Constantly tired

[MrGrey1234]

I was diagnosed with lupus 4 years ggo, I also have fibromyalgia, and hypothyroidism, im on hydroxychloroquine 400/200 alternative days, I am tired all the time, no energy aching joints, had bloods done, consultant said they are ok and that's it, I get left to live like this, I'm off sick at moment, with anxiety and depression, and feel I can't go back to work , but need the money, any advice would be grateful thanks x

[PMRpro]

Have a read of the links in this post on another forum - it does appear on this forum somewhere but finding it is another matter!

healthunlocked.com/pmrgcauk......

The fatigue is part of almost all autoimmune disease - and you have a triple whammy. There is no magic answer except keeping them all as well in hand as possible and then it is over to pacing, resting - and delegating. Have you applied for the benefits to help you work if you can as much as you can manage? Was Disability Living Allowance, now called PIP:

gov.uk/pip

Is your GP sure your thyroid problem is managed optimally? A study found that taking thyroids meds at night could improve how patients felt during the day. Always worth a try.

[tree_shadow]

I find going for long walks helps.

[marypw]

Sorry but there is no magic answer; these are common symptoms for so-called mild lupus and fibromyalgia.

However you may be able to self refer for help with mental health (depending on where you live). Check out NHS mental health services via Google. I have been getting some CBT and support that way. I also bit the bullet and got some antidepressants via my GP.

Everything is over the phone, but it is at least something.

I haven’t seen a rheumatologist or a cardiologist in person for 4 years, and face to face GP appointments are minimal. It’s not surprising so many lupus patients experience mental health issues.

Best wishes

[DogsMakeLifeGood]

So sorry you feel so unwell. You can apply for PIP and ESA worth having a look.

[Hamptons]

I have acupuncture every three weeks which I find eases fatigue.

Get an access for work assessment as there maybe supports that can ease joints etc. I got a chair, special Keyboard and mouse. Which help.

Have you discussed appropriate measures with your employer so starting later/ finishing earlier/ flexi time? I do a 9 day fortnight which prevents me getting overwhelmed.

[Millie74]

Sorry to hear that you are feeling so unwell. For me managing fatigue is the most challenging part of living with Lupus. I was diagnosed with SLE about 12 years ago and have learnt the hard way that I have to listen to my body and rest when I can, particularly during a flare up. I’ve found understanding what triggers a flare up and extreme fatigue is the key to getting enough rest and pacing myself. Don’t be afraid to say no to invitations if you feel it will be too much. Fresh air and exercise really help me as well. Hope you are feeling better soon.

[Paprika60]

I very much feel for you as all who read your post have, I am sure. Of all the challenges, fatigue and no strength are the most difficult as we have to deal with them day in day out...I can only say that you must believe that you will get better very slowly even despite a daily set back. I was in a bad way over several years after I had a stroke due to SLE and therapy I was given. But I am so much better now. I have really worked on myself. That is the only way I am afraid. Doctors can give you medication and order tests but the rest, you have to do yourself. Because you live with your body 24/7. Doing a little bit every day helps. A little walk that you can manage even if it means five or ten minutes at a time and walk twice a day even, if you can manage. Try to give yourself nutritious food and good supplements can help. I have found gentle iron tablet gives me a little extra strength. Looking back I actually started feeling drowned in fatigue ever since I was put on Hydroxy (400mg per day for years and now down to 200 mg). And yet I have to take Hydroxy as this keeps all the inflammation of joints at bay. Otherwise I would truly suffer. It is lesser of two evils. I noticed I started feeling less tired when I reduced 200mg. I cannot be sure that is the reason but in my case, I have felt the difference. My doctor says Hydroxy would be the last thing to take off if I ever get into a remission (!). So it is a must medication. Have you asked your doctor for extra therapy such as biologics? That could help and perhaps you can stay on 200mg daily

. Please be kind and very supportive to yourself. The encouraging voice inside yourself is really important. Keep believing you will get better and you will eventually. 🙏Take care!