Hello! I’m Meredith, and I’m new to this site as well as to the dx of Fibro, though it’s something I have suspected for a long time. I’m not new to pain, fatigue or brain fog. Giving those symptoms a name has made this whole thing more real and, I guess more sad and overwhelming also. I used to be so active, running a marathon and tons of half marathons and other races. My last race was about 2 years ago. I used to work full time, but had to quit my job a few months ago because of Fibro symptoms. I have an amazingly supportive husband, but I can tell he is getting tired from working and doing most of the housework. So I’m sad and overwhelmed, and pretty hopeless. Will I be in this pain forever? Will I EVER have energy again? I should also mention that I am on lyrica, cymbalta, Wellbutrin, trazadone, and tizanidine and tramodol prn. I am seeing a nutritionist and have eliminated sugar, wheat, etc completely from my diet. I am working with a sleep doc. I’ve seen a chiro and a massage therapist. I do my best to get some daily activity, though sometimes that feels impossible. So I spend a lot of time alone in bed. Nothing good comes from self pity, so I’m frustrated because I hear it in my words. But, really… I just don’t know where to go from here. And Thank you so much if you actually read this novel of a post! Peace to you all.
For me, accepting that my capacity had changed was really hard. Once I did that I started looking for ways to live with my new capacity - which can often seem like a moving target. Getting depressed sucks time, but it’s part of the process, I guess. I find the B supplement, inositol, helps with my depression - that and Bill Murray movies.
Avoiding stress is huge so live in the moment and try not to beat yourself up too much. My main advice would be to get off all the drugs, especially Lyrica. You’re putting all that crap into your body and you’re still having issues? It’s not helping… at least, not you. You’re doing all the right things with your diet. I’m sorry you aren’t racing anymore
. Make sure to look for ways to appreciate your husband. Fibro is super horrid alone.
In my opinion, people either keep fighting, going to never ending docs, trying and trying to find help and maybe if they are lucky and have good health insurance, they find some tiny bit of help. But eventually, in my case, I adjust… I understand this is my life and try to make the best of it. Coming to terms with Fibro, PsA and chronic back pain really decreases the stress I think. 25 years ago, I went to tons of doctors, got diagnosed, tried the meds with little effect, but kept going, fighting, working 80 plus hrs a week, going to college, trying to pursue my dreams, pack my resume. But I kept having issues, so tired, hurting, failing in perfection, and people not believing me, saying I was lazy, not studying enough, and not good enough to be in Nursing School. But when I dropped a patient in my third year of Nursing school, I had to reassess. I started working, trying new meds, and it took years to find one which at least treats my PsA skin lesion, Remicade. But none of the Fibro meds would work, totally horrid side effects, bleeding and mental funkiness. I worked weekends for 4 years, it was torture everyday and I was in bed recovering, so painful and exhausting. Then three years ago, my back pain got really bad, didn’t go away, and I had to stop working. I tried a round of new docs, but after 4 steroid injections surgeries, new meds, PT, Rehab therapy, they said they could not help me. Now my docs just shake their heads at me and say they don’t know how they can help me. It took over a year of ongoing back pain before they would give me any Vicodin on a monthly script, two 5mg Vicodins every 24 hrs. Now I get three 5mg Vicodins every 24 hrs… they just allowed me to have three pills a day 2 months ago.
So now, I am resigned. For me, at this point, this is my life. I don’t think I will get better. I have to adjust, take it day by day, listen to my body, try to plan what I will do, and how it will use up my energy reserves and how I will pay for it the next day. Sometimes, I just have to do things, no matter the pain and fatigue, as I live alone in a 200 year old fixer upper and I do all my own work, electrical, water and waste plumbing, insulating, heating, installation, black iron pipes for propane. It does make me sad that it takes forever to get things done and I can’t get what I need done by myself.
Hey, Meredith! Welcome to the support community. There are lots of people here who understand how you’re feeling. Tired, sad, overwhelmed and hopeless are so descriptive, unfortunately.
No need to apologize for your long post, and for getting some of what you’re feeling off your chest. That’s one of the things we’re here for: this is a safe zone where you can share what you’re going through. And we get it.
So join in our conversations! Find a thread that sounds interesting and add your comments. (The other respondents on the thread will be notified of your comment) or If you have specific questions, start your own thread.
All the best to you!
Seenie from Moderator Support
Hi Meredith! I haven’t been real active on here, but I read a lot of the posts. It helps me when I’m feeling overwhelmed by the Fibro-ness of my days.
I struggle all the time with acceptance as I feel it is giving up, on some level. I know it isn’t, though. But I do vacillate between an attitude of “Really? This is my life now??” and “Man, I was quite the hero today, considering how I feel!” I’m not sure I’ll ever be good at fully accepting this, but I have learned new things, like how to change my plans at the drop of a hat! I’m a master at that! 
I can’t promise you will have energy again, but I will tell you that often when I do, I tend to over-do and then I lose it again. Sometimes it is worth it, though.
I have to weigh the importance of everything I do every day. And I still get surprised by how little I’m able to do. Or how easily I can get slammed back into the bed for days. But I do feel like a hero for getting stuff done, so there’s that!
One answer to “where do I go from here?” is that you get to become an expert in managing your need for rest/recovery vs activity. Weeeee! I’ve learned that when “normal” people nap it is a luxury but for me it is a necessity sometimes. Resting, reducing activity is mandatory, not a vacation. Likewise with saying “no” to things.
I’ve learned to be more gentle with myself by imagining my daughter is the one in bed, recovering—and what message I would give her (instead of the guilt/shame I might say to myself).
I’m like you…had to quit working, husband very supportive and does so much around the house. We are about 4 years into this journey and it has become workable, finally. We both get weary, but such is life and our lot in it. I would do the same for him, so when he’s breaking a sweat scrubbing our floors, I reduce my guilt by imagining myself doing it all for him and I feel better. We’ve also learned to give housework the old “how important is it?” treatment and just let a few things go now and then.
In the past year I made a schedule of simple chores that I get done on a daily basis. Sometimes I have to skip a day or two, but it gives structure to my day and I feel good staying on top of things. Like, I’ve learned to make the bed immediately, often grumbling along the way …and some days my side has the covers folded open cuz I KNOW I’m about to crawl back in! I guess I’m just saying “little things mean a lot.”
Finally, I’ve also taken on the attitude that I hurt all the time anyway, so I might as well______________ (fill in the blank: do the laundry, cook, go to the store, etc.).
Aaaaand…there goes my energy for now hahaha! I hope you find some peace in all this. Take care.
LOL I do the same thing. I also manage to get to the pool to do my exercise by telling myself that I just have to go. I don’t have to do the whole workout if I don’t feel like it when I get there. But invariably, I get there and think “well I’m here anyway …” and I make a proper job of it.
Sometimes getting good at mind games is the only way to succeed.
Seenie