Ok, the inflammation has eased slightly, now for the last three days I haven’t been able to keep my eyes open! I don’t have the energy to do anything, I even fell asleep sitting up at the hospital with my mom and I had only been there 20 minutes!! Is this what you guys go through?
i get the fatigue too, but not usually for three days. Are you on any Sjogren's meds? Sometimes it feels like I can't walk to the other room, bad flu like feeling sometimes. So sorry it's lasted three days now. Hope your mom is better.
Thank you! No meds yet. My first Rheumy appt is October 7. Is there something for the fatigue that you know of? It is like having the flu! No amount of caffeine helps and I just feel tired and sleepy like I took a sleeping pill.
Hey…if it helps you any, I get that kind of fatigue. I am always tired around the edges but when I am truy fatigued it does go on for days (or longer). I had days where I was afraid to drive home from work and once I got home, I made it as far as the couch where I would pass out for a few hours. I am on Plaquenil for about 4 months now and the fatigue like that has eased up. I still have boughts of it but they don't last as long as they used to. Thankfully so….Make sure you tell the new Rheumy though. Its an important symptom that can be dealt with.
I get the exhausted feeling that can last for days or weeks at a time. The only thing to do is rest and hope and pray for it to lessen. Any trigger can bring it back. Gotta figure out my triggers. Hope you get relief. Be kind to yourself and try to learn patience. I know I cannot do all the things I used to or want to. Decide what is most important and focus on the positives and the good days you do have. Hope you feel better soon.
Hi Allwithlove,
Yes, it certainly is. I've been circling the drain again, can barely hold my head up, feel like I've been beaten with hammers. My internist is saying systemic autoimmune, and since I have two, I guess that's a good enough answer, but I think I want my thyroid checked again.
It's always something!
Take good care!
Wishing you well,
SK
You guys are all awesome! I appreciate your thoughts you shared so much! There is so much comfort in your support you give just by sharing your experiences! God bless each of you! Thanks so very much!
I’ve had the fatigue, sinus infections, headaches and back pain for several weeks now. I’ve been diagnosed with Sjogrens, fibromyalgia, UCD, and Reynaulds. I never know which is flaring. All I know is that I’m really tired of hurting, feeling exhausted and sleepy all the time.
Dear Allwithlove, Fatigue is such a big part of my life. I have 2 autoimmune disease SS and PsA and have been diagnosed for 2 years. The past two weeks I have a huge sciatica flare with no relief. I am doing massage and water therapy and am hoping for relief soon. I also have neuropathy. I can't tell you how often I have fallen asleep at my desk I sit in the front of office and face directly out to a wall of windows and the public. The only thing that saves me we are on the second floor and have less foot traffic. All you can really do is sleep whenever you can and accept this bump in the road. It surely will pass, promise! Hang in there girl! Sending love and prayers Michelle
I know what you mean Angelwing. Sometimes it is hard to endure it all! I hope you get some relief soon Nana times 10 and thanks for your love and prayers! I’m sending them right back!
Yes I have been very fatigue for about 3 months down n may I had one week feeling great, no fatigue can’t remember what I did!! I was having back off n on now I had back pain for bout 2 month. Is there anyone who’s taken med. I’m not I’ve tried plaquiel when I was first diagnose 4years ago n kept being sick found out that I’m allergic to sulfur and it is a sulfur drug. Has anyone tried any med. that helps
Fatigue is an ongoing issue for me and I experience it at different levels at different times. Sometimes it is just like a cloud hanging over my head but I can function. Sometimes it increases and I have to rest after a few hours of activity. Then comes the big one- when I am in a flare I can only describe it as crushing and I can’t walk across a room without needing to rest.
Give yourself permission to rest when fatigue hits you. Don’t push yourself. Read the Spoon theory!
Cassi440…thank you for suggesting that I read the spoon theory! That was awesome! Everyone in our site should read this!! Thanks for the reminder. I still struggle with accepting my limitations resulting from SS. I need to remember to be kinder to and more forgiving of myself when I can’t do what everyone else does. I must consistently remember and accept my “new normal” since getting Sjögren’s. Thanks again!
I too struggle sooo much with the fatigue and wanna sleep for days sometimes. I try not to just stay in bed though because it makes my depression worse… But sometimes i HAVE TO just lay down…
I suggest u do the same " laying down and resting " when life gets us with these tired flares… All we can di is wait fir another good day
Thanks Niki. I appreciate your post!
Cassie and Allwithlove,
I loved the explanation of how our days go in The Spoon Theory. I have shared it with everyone who supports me and even at church. Thanks you ladies, it's nice to be part of your team!!! Michelle
I had never heard that before….I just shared it on my FB page. Its such a great way of hitting home what this thing does to you. So true…right down to thinking out what I need to eat at what time to balance my meds (including 2 that interact if I take them within 2 hours of each other).
I had so much trouble staying awake while driving....I had about three fenderbenders when finally I fell asleep on the highway and ran into a gaurdrail and totaled my car. My husband took my car keys and I haven't driven since. Right now it's 6:30 and my bed time. I just try to work my world around my fatigue
Qadosh that is so scary. I don’t think of getting behind the wheel if I am too tired. The only place I want to be is home. It’s terrible that we lose control over our lives. I am so glad that you are ok after that accident.