Not myself

I’m just not myself lately. I’m so tired - Tired of living with these awful conditions - FMS, Arthritis, Anxiety, etc… Tired of hurting. Tired of the Covid scare (aren’t we all?). Wondering how different my life would be if FMS didn’t exist or if there was a cure. Trying, still, to get used to the limitations dictated by my body and mind.
I know I’ll feel better when I’m able to recharge - I’ll stay in bed all day tomorrow. (There goes another day that FMS took from me.)
Okay, pity party over. I just needed to vent a little. Thank you all for making this a safe place to share.

Hi AM, I was thinking of you, and fearing that you’re not well.
I hope you’ll be able to make tomorrow into a wonderfully lazy relishing day,
as self-centred as you can, doing lots of nice things for body and soul, make it beautiful.
No, the self-pitying isn’t over, let it make you do yourself a whole load of favours and make it into the best day of the week… :slight_smile: Come back to be yourself! - and only tell us unless you feel it’s self-centred to… :smirk_cat:

When everything hurts I love just lying around and reading and writing to people, best excuse in the world. And I don’t have to think about doing anything I don’t want to… :relaxed:

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Hi AussieMom, sorry you’re not feeling like yourself. I know you work but I don’t know what you do or how many hours you work a week. From what you’ve said, you are super busy during the week and then crash on the weekends. So you really don’t get a break. I’m not surprised that you feel down. Are you able to watch good movies that make you smile and laugh? This question is really going to sound weird. Well, I guess it’s not a question. AussieMom, ask your mind and body what it needs. Then be quiet and still and listen for the answer. Maybe write down the answers and talk to your husband to see if there is a way to get your needs met. For example, maybe he can be in charge of the laundry. I don’t know. You may be very surprised what your body and mind tell you. You are not alone in this battle. Thank you for your honesty. I’m sending you seven hugs. One hug for every day of the week. :heart::hugs::hugs::hugs::hugs::hugs::hugs::hugs:

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Freedom & JayCS,
Thanks so much for the beautiful and encouraging posts. You don’t know what it means to me, to be truly understood & comforted, by friends going through the same struggles that I face daily.
JCS: I did a LOT of laying around - No writing, as my hands are pretty fried by the weekend, but I did finish an audio book - psychological thriller - The Housekeeper by Natalie Barelli
Freedom: It is a 40 hour workweek - plus, with lots of data entry. So, yes, I do crash on the weekends! I did get to see a couple of good movies while I was resting. Probably slept at least 24 hrs, and the only real work I did was the laundry (Are you a mind reader or something?!) I am glad to be able to do laundry, and my hubby does so much around here!
Thank you both, again, for the wonderful posts and suggestions :purple_heart:

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My dear Aussie Mom, I think all of us can relate to how you’re feeling. FM has robbed us of the life we ‘expected’ to live. I know ‘exactly’ how you feel. I use wish I could got through this screen and give you a HUGE HAWAIIAN HUG!! I too get really frustrated when my body doesn’t allow me to do the things I LOVE to do. It’s the ultimate of disorders to have! I wish people could live in our bodies for 24 hours and then, they would all realize that this is an unbearable, painful, exhausting, and depressing disorder to have… All I can say is that I will pray for you and all the rest of us that are challenged by the daily demons that overrule our lives. Hang in there and be grateful for what you have, that’s truly the only way I can cope! Is by counting my blessings! Much love & aloha, Liz

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Sending lots of gentle hugs your way!

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Awww, Lizrod & StrugglinginKs,
You guys are SO sweet and dear to send me encouragement. I feel better “mentally,” but this tiredness and pain are just exhausting (I’m sure you’re feelin’ me here). I’ve been off of the computer for a few days and your posts were the first to greet me. Many thanks, and hugs right back at you! :purple_heart:

@Lizrod, I also mean to say Welcome to the Community! :blush:

Aloha Aussie Mom, Liz here to see how you’’re doing. I hope much better. You will find you’ll have days that are better than others. Flares come and go as they please, you can’t control them. All you can do is accept the fact that your body hurts like hell and you need something to put you in a state where pain is not an obstacle. I’ve been thinking of you a lot lately and do hope your world is looking bright, your chin and head are high and you’re taking the steps you need to take to get use to this awful disorder, Please feel free to contact me. If there’s anything I can do for you, I will do it. I think by your working is monumental. Most of us are on medical disability. At least I am. I was working as an RN Clinical Coordinator at one of the largest dialysis centers in the US. Over 300 patients and I LOVED IT! I went the extra mile, always had a smile on my face and I felt I had the world in my hand. Then at 48, all hell broke loose. My last day of work was Feb 5. They couldn’t hold my position hence I lost my job. Went back to MN when I am originally from July 5th to take care of my parents… That’s a whole nother story; my mom had Alzheimer’s and my dad was to have a ‘simple’ out patient procedure for an enlarged prostate. I slept with him the night of his surgery and at 3 AM the lights flipped on and there was my dad. He has coded!!! He was never the same after that and on October 17th he passed. I don’t know why I elaborated on that story… I guess because I’ve been thinking of him so much! We were really close…So sorry to go off track but I think that trauma ‘enhanced’ the FM I was already experiencing although they were calling it “Chronic Pain Syndrome”. It wasn’t until 2017 I had the F/Ma blood test done via Epic Genetics were it was confirmed I had fibro! I was 89 our of 100 (Scale 0-100) So, now that I know indeed that I have fibro I am listening to my body a lot more. It’s one day at a time for me because that’s all I can handle! Again, sorry for rambling… too much coffee!!! Many hugs and blessing to you my Aussie friend. Aloha, Liz

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Hi, Liz!
Yes, I’m familiar with the ups and downs of FMS flares (unfortunately) - I’ve had it for about 20 yrs I guess. Along with degenerative discs disease (2 neck surgeries - from the front & the back, with rods and a plate in my neck), arthritis (which seems to be spreading all over), IBS & anxiety. Several years ago, I also had to have my thumb joints replaced/reconstructed. One of my main issues right now are the bunions (with bone spurs) in my feet, which make it hard to walk much, so I think I’ll bite the bullet and have them cut out once the Covid scare is over.
I’m so sorry you had to quit the job you loved. That’s like it was for me when I had to quit playing piano for my church, with the band there. I loved it so much! I think I still grieve over that.
Liz, we have a lot in common. Several years ago, both of my parents were diagnosed with Alzheimer’s and committed to a memory care center. It was a terrible time in the lives of myself, my sister and brother. Both parents are gone now, but I feel like I lost them long before they left this earth. I have faith that someday we will be together in heaven and they will be whole again. I’m sorry you had to see your dad go, so unexpectedly. Sometimes, those hard memories just won’t leave. Being with my mom when she passed was both a privilege and the most difficult thing I’ve ever done. Like you, I also believe that the trauma in our lives will worsen our pain. My doctor also calls my condition “Chronic Pain Syndrome.” I was diagnosed with fibro many years ago. I had all of the “tender” spots and was having a terrible flare at the time. I had no idea that they now have a blood test to help determine if FMS is present.
I don’t know about my world being bright right now - I think everyone’s world has been dimmed this year by the Covid scare… I’m still extremely tired and not sleeping well. Thank you so much for your encouragement and kind words. I wish all of the same for you, my new frend, and I am very glad to get to know you!

Hi Liz! When I googled the best places to live if you have Fibro, Hawaii was number one. I googled the best places to live where pain levels would be better. I live in Illinois now but want to move. My dad died of Alzheimer’s disease in 1998. He was diagnosed when he was 58 years old. I’m also from Minnesota. My mom still lives there. My head is just pounding. It has all day. I’m also having a flare. I wonder how you can tell the difference between a bad headache and a migraine? I know the symptoms of migraines. I’m also an RN. I had to stop working when I was diagnosed with Fibro. AussieMom, I’m glad you’re doing a little better. We all have been challenged in so many ways this year, not even including dealing with the ramifications of having FM. Hugs to you AussieMom! :hugs:

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Aww, thank you sweet friend! I hope you are feeling better soon - Even a bad headache, if not considered a migraine, can make it difficult to function. Fioricet is the only headache med that works for me - Since my last cervical fusion, a few yrs ago, I’ve dealt with headaches pretty often. Saying prayers that your body will calm down right away! :blue_heart:

Hi there Liz,
interesting reading about EpicGenetics’ Fm/a blood test.
Like AussieMom I’d never heard of it either, but have had a look at a lot of pages, and it’s been spoken about here too, 2019 and 2017. The company just concentrates their check on 4 proteins (cytokines & chemokines) they think are reduced in fibro. It’s not acknowledged tho, because it contradicts most research. The price has gone up from 800$ 2013 to 1200$ nowadays, some insurances pay for it…

Here is a really brilliant, all-encompassing, balanced, but also very complicated article from Dec19 with loads of high-level informative comments (background on Gillis and EpicGenetics) up to the present:

Shorter and easier:

“Countingmyspoons” :wink: says she only saw sense in doing it, because of a fibro-vaccine EpicGenetic are trying to develop (see the first link):

What EpicGenetics on say themselves about fibromites who’d be best for the test I probably wouldn’t score highly… :slight_smile: But I don’t care, I don’t need anyone to tell me what I have any more. :sunglasses: - I just dare someone to get closer to what helps me than I am myself… :person_fencing: :smirk_cat: And I’m definitely not taking a vaccine.

I wonder how it can be possible to develop and propogate an indicator test such as this as reliable - how can you verify it, if there isn’t anything safe you can base it on, like say 1000 people who definitely have fibromyalgia? I’d say you can’t, because you just can’t definitely diagnose fibromyalgia and it is also a fuzzy condition, I think probably an overlay and a collection of shared symptoms of various/combined origins. Once these have been differentiated things will get a bit easier, probably in the process.

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Wow! All very interesting, JCS - Thank you! I also did NOT know that a vaccine is starting trials, scheduled to be completed in 2022. I’m also skeptical about this. Here is an interesting quote from one of the articles you posted:

“If we find these [genetic] patterns are unique for fibromyalgia, it further and hopefully will forever legitimize in the minds of everyone that fibromyalgia is a real disease, that it’s a disease of the body’s immune system, and that consequently it’ll change how patients are diagnosed and treated, and hopefully how we may be able to cure or reverse the disease.” Gillis”

So…they are going to legitimize for us that it is a “real” disease??? We are all walking, talking, PROOF that this condition exists!

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