What is the most frustrating or difficult aspect of living with fibromyalgia?

brunette you rant as much as you like no one can tell you what to say and when and sometimes its actually therapy in itself and shows that people who understand will get where you are coming from I moan to that's just the way I am and I have very few people that understands it my mum absolute rock really don't know what I would do without her and a couple friends because they suffer to but not much more never has been its like you don't know what you miss until it has been taken away from you.xx

I myself seriously struggle with the way fibro has taken over my life. I cant work, im in constant pain and always feel exhausted and my brain has gone to mush! And to top it all off i have to battle to be believed by the benefits system. And after all of that the way not being able to work makes me feel like a second class citizen. I have no life.

Constant fatigue and running out of energy every day!  I work 26hrs Mon-Friday and need to go to bed by 6pm.  Some weekends I don't get up at all so that I can get up for work. Having this and RA as well is a constant battle, some days you just don't want to be a warrior!

Hello everyone, 

How have you been? I thought I would revive this older discussion because it fibromyalgia can be different for everyone! 

What is the biggest challenge you face whilst living with fibro? Is it the pain, the fatigue, the stiffness, the poor sleep? Or is it something else? Have you had to change aspects of your daily life or routine because of it? How do you cope with these challenges?
@Lulajub00‍ @JennyC1957‍ @ros1959‍ @Bodie2703‍ @MrsB007‍ @Lhyland99‍ @jojodob‍ @Sukiyakiuk‍ @Katcon‍ @Catherinet‍ @martonminx‍ @Jiinny‍ @Vicstar11‍ @Cruxxy‍ @lavendercottage4‍ @chrissyyy123‍ 

Feel free to share your stories and experiences here!

Take care,
Courtney

all of the above unfortunately, I get some weeks where I seem to be doing really well and then it all comes back to haunt me again.

I just try to keep positive and push myself to do abit each day even if I'm really struggling. My husband calls me the pillow queen as I keep purchasing different ones to see if i can make sleeping  any better.

@jojodob Yes, the cyclical nature of fibro is so awful! I'll be fine for a month or so, and then WHAM I feel like I've been hit by a lorry! Just awful!

I too try to stay positive and not be a drag on my family and friends, but some days it's hard. Thankful to have found this community!

@MariaB yes me too, it helps you to understand the effects it has on everyone and you don't feel so alone x

Fibromyalgia

1.       Is a real physical illness, just as real as heart attacks, high blood pressure, cancer etc.

2.       It is invisible to others, just as invisible as heart attacks, high blood pressure, cancer etc.

3.       It is something you CAN recover from.

4.       It is an entirely unique illness to you (may have some similarities to others).

5.       The cause is the same in everyone – a drive that makes you strive to be busy all the time.

6.       You are NOT lazy – just the opposite – hence the frustration that others may think you are.

7.       It is designed by your body to stop you from persistently overdoing things.

8.       When the pain does not stop you, the nervous system increases the pain, hoping that will.

9.       It was diagnosed after something traumatic that did finally manage to stop you: Glandular fever, death of a loved one, car crash, serious accident etc.. (different for everyone)

10.   This is a vicious circle that can be broken in a specific way.

The answer is not in “proving” you are ill, or making others understand, that literally will make it worse. It is understanding why you are ill and instead of “fighting” the illness, take the understanding and work with your body and mind to remove the over-protective state, that does more harm than good. This is not exercising or avoiding exercise, both can trigger more problems. It is having the nervous system reset and be ready to make you aware of issues rather than constantly running with a level of pain and fatigue that stops you having a good quality of life. I wrote my theory about this and you can access it at: https://oldpain2go.com/meandfm (if admins allow it).

This information is free of charge and I do not capture email or contact details, so you can do what you like with the information, including ignoring it if you wish. I think it is worth a few minutes of your time to find out if it gives you a better understanding of yourself and some hope of escaping this terrible illness.

I am happy to answer any questions in this group.

With love, Steven

For me the major issue is the uncertainty. How will I feel tomorrow? This afternoon? This evening? Can I schedule an outing? What will be the next symptom? Is this fibro or something else? My difficulties come from the fact that I don't just have fibro so I have many things going on and some are still in the process of being diagnosed, so I am always waiting when I wake up to see what my body - and my kind - are doing that morning.  Are there any new pains? How tired am I? How quickly can I get out of bed? Am I stiff? if so, how do I get out of bed? Always carefully!

Though to be fair, since I was taken to A&E in May - yes right in the middle of the pandemic pandemonium - the NHS is being very helpful and very pro-active. Lots of tests - from 3 hospitals (yeh!) - and quick responses from a nurse specialist when I ask questions. But 3 COVID tests down now... all negative - please no more..

@elliewc You make an excellent point, I think uncertainty and unpredictability is common for patients with fibromyalgia and other chronic conditions. That must have be so frightening for you in hospital! I hope you're feeling a bit better and that you'll have some answers to your questions soon!

Can anyone else relate to this feeling of uncertainty of unpredictability of their fibro?

Take care,
Courtney