This body's not I have been... - Sickle Cell Society

Sickle Cell Society

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This body's not

Finalybeingheard profile image

I have been having cognitive issues, anyone else been having problems? If I'm.getting ready to do something, sometimes I'll stop in the middle of doing what I am to do and forget what I was about to do.. I've Lso been feeling like I'm not in my own body, like I'm in a dream...


Anybody know what this is?

14 Replies

I don't know what this is but this also happens to me a lot. I not only forget what I am about to but I also have pain so bad that it feels like I am not in my body. If you don't mind me asking do you have sickle cell trait or sickle cell? And so do you ever have pain from it? I hope you feel better

Sickle cell anemia

It's so painful!!

I am so glad that I am not the only one who feels this I just found out that a portion my lung base is collapsed, chest hurts so bad, I can feel sharp pain under my ribs it's so crazy! Some days my husband has to help me in the shower if my psw isnt scheduled for that day.

Sorry you suffering and I hope your lungs get better. Also I have had fluid on my lungs I've had ammonia twice. I have really bad chest pain as well my chest pain makes it hard for me to move and walk. I have very sharp intense chest pain and I have sickle cell trait. I am told the pain isn't from sickle cell trait but it is everyday and constant.

I get pneumonia every year lol it's crazy!

They now suspect I have lupus or Mctd on top of the sickle cell

Oh Wow they said I had Lupus too but my test was negative. I have similar symptoms of someone who has sickle cell anemia.

I am glad I am not the only one that has these symptoms!!


What I do is take high doses of fish oil. 10 grams per day. This helps the blood flow. I also make magnesium oil. You can use Epson salt or flakes. You take 1/2 cup of hot water and a half of cup of magnesium. Put it in a spray bottle and I add a few drop of lavender. I spray my body in the morning and again at night. I just let it dry. If I start to have any pain in the night I get up and spray again. It helps the RNA and the DNA. The other thing that helps me is doing intermittent fasting. This helps the cells. I do drink water but fast every day 18 to 24 hours. I also take D3 daily. And various other supplements. I was told I would not live this long. Since doing this my brain works great. I also take high doses of Turmeric pills, lyposolmol vitamin c in high doses. I am rarely getting pain crisises since doing this. No more fluid build up in my lungs. I drink water with lemon and use apple cider vinegar daily. Sugar is a killer for the blood building. I switched to Stevia with erthitol. I also use MSM and Vitamin C drops for my eyes. Because I worry about going blind because so many of my family members have had blindness due to the sickle cells .

Try it and see if this helps you.


Thanks for the info! Doctors just told me they suspect I have lupus or MCTD

You would have to go on the Ketogenic diet and it will help is you have Lupus. Do you have a lot of bruises?

Rashes on my face but my mom has MCTD which is such a complicated disease

321Peace21 profile image
321Peace21 in reply to Omie11

Hello that is good information, do you see improvements with a fish oil? And does it help with your sickle-cell symptoms at all?

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