Medication or advice for extreme fatigue?

[lupey73]

I was taken off steroids by new consultant about 7yrs ago(due to long term side effects). Had to stop Hydroxychloroquine a few months back due to horrible skin hyperpigmentation. I try to pace myself but noticing that I’m getting more ‘lupey’ days where I feel exhausted and sleep on and off all day. This current episode has lasted a week and is getting worse so I don’t think I’ll be able to work this week. So frustrating as I have so much to do! Feel I’m sleeping my life away. Consultant said no medication helps with fatigue, but I’m sure it’s worse since coming off meds. Is anyone on anything they think helps with fatigue? I usually like swimming and yoga but can’t drag myself off the sofa. Read that exercise can help fatigue- has anyone found this works? Usually so active and push through fatigue, but have been trying to listen to my body and rest more, and when like this, I feel exercise would be impossible.

[Penguintaz]

Hi Lupey,It sounds like you are struggling more with being taken off medication, I certainly notice a difference in my energy levels in high Vs lower levels of medication!

I have a friend who has chronic fatigue and while true there is nothing for it specifically, it bothers me that your consultant isn't even going over some options with you. Maybe some supplements might help?

I personally feel one should try to do something, even on low spoons day. But just as much as you can, pushing yourself and doing too much will lead to a worse case of fatigue! Some days all I do is stretch but it's better than nothing and some days I can do more high intensity stuff. Sometimes just starting excersice can encourage you/ give you the energy to do more (I try and do something small most days, like a walk and notice overall have I have more energy) but other times I notice I only feel worse and those days I cut it short and am happy I tried!

[Ilovepuppies88]

Hi lupey73,

I have only been diagnosed but looks like I've had it for coming to a year, I've told the doctors about feeling fatigue all the time unable to focus etc. I did yoga too but had to stop due to flare ups. What has helped me is dragging myself for a walk to the park in the morning as much as I did not want to because I just feel so tired all the time, I forced myself. It helps me quite a bit, not only you have the fresh air, your outside, it just feels to me like a relief the moment I step outside and you just feel better instantly, I also try not to play on my phone now when out and just focus on my walk alone, sometimes it's long, sometimes it's a 10 minute walk but it's proven to work for me, if you haven't tried a daily walk in the park. Hope you feel better xx

[Roarah]

Have you ever had a sleep study? Low Quality of sleep is as detrimental as low quantity to day time fatigue. A sleep study will rule out apnea and other sleep abnormalities.

I have found treating my anxiety and depression, walking daily, consistent sleep hours and meditation have greatly improved my daytime energy. Since starting this regime I have only napped once in three years where as I use to awake tired and wish to nap all day before these changes.

Full disclosure these changes occurred right after a atrial aneurysm and pfo were fixed so it may have been that that made the difference too. However if I miss any of the above practices my energy is always depleted so I do account my overall improvement with diet, exercise, mindfulness and sleep hygiene.

[PMRpro]

You might find the links in this post on another forum helpful - I think I also posted it here but thi is the link that is easy to find for me!

healthunlocked.com/pmrgcauk......

It all depends what is causing the fatigue - there is the anaemia of chronic disease or biochemical derangements that can be apprached with medication. But fatigue is an inherent part of almost all autoimmune disease and then it is like the fatigue of flu, due to the effect on the body as a whole. Sometimes the medication does something to that process - and makes the fatigue less. No, there isn't anything that works for fatigue - but sometimes the meds working on the disease itself do make you feel better - and less fatigued.

[Emma_S]

I find that my diet has an impact on the fatigue too, when I'm exhausted(which is a lot) I tend to head towards sugary things but notice and even worse dip afterwards. Have you tried changing what you eat and when?I also have a fitbit that shows my sleep - and was surprised that I have more restless sleeps than I thought!

[Bebe76]

Are you on any medications? You could be flaring since you are now off steroids and HCQ. My fatigue is worse during flares

[MusicalFurbaby]

Hey lupey73, sorry to hear about your fatigue, it sounds horrible. I can’t help you with the medication stuff, but in terms of exercise, I’m not a fan. I’ve never really been a fan, but I find it very tiring. I live with chronic dizziness and it gets badly triggered after 30-40min walking. I enjoy a slow walk, and swimming helps with my chronic pain (which I can’t do due to the pandemic) and boxing helps when I’m super stressed. But it’s always tiring, and I always need to recuperate afterwards.

I say do what works for you! No one else has to live in your skin except you!

[MrsMarigold]

Hi lupey73. All the above suggestions areGood as sleep hygiene, exercise, good nutrition and even meditation and mindfulness help autoimmune disease

And the body it is living in. But I’m going to

Speak a different opinion. I was not diagnosed for 30 years or longer. Spent my life doing all the above. All the above helped; but the inflammation of lupus can be insidious/hidden and manifest in the form

Of fatigue. I do not believe that most lupus

Persons can treat this disease without

Medication. I do not know of another medication that would help with fatigue

Better than prednisone or hydroxy. If there

Is, I’m very puzzled with what your Dr. is

Telling you. Lupus and all it’s friends (symptoms) are constantly flaring and revealing themselves with different symptoms especially fatigue. The kind you

Are explaining needs help with more than

Natural remedies. I too have some pigmentation issues with hydroxy that I am

Addressing with my dermatologist. I take

400 mg a day in divided doses of 200.

Also 3 mg a day prednisone. It once was

Quite high. Sometimes quality of life

Trumps side effects of meds. Actually

For me, this always is the basis for my

Decisions. So pigmentation issues for me

Is minor compared to sleeping every day

All day. The use of prednisone is not taken lightly. But if it will offer a real life to me,

I may make a decision in the future to

Take more. Last, these decisions are discussed with my DRs. And my Rheumatologist offers the options and allows ME to make the decisions. I hope this helps. Without other pertinent info

On your age, other diseases, lupus symptoms I could be just whistling in the dark. Best Regards, Titters

[Oshgosh]

I think penguin taxis right about not doing too much..I e got lung disease also auto scan idiaeases.

I get tired.

Some days I put my coat on a nand onlymanage to walk for a few minutes,but it is better than nothing.

I also managed to get back in the gym last week.complete with oxygen trolley. I don’t do much,but it does help my rheumatoid arthritis..

M not a fitness freak,but just want to try to keep going.

Before COVID,if I felt a bit rough in the gym,I’d sit down for a while,then if I felt better,I’d do a little bit more., other side,we’d go home or go for a coffee.

Luckily we’re both retired and my husband is supportive.

Can you leave a message for your rheumatologist about how awful you feel at present ?

Outs worth. Try.

Look after yourself.xx