Excruciatingly tired!

Does anyone have fatigue that’s so bad you fall asleep mid conversation or have to fight sleep constantly? My eyes are rolling and desperate to go to sleep I have to force myself to sleep walk through the day

[Spanielmadlady]

I cant say I've ever fallen asleep during a conversation ( unless it's my daughter texting at silly clock 🙄) but I do have spells of fatigue when all I want to do is sleep.I call them sleep days. Ive learnt not to fight it,go with the flow and sleep.i find a nap for an hour is usually enough to get me through to an early bedtime. It's a horrible feeling fighting the need to sleep unable to keep your eyes open.i can sleep all night,get up and need a sleep dinnertime and another at teatime then still go to bed and sleep.its usually worse when my b12 is low and I'm due my Injection or when I drop my steroids 😴😴😴😴

[PMRpro]

Fatigue is an integral part of almost all autoimmune disorders - and this is a link to a set of posts I have gathered here on the LupusUK forum:

healthunlocked.com/pmrgcauk......

It really is true that planning a rest BEFORE you would hit the brick wall of fatigue will allow you more useful hours in the day. Another very relevant resource for you would be Despite Lupus - a blog by Sara Gorman:

despitelupus.blogspot.com/

She has also written a book. She writes a lot about the planned rest that allowed her to work and care for her two girls, both born after she was diagnosed with lupus. If she missed her nap for more than a day or two she would have a flare and even being late could mean trouble!

[Hidden]

Yes sometimes lately - only until now I’ve tended to become manic rather than fall asleep during conversations. But lately I’ve found myself tailing off a lot half way through a conversation, too tired to speak. It’s definitely an autoimmune thing rather than specific to Lupus though as I have overlapping conditions and every community I’m on has complaints of intractable and severe fatigue.

[Josiah150767]

Hi

I suffer with bouts of fatigue, where having a conversation is a real effort. I try as much as possible to go with the flow and sleep otherwise I end up feeling really unwell.

[Joaclp]

I was told I had narcolepsy when I was first diagnosed with the complex of autoimmune diseases that are still not firmly diagnosed. At that time, 20 years ago, I had autoimmune hepatitis followed by RA, Sjögrens, etc. The symptom was beyond the extreme fatigue and mental fog typical of AI disease; I fell asleep spontaneously in many situations. I was given a drug called provigil for about a year. Hope this is useful.

[Djlr in reply to Joaclp]

Yes - I agree that this “type” of Fatigue sounds a little different from the regular “Extreme Fatigue” that can accompany Lupus Symptoms.

Usually our Fatigue doesn’t hit us during conversations, because we have usually found somewhere to rest when the Fatigue is overwhelming.

This does sound more like “Narcolepsy” - we have had Lupus patients that have had both. One patient said it would even hit her while driving and sitting at a Stop Light.

See your Doctor to determine if you just have Extreme Fatigue with Lupus which we learn to handle as Sara Gorman does indicate in her book - “by planning Rest Times EVERY Day” or if you do have Narcolepsy in addition to your Lupus which hits quickly and randomly.

mayoclinic.org/diseases-con...

[weathervane]

Is this a new symptom to you , or is it something that has got alot worse . If this is the case maybe you should contact your rheumy nurse. Best wishes 🌸

[Lottie89]

Ask to be referred to your local sleep clinic. I was diagnosed with sleep apnoea and now use a CPAP machine at night. I still suffer from extreme fatigue but I don’t fall asleep everywhere/anywhere.

[Queenie1943]

Yes I am the same. As soon as i sit down I fall asleep and wake with a jolt seconds later . It keeps happening time and time again.

I try and do my household chores but after a short time I feel so fatigued. I can understand just how you feel and sympathise with you.

Regards Elizabeth

[Cas70]

Yes, I do too. All part of our illness. Like Spanielmadlady I call them sleep days and find if I can, I go to bed or lie on sofa for an hour (set my phone alarm) And I can carry on but if necessary later I do the same thing. These days have lessened since they put me on just 2mg per day if Prednisone. I did have tines when the exhaustion made me tearful, quite suddenly. Get somewhere quickly and drink lots of liquid and rest if you can’t lie down. You have to learn to manage it, just like our many many other symptoms, I’m afraid. Best of luck