I’m exhausted. ALL.THE.TIME. I’m 37, I have 3 small kids & work. What has worked for you?
The exhaustion is so overwhelming, I am at a breaking point & it does not help that my husband doesn’t understand. He thinks I have poor time management.
Thyroid tests are fine. I was only low in Vitamin D which I do take supplements for.
Please help!
Haribo!!!
Seriously though. Vitamin/nutrient deficiency, for me especially Iron, wpuld wipe me out and tablets can take a while to restore the balance.
Difficult when you're busy (especially with kids) but try to eat a balanced diet and foods high in what you're missing.
3 small children & work is enough to be exhausted without adding APS & iron defiency!
I see from your earlier post that you dont have an APS/Hughes specialist? This is very important, you also dont say what medication you are on for your APS, a specialist will look at the whole picture - please put finding one on your priority list.
In the meantime, try and give yourself small rests when you can...
Hi, out of interest which Thyroid tests did you do? If only the TSH on the NHS, then I am afraid they may not be reliable enough. My slow thyroid went undetected for years doing only that dreadful test. I now like others test privately and have my thyroid treated. Low vitamin D will make you feel awful, as will low Iron and B12, and if you are low in Iron, it stops your Thyroid working efficiently. Some on here take Plaquenil for fatigue, the brand (Zentiva).
I can't tolerate Plaquenil due to my mix of disease, but having got my Iron, B12, and D to consistently good levels, plus my Thyroid treated, I am much better fatigue wise.
MaryF
Did you read the reply box above the one you "liked" concerning your last post?
I have many questions for you. Until these are answered I can't get an overview-
The admin are wonderful with understanding your vitamins and thyroid- complete- here docs don't do the detailed panel I've learned. It can make a very big difference.
My eye sight is failing because I'm clotting into my nerves. So if you could please check my response to your previous post, it would help me help you.
I've learned quite a lot in my 10 month journey. Most all of my symptoms have been hit, and I've traveled to London and am fortunate enough to be under the consulting care of Professor Hughes.
I feel strongly about the humanitarian priveledge to pay the lessons learned forward as best I can , as others have helped me, and continue to do so.
You find yourself in a unique situation in that you are in Texas, and so am I.
I struggled with being violently ill with children to raise and a loving husband, but one who was out of state on business- leaving me to raise children and also work intermittently. We understand. I had no diagnosis until 10 months ago. Just multiple surgeries... with no idea why organs were so sick.
I will try to help. I need you to please help me ( and my eyes) by going back if you can and reading both replays from me to your last post.
Happy to help -
Kelly
Hi Kelly:
Yes I did read the post. I guess I'll tell you all my story.
I was diagnosed with fibromyalgia about 15 years ago. At the time, I received an IV treatment of vitamins because I was in law school and tired a lot of the time.
About 9 years ago, while trying to have a baby. I was diagnosed with APS after having 3 miscarriages. I also have always had a positive ANA, but never diagnosed with any other autoimmune disease. My dr at the time said he would just keep an eye on it. I took heparin with all three of my children. After my last was born in 2014, my dr said it looked like my APS was not active, he told me just to take a baby aspirin daily. Things had been mostly fine until about May of this year.
We moved to the DFW area in early 2015. It was not until August 2017, that I got in with a new rheumatologist. After she ran tests, they showed my APS as being active and that I was low in Vitamin D. I have not seen the actual results to know what the actual number results are. She said my thyroid was fine--though I am not certain what tests she used.
I am incredibly tired, have some joint pain, raynauds syndrome, migraines, brain fog, really bad circulation, etc. I have started taking Vitamin D supplements, Tumeric, Aspirin, B12, Folic Acid, Omega 3, and a probiotic. I am making an appointment with a hematologist. I also started a gluten free diet. The diet has help a TON with joint pain and migraines but the rest ESPECIALLY the exhaustion is worse than ever.
Migraine and " brain fog" are very telling if cerebral involvement. If your new heme suggests not going over 2.5, be very concerned. If he suggests xeralto, that may be ok, but only with a full understanding of RAPS trial. Please bring it up. If he has never heard of it, RUN. Even the MAYO has a video out about this study. You can google it.
If he suggests any other thing besides this, I would certainly be leery.
How do you feel about these suggestions after studying the important bullet points brought to your attention?
* RAPS trial
* diagnostic Critera for APS - both the origional and Sidney revisions.
Only you can be your own best Advocate. ( Latin base for many languages for attorney, after, all!)
" Attorney, heal thyself"
You are now armed and no longer dangerous!
I'm almost certain you need to be on Coumadin.
This is the sero neg sero pos conversation.
You are welcome to pm me as I said in first post if you would rather but APsnot Fab and other admin input on testings are invaluable.
What I have to offer you is Texas hematologist and Rheumatologist.
Admin may have to remove it if I post it public and not private just because of Health unlocked rules THEY have to follow. Law school gal- you understand.
UTSA health science is very poor. I assume UT Dallas is same. Steer clear. They don't go above 3 INR.
If you have livedo R it's associated with cerebral APS and is linked with increased risk of stroke. ( thus warrants investigation of higher INR and need for Warfarin -vs- xeralto. )
I recommend Holahan in San Antonio, he's not the best, but he's not the worst.
For Rheum I recommend Jose a Roldan in SA . Unless you have docs that you believe are better but it sure does not sound that way to me from what you are describing.
A high enough INR should stop most symptoms- but may not address all fatigue. But better sleep without migraines will help, and thinning blood should mitigate migraines.
Look to admin to help with previous suggestions for fatigue. ( plaquinil, other levels)
We miscarried 5 and had 2. I'm now 48. You must thin blood not to develop the future problems that can occur.
TxMama79,
Hi,
I agree with what Kelly says. You are indeed lucky to have found this well-informed member who knows a lot about our illness. Perhaps she can give you the name of a Specialist!
The most important thing (1) is to have a Specialist of autoimmun illnesses who knows this illness as he or she has had several patients before you and understands what you talk of and knows how to give you the best treatment.
Then (2) comes the anticoagulation as we have too thick blood and I am sure you need Warfarin. That can make a great difference.
I suggest you also read "Sticky Blood Explained" by Kay Thackray. She has our illness and speaks about the different symptoms. This book is also good for relatives as she explaines how it is to live with this illness.
I wish you Good Luck
Kerstin in Stockholm
Yes, would be very good for her husband.
I cannot tell you how much I appreciate all the input. I’m researching your suggestions on the RAPS trial. I’ve felt so alone in this lately. Thank you so much!
So frustrated by hospital appointment
Feel so dippy at times!!
So very sorry haven't updated
FEELING SO COLD, FROM INSIDE,
not so lucky
