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Today is really hard

Posted , 9 users are following.

bettybetter
bettybetter

I'm just so exhausted today. I feel like I can't bear it anymore. I had 10 hours sleep last night and woke feeling as though I've had none. I just feel so broken. I've gone off sick from work in the hope that removing stressors will help but in the week I've been off, I think I've had more days of complete exhaustion. I expected to feel better, not worse! I've also had a couple of really good days, like yesterday, which I think makes days like today even harder.

I not really sure why I'm on here posting. I was looking for some advice, something I can do that would help. But I think I just need to off load. It's just so difficult.

I've mediated. I'm going to try do yoga later. I just do these things because they're supposed to help but nothing actually does. I know nothing will actually help in this moment of helping this way. I just want the day to be done. I know tomorrow will likely be better. It usually is. I usually only get one awful day like this and then I pick up for a few, then get knocked again. I know I probably did too much yesterday. I had a spa day. Something I thought could help. I swam 6 (short) lengths. That was probably all too much. I used to swim 100 (long) lengths before work!

I think I'm just having a pity party today.

1 like, 20 replies

20 Replies

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  • stephanie78397
    stephanie78397 bettybetter

    Posted

    I also feel your pain. I used to go to the gym 5 days a week. I was diagnosed with cfs. I've had test after test done. My last Drs appointment I asked my dr if he had run an anti nuclear antibody test. He said he hadn't. So the next day he called and said I tested negative for the ana test but tested positive for the ssa ro antibody.

    This is all new to me, so now I am on a new journey. I've been dealing with the extreme fatigue for over 10 years now and I always wished they would find out what was wrong with me. Now I wish it was only cfs! Lol. I can't get into see a rheumatologist for over a month now. I had no clue that I could have an autoimmune disease. Now that I have been reading up on it, I think I might have sjorens.

    The Drs are pretty clueless when it comes to cfs, so I took it upon myself to use Google to find anything and everything to be tested for that had the same symptoms as cfs. I think my dr is as shocked as I am.

    I have been so tired for so long that I have ignored all my other symptoms. If your dr hasn't ran an ana test I would recommend anyone on here to request one.

    I hope you get to feeling better. I also have been doing less and less in hopes that it would make me feel better, but nothing seems to help, mine only has been getting worse and I'm on 250 mg of nuvigil. Was on adderall before.

    Don't give up hope! Have a great day.

    • KPD
      KPD stephanie78397

      Posted

      Hi Stephanie,

      After struggling with CFS for 25 years, I also started feeling worse, so had my doctor test for other autoimmune diseases such as lupus, rheumatoid arthritis, and sjorens. I tested negative to all of them. 

      If you do have sjorens, at least they can treat you for it. My niece has it, and they have effectively treated her with an anti-malaria drug. They also treat for the dry eyes and mouth. 

      I do understand how you feel about now wishing it was only CFS, but at least you are finally on the journey to find out what is causing your extreme fatigue, and hopefully they can treat it! Good luck to you. Please keep us posted!

       

    • stephanie78397
      stephanie78397 KPD

      Posted

      Is your niece really tired? How do they treat that? It's almost unbearable. I want to just give up some days. I still have to work full time

    • KPD
      KPD stephanie78397

      Posted

      She is better now that they started treatment. She takes something called Plaquenil which is an anti-malaria drug. I'm not sure how it works. She also takes something to help with sleep. She still has her good and bad days but overall is much better and can function. She is an attorney, so she has a high pressured job, but I believe her hours are somewhat flexible. The last time I spoke to her, she said she tries to see clients only in the afternoons because the mornings are rough. 

      I totally understand how you feel about just wanting to give up some days! I feel the same way with CFS, and since I've hit my 50s, my symptoms have gotten worse probably due to the changing hormone levels. Anyway, i do hope you get a diagnosis soon and start to feel better or at least find a way to manage your symptoms. Good luck! KPD

    • stephanie78397
      stephanie78397 KPD

      Posted

      Thank you so much. This makes me feel better. Hope you have a good day
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