Hi all,
Been feeling really fatigued and wanted to ask if this is common for APS or DVT/PE?
Would love to know if anything can be done to stop/improve it?
Fatigue and tiredness any advice - Hughes Syndrome A...
Fatigue and tiredness any advice
Written by
gazaeee
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36 Replies
•
I think it even feels more profound when laying down. Had it pretty bad since yesterday evening.
At this rate working is going to be pretty impossible. I used to work 10 hour days always on my feet.
Wonder if I need to start thinking about alternative careers if this doesn't resolve 
• in reply togazaeee
Welcome to the club. Extremely common.
Prof David D'Cruz and Dr Rachel Davies, both APS doctors in London published a study on APS, Lupus, Diet and Fatigue in 2012.
They found the for APS and Lupus patients two dietary things helped to lesson fatigue:
1. A low carb diet. For the purposes of their study, this was set at 45 grams or less of carbs per day.
2. Reducing calories. By about 500-1000 calories per day, depending on expenditure, and body size.
They didn't recommend avoidance of any foods, just that these two principles worked for fatigue and APS. Both docs have decades of experience with APS and Lupus patients.
Another study by Dr Colin Tench (who also works on APS) found that a gradual *aerobic* exercise program of building up to 30 mins per day also reduced fatigue in APS and Lupus. The key point is to keep heart rate under 70% of maximum (there are online calculators), which isn't very high. Most people when they exercise, train above this, then get worn out.
For pharmaceutical help. Ask your rheumatologist about going on to hydroxychloroquine. It's used for autoimmune related fatigue in both APS and Lupus (as well as for other symptoms)/
gazaeee• in reply to
Really hope that I can get referred to one of these Dr soon
• in reply togazaeee
I used to be hung up about getting referred to the doctors in St Thomas's. And no doubt they are excellent, and among the best in the world. But with time, I've realised there are many excellent rheumatologists and haematologists around the world, many of whom trained at St Thomas's, publish, and are just as knowledgeable, or even more so in many cases.
The trick is to find one with a specialism in APS who is patient friendly. My friend just found an excellent one in New York City. Even in fairly remote places. A few years ago, I was in touch with one Prof in Slovenia who had published widely on paediatric APS, and was happy to test my children, as it does run in my family. There's a rheumy in Somerset, which is pretty rural, who is excellent with APS, and my sister went to her, after initially being with St Thomas's.
In other words, if you're not able to get to St Thomas's, then it's very possible to find a great APS doctor closer to home, depending of course on where you live.
gazaeee• in reply to
Forgive my ignorance but how do you do go about finding these relevant nuggets?
• in reply togazaeee
Some of it is a bit of trial and error. But I read a lot of studies and research papers, and so I get a good sense of who is publishing on what, and what their expertise is, and how knowledgeable they are. Then I check them out on the web, perhaps their hospital or university page, see what other patients are saying, then go for it.
A simpler way is also to look where there's groupings of doctors with a speciality in Lupus and APS, who may even have formed a centre or research cohort within a hospital or university, but this is usually only possible if you live within easy reach of a big city.
It's also useful to look at the CV or bio of rheumatologists in your area to see where they previously worked or trained. You can get this off hospital and/or university websites. Even Google is helpful here.
For example, Colchester in the UK isn't exactly setting the medical world alight with insights. But the rheumatologist there is Dr Rachel Davies who previously spent many years at St Thomas and is excellent.
What I seem to hear from APS patients is a general dissatisfaction with doctors who *don't* have a speciality in either APS or Lupus, but most seem satisfied with rheumatologists or haematologists who *do* have a speciality in the disease, even if they aren't a big name or publishing studies.
gazaeee• in reply to
Do you know if there is a reason for feeling the fatigue more at night or when laying down?
I read your post late last night- I was too sleepy to make coherent sentences...
I wanted to send a heartfelt thanks to you for taking the time cams consideration to post to us.
Welcome home in every sense of the word, my friend!
Salstar• in reply to
Hello, I read often about hydroxychloroquine and I’ve never been offered this for APS. I am really tired but find it difficult to sleep as much as I need. Do you have a test on blood with a scoring that I have seen mentioned? Some say it really helps with tiredness, but I don’t know what test to ask my a Doctor for. Thank you and stay safe 😘
You are what you eat. The area of Functional Medicine is only recently beginning to prove the relationship between food and health. Fatigue is usually the result of a hyper active immune system. And a hyper active immune system is usually caused by exposure to a personal allergen --gluten, lactose, casein, soy, --or unidentified mold exposure ( for me? the book nerd married to the chess geek? Books. But we purchased a couple of well reviewed air filters so now we get to keep our books AND our health. )
So, it may be easier for you to consult with a local dietician or FM practitioner. My fatigue returned a few years ago and I went to Functional Med Cleveland Clinic where they asked me to go on an exceedingly annoying and difficult diet. But I stuck with it. And when foods were slowly reintroduced, we found....... I'm allergic to cashews! As a hiker who munched trail mix daily.... Well. No more cashews and my fatigue is gone.
You might also look for books by Functional Med docs. Dr Mark Hyman and Dave Perlmutter are 2whose books I have read. In them there is an explanation of why intermittant fasting can help stabilize the immune system and help the brain fight off the effects of aging.
So you saw clear as day afterwards that Cashews would do it. No Cashews and you're fine?
Must admit I don't know what functional medicine is but I'll look it up.
With regards to intermittent fasting. How many hours or days are we talking? And is that also fluids or just food?
Interesting you should mention mold as this new property we moved into has a problem with it building up on the walls behind furniture. Happens because of the humidity. We bought a Dehumidifier but its fighting a loosing battle and there is some close to where I sleep which keeps on coming back!
I first accidentally found that I have Celiac in 2004. My energy levels sky rocketed as my once compromised GI track was now absorbing iron and the anemia, which I had had since age 4, went away. ( Dr Hughes has noted a strong correlation between gluten issues and APS.)
I went to CC in 2017 mostly because I heard a podcast explaining a correlation between the Standard American Diet and alzheimer's, and since AZ runs in my mother's family and given the benefits of a gluten free diet, I was really open to the idea that proper food makes us healthy, and bad food habits make us sick.
Based on the high, but still " safe," histamine levels in my blood, my FM practitioner asked me to totally eliminate high histamine foods and then slowly reintroduce them on a strict schedule. I was worried. I love salsa and tomato based sauces so... is it tomatoes? I reintroduced, and no symptoms showed up. So, not tomatoes. Yeah!
Eggplant? I love babba ganoush. No, not eggplant.
Cashews? Surely it cant be cashews. Whoever heard of a cashew allergy? But the evening after the scheduled reintroduction and I was bloating, passing gas, burping a lot, and the next day the fatigue was back. so... bye bye cashews.
After reading the theory, ( or is it proved?) that our body produces BDNF ( brain derived neurotropic factor -- its a hormone that tells the nervous system to check its cells for damage and if found, repair or replace damaged neurons, ) only when the body is in ketosis, ( fat burning.) I now fast Tuesday, Thursday and Sunday by skipping food ( especially carb foods) from dinner to lunch -i.e., 18 hours. Dr Hyman has written a lot about this.
When you fast for the 18 hours, how do you make sure you get in the nutrition you need? Does it mess with your INR? Are you drained of energy during or afterwards?
The body stores enough necessities for an 18 hour fast. It does not mess with my INR, And my energy level does not change. Sometimes I get super super hungry and if so I may give in and eat some thing with high protein and no carbs. But fasting from dinner until lunch it's really not that hard. I started by putting breakfast off for one hour. Then on the next fasting day for two hours, and so on until I reached 18.
Can I ask did your doctors approve / disapprove of intermittent fasting ? Before diagnosis I was starting to put on weight (despite limiting carbs, which previously worked) and I researched Mosley's 5:2 diet and other fasting diets, I knew other people they worked for and I figured I could manage to self control for a couple of days a week. But stroke and APS intervened and when I went back to the diet research I was on warfarin, and found that 5:2 book (and, it seems, every reputable intermittent fasting diet) says it is specifically contra-indicated on warfarin. My Drs say the same.
Well, I am a warfarin oddity. I am stable when I vary my INR doseage - 6.5mg, Sun, Tues, Th, Sat. and 7.5 M, W, F. I am regular when I am a bit irregular! Weird, right! But the initial warfarin prescribing doctor opined that the blood tries to restore the INR to the thickness it things is good and normal, but which for me would be too thick. By varying doseage he thinks I can fool that blood regulator. Other docs since then, look at my INR stability success and choose to have me stay with the doseage that works for me.
You know I should get checked for that. I love the Mediterranean, North African and Middle Eastern diet so lots of bread, pasta and rice. I've probably often felt a bit tired but this last month it's been on a whole new level. Previously I could just soldier through and used to put it down to interrupted sleep.
Is it something I can verify quickly myself by staying off it for a few days or not really?
For me, FM recommendations were based on blood work. So their dietary change suggestions are based on blood work and detailed medical history.
I feel really silly asking this but are the recommendations from a general doctor or nutritionist? Who would have driven what blood to check
At CC Functional Medicine I first filled out an amazingly long history and returned it to them before my first appt. Then I consulted with a doc AND a nutritionist. More blood was drawn. I returned home with an annoyingly long diet plan. THEN after my blood work came in the doc phoned me with even more things to "not eat."
One ad for CC: (and reason why I now go up there -- a 4 hour drive for me -- to see other docs.) CC docs are all on salary. So they don't make more money by performing more procedures. AND, in every department, the docs gather on weekly or biweekly basis to go over the details of every patient that every doc in tht department saw that week. So -- patients get the best evaluations.
There is a Functional Med web site which lists all "approved' FM practitioners -- some docs, some dieticians.
actually, I got an email but since I have already done an elimination diet, I did not folliw up. But Dr Hyman is offering a free elimination diet plan. I need to look up the website. It will be on next post.
• in reply togazaeee
If you're eating a lot of bread, pasta, and rice and you're fatigued, then get your GP to check your blood sugars and HbA1c levels (another more accurate marker of blood sugars). Any GP can do it easily and will be familiar with both tests. There's a chance your insulin / blood sugar is messed up from all those refined carbs, especially with today's portion sizes,, which would also be causing fatigue.
And they'll probably check your thyroid markers too.
gazaeee• in reply to
Only curiosity though is why would it only start to impact me now in such a major way. Quite possible that it was making me fatigued before but to jump to what it is now in such a major way. Is there a sensible explanation for why that can happen? I wonder too if coming down off such a large quantity of could also throw the body off?
I also recommend checking out Dale Bredesen 's book, " The End of Alzheimers." Dr Bredesen has actually reversed Alz in patients at his practice by suggesting diet changes.
??? Big pharma has a lot of influence on medicine practices IMU, they even finance writing and publication of med textbooks, And if dietary changes reduce med using illnesses, then why would Big Pharma want yo support that idea? so, yes a little sinister,
Update. I think that my fatigue (especially a heavy feeling in the limbs) and nausea is much more profound at night. My tummy seems more unsettled at night too (last night it was turning and grumbling more which I noticed when waking to go to the loo.)
I always have dinner, take my Warfarin wind down on the fluids (to reduce night visits to the toilet) between 7pm - 8pm and go to bed around 4 hours later. My INR is currently near the top of my range at 3.1. In the morning after getting out of bed my arms and legs do not feel as fatigued and the feeling of nausea is a lot less.
Last night I was for some reason much more aware of my heart beat. I could hear it in my head and it seemed slightly faster.
Could this be a digestion/absorption issue which felt more when laying down or due to thicker blood slowing down and not doing its job as efficiently at night since movement is reduced?
Would love to know your thoughts?
Incidentally, i do still feel tired during the day just not as much as not the heavy limb feeling
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