when does it get better?

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when does it get better?

Postby Wackers34 » Thu Dec 19, 2013 6:56 pm

Im having such a bad day today, it makes me sink into hopelessness...I haven't slept more than 3 hours, im exhausted and it hurts to even breathe or hug my husband tonight...it makes me think when will I ever get it under control...some people I read have got control of their symptoms - my worse one is not being able to sleep then having 0 energy to do even the basic of things...this makes my pain and muscle so tight and my twitches / cramps worse, my heart rate so fast and my tummy hurt from IBS
Its been a year ago this week that I first got symptoms...how long did it take for you to get it under control / or has that not happened yet....sorry for the moan :o(
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Re: when does it get better?

Postby Gaia » Thu Dec 19, 2013 7:28 pm

Everyone is different, but for me I was diagnosed in 2007 and have only got worse since then. I do get a few days every now and again that are not too bad, but mainly I feel utterly exhausted all the time, not to mention constant pain all over my body.

You may find you can get some control over your symptoms at some point, but very few people are lucky enough to do that :cry:
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Re: when does it get better?

Postby kazza65 » Thu Dec 19, 2013 7:33 pm

Hi

i know it grim with pain and the discomfit that we all feel.

You never mentioned if or what medication you take, we all take a lot of different medication. My myself a have take a few different drugs to keep my fibro under control.

I find that my fibro at the moment is bad because of the damp, and changeable weather condition's. On a morning i get up and i can't move my finger's, my and toes and it takes age's to get my feet to work. Then when i come to go down stairs its very painful, then i can't function until my hubby has done my tablets and a cuppa. I have very sleepless nights some nights i tossing and turning all night because if sleep on my side my legs loose feeling and then i lay on my back and the pain is excruciating when i try and move. I have burst of energy and then i have 0 energy, then all i want to do is lay down with my comfort blanket. I also have to have help getting in and out of the bath. You have to have to support of your family to be able to get your fibro under control. I would be lost with out my hubby , son, and my daughter.


You you can see from my symptoms we are all different.
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Re: when does it get better?

Postby whoami » Thu Dec 19, 2013 8:18 pm

Wackers.....love the name, LOL

I am sorry your pain is so bad right now. Wackers, I can relate somewhat to how you feel. I have been dealing with fibro for 25 years. Our journey will be different but we will share a lot of the paths.

I can only say to you that I feel the amount of pain, discomfort, depression and other symptoms we get with fibro will depend a lot on ourselves. Now don't get me wrong, we need help, lots of help.

With the help of Dr's, therapy and medication we can find the right program that can give us a happy, constructive, productive and loving life. The main thing to set us on the right track is our attitude. If we can keep this positive attitude, look for the bright side of things, our lives can be happy.

There have been many days that I have hit the darkest of places, we all have or will. We have to reach out. There are many things I no longer enjoy the way I had, but I still enjoy them in a different way. There are things I excelled at, now I do things a little slower, a little quieter but I do them, I may not run but I take baby steps. I still live.

Wackers...nobody can say when you will reach a place of acceptance, a place where you can be comfortable with yourself. We can't say that you will be pain free or your old self again.

What I feel I can say is that if you look at yourself and say, ok, this is it and you take the attitude that you are going to be in control, you are going to deal with and accept things, your life will be very full.

If we can only concentrate on the negative then we are defeated, we may as well just curl up in a ball.

Wackers...I am going to say to you what a Dr said to me, he has fibro....

You are going to live a painfully long life!

I will add....How you live and enjoy that life will be up to you. Find peace to your heart!
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Re: when does it get better?

Postby Sioriwish » Thu Dec 19, 2013 9:33 pm

It gets better when you decide to get better. It is quite literally in your head. Now don't go all skits for me saying that, but it is true. This isn't just a physical problem, it does affect our mentality, which does affect everything else. Being negative or positive changes the chemicals in our brains and depending on which you are, you will be in more pain than the other. I've noticed that if i'm negative, i'm in more pain, if i'm positive, i'm in less pain and able to jump around etc.

I came off meds two years ago. Best choice I ever made. I only used painkillers once a day, and then kept cutting that down until finally, i don't need to take them unless I need too. I did this not only because the medicine I was on actually stops the body from naturally healing if you're constantly taking a inflammatory medicine. But I found that the pain subsided cause I wasn't drugged up and the side affects of the drugs werent making me worse.

I do honestly think that you, and everyone else does need to change your perspective on this condition, as well as the other ones you may have. so instead of saying, oh i barely made it out of bed, say YES! I made it out of bed today, whoo :D. just go to positive instead of negative and that will make a MAJOR difference.
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Re: when does it get better?

Postby FluppyPuffy » Thu Dec 19, 2013 10:17 pm

As whoami and Sioriwish have done, I also found that once I started making a little headway into the chaos that passes for my mind and bringing a little order back into it, it became a little easier to deal with what FM and its other constant companions threw at me. It's not the answer to everything, and I've had a few slips along the way that needed a few recaps on the approaches I use during different sessions etc but the mind can be an incredibly powerful instrument, both for the lighter and brighter times and for those darker, bleaker :yikes: :yikes: :yikes: :yikes: ones.
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Re: when does it get better?

Postby whoami » Thu Dec 19, 2013 10:39 pm

Siorfish....It is great that you are able to be drug free. You are one of a few that are able.

When I say it is all about attitude I am not saying that this is an illness that will go away if I wish it to. It is not something that will go away, there is no cure. No matter how positive, fibro is here for life unless a cure is found.

I am saying that along with a Dr's guidance, meds and treatments we can live a happy life. Attitude helps us so we are not getting ourselves down. However, feeling down in the dumps, fed up with it all is very normal with fibro patients. We just have to help ourselves by asking for help and not giving up on new ideas.
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Re: when does it get better?

Postby FluppyPuffy » Thu Dec 19, 2013 11:21 pm

whoami wrote: When I say it is all about attitude I am not saying that this is an illness that will go away if I wish it to. It is not something that will go away, there is no cure. No matter how positive, fibro is here for life unless a cure is found.

I didn't read anything in what you said that suggested we could wish FM away, altho it would be nice if there was such an option, or a magic wand to wave and make it all vanish.
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Re: when does it get better?

Postby whoami » Fri Dec 20, 2013 12:30 am

Fluppy, LOL. I just want to make sure that nobody thought I was saying "it was all in our head"

If that was the case then my head would have burst by now!
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Re: when does it get better?

Postby zappa20 » Fri Dec 20, 2013 12:53 am

whoami wrote: When I say it is all about attitude I am not saying that this is an illness that will go away if I wish it to. It is not something that will go away, there is no cure. No matter how positive, fibro is here for life unless a cure is found.

I am saying that along with a Dr's guidance, meds and treatments we can live a happy life. Attitude helps us so we are not getting ourselves down. However, feeling down in the dumps, fed up with it all is very normal with fibro patients. We just have to help ourselves by asking for help and not giving up on new ideas.


Not quite true Whoami. I've been free of Fibro for 5 years or more. It's also documented as possible in several articles. Just doesn't happen very often , and the reasons for that are probably as complex as the individual.
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Re: when does it get better?

Postby whoami » Fri Dec 20, 2013 4:52 am

You say you have been free of fibro for 5 years but you also said you stopped taking drugs 2years ago and only take them when you really need them......I am confused

I wear only Fentanyl and take wellbutrin. You will have a hard time finding anyone who is more positive than me about fibro. There are quite a few others like me who have a positive attitude. I have found what works for me, the same meds for over 7 years are part of the program.

If there was enough proof that fibro could be cured by people being more positive and using less drugs, wow! There would be thousands of of happy people around this world. Could you please advise me as to where I can find and read these articles you mention.

Yes, being positive about ourselves and what we can accomplish does make us feel better. It helps us to cope. It does not cure.

I am happy you are better but I won't insult those who need meds by agreeing that if they stop taking meds and be more positive that they likely could be cured.

I realize we are all different and miracles can happen...For 25 years I have tried everything out there and everything inside me to rid myself of fibro ......I am positively waiting for my miracle.
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Re: when does it get better?

Postby dotty lotty » Fri Dec 20, 2013 7:08 am

Whoami what words of inspiration you have given us.
I am trying to be positive and do things differently. And it will be a long road and I wont always succeed but will keep on trying. :teddy-bear:
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Re: when does it get better?

Postby whoami » Fri Dec 20, 2013 9:31 am

Dotty...you couldn't ask any more of yourself, you are succeeding, you are trying.
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Re: when does it get better?

Postby SchroedingersCat » Fri Dec 20, 2013 9:52 am

I absolutely applaud what Sioriwish said. I've been diagnosed for over 18 months, suffering for several years, but drug free (apart from an unrelated stint on anti-d's for work related anxiety and depressed - being bullied by my horrible boss) apart from over the counter painkillers. I'm sure attitude helps with coping, I really am. Keep your chin up and don't let it rule your life, would be my advice, and eventually you will reach a compromise with it where you can live the way you want, just more slowly and cautiously than you used to.
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Re: when does it get better?

Postby zappa20 » Fri Dec 20, 2013 7:01 pm

whoami wrote:You say you have been free of fibro for 5 years but you also said you stopped taking drugs 2years ago and only take them when you really need them......I am confused


Whoami , think you've mixed up some of our posts. I posted I'd been free of Fibro for 5 years, not Siroiwish. And my post made no mention of either stopping medication or sometimes needing it. There's plenty of articles on this condition which state it is possible to recover, but numbers can be small. Even the ATOS assessors guide to Fibro on this forum says it. Albeit that report might not be felt by many to be credible due to the shenanigans of ATOS as a company.

Incidentally as a pain consultant once said ' 'I've no problem with someone wearing a tea cosy on their head, for any reason whatsoever , if it improves their life in some way'. And I do think you're very positive and tend to agree with most of your postings. Just not on this one single comment that no one recovers from Fibro because I have, and I'm not alone.
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