Lupus and fibromyalgia = HELL

[X-Jojom-X]

So I was diagnosed with lupus 11 years ago started to get it under control a few years back and bam diagnosed with fibromyalgia too, both have very similar symptoms which infuriates me !! Lupus flares so does the fibro 👎 it’s hell im 25 I feel like my life is not and will never go anywhere, I’ve nothing to get up for nothing to look forward to everyday is getting worse and I just can’t see how things can get better infection after infection a week vacation in hospital lots of days stuck in bed , no motivation no hope I’m so done 😓

[Makimon]

Hiya Hun,

I can really relate to you, I was diagnosed with Fibromyalgia in 2013, ME in 2015 and now I have suspected lupus. It seems never ending.

The symptoms are really similar too so it’s quite hard to differentiate between the illnesses isn’t it? I hope that even though it’s really tough for you that things get a bit better soon.

I’m only 29 and feel quite stuck too. When you’re a relatively young person with chronic illnesses it can be really isolating and frustrating when you see other people your age doing things that you can’t do.

Sorry I can’t be of more help, I just wanted to let you know that you’re not alone 😘

Sending lots of love,

Sophie x

[Sara_A]

Hi, I too understand how u are feeling I was diagnosed age 21years with rheumatoid arthritis but through the years has been found to be lupus and Aps. I am now 38 Years old.

I had to cut my working hrs as a nurse down to 2-3 days a week in my mid 20’s and still work only 2 days now.

I have a home a partner and 2 young children so it is possible to achieve some things! I know how hard it is as I struggled, just working and sleeping for yrs.

I still struggle very much now and still feel very fed up a lot but I suppose today I feel ok so can give u advice and try to help u, whereas it’s usually me in ur situation!

It’s so horrible to have to live with this pain and tiredness but look ‘well’ (apparently!!)

What medications are u on for it all? It’s the fatigue that is the hardest to treat and the worst to deal with.

Don’t give up u can achieve things u just have to make adaptations! And make ur daily routine/life as easy as possible.

I.e I have a blue badge and use the lift at work when I’m feeling so awful and just those 2 little things have had a big impact on my fatigue therefore life. Sounds silly but it makes everything else more manageable.

[X-Jojom-X in reply to Sara_A]

I’m a little out of it on painkillers at the moment thankyou for your reply I appreciate it I will get back to you as soon as I can properly xx