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.

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yanina | @yanina | Mar 19 12:37pm
In reply to @sbtheplumber1 "Definitely a fatiguing discussion not many think about! Having Narcolepsy and taking medicine for it and..." + (show)
@sbtheplumber1

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

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Have you checked you TSH (T4 to T3 conversion) and vitamins? Approaching my forties and discovered I have a lot of gene mutations that makes my body unable to absorb some vits like D and folate from food. Have to take a special compounds. It makes a difference.

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Teri | @tsc | Mar 19 3:10pm
In reply to @annelia "I just want to give people a heads up on one possible answer to fatigue. I..." + (show)
@annelia

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.

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Hi @annelia, I had extreme fatigue before I was diagnosed with an autoimmune disorder, Giant Cell Arteritis. I had anemia, not caused by iron loss, but by the autoimmune disorder itself. It's called "Anemia of Chronic Inflammation" and there have been a number of discussions about "low iron levels" in the PMR/GCA group. My anemia and fatigue resolved with appropriate treatment, which was prednisone.

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annelia | @annelia | Mar 19 4:17pm
In reply to @tsc "Hi @annelia, I had extreme fatigue before I was diagnosed with an autoimmune disorder, Giant Cell..." + (show)
@tsc

Hi @annelia, I had extreme fatigue before I was diagnosed with an autoimmune disorder, Giant Cell Arteritis. I had anemia, not caused by iron loss, but by the autoimmune disorder itself. It's called "Anemia of Chronic Inflammation" and there have been a number of discussions about "low iron levels" in the PMR/GCA group. My anemia and fatigue resolved with appropriate treatment, which was prednisone.

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Hello there ... I am on prednisone and florinef (for years now) because I have Addison's, plus RA, fibromyalgia, and a few other autoimmune diseases ... this iron loss is a mystery, but the exhaustion has been for so long it is ridiculous ... then the other prompts of aging and diseases fill that question for most (doctors) but there is something else going on .. I am so tired of trying to find answers. I get depressed and just want to give up really.

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Teri | @tsc | Mar 19 5:10pm
In reply to @annelia "Hello there ... I am on prednisone and florinef (for years now) because I have Addison's,..." + (show)
@annelia

Hello there ... I am on prednisone and florinef (for years now) because I have Addison's, plus RA, fibromyalgia, and a few other autoimmune diseases ... this iron loss is a mystery, but the exhaustion has been for so long it is ridiculous ... then the other prompts of aging and diseases fill that question for most (doctors) but there is something else going on .. I am so tired of trying to find answers. I get depressed and just want to give up really.

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I remember the exhaustion. I pushed myself to walk everyday and then all I could do was collapse on the couch when I got home.
Are the iron pills helping?

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annelia | @annelia | Mar 19 6:15pm

Yes .. that feeling of "I have to get something done today ......" and the utter exhaustion afterwards .. the depression. I just keep heading into the wind though because if I don't I feel like I will just lay on my bed and cry, which in itself is exhausting ... a no win situation right ? LOL
But I did do a miracle job .. sneaking out to the back garden and cleaning up a bit ... the weather was crazy beautiful ... I think it will snow again though ? that makes me laugh a bit.
Your question about the iron pills .. I have been on them about 2 weeks , but I don't really feel better yet. This could be because my iron reserves were so low, it will take time to really build up and become affective for me. So I will hang on to that hope. I see my endocrinologist on the 27th this month .. I am hoping she will have more answers or ideas .. I switched endo's after mine became insulted that I actually asked questions and asked why he didn't tell me about the emergency injection I should have on hand if I crash with the Addison's .. I think he had the "god complex" and I didn't notice for all the years I saw him .. go figure right ? LOL

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