Apparently it never gets better. You just learn to deal with it.

[Msfibrofoggy]

I don't even know where to start.
The pain is life (as I knew it) ending. The process of elimination is all consuming. The explanation to everyone you care about is like explaining the Big Bang to Evangelists. The medication is never ending, more pills, higher doses, weider effects and changes to your body. The multiple "self help" classes and never ending doctor appointments or journals OMG the journals. Ones for what causes my pain flare ups or migraines or IBS or depression or my sleep problems. I'm sorry but entering information into these ****ing journals everyday makes all my symptoms flare up.
After all this, I find myself in almost complete isolation because it is easier that way. I know it's not healthy but I am just so tired of all this other shit that I don't have the energy to deal with real life.
Help. I guess?

 

[Forgetmenot]

Oh we all no how u feel.look at me I just stared the wonder drug gabepentin .its really been helping but I need a higher dose. And with that comes feeling so sick like morning sickness .heartburn that doesn't go away and half asleep.when I looked at the back and saw what this drug can do to u I nearly had a fit.and the worst part most of the nasty stuff is common .And I mean nasty .so guess I'm coming off them . So now what back to the tramadol which I can't really take.or a lifetime of never ending pain.

 

[diamond]

Hi Msfibrofoggy yep we all know how you feel truly. Even with fibro i had good hours or days for the first 7 years and could still achieve things albeit ending up hurting but 'doing' helped keep me feeling like me and my spirits up as best i could....two years on and i am useless month in month out and people keep asking what's changed...and 'that much pains not normal' ( see forgetmenots post ten things people say).

Well i don't know what's changed???? except pain and rigidity and muscles weakness that means i can't weight bear for more than a few minutes or type or hold a book or clean up etc. So I get all you say.... the explaining..the pills...the new symptoms that join the party IBS Migraines etc.

I hope being on here helps.

Forgetmenot i am sorry the gabby is not working out...after all your efforts to get off tramadol!

From vague memory I thought the tramadol did help you and suited you as far as side affects go?

 

[remnant]

Fibromyalgia patients are troubled by various conditions and challenges like pain, lack of concentration and depression. The best intervention in your case is cognitive behaviour therapy. It addresses the thought patterns of the patient that belie their behaviour which in turn causes stress. Counselling sessions usually take one hour and a series of 22 sessions might be needed for recovery including medication counselling.

 

[Eyesup]

There is no know cure for fibromyalgia, that doesn't mean we can't get better. Hope is a huge thing. 40 years ago there was little to know hope of sieving breast cancer, today the odds are in you favor! There are things that help improve our lives, unfortunately fibro patients all seam to respond differently to different problems, so it takes us longer to find what helps and what's a waste.
Hang in there, it takes time to adjust emotionally too. And it will take the people around you time to adjust. Acceptance of this disease both by myself and the people around me has been one of the giant hurdles.
I hope you'll come back and browse through the forums a little. You will find your not alone, loads of tips from REAL sufferers and a place to just vent.
; )

 

[Msfibrofoggy]

Oh we all no how u feel.look at me I just stared the wonder drug gabepentin .its really been helping but I need a higher dose. And with that comes feeling so sick like morning sickness .heartburn that doesn't go away and half asleep.when I looked at the back and saw what this drug can do to u I nearly had a fit.and the worst part most of the nasty stuff is common .And I mean nasty .so guess I'm coming off them . So now what back to the tramadol which I can't really take.or a lifetime of never ending pain.

Yah I'm on gabapentin too, it works for a few months and then quits so I'm prescribed another higher dose I'm now up to 600mg 3 times daily, which I'm still trying to get used to. I am lethargic all day now.
Heart burn was a huge problem for me too so my dr prescribed me Lansoprazol and it really helped. I think that is the only prescription that hasn't given me side effects.
Thanks for the reply it is so much better talking to people who understand instead of a "specialist". I don't know why but sometimes I find their empathy so insincere and annoying.

 

[Msfibrofoggy]

Hi Msfibrofoggy yep we all know how you feel truly. Even with fibro i had good hours or days for the first 7 years and could still achieve things albeit ending up hurting but 'doing' helped keep me feeling like me and my spirits up as best i could....two years on and i am useless month in month out and people keep asking what's changed...and 'that much pains not normal' ( see forgetmenots post ten things people say).

Well i don't know what's changed???? except pain and rigidity and muscles weakness that means i can't weight bear for more than a few minutes or type or hold a book or clean up etc. So I get all you say.... the explaining..the pills...the new symptoms that join the party IBS Migraines etc.

I hope being on here helps.

Forgetmenot i am sorry the gabby is not working out...after all your efforts to get off tramadol!

From vague memory I thought the tramadol did help you and suited you as far as side affects go?

It really does help so thank you. I just feel like sometimes hearing the cold hard truth instead of lectures on trying to keep "The hope alive". As if I don't know how to do that. Saying and doing are to completely different things. I'm 28 and I constantly try to keep myself busy even though it causes me so much pain and embarrassment, but apparently that is what I am supposed to do. I push myself too hard everyday because I just feel so useless if I don't. When I grocery shop and I limp around the store and moan when I have to bend down to get something people stare with pity and I hate that. I'm not pitiful!
A couple days ago my kinesiologist said I should think about getting a cane. I'm 28 and i don't want a cane! People stare enough as it is.
Again thanks for listening to me rant and rave like a lunatic lol. I am just having so much trouble with accepting my limitations and I know I really can't hope for better days when I can't even come to terms with such a drastic change

 

[Msfibrofoggy]

There is no know cure for fibromyalgia, that doesn't mean we can't get better. Hope is a huge thing. 40 years ago there was little to know hope of sieving breast cancer, today the odds are in you favor! There are things that help improve our lives, unfortunately fibro patients all seam to respond differently to different problems, so it takes us longer to find what helps and what's a waste.
Hang in there, it takes time to adjust emotionally too. And it will take the people around you time to adjust. Acceptance of this disease both by myself and the people around me has been one of the giant hurdles.
I hope you'll come back and browse through the forums a little. You will find your not alone, loads of tips from REAL sufferers and a place to just vent.
; )

I wish things were like that now. But I don't know how to even get to that good place. My life is pain. That is all I can think about or focus on. That is all I talk about. I know my family and friends are soooo sick of hearing me talk about it but it is my life. Nothing else goes on in my life. I just go through the motions, cook, clean, go to the doctors or my exercise class, then go to bed and toss and turn all night.
You seem like you are in a very good place right now which for me right now seems like the Land of Oz and that yellow brick road is bumpy as hell.
Thanks for the kind words and support though.

 

[Msfibrofoggy]

Fibromyalgia patients are troubled by various conditions and challenges like pain, lack of concentration and depression. The best intervention in your case is cognitive behaviour therapy. It addresses the thought patterns of the patient that belie their behaviour which in turn causes stress. Counselling sessions usually take one hour and a series of 22 sessions might be needed for recovery including medication counselling.

I'm a little surprised that as a sufferer of fibro that you don't think I know this. I attend monthly sessions at the chronic pain centre and see a phsyciatrist twice a month. I attend exercise classes twice a week to help with muscle weakness, mobility, joint pain, balance and tension. I am currently on 5 different medications to help with the symptoms. I am doing all I can to be normal again but it doesn't work that easily. All of this information was in my first post and for you to brush it off like I can be cured in 22 sessions is a bit of a piss off, considering I have been dealing with this disease for 3 years now and was undiagnosed for 2 of those three years because there is such a stigma against fibromyalgia.
If you are a doctor I really hope you don't dismiss your patient's symptoms like this. It is a complex disease and feelings of depression and anxiety are only a quarter of the symptoms. Please don't act like a know it all when you clearly don't know at all.

 

[Eyesup]

"In a good place". Lol. Not even close. I am the biggest disaster I know and my house, hair, car, clothes and family life reflect it. Just last week I was stuck on my heating pad, on a pile of pillows, staring at the bathroom door, crying and kicking myself for not investing in a box of adult diapers!!! yesterday I was planing the things I'm going to do when I'm better! Sometimes I just have to cry.
I'm so sorry your having what sounds like a long run of what I call "10" days (as in on a scale of 1-10, 10 being the worst!) I just came of months of that. I thought it would never end. It did.
I preach sleep. Not any sleep. Deep, dreams 6 hours straight kind of sleep. Sleep is like a majic pill to the brain. It needs it to rejuvenate and heal. It doesn't sound like your getting that. Please talk to your doctor and c what options you have.
If journaling stresses you out, then take a break. Exersise wears you out, change. Give yourself a break. The no pain no gain theory has the opposite affect on fibromyalgia.
So, if just jot a moment close your eyes, take a deep breath and remind yourself you are worth fighting for.

 

[Trellum]

Hi there! I like to think that it does get better by learning to cope with it But in all seriousness, many of us can identify with everything you said, sadly most people have such a hard time understanding fibro... and it seems even harder when they have an idea of what it is and what entitles. Then since they found out that there is no sure way to diagnose it and the pain is not being caused by something in particular... they feel it's their right and obligation to tell you that you are faking it and that it's all in your head. I hope your experiences have been better My point is... you are not alone, and I am glad you decided to come here and get some support from people going through the very same thing.

Don't worry, sooner or later you will feel better... once you find ways to cope. It took me a while to do that, and I still have really rough days in which i curse my luck for having to deal with chronic pain, IBS, migraines and such, but it passes Like everything else in life.

 

[WarriorPrincess]

You're definitely not alone. Although some of us experience the Fibromyalgia and related conditions differently, it doesn't mean we don't understand. Many have a multitude of various diagnoses, and some of us have had it longer than Fibromyalgia has existed as a diagnosis. I think it's particularly difficult for those who are younger to accept the limitations, particularly when they've been used to living a busy life.

One of the greatest hurdles, in my experience, is getting others (often including medical professionals) to comprehend what we're going through. Good luck with that, because it hasn't worked for me. It doesn't matter if the person lives in the same house with me or lives across the country, none of them understand. Because of that, I also tend to isolate, especially on my worst days. I'm in a flare due to other issues, and it's been a bawling my eyes out daily kind of week, but I do know it will eventually get better. It won't be cured, but I'm in a flare, and flares wax and wane, so I will feel somewhat better and more functional at some point.

Regarding a cane, I totally get it. I had my first back injury when I was around 28, and I'd been very active all my life. It was extremely difficult for me to accept my physical limitations, but I had no choice but to use a cane. I found it embarrassing at first, but needing it and not having it wasn't an option, particularly because at that point, I didn't have a vehicle, and got around via a combination of walking and public transportation. I hope reading the replies here will give you some semblance of a sense of commiseration and support, if not help you to feel better. By the way, there are some pretty amazing looking canes available nowadays, so if you do end up needing one, look around for one that fits your style.

 

[remnant]

Fibromyalgia is a syndrome and sufferers have to contend with its various manifestations and alleviation of the same. A positive mindset and a will to live are indispensable aids to a fibro patient. One should learn to be an optimist. Life seems to have more downs than ups and for one to live not exist, the habit of happiness should be mastered since it is independent of prevailing issues and situations. Best regards.

 

[OutcastWithAmbition]

It really does help so thank you. I just feel like sometimes hearing the cold hard truth instead of lectures on trying to keep "The hope alive". As if I don't know how to do that. Saying and doing are to completely different things. I'm 28 and I constantly try to keep myself busy even though it causes me so much pain and embarrassment, but apparently that is what I am supposed to do. I push myself too hard everyday because I just feel so useless if I don't. When I grocery shop and I limp around the store and moan when I have to bend down to get something people stare with pity and I hate that. I'm not pitiful!
A couple days ago my kinesiologist said I should think about getting a cane. I'm 28 and i don't want a cane! People stare enough as it is.
Again thanks for listening to me rant and rave like a lunatic lol. I am just having so much trouble with accepting my limitations and I know I really can't hope for better days when I can't even come to terms with such a drastic change

I totally understand where you are coming from. Im 25 and have just been diagnosed however have been fighting to get this diagnosis for years. I work in bars and 2 years ago could lift 3 crates of beer at a time, now I struggle to do the simplest of things like pick up a cup of tea. It differs from day to day what I can do, some days not being able to dress myself and others being able to go to work and walk around putting up posters for the club i promote. Still however always in pain. Im on 1200mg of gabapentin 3x daily as well as 200+mg of tramadol, it helps a little but not much. The biggest thing I am having trouble with accepting is my limitations. I feel like i just keep deteriorating and I find it really hard to speak to anyone anout as I feel useless when I am unable to do things for myself and don't want to be a burden to my partner or those I work with. I get migraines and feel sick most days alongside the pain and my memory is non existant. My doctor has said I need to deal with the stress I am outting myself under and that she believes I am depressed and I know that I need to deal with this. I am going to start seeing a counsellor however don't know how long the wait will be. I hate this disease and what it is doing to me. I feel horrible and useless all of the time. I just want to have my functional body back and stop feeling like I am messing everything up. Sorry for the rant.

 

[diamond]

We are with you OutcastWithAmbition...my hands hurt too much to type lots but just to say we get it we care x