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Hughes Syndrome APS Forum

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Don't know how I got there

Debbweb01 profile image
15 Replies

Hi I was reading something Mary posted about zero negitive APS and I got to this old post by Dr. Hughes that Mary put there! It said one of the symptoms of Hughes was after eating having tummy pain! My sister Nanny Lynn is having major stomach problems now and we both hate to eat because it causes us both pain! Am I hallucinating or did I read that! My sister and I have had stomach problems our whole lives! I can remember as a sickly child being in stomach pain and being in hospital for a week , being sent home without ever finding diagnosis! I'd be in hospital with weird thing that stumped the doctors! Is there a link with APS and stomach problems!!! Concerned about my sister and I've had six or sever major stomach surgeries! Life threatening emergency surgeries!!! I hope Y'all are having a wonderful summer! Wsoon we here in USA shall be. Elebrating Independence Day AKA THE 4th of July! Hope y'all are well and coping! GODSPEED

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Debbweb01 profile image
Debbweb01
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15 Replies
Wittycjt profile image
Wittycjt

Type "stomach pain" in search box above right. Things related to this will pop up. Good hopes Deb!

Debbweb01 profile image
Debbweb01 in reply to Wittycjt

Thx just got to find etch box lol

Debbweb01 profile image
Debbweb01

I found search box and typed in stomach pain and nothing happens

Wittycjt profile image
Wittycjt

I just did it again, then hit the return button. It brought me to a new page and then I thumbed down through the page at the different articles. Try again, let me know if you're still having a problem, cindy

MaryF profile image
MaryFAdministrator

Some people have Gastroparesis ncbi.nlm.nih.gov/pmc/articl... It can also be a mixture of things, including intolerance to gluten, low stomach acid, which is common with Thyroid problems etc. MaryF

GinaD profile image
GinaD

All my life, at least till 2004 when I discovered I had gluten intolerance, I would get stomach pains if I ate too fast or too much. Since going gluten-free those symptoms have vanished – though the stomach pain will return about 20 minutes after I make a mistake in my diet and inadvertently eat something with gluten in it.

Debbweb01 profile image
Debbweb01

All my life, as far back as I can remember, after eating I'd get horrible stomach cramps and pain! Ended up as a kdcin hospital ward thinking Always ape did! Idxcome home none the better and I was a medical mystery most of my life! Unfortunately I have this photographic memory and see a have instant recall of it all! I read that we withbAps, about anchour after eating, don't have enough thin blood to circulate our food and digestion takes longer! It's something like that! I hate to eat and these past 2 weeks have been hell on earth for my tummy! Due to the fact I'm on hi doses of prednisone and antibiotics, I must eat, ergo tremendous pain in stomach! I've had 6-7 stomach surgeries and blockages and I'm just having APS flare up now! I guess! I have body aches like I have the flu! I got new socket for my leg and of course it's not right! It's probably the worst of the 4 I've gotten! The prednisone depresses me and I want to go to sleep for a long time! I'm tired of this fight! I think I'm having an unusual pity party! I do have gastroparesis! Along with GERD, diverticulitis! I did go GF for 2 months last year and felt better! I'm just fed up now! I'm unstable on this new leg thing and fell into refrigerated and hurt my right hip! I want to run away! Today I go for leg adjustments b4 my specialist goes away for a few weeks. So I pray this can be settled somewhat today till he gets back! I know with my history of being complicated it won't ! Still not breathing to well! Need more prednisone! I just sit in my chair and drink water for my dry mouth, burning tongue and 2 months of unrelenting mouth sores! I'm not usually negative and fight it thru, but no will and no strength! The hard part is everyone around me says how good I look and since I'm this tower of strength, it's expected of me to stay that way! Well this tower is leaning now! I'm fed up and disgusted! Tomorrow will be better!! Pity Party today!!! Thx for letting me vent! My sister is in pain after eating too and now has GERD, Barrets Esophagus, diverticulitis, huge ulcer, IBS, and constant pain as I do! When does it stop? She's gone GF mostly, and does feel better when she's completely GF! Maybe that's the answer! Sorry for this negativity today! I'm just so tired of fighting and today will be hell of a fight for my leg cuz they can't get me right! I just must accept the fact that I have a prosthetic leg and will always have issues with it! I'm lucky I have insult get the leg so I. Red to shut up and move onward and upwards! It's just too painful today!!! GODSPEED

Debbweb01 profile image
Debbweb01 in reply to Debbweb01

Typos- Lucky I have health insurance to have a leg ! Our veterans still waiting!

Rosemary76210 profile image
Rosemary76210

Prayers are going up for you.

Debbweb01 profile image
Debbweb01 in reply to Rosemary76210

Thx Rosemary! GODSPEED! I'm just tired and disgusted and want to go and run and do, as I always do, but I can't fight this fight alone! I thank y'all for letting me vent! Last year in October I had a sty in my eye which lead to 2 surgeries! Those bumps too are coming back now! I must get to eye doc fast cuz it's in same eye I'm loosing my vision in! Can't take any chances! My knee stump is loaded with arthritis and soon will not hold me up! I'm supposed to get the orthovisc shots but been told to hold off till my new leg socket gets straightened out! I woke up today and I e had this big ganglia not cyst on my other knee! They said leave it alone it shud not give me troubl! Yea sure it's about twice the size as it was yesterday and in bad pain! Just tuk a pain med which I hate pill to feel better! It's just a bandaid to get me to a few doctors appointments today! My husband with Alzheimer's and bladder cancer, heart attack thank God is coming around! He gunned 85 on Saturday and is trying to help. S with my Mentally Retarded Stepson with Rare William Syndrome! At this time of my life, I'm going thru my last days of my pregnancy with my Beloved so. Jesse Brian Charles, who passed away 10 years ago at the ripe age of 24! He'd be 35 on July 10th and it's difficult time of year for me! I miss him and think it accentuates all my silly complaints! My poor sister is with APS now too! I'm concerned because she had to be taken off aspirin due to her stomach issues! She too lost her son some 20 years ago! We r in a club we don't want to be in! I'm rambling again! So sorry, I just want to go and hide and send all these Egotistical doctors to Hell! I'm calling my doctor to get this shots today and get in fast b4 I can't walk! As I write here I'm feeling the strength return, but know it's that the pain med kicked in and I feel better! Again if it wasn't for this forum, I think I'd have lost watever brain I have left! Has anyone ever put there car keys in the refrigerator, lost there leg twice, and lost breathing machine I used 3 years ago! I must keep fighting for myself or nothing will get done! My best heartfelt prayers and gratitude to all of us on here who have a voice and without you Amazingly Selfless Human being where wud we b? Thx to Mary and Dave, Holly Heski and our Precious Kerstin who volunteer they're time to get the word out! I want to shout it on the rooftops that we matter! Y'all are unrelentless in the compassion you show to us all!!! If I cud I'd heal you all!!! I know I'm strong, but don't have delusions of Grandeur!!! Lol... Maybe sometimes I do!!! Lol... GODSPEED

Rosemary76210 profile image
Rosemary76210 in reply to Debbweb01

Deb. How are you doing? How did your appointments go? I am praying that things start looking up for you soon.

Debbweb01 profile image
Debbweb01 in reply to Rosemary76210

Hi Rosemary! My appointments ok! My leg needs adjusting, but I think it will always be a painful thing to walk, but I try not to let it get to me! I pretent the pains not there and go about my daily routine! Thx for asking!

Debbweb01 profile image
Debbweb01

Sorry I left out Lynn APS NOT SO FAB!!! Yes u are my hero Lynn!!! You're More than fabulous!

Hughes-Comrade profile image
Hughes-Comrade

I get extremely painful cramps. The kind that will drop you to the floor and wish you were dead, seriously. My GI doctor prescribed Hycosomine and it goes under the tongue and works fast for me. The cramps have no warnings other than about a 10 second warning and comes on like waves and usually goes away pretty fast.

Debbweb01 profile image
Debbweb01

Wow sounds awful! I'm ok Rosemary just depressed!

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