Sticky Blood-Hughes Syndrome Support
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Why do I feel like Death sucking on a lifesaver?

Hi this whole month of August I've been weak, tired, and my memory so bad I'm getting worried! I loose everything and forget one second from the next! I want to say the August heat is to blame, but I'm staying home resting cuz I'm too weak at times! I will start Plaquinil today, but feel so bad was afraid to start it! I did do way too much mans work in my home, but shud be recovers from that! I don't go to doctors cuz they just tell me I'm too complicated! They don't know, but I know there is something wrong and hope like last time don't have to PAY a BIG price b4 they find out! I already lost one leg cuz no one new! I'm getting down too cuz I'm not full of life no matter what!!! I'm getting a new leg, hopefully they'll approve it b4 Dec 31st, when my insurance in this Great Obama USA we live & THERS no hope for a good insurance for individuals in New York! No doctor takes Obama Care and Aetna pulls out! The only other 5 star ins for me! So I'm going to many docs a week at $50 a pop! Last week 4 docs! I'll be going to imuneologist soon ! Maybe she'll have some answers! Does anyone else get so weak at times and the memory so bad??? My INR is finally stable! My best to all and thx in advance for any advice to help me come bak to life! GODSPEED!!!

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May I suggest you try to get some donations on "Go fund"? It's a site that you set up that people can help you with monetary donations and can go right into your bank acct. I set one up trying to get monies for APS research...try it! Let me know what you think, Cindy


Thanks so much I've been thinking to do that for getting a decent leg! I'm getting new one with better movement! Shock absorbers and all! Sounds like a car! I need a good leg now as my leg has shrunk so much I'm just walking painfully on my femur bone! Nobody prepared me that I'd get worse with time instead of better!!! So this is quite a shock to me that u get worse with time! Godspeed and thx for ur advice!!!

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I definitely feel your pain. I live in AZ and we are having a particularly long, wet, murky monsoon season. Consequently, my body has gone into 'screw you' mode and everything is malfunctioning. Eating...moving...thinking...walking....standing... sleeping... everything is harder.

I'm finding that I have a lot more leg spasm and pain. I also have achy joints. Digesting food is frustrating, so I've gothen in the habit of eating something small several times throughout the day. There have even been a couple of days where that doesn't even work so I've had to do a semi-soft diet of macaroni and cheese or soup and Naked Juice.

I've also had the brain fog and balance issues. It seems like every day brings a discovery of a new bruise. I feel like a walking dot-to-dot. I've had a migraine that won't go away too.

The most frustrating part has been my leg spasms. It keeps me up at night.

At any rate, you are not alone. The summer sucks. Luckily, it will be over soon.


Wow you sound like you have RLS/Restless leg Syndrome! If u get up and walk does it help? I am in Requip/Ropinrole 1-2 mg taken at night befor u get into bed by half an hour! Tell your doctor u are suffering from this at night! The Requip works!!! Omg it can get so bad that u bang and crash ur legs! It even happens in my half leg/ stump! I kick and thrash at times then have to take another 1mg Requip/Ropinrole then I'm ok! Yes guess summer bad! Where is AZ! Oh Arizona! I'm Dori again! Lol... USA ok! Good luck and ask about RLS and let me know! GODSPEED

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