Extreme fatigue advice.

[Becky1995]

Hi all,

Since the start my main symptom of lupus has been extreme fatigue. Along with daily joint pain and extremely painful flares 😩

I’m 25 and have been on Hydroxychloroquine for just over a year and the fatigue hasn’t changed at all.

About once a week I come home completely wiped out. Come home at 4:30 sleep until dinner at 6:30. Sleep again until about 9 and then from about 10 until the morning and I will still wake up so tired and almost unable to keep my eyes open.

Every single day I have to take atleast 1 nap, including weekends and am completely wiped out. Every morning is horrific getting out of bed and for a 25 year old, I just don’t want to do anything in the evenings, I just don’t have then energy. Sometimes by about 2pm at work I’m just done and can’t do anymore.

I’ve seen mixed opinions but most people seem to say that once on Hydroxychloroquine the fatigue should become under control. Mine hasn’t eased at all.

I’ve learn how to deal with and cope with extreme pain but fatigue is frustrating. The only way to solve it is to sleep and miss out on life and even then it doesn’t help that much. Is there anything I can do or any good ways of dealing with it?

Any advice would be much appreciated!

Becky xx

[Spanielmadlady]

Hi I think you will find many of us are the same having to sleep as much as possible and nap during the day as well as pacing yourselves , learning our limits and sticking to boundries.its all part n parcel of lupus I'm afraid.if you haven't had a rheumatology appointment recently it might be worth asking for one and see if another drug like mmf or methotrexate might help you.ive been on prednisolone for over 6 years, hydroxchloroquine for 2 years and mmf for 1 year.im prescribed pregabalin for pain . Best wishes x

[Becky1995 in reply to Spanielmadlady]

Thank you! I haven’t had an appointment for a long time and had one coming up in Oct which they have just cancelled. I’m so annoyed! But I understand.

Thank you, I will try and discuss it with them! They told me because of my age they didn’t want me on any other medication as Hydroxychloroquine has the least side affects given I’ll be on them for life. Not sure if that’s correct or not, so hard when you jsut have to trust your specialist!

[Spanielmadlady in reply to Becky1995]

I dont know about for life I'm 2 years into a treatment plan they think will be for 4 years there are other things which can cause fatigue like b12 deficiency anaemia and thyroid illness which are other AI illness and can go hand in hand with lupus so if I was you I'd make sure I got another appointment.ive been ill since 2013 but wasnt diagnosed with lupus and lupus nephritis until 2018.in those 5 years lupus has damaged my lungs,my kidneys and inflamed my heart.ive still had all my check ups from all my consultants by phone or video call.x

[avionne]

Hey how long have you had lupus

[Becky1995 in reply to avionne]

Diagnosed for about a year and a half but I’ve definitely had it for about 4 years it was a long process to get the diagnosis. So since I was about 20/21 x

[avionne in reply to Becky1995]

Perhaps this is why. When i first started treatment i felt worse than better it took going in my 3rd year and lifestyle self changes for me to be able to function

[Becky1995 in reply to avionne]

Thank you! That’s actually quite comforting to know, fingers crossed I have the same experience! X

[Jhpc in reply to Becky1995]

Maybe have your Vit D levels checked with your GP x

[Becky1995 in reply to Jhpc]

Good idea thank you! X

[Amakura in reply to Becky1995]

Or even get your iron levels checked as well

[Becky1995 in reply to Amakura]

Yes good call! I will ask them! Thank you! X

[PMRpro]

healthunlocked.com/pmrgcauk......

There is a version of this on the Lupis forum too. Do read the links.

The fatigue is part of the autoimmune part of the disease and ofte is not improved greatly by the medication. It is a question of pacing - and another useful resource is Despite Lupus by Sara Gorman - a blog and a book. Once you get the hang of the pacing and resting you can improve your quality of life a lot. It won't be perfect but it can be better.

[miccika1]

who are those lucky ones that got their fatigue solved with hydroxy? most of us i believe need a cocktail of meds in order to function. hydroxy is a first line and it's really great that some people respond to just that, but reality is that most of us need more than that, and reading your story you look like you are in such group. please work with your doctor to find the correct meds for you so you could stabilize. for example i take A LOT of different meds and still have 70% good days and 30% bad days. Without all the meds I would be more like you, I used to have only 10% of good days and 90% of bad days (malaise, brain fog, pain,...) Maybe you doctor is not good enough? i had to switch my doctor at one point to get better meds...

[Ar29980]

I had anaemia with my B12 low and was prescribed Aranesp weekly. The prescription Cyanocobalamin 150mcg tablets did nothing over 2 years so I bought Methylcobalamin 1000mcg tablets and took 1 daily for 2 months. My level shot through the roof! Worth a try as my energy levels vastly improved. At one point I couldn't walk from the car park to the door of the supermarket so definitely worth a try