1. < Autoimmune Diseases

How do you deal with fatigue that accompanies autoimmune disorders?

Posted by meredithes @meredithes, Mar 4 4:44pm

I was diagnosed last year with a rare autoimmune disorder called Myelofibrosis. I’m researching what to do about the fatigue that goes along with having an autoimmune disorder. I would love any advice you can offer on how you deal with your symptoms.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

rashida | @rashida | 4 days ago
In reply to @jeff97 "I have PMR and GCA. I learned to look at my energy like it's money in..." + (show)
@jeff97

I have PMR and GCA. I learned to look at my energy like it's money in the bank. If I spend it all, I have to take time and rest to let it build back up before spending it again. Depending on how much energy I use on a particular day, it could take anywhere from a half day to several days to feel rested again. It helped me to know ahead of time that I would be tired and would need extra rest.

Over time and treatment my energy level has improved. At first I would have 1 good day and then 1 or 2 bad days where I was tired and needed to rest. Eight months into treatment I mostly have good days now.

Jump to this post

@jeff97 or … you could try the spoons theory which someone on another Mayo Connect discussion thread mentioned uses, to maintain energy level … can’t find that thread now, but here is something along the same line of thought:
https://themighty.com/topic/chronic-illness/what-is-a-spoonie-spoon-theory-chronic-illness-tme/

REPLY
1 reply
jeff97 | @jeff97 | 4 days ago
In reply to @rashida "@jeff97 or … you could try the spoons theory which someone on another Mayo Connect discussion..." + (show)
@rashida

@jeff97 or … you could try the spoons theory which someone on another Mayo Connect discussion thread mentioned uses, to maintain energy level … can’t find that thread now, but here is something along the same line of thought:
https://themighty.com/topic/chronic-illness/what-is-a-spoonie-spoon-theory-chronic-illness-tme/

Jump to this post

Thanks. That is a good way of thinking about energy levels when you have a chronic disease.

REPLY
annelia | @annelia | 4 days ago

I just want to give people a heads up on one possible answer to fatigue.
I kept saying I was "FATIGUED" to my doctors so it seemed to be a given.
Until my GP ran different blood tests and found out I was in low red blood cells situation.
Now I am on iron pills Ferrous Gluconate ... and an antibiotic for a UTI .
This is not a fight I expected and I would like to know what caused the low iron situation .
So if you are constantly fighting fatigue make sure you ask for those blood tests that might explain it.

REPLY
1kay2 | @1kay2 | 3 days ago
In reply to @jeff97 "I have PMR and GCA. I learned to look at my energy like it's money in..." + (show)
@jeff97

I have PMR and GCA. I learned to look at my energy like it's money in the bank. If I spend it all, I have to take time and rest to let it build back up before spending it again. Depending on how much energy I use on a particular day, it could take anywhere from a half day to several days to feel rested again. It helped me to know ahead of time that I would be tired and would need extra rest.

Over time and treatment my energy level has improved. At first I would have 1 good day and then 1 or 2 bad days where I was tired and needed to rest. Eight months into treatment I mostly have good days now.

Jump to this post

I can't control it at all. It all depends on the weather.

REPLY
kgitti | @kgitti | 2 days ago

Regular physical therapy to maintain or extend your strength.
Methylphenidate helps. Antidepressants help.

REPLY
sbtheplumber1 | @sbtheplumber1 | 2 days ago

Definitely a fatiguing discussion not many think about! Having Narcolepsy and taking medicine for it and all kinds of medicines for a failed back surgery plus blood pressure, my iron and testosterone levels dropped so now on pills and shots for them . I am so tired I can get out of bed some days and be ready for a nap 30 minutes later or usually between 2-5 pm I have to take a nap I’m so drowsy I can’t stay awake even up moving what little I can and when I take a nap it’s usually at least 2 hours. I take Sunosi for the narcolepsy but the neurologist won’t change anything until I get off the pain meds but I can’t stop pain meds with a failed back surgery that no one will fix . I recently had a stimulator put in that lasted 4 days after 1-1/2 years of misery and being 95% pain free I accidentally bent to far and moved the leads of a $78,000 surgery ( probably around $50,000 after insurance writes off so much ) I guess since I can’t do anything at least another 7-8 weeks if they can do my surgery for new leads next week I’ll become Fat-I-Guessed if I could only walk to the mailbox would be an exciting day

REPLY
View MoreView Less
Please sign in or register to post a reply.