{"id":1648,"date":"2026-03-26T21:40:32","date_gmt":"2026-03-26T18:10:32","guid":{"rendered":"https:\/\/thefibrolupusbutterf2647.live-website.com\/?p=1648"},"modified":"2026-03-26T21:40:36","modified_gmt":"2026-03-26T18:10:36","slug":"frustration-with-fibromyalgia-and-lupus","status":"publish","type":"post","link":"https:\/\/thefibro-lupusbutterfly.com\/?p=1648","title":{"rendered":"Frustration with Fibromyalgia and Lupus"},"content":{"rendered":"\n

I am beyond frustrated about chronic pain.\u00a0<\/h1>\n

\u00a0<\/p>\n

I never know what a day will bring forth… here is an example of my week so far…<\/p>\n

This past Monday, I had a horrible pain day.\u00a0 I could barely move, my brain wasn’t working well and I had what I call a “Fibro Migraine”\u00a0 (that all-consuming pain where my joint pain tries to stretch and reach the pain in my lower neck and temples, causing a “connect-the-dot” sort of pain that radiates EVERYWHERE). All I could do was rest.<\/p>\n

On Tuesday, I had to go into the city to a doctor’s appointment with my husband, and by the end of the day I was completely worn out. By the afternoon, the “connect-the-dot” game was upon me again.<\/p>\n

On Wednesday, I woke feeling relatively good, and decided to use my creative genius to start a sewing project that I have put on the back burner for months. I was in a groove and had a very good day with creativity, which is a mental release for me! I was so happy and almost felt normal.\u00a0<\/em><\/p>\n

Well, today is Thursday.\u00a0 I awoke feeling pretty decent considering I sewed the day before… then, about 9am and feeling okay, I walked with my daughter to the neighbors (2ish acres away) to deliver some home made treats my youngest daughter had made. We stood talking for about 20 minutes in the sun<\/em> and walked back. On the way back, my joints started screaming that “all-too-familiar, burning scream-cry.” I struggled up the hill into our yard and was winded, hurting and could barely move. Once inside, my body gave way. I lost mental ability and any creative drive to complete the sewing task, as was my plan prior to the walk. I HURT<\/em>.<\/p>\n

At 11am I collapsed on my bed and fell fast asleep. 1.5 hours later I emerged from that with a horrible, burning, almost gnawing pain in my hips and joints.\u00a0<\/p>\n

Pain upon awakening from a nap is nothing new, but always disheartening to feel.\u00a0<\/h2>\n

I am so frustrated with fibromyalgia and lupus pain! I never know anymore what I may do that is going to cause issues. I have dealt with these conditions on various levels for over 10 years and I thought I had a pretty good understanding of what I did and the repercussions that would follow. But for the past 6 months or so, I would have to say that all bets are off.<\/p>\n

Nothing I do (or don’t do) makes sense anymore where my pain is concerned.\u00a0<\/h2>\n

I have to take everything moment-by-moment in my day.\u00a0 I do my best to rejoice in the little victories! I can definitely not allow my mind to fall into the trap of frustration to the point of sadness.<\/p>\n

I need to “gird up my loins” and continue on.(Notice the pun?)\"\"<\/h3>\n

Easier said than done, but I MUST.\u00a0<\/p>\n

May God Bless you and your day and may your tomorrow (and mine) be a good pain day.<\/p>\n

God Bless- The Fibro-Lupus Momma of Ten<\/p>\n","protected":false},"excerpt":{"rendered":"

I am beyond frustrated about chronic pain.\u00a0 \u00a0 I never know what a day will bring forth… here is an example of my week so far… This past Monday, I had a horrible pain day.\u00a0 I could barely move, my brain wasn’t working well and I had what I call a “Fibro Migraine”\u00a0 (that all-consuming… Continue reading Frustration with Fibromyalgia and Lupus<\/span><\/a><\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"om_disable_all_campaigns":false,"_monsterinsights_skip_tracking":false,"_uf_show_specific_survey":0,"_uf_disable_surveys":false,"ngg_post_thumbnail":0,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"I am just a mom with Fibromyalgia and Lupus learning to live life out running the wolves. 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