Old 11-05-2017, 03:34 PM #1 (permalink)
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Unhappy Every.Signle.Day

So yesterday it was ankle pain so bad it was hard to drive.

Today I slept until 3pm and somehow feel like I injured the entire left side of my torsos. I woke up to back pain again despite the muscle relaxers.

What will tomorrow be?

It seems like a new issue every day. I can hardly keep up.

I'm doing my yoga and tai chi to the extent that I am able to. I'm trying to watch what I eat. I've tried medications already, although there may be others at some point. What am I doing wrong? shouldn't I be improving? Or does it take months to see the effects?

I. Must. Beat. This.

I've survived so many bad things at this point. I refuse to give fibro even an inch but I already feel like it's trying to take a few miles.
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Old 11-05-2017, 11:44 PM #2 (permalink)
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Default Re: Every.Signle.Day

Sadly this is the face of fibro...although meds and various other forms of help..exercise etc may reduce symptoms it wont take this creature now attached to you away.

On the plus side hopefully your ankle pain went away and the torso pain will recede too.

You have a good attitude that you wont let it beat you.

It's a hard condition to get your head around but if it stays so things improve again you will mentally adjust to the randomness it creates.

Take good care of yourself would be my best advice...reduce stress as far as possible and do what you are doing with the yoga etc and be kind to yourself...that way you have the very best chance of keeping this little monster more in check.

Best of Luck

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Old 11-06-2017, 03:49 AM #3 (permalink)
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Default Re: Every.Signle.Day

Diamond put it perfectly.

Fibro will remind you that it can take away anything from you. You thought you had good knees? Boom, next day you'll wake with such weak knees and with such pain, that you will hardly make it out of bed. But then a few days later, it will be over, with no reason, no treatment.

Yesterday after 1pm, I was feeling really good. Mentally and physically. Had not felt so good in such a long time (you know so good that you are like 'do I really have fibro and more?). So good that I could not stop doing errands around the house. But I stopped myself and decided to just enjoy feeling good, and be 'lazy' and enjoy this feeling. It was Sunday after all! Then out of nowhere, boom, extreme fatigue....I had to drag myself to my bed and lay down for 4 hours. 4 hours!!! It was past dinner time when I was among the living again.

It takes a very strong mind to live with fibro, so like diamond said, it is cruel to focus on what is really important in your life, avoid stress as much as possible, take time for yourself only, be more selfish (though I know for most fibro sufferers this is almost impossible. It is one of the many reasons why we got fibro in the first place), and focus on what you can do, instead of what you can't do.

Take good care....
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Old 11-06-2017, 05:58 AM #4 (permalink)
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Default Re: Every.Signle.Day

Thanks for the replies.

At this point I'm almost confused as to what doctor to go to. Rehmatologist I suppose. Or my pain doctor, I'm in pain. And the spinal surgeon to check my back again.

It's just one steady stream of pain and doctors.And from what I hear from you guys on the forum I do not likely have a bright future ahead.

I'm still going to give it all I've got tho!
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Old 11-06-2017, 07:23 AM #5 (permalink)
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Default Re: Every.Signle.Day

Good for you and remember one thing...often a forum will attract those who are either newly diagnosed looking for answers or possibly those who are struggling and maybe at the more severe end of the spectrum....so may not necessarily be representative of the millions of people in the world with this collection of conditions Fibro CFS/ME who have it more mildly.

I have been on the forum for over 2 years and aside from the lovely moderator and 1 or 2 others i have seen just about every body come on here for either just a few posts or a few months....made good friends but for whatever reason..i suspect usually they improve or the purpose of support they came here for they no longer need and have found their own coping strategies.

I wasn't so badly affected for 7 years...not great..i don't think many feel great but i didn't really have severe weakness or fibro fog and i could get out several days a week and enjoy a quieter but enjoyable life much of the time...although no way could i work.

Yes it was scary as i had new symptoms that joined in over the years that do get you down.....BUT if you take care of yourself now i truly think that can be the key.

I had stuff happen that stressed me out big time...and my health fell through the floor.

I say all this to encourage you that you could still be one of the luckier ones ( if you don't mind me using that word!) where symptoms come and go with more good days than bad.

The other things is don't make the mistake of constantly searching or chasing your tail to be totally pain free....there are no drugs to cure us or make us pain free.....more you will get accustomed pacing yourself to minimise your pains...and perhaps add in medications that will help.

A pain specialist might be best for this or a rheumy...but they are not gods...they have a range of meds that help some people a lot but its also up to us to do what your doing which is listen to our bodies and respond accordingly.

I was like a rabbit in headlights at first and the emotional journey is hard to reach acceptance of limitations....you are at the start of your journey. Good Luck and let us know how you are doing..it might be you give some other people hope!
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Old 11-06-2017, 08:55 AM #6 (permalink)
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Default Re: Every.Signle.Day

Quote:
Originally Posted by diamond View Post

The other things is don't make the mistake of constantly searching or chasing your tail to be totally pain free....there are no drugs to cure us or make us pain free.....more you will get accustomed pacing yourself to minimise your pains...and perhaps add in medications that will help.

A pain specialist might be best for this or a rheumy...but they are not gods...they have a range of meds that help some people a lot but its also up to us to do what your doing which is listen to our bodies and respond accordingly.
This is so so so true.

I know I keep repeating myself on this forum, but acceptance has helped me tremendously. Pure and simple acceptance of things as they are. This does not happen overnight, it takes a while, but it has worked better than any medication I ever tried. This is also true for my mental health issues. Accepting them as a part of my life has been so much better than trying to understand why, how to be 'normal', trying different meds, dealing with their side-effects, getting off of them, looking for answers - this endless and very very stressful cycle.
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Old 11-06-2017, 10:39 AM #7 (permalink)
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Default Re: Every.Signle.Day

It's like what Diamond said exactly.

Fibro is very hard to chase around like a wack a moe game. You might hit one but there are hundred more underneath kept popping up. Doctors still scratching their head trying not to look bad infront their patient, but they have their limits . So be mindful and forgiving them in advance if they ended up not treating you the way they should.

Cause fibro is just a name of the collection of so many disorders that made no sense in the medical worlds nor have any real explanations of how and why, With a few similar traits to each fibro sufferer , and the ability to mimic lots and lots of other illnesses to disguises the real problems.

Kinda like it's playing game with you and your doctors at the same time.
I want to beat it too. But first I have to learn to like beating it every.single.day. .. and prepare to do it every.single.day for the rest of my life. I present my self with 'the fascinating world of fibro' and enjoy the crazy ride. .
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