Fibromyalgia - tips/support/advice

[Deleted User]

Firstly please no medical advice as I don't want my thread to be deleted.

I have been diagnosed with Fibromyalgia this week. Its been a relief to find out that my symptoms of years finally has a name. However I was saddened to find out that there is no cure, just management of the condition.

I am a single parent, have my own business and also doing PA work for people with disabilities. I aim to stay as active and positive for as long as possible.

I can mostly cope with the pain/feeling uncomfortable etc, its the fatigue that gets me. Trying to keep going whilst cleaning/working while I feel like a lead balloon and just want to lie down. However a desk job would equally be as uncomfortable as I can't sit for hours at a desk.

I swim regularly, try to keep as fit as possible, slender in weight and have a healthy lifestyle, I'm hoping this will keep me in good stead.

What frightens me is being alone (no husband/partner) with a condition that is exhausting some days. If my husband was living with us still, there wouldn't be the pressure to work as much, to keep the house, to do everything. There would be someone helping. I'm trying not to dwell or panic, but its hard not too at low points.

Ex husband would help more if I asked but he is restricted during the week, so there isn't much more he can do.

I'm not at the bottom of the pile yet. :T But can others with chronic fatigue understand how I feel. Lately I feel life has thrown some major hurdles my way........

It really is an invisible illness, to look at me you'd never know.

Sparklyfairy

Hi there,

I have ME, so I know exactly what you're going through. I'm unable to work as my main symptoms are migraines, brain fog, IBS & exhaustion..nightmare!

I hate telling people that I have it because it's clear many just think I need to "snap out of it" - hardly helpful! I do think, though, that the absolute worst thing is when I have to cancel a play date or a fun day out with my children because I feel too ill. Do you get that guilty feeling too? My girls are very good, though. They just get on with things (they are 10 & 7) but the guilt on my end is bad. My husband is very good, he doesn't complain when the house looks like a bomb site - so for that I feel very blessed.

I hope you never reach the bottom. I do think positive thinking, yoga, good nutrition & (without getting too medical) good supplements CAN make the world of difference. XX

joeblack066

I have FMS, work full time, no partner, have raised 4 kids. Best advice- listen to your body, pace yourself, and give up artificial sweeteners. Helped me loads. Good Luck.

[Deleted User]

Thanks for your kind reply. I do understand how people would think that you should just "snap out of it" or just get on with things. If you look ok and function well, it must be hard to understand how debilitating some conditions are. I'm afraid I would have been guilty of that in the past.

I am sorry to hear you understand through experience but glad to know you have a supportive family.

itsanne

Removed as completely wrong info. Sorry.

Brighton_belle

I'm very sorry to hear this news Bailey - you really have had a lot thrown at you in the last year or two. I hope at least having a diagnosis, for what was already happening does actually help in same way.
I too have a condition that create buckets of fatigue (and hving a name for it did really help me not feel I wa just a lazy wimp), though over 25 years, I have got some sort of life back.

My tips would be to learn to prioritise and say no. Simplify your routines at home at much as possible - I personally have found major de-cluttering and everything I do own having a place help me keep order and makes house work easier.

If your ex husband is willing to help, try and think of practical things he can do for you and the children, even just once a week that might make a difference. And think about what chores your children can do - don't feel guilty about that, it's part of being a team.

dingdongavoncalling

I can sympathise with your tiredness, I have recently been diagnosed with several conditions which mean I am struggling with every day life. I manage until early afternoon and then just feel so fun down I have been put on lots of medication to try and manage my condition. It really is like an invisible illness and people expect it is all in your head/snap out of it etc

Sparklyfairy

Hi again, OP. Have you had much luck with your GP? My GP was useless & I have since changed to a much better one. However, I do find that GPs tend to just treat the symptoms, not the underlying cause. The meds I was given (mainly for migraine) never helped & some were quite strong. What's been (oddly) really helpful is juicing & making green smoothies. Also seeing a nutritionist has been great. Colostrum & lactoferrin has made me feel normal again - which is huge - I'm seeing fun things in my future now, lol! But as the other say, pacing is key. Don't push yourself too far, not worth it. The messy house can wait. X

KxMx

What kind of management have you been offered? I am finding the pain clinic useful and am seeing a fatigue specialist next month. The latter are few and far between however with long waits so you'd probably have travelling to do.

Support groups are also a really good idea.

paulineb_2

My friend has the same condition, shes a fitness instructor and so far it hasnt stopped her teaching classes, she has her good and bad days.

Im sure there are support groups out there where you'll get help from people who also have the same or similar conditions.

dogcat_2

:)Hi....I too have been diagnosed this week with fibro....after years of not knowing what was wrong with me....I thought I was going mad! I've been tested for thyroid, MS, Vasculitis...to name but a few. I also have Ulcerative Colitis and IBS. I know exactly how you feel...all sorts of strange feelings..and pain...and get sooooo tired. Never sleep well either. Don't give in to it...rest when you need to. I've recently given up coffee and I do feel slightly better for it. Hang on in there!;)