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trying to deal with fatigue

Started by rose, July 31, 2014, 03:03:23 PM

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rose

I know that I am not alone with your support and God I will get through this and try to understand this syndrome. I just ha my gallbladder removed this morning and the pain medication Experil helped relieve my elbow pain.I just need support because my husband and family can't understand why I have so much fatigue. I was a very active person, I'm determined to get through this.

Trooper

Rose,

I'm right there with you.  My very first post to this site was yesterday about utter exhaustion.  I'm hoping its so bad right now for a lot of people because of the heat and will get better soon.  Hopefully, someone's suggestion will work.  Hang in there!
Dx HLA-B27 positive, Sjogren's, mixed connective/seronegative spondyloarthropathy; possible heart/lung involvement;
Tried high dose Cytoxan, methotrexate, Enbrel, Plaquenil.  Just starting Humira.

Suslew

Rose,
Look at the responses to utterly exhausted.  There's a lot of good info there.  Hang in there! 

LucyD

Hi Rose,
Hang in there. Yes, the fatigue, the dragging-dead, can't do anymore fatigue is my worst problem with this. I think others without this disease have no idea - they just can't comprehend this level of fatigue. And, often, we keep pushing through despite. A little while ago, I was sitting here thinking I can't believe I have to go to bed now at 8:30 pm.
Sending hugs.
And, of course you are going to be exhausted right after having your gallbladder out. That's a shock to your system. I had mine out years ago. I hope you feel better soon.
Lucyd
Dxs: Sjogren's - seronegative, UCTD, soft tissue joint pain, Hypothyroidism
Medications: Plaquenil 400 mg/day, Restasis, Synthroid, Cytomel, Celexa, Deplin (L-methylfolate) (for MTHFR genetic defect)
Age: 65

A66eyroad

Female, 61
Sjogrens, UCTD, and subacute cutaneous lupus. Flu-like symptoms, mouth & nasal ulcers, itchy rash, high cholesterol, headache, earache, tinnitis, dizziness. Hangover-like nausea, especially in the a.m.
Plaquenil, Atabrine, DHEA, Aleve, Evoxac, Allegra/Benedryl, esomeprazole.

warmwaters

Another thing that you may share with your family is something called Spoon Theory (google it). It's a great way of describing how all of your decisions become organized around allocating your limited energy.

BTW, another thing that happens around fatigue is guilt. People with bad fatigue often feel that maybe they are secretly slackers,  even though they can't get up a set of stairs they used to run up.  So they start talking trash to themselves about how if they just worked at it hard, or took the right pill, or went to bed earlier, they could solve all of this and be like they used to be.   So they start feeling guilty that they haven't solved the energy problem, even though it's not their fault.

I know that I've been there, even though whenever I have an improvement in my fatigue, I start doing things that I used to do. 

So take care of yourself in this.
Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers

rose

I will never give up.....I refuse to give up! I luv to laugh...right now it hurts due to gallbladder surgery, but I don't care, I'll laugh anyway. Call me crazy but funny stories, corny jokes, doesn't matter. ..just LAUGH!

warmwaters

A good sense of humor helps with this, and all the rest of life!

Quote from: rose on August 05, 2014, 07:35:38 PM
I will never give up.....I refuse to give up! I luv to laugh...right now it hurts due to gallbladder surgery, but I don't care, I'll laugh anyway. Call me crazy but funny stories, corny jokes, doesn't matter. ..just LAUGH!
Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers

A66eyroad

Yes, Warm Waters is correct, you should Google "The Spoon Theory" and share it with your family. That is the one thing that my husband read that he actually understood.

Another great article is this one by a doctor who learned she had Sjogren's:  http://www.the-rheumatologist.org/details/article/5438851/Under_the_Radar.html.

I hope this helps!
Female, 61
Sjogrens, UCTD, and subacute cutaneous lupus. Flu-like symptoms, mouth & nasal ulcers, itchy rash, high cholesterol, headache, earache, tinnitis, dizziness. Hangover-like nausea, especially in the a.m.
Plaquenil, Atabrine, DHEA, Aleve, Evoxac, Allegra/Benedryl, esomeprazole.