Author Topic: Fatigue  (Read 186 times)

A Mom on Spin

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Fatigue
« on: January 11, 2018, 01:04:55 PM »
I recently watched a new video on chronic fatigue syndrome (more properly known as myalgic  encephalomyelitis) and was stunned between the similarities in these patients and the very fatigue feel.   The film is called ?UnRest? and was made by a patient for PBS.  Of course CFS/ME - like Sjogren?s - has a wide spectrum of the extent to which it disables an individual, and I probably was seeing the worst off the worse, but I could relate to these patients on so many levels.

They show patients who appear to be fine one second and literally drop to the floor the next.  Okay, I don?t do THAT but my fatigue overtakes my body very quickly and I have to lie down within minutes.  Sitting down doesn?t do it.  I must lie down.  In fact, in the book i recently authored (pm me if you want to learn more, or simply look at the books the moderators have listed in the book club list) in my section on fatigue I wrote:

?Fatigue, simply put is the crushing feeling which washes over you
and makes you feel as if you simply cannot spend
two more minutes of your life in an upright position.?

How eerily similar these patients looked to me, only their fatigue was amplified many times over.

Do you think that this is just the nature of ?true? fatigue or could the two diseases have more than that in common?

Liz



« Last Edit: January 11, 2018, 04:27:54 PM by A Mom on Spin »
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Primary SJS. RA & lupus. Positive ANA, SSA, anti-phospholipid Antibodies. Large and small fiber peripheral neuropathy

Sharon

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Re: Fatigue
« Reply #1 on: January 11, 2018, 04:45:08 PM »
There are studies that conclude that CFS is linked to autoimmune disease.
CFS develops into clear AI in many patients (it did for me!)
and Rituximab treatment has been found to improve CFS even in patients with this sole diagnosis.
CFS was one of my first symptoms and diagnosises.
Getting on Orencia has helped me alot with the fatigue.
 
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

susanep

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Re: Fatigue
« Reply #2 on: January 13, 2018, 09:54:40 PM »
Thank you so much for posting this. I just finished watching the whole thing on PBS. It was a good documentary, but sad too.

susanep
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Prilosec,, Xanax, Restasis, Systane, Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventil.

A Mom on Spin

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Re: Fatigue
« Reply #3 on: January 14, 2018, 03:41:25 AM »
Susan, I know, it was very sad and the feeling stays with you and affected me deeply.  That?s why I posted about it.

Sharon, I am surprised to hear that Rituxan has been found to help with fatigue.  Just finished my second round of treatments. Maybe that?s something I have to look forward too.  More importantly, how can doctors distinguish between CFS/ME and the fatigue that comes with Sjogren?s?  Are you still diagnosed with CFS?

For those interested in watching the film, here?s the link:  http://www.pbs.org/independentlens/films/unrest/

www.mysjogrenslife.blogspot.com
https://www.amazon.com/author/lizwilkey
Primary SJS. RA & lupus. Positive ANA, SSA, anti-phospholipid Antibodies. Large and small fiber peripheral neuropathy

Carolina

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Re: Fatigue
« Reply #4 on: January 14, 2018, 08:20:50 PM »
The result of an attack by your auto-antibodies on your own body is like the attack of your antibodies on infectious agents from outside your body.  In either case, the WAR is going on in your body.

These are the results either way:

Pain
Fatigue
Depression.

This is how you feel when you get sick, and this is how you feel when your immune system attacks the organs/systems of your body.

You may only feel the fatigue (ONLY!), you may not have that much pain (body aches), and you may not notice the depression.  But the fatigue is liking moving and thinking through molasses.  It is so damaging to our ability to cope and be productive.  Sleep does not help it.

I hope you all find some help with the difficulty of Immune Disorders.

Regards,  Elaine
Female-75-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-IBS-Knee/Shoulder Degeneration-Intertrigo,Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-IVIG-Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-Copper-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-FishOil