I have episodes of extreme/sudden tiredness that last from 30 mins to several hours, a few times a week. It usually happens mid-morning when I'm at work (in an office on a computer - but I've done that for many years). It's tiredness to the point that I feel like I've been drugged & find it almost impossible to stay awake, let alone concentrate. Sometimes I get light headed and/or nausea with it. I've recently had several tests (carotid artery doppler, brain CT, ECG & Electrocardiograph, pelvic US) and all clear except for sinus issues (sinus in the nose/face, not sinus heart rhythm).
Can anyone please help? If this keeps up, I may lose my job. Lisa.
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LisaB333
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I think that there is some relation with blood coagulation.
When I talked to my hematologist, two months ago, he though it might be caused by hypoglycemia and asked me to eat sugar or a chocolate bar when it happens... I did it and it didn't help (this didn't help me but might help you... There is no reason to think it is the same process for you and for me)
I already knew that my facial expression change and my best friend is able to notice it a couple of minutes before I feel it
3 weeks ago it happened to me when I was at the physiotherapy. They told me that I was a bit pale and they checked my blood pressure 10-15 minutes after it started (it was the time they needed to get a nurse to come to check)... it was normal.
At the moment this is all I know. I will see the rheumatologist next week, and the hematologist and neurologist next month.
I am very glad you open this thread and I hope you'll get an answer soon.
I am probably guilty of the "if I have it everybody else has it" patient syndrome. And so with that self humbling introduction may I suggest trying a high vegetable, low-carbohydrate Paleo diet?
The doctor may be right that your severe fatigue is caused by a blood sugar imbalance. But here's the thing: everyone who is on the standard American diet a.k.a. the SAD diet, suffers from blood sugar imbalances. It's just that some people get immediate symptoms, while others' bodies are able to compensate in the short term though in the long term they may end up with autoimmune diseases 🙋🏿 Or type two diabetes, or cancer, or some other highly unpleasant chronic condition.
If you try the diet, keep a sharp eye on your INR because even if your vitamin K intake stays the same, the SAD diet usually causes some gut problems, so, being off the SAD diet means your gut is going to operate more efficiently and will absorb more nutrients such as vitamin K.
Lisa, I am no doctor, but this sounds sort of like narcolepsy (Pickwickian Syndrome) not only due to fatigue but SLEEPYNESS (spelling?). I have done that at times where I would fall asleep within minutes of episode starting. I still have it. It is more of neurological problem IF other diagnoses have been ruled out. I was put on Ritalin for a while but it didn't help much. There is other drug called Provigil in US. Took it also but not much help for me. Nancy in WV
This exact thing is happening to me! Its so bad, I do the head bob at work. It is to the point where I almost fall asleep at my desk. Like you, it is always mid-morning.
efexor 150mg, seroquel 300mg are both given to most people for depression. Effexor is not usually sedating, the seroquel can be slightly tiring. And rather than having a chocolate bar, a piece of fruit and some form of protein would be better if it's just run of the mill mid day fatigue. But I too go through extreme fatigue periods. After an hour car ride, and an hour long doctor's appointment I fall asleep for the hour ride home. Right now I am going through a period of extreme fatigue; where one hour of doing things means I need at least an hour of sleep, or more. 5 appointments this week, have washed me right out for two or three hours of much needed sleep each time. I am sorry you are experiencing this. Keep talking to us. We might not know it all, but we are supportive.
I have this sudden tiredness too that just comes on so quickly, I feel totally exhausted when it does come on not just tired but EXHAUSETED!
I have sle and aps.
It's horrible because it kind of restricts what I do because if I feel up to going for a walk one day (rare but can happen!) I'd then worry that what if it comes on suddenly and I'm too far from home to get back quick enough, so then I just don't do things and I really need to lose some weight as been on 4 times my usual steroid dose as I get addicted to crunchy nut cornflakes or coco pops going through boxes and boxes !!
Do you have a Doctor who is specialized on our autoimmun illnesses. You say you have got SLE and Lupus. Do you have a Rheumatologist for those illnesses?
I feel so sorry for you that you are afraid of leaving home because you are afraid that your tiredness will come on suddenly.
We need exercise to feel better with HS/APS. Have you talked with the Doctor about the steroids? What anticoagulation drug are you on?
I hope you will have a solution to your problems as it has probably something to do with the drugs or perhaps a Doctor or several Doctors who do not understand these illnesses and how they work together.
Yes I see a rheum and I'm on mycophenolate 500mg twice daily hoping that can be increased instead of all these steroids.
Also on loads of others. Hydroxychloroquine, pred, zomorph only some of the 20 tabs I take a day!
I was hoping to get off the steroids and everytime I think I'm going to ask to come off them I have to have them increased! I've been in them 9 years on stop! Usually only maintenance dose of 5 mgs but then I spend several weeks at a time increased.
Then you are not on an anticoagulation drug. Clopidogrel is an antiplatelet-drug and works differently.
You did not say if you had an HS/APS-Doctor who knows autoimmun illnesses as a speciality for his exam. Not all Rheumatologists know these type of illnesses.
I am positive for all 3 aps tests quite strongly for some but never had a clot or anything. I see a rheum that specialises in lupus and he's always just treated me for the aps and lupus x
If he is a Specialist you could ask him if you could do a trial of LMW Heparin and see if you feel better with anticoagulation!
In fact you are triple-positive today and have symptoms from this exstreme tiredness. Who knows that if you started anticoagulation perhaps you could get rid of most of your other drugs.
If he refuses perhaps you should look for a Specialist who understands autoimmun illnesses as there are not all Rheumatologists at all that know these illnesses.
I can see that you have only been on the "Lupus site" here but you say you have got HS/APS and you see a Doctor who knows Lupus as well as APS but you do not know for sure if he is specialized in autoimmun illness.
I do not know Lupus only HS/APS but we have several members here with several autoimmun illnesses and I suggest you put your own question on here and tell about yourself and where you live and what has happened the last years as to these illnesses and pregnancies and also if you have got relatives with autoimmun illnesses.
Our members are very nice and knowledgable and know a lot. I think you would not regret your question.
I wish we (me too but I know nothing about Lupus) could help you that is why I would like you to put that question. It can be important for you.
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