 

[Tipnatee N]

I'm sorry Lubkos way, please don't feel so discourage about posting your thoughts.

I am the one who was being insensitive to you here this time do to my hyper oversensitive about the severe chronic fatigue issue while experincing sensory processing disorder overload craziness day in day out. I'm just sick of running in to the tree or a wall. Or dug under the cover trying to filter every sensory out and slower my heart rates.

You see , your post was like a sound of a fantastic cheerleader that suddenly shouting , and I was shocked by the sound and was trying to run to the opposite direction. It wasn't your fault. I just wasn't prepare for the sudden move.

I maybe was disappointed by only your headline, but I wasn't offended.
The rest of your post was good. There was nothing wrong with it at all.

 

[Lou38]

I'm 39, 40 next year, eek! I was diagnosed around February time this year after numerous tests came back negative. I used to have bad flares every few months or so but now each flare seems to run on from the last one with little or no relief in between. I have to say I'm not feeling very positive just now in the middle of yet another flare. I don't know about anyone else but now with each flare, it robs me of a bit more positivity and each flare hits harder than the last. I don't know of any definite trigger for me being saddled with this awful illness, just bad luck I guess!

 

[diamond]

I have been in what you could call a severe flare for 3 years without barely a single better day ...it is hard to stay positive after that length of time...but it's still good to have positive and hopeful posts on here.

So lets all be friends and keep sharing our ups and downs and make allowances for fibro fog or misunderstandings or anyone feeling worn down and extra sensitive sometimes.

Our moods and responses can be a reflection of the roller coaster we are.

When we are doing better its way easier to be positive and some may never have sunk as low as others or have the same array of symptoms or other illnesses as the same time.

I don't think there is 1 magic answer that fits all. We all experience fibro very differently. We all make mistakes too along the way and maybe under do or over do because its a guessing game and who hasn't just had enough sometimes.

 

[missv]

Hi everyone,

I think everyday is like going to a different buffet, you never know what you’re gonna get! Lol. I have to laugh to keep from crying sometimes. I feel what you are all saying and describing. I don’t give up, I just know at my age now I really have to listen to my body. Sometimes the weather warns me in advance of a major flare up!

I find myself feeling a little more down at times lately bc I recently had a second knee surgery (arthroscopic) but it was something that wasn’t gonna heal on its own. More Pain to deal with but tolerable for the most part. I too feel like the older I get the more “new” pain and flare ups.

Does anyone have sharp, shock like pains in their legs while resting? Feels like you’re being electrocuted and wakes you outta your sleep at times. Just curious.

I haven’t been on much lately bc my forearms and inner elbows have been in Pain for about three months now. Glad to be amongst people like myself who understands what it’s like to live inside a body you have no control over.

Enjoy your weekend and live everyday to the fullest! (When you can get outta bed! Lol)

Soft and gentle hugs!

 

[Tipnatee N]

Dear Lou38

I used to view it as bad luck too. But if any bad luck can last this long it shouldn't even be call a luck anymore. Then after I was over the terrible luck grief I started to blamed it on self pity. Then I went crazy on everthing so I can stay away from pitying my self. I did too much movement and ended up with years worth of bad flare up, still couldn't shake of the exercise depression and emotional one right along more pains. So ok.. I thought lets go down the crazy town and face all my fears . Bad idea :shock: . Ok then I spent everything I've got to get well with all the help I could find and try everything that everyone ever said to cure it to see if I could find the quick cure, worst idea ever!

So then I had to stop it all cause I'm broke ,lost job , and homeless with no place to run to. Only after that I starting to look at my self truly, and let go of all the stress I accumulated over the years and the craziness lists of things I should have done. And said " the hell with it ! " . I'm gonna do what I enjoy from now on! there's no point in disappointing any further. I don't care if it's sound weird or look like I'm being stupid or lazy. I'll do what my body wants. I'll eat what my body need to live and stop eat what my body hates or causing more pains. I'll move as much as my heart can do and at the angle that my body allow me to. I'm gonna treat my self like the most precious things on the planet!!

I didn't get cure, but my situation suddenly just got more livable. I can finally breath after suffocating for so long and found the way to shorten my on going long and painfully chaotic panic and HVS . I still get depress attack by some stupid reason but I starting to learn how to snap it out and not as suicidal heart breaking as before . I even learn to ask for help in the right way from love one , and thank god for this forum and everyone in here who have been so nice to me I've got even more answers than ever including the supports that I've never had before.

So hang in there Lou38 .

You will find your way soon. Mean while it help to vent it out to someone who can understand you.

 

[Tipnatee N]

And missv

I love what you said , it's so true like different buffet. I guess I'm more broke than I thought cause they looks kinda nasty , the last one was too spicy , and the one before ekkk I have no idea what that one was!

I'm too get daily electrocuting ( everywhere) I get quick zapping ( like when getting hit with the electric bug zapper) , If I move sometime a lighting strike, on going buzzing shocks then cold, burnt shock then I'm on fire! and so on from sitting still to just walking to my bath room. And if I walk too fast then the full blast , I felt like I had coughed out the smoke after I was burnt to a crisp. :shock:

 

[Lubkos way]

I have decided to not stay mad,because,frankly it is a waste.

That much wisdom I have gained in recent times.

It is funny in a way,because I really wonder how come you have the ability to upset me,Tipnatee,since we really do not know each other?! will file it under "misunderstanding".

I finally got a day off,only to spend it with a friend and college teacher from the 80's who is terminally ill.I have been to too many funerals in the last few years.

The grief of watching,as someone you care about withers and finally moves on,never gets any easier.

I am still feeling really well physically,but it is hard to be 'happy' and to appreciate my gains.

I won't write for a bit.

 

[diamond]

So sorry about your friend Lubkos way....it's very hard to watch people you love very sick let alone terminally ill.

I do hope in time you can appreciate your gains after 20 years in the wilderness and we look forward to hearing from you when you are ready.

 

[Tipnatee N]

Dear Lubkos way

I guess we both have been having a very bad time. My friends who's my next door neighbor lost the battle to cancer and in hospice care at the moment. He's now in the mode of snapping at everybody reguardless of how small it is, I can understand his feeling cause my mother was the same way before she passed in hospice program too. There's so many funerals I could not attended lately. Not only that I couldn't travel , but also my heart could not handle parts.

I know that and I try to becareful of how I react towards people and try my hardest not to upset anyone but putting my feeling to the side it's not easy with brain that run a hundread miles per hour all the time fighting what fibro throws at you everyday chance of giving up is not an option . Your ability to upset me was as well. I realize how insensitive I was and I do not wish to lunch the attack at anyone who are in pains as much as I am. But my heart were crushed and My tears just keep me from being nice as I should have been.

Selfish of me yes, very much but Please understand I meant no disrespect or causing a heartache as it was for me. It's nothing to be laugh at when we somehow manage to hurt each other feeling in such unfortunate choice of word.

I'm a bad woman. So if that would make you feel better I'm gladly to step away from forum for a while if that would ease your pain even just a little.

I mean it. So please don't be upset about this place. I had been in your shoes before when someone snapped at me a while back. I know how powerful of upseting by another member could be. Sometime my apology won't even feel like enough of a compensation. I get it cause I've been there.

You are very precious to me Lubkos way cause when you first got here I had a lots of heartwarming conversation with you. My outburst was inapporpriated and so I should be the one to take the leave , NOT YOU.

So please don't let me get you down any further. I treasure you very much and always will be.

 

[Karen44]

No, I think I am the senior here. I am 72 and was diagnosed just a short time ago. I feel blessed as for most of my life I have been well and able to do things. When I think back, I had some issues earlier. As a child, I was very sun sensitive.My hands, feet, face and neck would feel like they were burning after just a short time in the sun. When I was in high school I had a home teacher for about a year and a half because of extreme fatigue. Then again in my mid-twenties I had another attack of fatigue and had to stop teaching for a few months. Before my diagnosis I was having a variety of symptoms for over two years. Even though I am having problems now, at least I had many good years. My heart goes out to all of you young people who are suffering to such a degree.

 

[diamond]

I had a long bad spell of fatigue Karen44 in my early 30's...so severe i used to drive home from work in my lunch hour just to lay on the bed for less than half an hour available..then drive 3 miles back.

I kept brushing it off as i had no pain ...my batteries just fell to what felt like 10% and i swear i would have laid on the floor in the staff lunch break room all dressed up in my work suit if all my colleagues wouldn't have thought i was mad!

Eventually i did go to my doctor who signed me off work for a week here and there with 'general malaise' written on the certificate and i was so concerned i would be perceived as a malingerer i fought through ...even thinking am i imagining it because i would recover after a few days with lots of rest and sleep. Later my GP suggested ME but a hospital specialist was really derogatory and said i get tired after a days work too!

Then after this on /off period it went away after about 2 years .....roll on 15 years and hey presto fibro and pain hit with avengeance that has progressed with more and more symptoms and severity.

So i guess like you say it was lurking in me too.

Without causing any offence i do wonder if this is how some people with fibro experience the fatigue....comes and goes....but kind of recover with lots rest or have better days or can push through much of the time.

I can honestly say what i experience now is 10 times worse than i had in my 30's and that was bad enough.

Its progressed to what i can only call weakness where the concentration to use my lap top is often overwhelming to my brain and hard to sustain or getting to the bathroom and back to bed often takes all my strength and it all makes me feel really weak ill and nauseous.

So glad i didnt know this was coming!

 

[nofunmyalgia]

No, I think I am the senior here.

I meant senior in fybro! I haven't seen anyone suffering for more than 20 years like me. It was just a joke