Fatigue

[Hollydebs]

Hi All. Hoping for some advise please.

I am struggling badly with fatigue and have been for few months. I've had to take time off work with it which didn't please my Manager!

At present I am taking Hydroxy as had to stop Aziathroprine due to severe stomach issues.

Don't get a lot of luck when talking to the GP or even hospital re fatigue.

It's starting to affect my day to day life.

I don't want to go or do anything. I'm refusing invites from friends. I don't even feel enough energy to go for a walk.

I work part time, 2.5 days wk. I find on the 2 x full days I work that I'm so exhausted that I have to use up any small reserves just to function as best as I can. I feel that my work is slipping and I'm just at a loss on what to do.

Are any of you on any other Lupus/Sjogren's meds that helped with the fatigue side please.

I'd appreciate any info given xx

[Johnnyb10]

Hi when I was ill and had bad fatigue for several months in 2011 I was then diagnosed with lupus. To calm down symptoms I started on steroids for a few months with dose gradually reduced. I then went on hydroxy when under control. You need to speak to your GP and try to get to see the rheumatologist. If you are already with a rheumatologist maybe phone clinic up as sometimes the rheumatologist might phone you with advice. That was something I could do on certain days with my first rheumatologist. Hope things improve John

[Sara_A]

Have u been to pain clinic? I did a pain management programme yrs ago and they help u deal with fatigue as do occupational therapists do u could ask ur gp to refer u x

[Hollydebs in reply to Sara_A]

Thank you Sara. I didn't know there was pain management programme. Will look into it x

[misty14]

Hi hollydebs

So sorry to read your struggling so much with fatigue!. Especially as it's affecting your work!. It can be one of our worst symptoms and difficult to treat.

Have you been tested for anaemia, thyroid?. They can be culprits!. It's usually a sign of active illness so I wonder if your Hydroxy dose could be increased to compensate for no Aza?. Have you been to your Rheumy recently?. A short course of steroids can also help with fatigue but I wonder if you could take them having had stomach problems?.

Just a few thoughts, I hope you improve soon as it can be very debilitatating. X

[MoyaP]

I know how you feel and you have my sympathy. I was referred to an Occupational therapist recently and she discussed fatigue management and gave me literature to help. Could your Rheumatologist/GP refer you? I have also downloaded a Headspace app and find meditation helps. Xx

[Kevin53]

It’s not easy, there are some good suggestions here. Keep a simple diary even if you just score days out of 10, it may give you some pointers to good days. May sound daft, excercise even in small and then increasing quantities can help. Initially it can feel the fatigue has increased, then you start to notice the improvements. Best wishes Kevin

[vsccalde]

I'm sorry that you have this condition. When I first got lupus I had terrible flare. 4 months I was in bed. After that it took a very long time to recover about 6 months I was able to take my dog for a short walk. Fatigue is a terrible part of lupus. I found that if you sleep every moment that you can then it's like banking time. I time manage like a banking system if I take some energy out that I have to put it back in later. I've had lupus now for 10 years and doing much better. Follow the advice of the other comments but but resign yourself to this fatigue that you will have and then move on with your life. I hope this doesn't sound too gloomy, I have a great life it just has to be controlled.

[chrisj]

Sorry you're struggling Holly....fatigue was one of the main symptoms for me before diagnosis. I was sleeping all night and half the day but I dont work so that wasn't a problem. They put me on plaquenil from the word go and a lot of the things I was suffering from began to ease

I still get tired sometimes but am much better than I used to be. I've had to learn to pace myself, was able to see a health trainer at my gp surgery for several weeks who advised me and was a great help. Just unloading my concerns and being able to talk to someone who was listening helped more than anyone or anything in the 12 years since I was diagnosed

I also have osteoarthritis, asthma and sciatica, became afraid to go out because of the pain....BUT...now months on after talking to the health trainer I'm walking for up to 40 minutes with my son, just local but it means I'm out of the house for a short time

I've never taken anything for SLE but plaquenil, sorry I cant be more help xxx

I agree with John, you need to contact one of your health team

[dianna123]

Hi, Sorry to hear of your extreme fatigue.......I've experienced the same I started taking over-the-counter magnesium supplements and there seems to be noticeable improvement........ Just saying.....is all. Can't imagine why.

Best, Dianna123

[Hollydebs in reply to dianna123]

Hi Dianna

There's been few mentions re magnesium sulphate will look into this. Thank you.

[Hidden]

Hi, I’m new to this blog , saw your post & wondered if you have had a blood test for anemia, I was struggling with fatigue which is normal with Lupus but I was so exhausted I thought something else must be going on. Anyway turned out I was anemic. Have been in a course of iron tablets & although I still have fatigue it’s not as awful . Not sure if this helps you.

Hope you find something that can help.

[Andrewc]

Hi may not be relavant as I also have lupus nephritis which has led to end stage renal failure so I have to have dialysis 3 times a week but I would ask to have your iron levels checked it's surprising how a dose of iron can boost your energy levels.

[leslieliesel]

Oh Yes...fatigue ....I was just Dx'd at age 62, and had major surgery last March so I thought I was just getting old, and recovering from surgery..then the RASH then the DX..I was put on Prednisone and Hydroxychlo...?lEnd of Aug, begining September. I am feeling a lot less fatigued and my rash is all but gone...but Oh My...the fatigue....I hope you find relief soon..xoleslie

[Chanpreet_Walia LUPUS UK]

Hi Hollydebs,

Almost 90% of people with lupus report experiencing fatigue making it one of the most common symptoms of lupus. We published a blog article on managing fatigue which I hope you will find useful: lupusuk.org.uk/managing-fat...