People will never quite understand how literal we are when we say 'it has taken my life'

I am hoping to deal better with time as its quite new but fibromayalgia is a spirit killer

Hi Jodie and welcome. I am as sorry as can be that you're also stuck with this awful illness!

I find that there are days that I can cope fairly well and then there are days when I feel like cr*p. I feel pissed and upset that I'll never be able to visit Europe again or heck, even visit my favorite stores again.

It's a part of grieving. Grieving our great loss of health and our sense of our place in the world. Sometimes we move forward through the grief, while at other times we're stuck in the mud and mire of the anger and denial modes.

I would really know how long-term sufferers handle the fibro issue. Do they find a measure of peace? Acceptance? I don't know. Every time I think I'm there, my indignation rears its head at the ugly fibro beast and asks what I have done on this earth to deserve this monster illness?

Yes hun I don’t think anyone can be at peace while suffering this condition it’s the most awful thing I could have imagined to happen to me and the worst part Iv found about it is the lack of understanding from other people, Fibro shows you who truly loves you because it rips your family and friendships apart xx

I hear your pain!

It is such a new condition it took time for doctors and the medical field to learn about it. I was wondering if anyone in the medical field is doing any research studies on all of us.
Until this and a few other sites I felt alone also. I feel I barreled to say I have Fibryomayli due to the stigma that goes along with it. Now some folks say it’s all in our heads. I like you wish that this condition was more widely out there for the public to learn. Since they have not actually found a solid test like blood to diagnosis it I think it will sit on the back burner for a while. I usually say I have a nerve disorder or I also suffer from a pre-leukemia condition called Leukopeni. Some day folks will understand the pain we deal with each day.
Hold your head high and we here totally understand you and wish you the best each day.

Thankyou Ron, yes it’s disgusing how can it all be in your head… I didn’t have a clue what I had was hospitalised 3 times in 3 months and had to stay in for a week each time… I finally got diagnosed by my own gp who’s has been a bigger help to me than anyone at hospital, so I don’t see how it can all be in your head… Still we plod along xx

Hello Jodie,

I can quite understand why you feel like this. I myself have many days when I just feel I cannot live like this. Then i read many posts on here from people who are working thro' it and lead very productive lives. It is certainly not in our heads, and it is becoming more recognised. If you have a Doc who believes in it that is a great help. You will find ways to deal with it, so please keep the faith.

Take care, Anne

Yes Anne my doc is very good and very sympathetic but it’s just such a struggle I have a child in full time and a child in part time school I have to get them to and from school which is a long walk and I don’t drive and I have to walk it up and down 3 times a day it’s so difficult I just thank the Lord that I had my beautiful babies before this grabbed hold of me, how are you feeling hun? ((( hug )))

Hi, Jodie.

It may be worthwhile to check and see if there are any neighboring parents you trust who can help with rides to and from school. That is alot of walking. I can understand how it can be draining. I worry with you’re having to push yourself, you are wearing yourself thin.



Hi Jodie, I fully understand how fibro has taken your life. I’ve had this illness for 25 years. It hit me with a vengeance when I was 29 and my life changed forever. I want you to know that with the help of a good doctor, emotional support from anyone who gets what you are going through, and a willingness to not give up on life, you can get back your life. It will be different and smaller than the life you had before fibro but it can be meaningful. Hope this helps.


I never understood why people couldn't accept diagnoses (I am a teacher and have sent children for diagnosis) whether it has been for themselves or their children or loved ones. To me, especially through the school system, it was cute and dry. This is helping your child and now we have a starting point to move forward. Then I had my diagnosis last October and my process began. I went through all the stages of grief and it wasn't until this spring that I have started to come out of it and come to the conclusion that I need to start the pre work. Do what I can to hinder myself from getting worse - ok I know I will get worse but my aim is to slow that process. Or I hope that I can.

But you are right on the point Jodie, when you talk about it being a spirit killer. It really gets you down and often ruins your chances of doing something or changes your plans.

Hildur, your attitude of trying to slow down the symptoms is fantastic and I think that all people with fibro should be told to strive for that. It's such a practical attitude. That being said, I am not sure quite how yo do it. One thing is for sure, throwing yourself into your job and working harder seems to have the opposite effect upon us; it tends to make our fibro go wild.

I have to be honest, accepting that fibro literally takes away my life has actually helped me to look at my life and the fibro more realistically than prior to that. So thank you very much, Jodie, for bringing it up for us. We really do need to know and understand what fibrob is and isn't. In it's earlier stage, this site didn't address that aspect very much because so many of us were new to it and didn't know what to expect from it.

Thankyou for you comments and kind worse… I was having a real bad day… I honestly do not know how anyone has a full time job with this condition I have 2 children under 6 and I am struggling to be honest ones in half day school so it’s seperate school runs, I hate what this condition has done to me, I am on lyrica and stayed at a friends last night forgot my tablets… Only missed one… Woke up this morning feeling like my pelvis had been broken and my hips shattered and the only thing that loosens it up is a bath hotter than even my feet can take it, and tramadol… I collapsed on my bed after my bath and it took me hours to come round properly… I’m 26 for God sake and I can’t even stay at a friends if I don’t have this medication it’s so devastating the effect this condition has on us xx I wish you all well and give you big Fibro friend (((hugs))) xx

It sure is Jodie! I was finally diagnosed about 15 month ago and I still have days where I have a hard time dealing with the fact that I have a disability and I'm not who I used to be. I still get mad, frustrated and upset at times. I have finally accepted the fact that I am who I am now and I have to make the most out of life having this condition.. In time you will feel a bit better and get your spirit back!

Just remember that you are Jodie, who happens to have fibro, you are not fibro. Do not let it define who you are. You have my prayers.

Thanks for your kind words both, nice to speak to people that don’t look at me like I’m lying through my teeth so I can be lazy, you can’t possibly understand this unless you live this xx

My biggest problem is getting my husband to understand that I'm not up in the middle of the night for fun so I can not do nothing the next day , I'm up because the storm is making me hurt and I'm on line so I can distract myself from the pain so I'm not crying or screaming keeping him awake too.

Exactly the same hun my chaps really good nine times out of ten but sometimes he struggles with it but it’s stressful on the families too isn’t it that’s why they say Fibro is a relationship killer and it’s because it’s too horrific to even give it justice by trying to explain it xx

I have to say that I'm very fortunate having the husband I have. He really tries to be supportive. Sometimes I feel guilty because when I'm in a real bad place I can be a Bi***.

We have spent 36 years adapting to our ups and downs of life so I'm pretty sure that we will make it through this.

Me and my partner have 2 children both under the age of seven it’s very stressful and difficult at times but I just thank the Lord I managed to have my beautiful babies before this horrible vicious condition showed up xx