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discouraged and hurting

Dec 29, 2015 5:40 PM

I feel like I'm fighting a losing battle that never ends even when I'm down for the count. I hurt and filling out the pain diary feels redundant because the changes are so minor, it's like I'm writing almost the same thing every day. Our weather was beautiful today (even smelled someone cooking out at dinner) but all I feel is angry and lethargic. I can't seem to wake up. My fog is almost constant, instead of episodes of fog, I have episodes of clarity. I keep getting hit with waves of just pure heavy weariness for no reason, with no warning and completely out of the blue. I'm just so tired of all of this. I want the old me back!!!! Please

Dec 29, 2015 6:01 PM

I'm with u Phoenix. I'll make a deal with u if u see the old me you'll return it and if I see the old you I'll return it by fedx.lol but for real I'm so over this life as it is now. The pain the fog . the fog the pain. Having to explain or excuse my fatique ,dealing with uninterested doctors ect. I'm constantly trying g to see a greater good to all the suffering we have to endure and I don't know the answer for it its hard

Dec 29, 2015 6:08 PM

I just really don't like this new lifestyle of mine, in fact I hate it. I hate everything about it. From the pain to the exhaustion to the foggy brain slush to just having to wake up and live. If I see the old you, I'll definitely overnight it back to you lol. But why do I feel like I'm still in here somewhere, I feel like if I just do something the right way, then the old me will suddenly pop out and be like, I was waiting for you to wake up. I don't want this to be my forever. I can't live this way. I don't know how ANYONE lives this way. It has to go away and get better, right? Please, right????

Dec 29, 2015 8:08 PM

Yes I use to feel like that but lately I've been beaten down so badly that hoping in things is so hard for me to do. I can't remember the last time I laughed and felt joy. I've laughed to fool my family because everyone else was laughing but I have not felt actual joy in a long long time. Sorry don't mean to be a kill joy.. I just miss the old me so bad I could cry. But I also don't have enough energy to cry. I'm a shell if the person I use to be. The only thing I know if that makes me happy is my boyfriend but we haven't seen each other in a a few months. Actually had a talk with him tonight but coming back to be with him. I'm thinking bout it.. Lol sorry. Went off on a tangent..

Dec 29, 2015 10:22 PM

Phoenix, have you been tested for Sjogrens? It shares a lot of common symptoms with fibromyalgia, lupus, hypothyroidism, and many other autoimmune issues. Someone on this site mentioned it to me and when I researched it I realized my symptoms really did for. My doc ordered a lip/buccal biopsy and it came back positive.

Before the my avg daily pain was staying 7-8 and sometimes higher. Once I was put on Plaquenil for the sjogrens my daily pain avg dropped to 3-4. I was amazed at the difference. I still have bad days, and am actually in a flare now, but before it was dx I kept telling my doctors "something else is wrong because o just feel awful all the time; no energy, constant pain, constant sleeplessness, etc.". Check into it, or any other issue that might be coexisting. πŸ™‚πŸŒΌπŸ™πŸ˜·

Dec 29, 2015 11:10 PM

To all with the fog,

I started doing medical marijuana in edibles ( I make my own oil and then make a no bake cookie balls) and am trying my hand at a tincture (currently at day 5 of 30). It took about a month for me to be almost pain free and it is my clarity. I don't have the fibro fog and my flare ups are nothing compared to before.
This may not be the solution for everyone, and please check with your doctor before trying this.
My husband and I did a lot of research before I decided to go this route. It took me almost a year to make this decision, and now I would never go back.
I am currently in a really bad flare up due to weather and the pain is horrible but the fog is still gone. This really makes a difference in how I cope with my pain.
My thoughts, and virtual hugs go out to everyone dealing with the fog and muddled minds, as I remember those days and hope to never go back.

Dec 29, 2015 11:23 PM

BarelySqueakingBy, I'm glad you were able to find what works best for you. It's not legal in any form in the SE, except for children with seizures and only in oil form (I think... Fog block!). Days like the past week where I'm fighting extra fatigue due to seasonal sicknesses (cold & laryngitis), the fog seems to descend heavily. (((Hugs))) πŸ™‚πŸŒΌπŸ™

Dec 30, 2015 1:10 AM

Phoenix, I understand it seems redundant but it's a great way to track any trends, highs, and lows over a long period of time, especially for medical and legal reasons. I always add a progress note at the end of each pain entry. There I can go into a more detailed summary of how my day has gone, how I'm feeling mentally, and if any of it is a potential trigger. Its interesting to go back thru and reread them after about a week or longer.

Dec 30, 2015 12:38 PM

I do the same with my entries, EaracheMyEye. It's so helpful. πŸ€’πŸ™πŸŒΌ

Dec 30, 2015 12:54 PM

Flappyslady81,

Sorry to hear that marijuana is not available to you legally. I live in the NW and it has been legal here both for medical and recreational use for awhile.
Hopefully the people who make the decisions in your state will realize what good it can bring for those who really need it for chronic pain, help dealing with cancer and other medicinal purposes.
Good luck with your search for relief and answers.

Dec 30, 2015 6:56 PM

Flappys, I don't think I've been tested for sjogrens. I'd never heard of it before this group. But my mom said it involves a level of dryness that I just don't have. My mouth stays dry, but think that's just medication. When I cry, I can tear up just fine and mom says (she's a retired disabled nurse) that it's hard for ppl with Sjogrens to shed tears. But I will ask my doctor about it anyway, if it's a matter of just a simple test to rule it out, why not, right? Thank you. Maybe there's a bit of hope 😊

Dec 31, 2015 9:08 AM

Phoenixrising, I've likely had the Sjogrens for several years due to the many symptoms I've had for so long. I can still cry with tears. Mine was dx from a oral biopsy. This community is where I've heard about a lot of things. A new book I've ordered states (in the description) that many Sjogrens patients are dx with fibromyalgia when they don't have it. I'm wondering if that's what's happened with me. I do have tender points, but that can also be a sjogrens symptom. Just keep tracking your symptoms, and maybe soon they will figure it all out. πŸ˜·πŸ™πŸŒΌ

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