Aps and fatigue

[whitleybayfc]

Hi ive aps ,type1 diabetes ,addisons disease and vasculitis gca pmr.Ive been told by all consultants that fatigue is part of autoimmune illnesses.Anyone have same fatigue,?

[Lure2]

Hi, I wonder who gave you the diagnose of Sticky Blood (APS)? Have you tested positive to one of the three antibodies or was the diagnose given by symptoms?

We know here that the most important thing is to have a Specialist-Dr who really understands this illness and what it is about - too thick blood.

I suggest you should read the book "Sticky Blood Explained" by Kay Thackray. She has APS herself and writes about the many different symptoms which can be reduced or go away when the blood is properly thinned. So very few Doctors know about APS.

You are welcome to ask more questions here as all members try to help and the Admins know a lot, also about other autoimmun illnesses but we are not medical trained.

Only know from own experience and to listen to others.

Best wishes from Kerstin in Stockholm

[whitleybayfc in reply to Lure2]

My Consultant rheumatologist diagnosed me after blood tests over a period of time.

[Lure2 in reply to whitleybayfc]

Is he a Specialist of APS? He then diagnosed you by symptoms?

Kerstin

[whitleybayfc in reply to Lure2]

He diagnosed me from blood tests.I have type1 diabetes ,addisons disease ,vasculitis pmr /gca also.Im on warfarin for aps

[Lure2]

As a direct reply to your question; yes you are right that fatigue is a symptom of autoimmun illnesses like APS. But when we are properly anticoagulated at a stable range our symptoms usually reduce a lot or even quite vanish.

Kerstin

[AnnNY]

Are you on plaquenil? Over the course of some months it can help with the fatigue, and I understand the "stickiness" of your blood. Also, make sure your thyroid is tested.

[whitleybayfc in reply to AnnNY]

No Warfarin

[Hughes-Comrade]

One of the things that helped me with fatigue was starting on a good probiotic and clearing up my gut after massive antibiotics (and "wheat belly").

[Debbweb01]

Hi I too am allergic to many medicines and have PV also! I wonder why I'm allergic to weird things like allergy medicine! I too am in a bad state of fatigue! Mine cud be from the loss of my leg! The longer I'm without my leg the harder it get! My leg has gotten so thin and lost muscle mass that I'm walking on bone now! My femur to be exact and find it difficult due to bone pain! No more muscle or skin to fusion my prosthetic! I'm seeing that I can't do what I use to do! I wasn't like this wen I first lost my leg! I never expected this to happen and it's a RUDE AWAKENING FOR ME! I'm getting depressed about not being able to stay on my feet for my 18 hours anymore! Plus I'm not ANTICOAGULATED yet! After 9-10 months of trying I'm still unstable! I even had to remind my Hemotologist that 2.2 was NIT A GOOD RANGE FOR ME!!! He agreed and listened to my upping my dose! Lol... Thank God! I'm going to another Rheumotologists at end of month! I had an appt b4 and had to cancel! With Sjogrens I must go on Plaquinil! My Hemotologist said ok, but he's not putting me on it! I think you have other diseases that make you tired and fatigued! Having PV makes you feel full and lethargic at times! I always felt better after being Phlebotomized! A lighter feeling and along with sticky blood, we have a double whammy!!! Good luck and please keep in touch! I'm here if u need hel or advice or just need to talk!!! Godspeed

[Lure2 in reply to Debbweb01]

Hi Deb,

Hope the new Rheumatologist is a Specialist of APS as well as Sjögrens as those two are "cousins" as you know.

My very best wishes to you and your sister from Kerstin

[Debbweb01 in reply to Lure2]

Hi Lure 2 how r you! I did call first to see if he knew about APS Specialist! They said he knows about it so we shall see! I'm not myself the pat few days! Still not ANTICOAGULATED, but trying! My blood ugar goes very low and I shake and nearly pass out till I eat sugar then im ok! I'm trying to eat small meals more often and finding it works! I'm going to primary to see if I have diabetes! My sis and I both have hypoglycemia/ low blood sugar! It's been happening too much lately! I'm out of sorts and cranky! Don't seem to have patience like usual! Very sluggish! I hope u r well and enjoying ur summer? I had great fun in Tennessee! I drove the whole way back for 23 hrs because it was holiday on way back and every hotel I stopped in was booked! So I had coffee and drove straight thru! Lol...

[Lure2]

Hi again,

I wonder, as you are on Warfarin like me, if it has helped your APS-symptoms. You have not talked about them.

What therapeutic level has he put you on?

Mine is an INR between 3.2 - 3.8 and I selftest since 4 years. I feel best on the higher level. We have very sticky blood indeed but the Doctors do not understand this. My eldest daugher has Type 1 Diabetes but not APS. up to yet.

As you have so many different diagnoses it is very important that you do get a very skilled Doctor, probably a Specialist of APS that could be a Rheumatologist first of all. Thyroidea-illnesses, Sjögrens and APS and SLE are "cousins" and I have heard also of vasculitis together with APS. Type 1 Diabetes should not be too difficult to diagnose but the others are I am sure.

Kerstin

[whitleybayfc in reply to Lure2]

my levels between 2 and 3,was there yesterday was 2,giving me a wee bit more.Im under a consultant rheumatologist for vasculitis and aps ,an endocrinologist for addisons and diabetes.Ive had positive diagnosis for all my conditions.Yes I understand at first they treat symptoms ,but autoimmune illnesses are incurable just managed.

[whitleybayfc in reply to whitleybayfc]

I hope your family all ok,ive been ill health retired at 51 two years ago.

[Lure2]

As to APS a Specialist should treat the thick blood. We have so many different symptoms and even Prof Graham Hughes has been astonished as to how many different symtoms reduce when we are properly and stable aanticoagulated. I myself have had a lot of microembolies and today I have Pulmonary Hypertension and leaking heartvalves because i waited too long before I started Warfarin. Those tiny clots are not always seen on a Scan and you do not even always feel them.

So it is very important that your Rheumatologist know what APS is about - very sticky blood!!

Try to selftest then you perhaps will have 2 machines to test yourself on (Diabetes and APS). As I have all the three antibodies positive I have to test every second day and if I could not selftest i could not be on Warfarin for anticoagulation. I keep my INR in range and have never had any bleeds whatsoever and feel rather good actually.

Kerstin

[whitleybayfc in reply to Lure2]

Good to hear your feeling good ,can you send some feeling over here please.

[Lure2 in reply to whitleybayfc]

Here they come ............. right from sunny beautiful Stockholm!

[MaryF Administrator]

Fatigue is very common with autoimmune, often severely so, but always vital to keep the diet balance, also levels of iron, B12 and vitamin D and for the thyroid function to be checked regularly, not everybody suits 'Levo thyroxine' MaryF