CAD ? : I had an incident this week... - Hughes Syndrome A...

Hughes Syndrome APS Forum

10,425 members10,630 posts

CAD ?

BeachHaven123 profile image
10 Replies

I had an incident this week . All of a sudden I just could not get warm. Freezing. Like skiing in New Hampshire with frostbite.

I found a source called your rare disease advisor. From what I could tell owned by doctors. Unfortunately, there was one case study where one of us who got into trouble with this mid Cesarean. They managed to save both mother and child but they called it CAD. A manifestation of APS. I could read the case study online.

No cure. I think she ended up having 5 transfusions

I was wondering if any of you had experienced this.

Doing much better now. Ordered some purple long John’s.

Thank you all. !

⛄❄️🎄

I

Written by
BeachHaven123 profile image
BeachHaven123
To view profiles and participate in discussions please or .
Read more about...
10 Replies
rafael profile image
rafael

Hi there. I have lupus, fibromyalgia and APS! I have experience what you are describing. Mine feels like ice cold water running in my veins - mainly my legs, arms and back. I haven’t been dtiagnosed with anything but I would suggest these symptoms could be linked to Raynards Syndrome as my fingers are really bad when this symptom comes on.

I hope this has helped xx

BeachHaven123 profile image
BeachHaven123 in reply torafael

Thank you ! I will see what else I can find. 🩸❤️

MaryF profile image
MaryFAdministrator in reply toBeachHaven123

Before diagnosis and treatment, my slow Thyroid kept my body temperature very cold and I was cold even in summer, however I only discovered the state of my thyroid health by joining the relevant Thyroid Forum, Thyroid UK, (also on here, and a great charity), and ordering my own private and detailed Thyroid tests. Unfortunately often only the TSH test is done and is not very reliable, often B12 deficiency can also play part, so good to properly test. The best Thyroid test on Medichecks is the one I used most recently. MaryF

Tucson profile image
Tucson

I don't usually feel the cold but sometimes maybe once every couple of months I get the shivers where I go from being warm, maybe even in bed so snuggly and start to shiver and shake uncontrollably. I get up and stagger around trying to find a thick warm fleece and a blanket, wrap myself up and get back under the duvet till I recover which can take anything up to half an hour. Tbh I'd never considered it was anything to do with my APS but then I have very few APS symptoms, just multiple strokes and trouble with my joints and that's it, so who knows. I'll try to remember to ask at my next appointment at st Thomas's.

Piscesdreamer profile image
Piscesdreamer

I have not heard of CAD.Did you give you any information?

BeachHaven123 profile image
BeachHaven123 in reply toPiscesdreamer

Hi !

I had never visited this site before. But I went to rare disease .com and then to rare disease advisor and tap in APS Brand new to me but from what I can tell mostly doctor’s reporting the exceptionalities of rare diseases. Invitations and news about clinical trials. if you have any questions you can call and email. I would try to explain but might get it wrong since so many of us have more than APS.

I had never heard of it before either. Tried to find Reviews but no luck. It appears to be basically a doctors health network for rare diseases. Not to replace this site or treating docs. But a more FYI so the patient can understand where the research is and provide access to health care.

All I know Just trying to stop freezing!

Good Luck !

Piscesdreamer profile image
Piscesdreamer in reply toBeachHaven123

CAD in medical terms usually means Coronary Arterial Disease.

VinVic profile image
VinVic in reply toPiscesdreamer

Maybe Caps? Not Cad

Piscesdreamer profile image
Piscesdreamer in reply toVinVic

CAPS would make more sense. For thr original poster, CAPS stands for Catastrophic Antiphospholipid Syndrome. It is a rare manifestation of APS.

user666 profile image
user666

you would know if it were CAPs you would be in the hospital very very ill. Try not to google every disease or every symptom. Instead, call your doctor and tell them your symptoms and let them figure out what might be happening.

Not what you're looking for?

You may also like...

DWP Tribunal

Some of you may recall my one and a half year long appeal with the DWP. I am very pleased to inform...
Rhian21 profile image

Prof Graham Hughes' April blog

A wet bank holiday. An ‘indoors’ day. Shopping? No. Go to watch Charlton Athletic (my wife’s...

Lovenox/Enexoparin

Hi Happy New Year! Hi Kelly in Texas! It’s been a while! Just want to let everyone know if you’re...
Debbweb01 profile image

6 months on...

Well last two weeks seen haematologist & rheumatolagist...still on xarelto for my blood but way...
AngelinaN profile image

New lung issues.

I finally snapped and pressed my doctor to run some tests. You guys know I have been posting for...

Moderation team

See all
lupus-support1 profile image
lupus-support1Administrator
HollyHeski profile image
HollyHeskiAdministrator
KellyInTexas profile image
KellyInTexasAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.