Unrelenting tiredness: Hi. I had my... - Sticky Blood-Hugh...

Sticky Blood-Hughes Syndrome Support
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Unrelenting tiredness

Hi. I had my first stroke in 2002 and got my diagnosis of APS in 2005. Since the first stroke I have suffered greatly with fatigue. Every now and then things will improve only to be thrown backwards again by another stroke or tia. My last one was in February and as I am fed up with the unrelenting fatigue I have just done a test to see if I can reset my body clock as on most days I do not seem to be able to get out of bed till at least 12 noon.

So the last week I have been in Greece and made a decision before I came to allow myself to sleep with no holds barred, no alarm clocks and no need to go anywhere. So for the last 7 days I have slept every night for between 12 and 14 hours. I have not needed a daytime nap with the exception of the first day but this does not look very promising at getting back to a 7-8 nightly sleep. Also I am no less fatigued.

Can anyone help?

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Have they checked your heart valves. I micro clot and have been told “You will know when You need an operation on your mitral valve prolapse, as there will be no pain just tiredness”. Just an idea.

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Thanks Linda. I’ll suggest this when I next see the doc. X

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Hi, if your having further TIAs or strokes, is your anticogeration high enough?

Please mention all this to your APS specialist.

Also quite common for us is to be low with ferritin, B12, so worth checking aswell as thyroid.

I have to go with the flow of what my body needs, my problem is I can never sleep for longer than 3-4 hours at a time, which also leaves me exhausted.

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Thanks Holly. My anticoagulant has never stopped me having tias and strokes but we all assume it is stopping me from having more serious ones but it is constantly under review.

I have just ordered the private testing kit for thyroid and vitamins so we’ll see if anything else is picked up.

Thanks for replying

Nicki

X

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Nickisax- this is exactly my thought. Holly has echoed my sentiment exactly. I feel very fatigued with a sub therapeutic INR.

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Thanks Kelly. I’ll certainly check up on this.

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You will see from my posts I am bedridden 3 or under. I struggle below 4 but above 4 I’m much better! So INR definitely effects me!

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I mentioned tiredness to my consultant last month. Dr Cohen did all the blood tests to check causes and said if all comes back normal to consider hydtoxychloroquine which has been proven in APS to help with fatigue

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Thank you for sharing!

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That drug was amazing for me I felt so much better on it ;after the initial tummy troubles - not pleasant) but am unfortunately due to a heart condition;Long QT) I had to stop it 😕😥😡 if I were u I’d definitely try it x

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Thanks Yissica. I did reply to you earlier but it doesn’t seem to have registered. I did try this drug a few years ago but to no avail. If I can’t fund anything else I may ask if I could try this again though. Thanks x

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You really are having a bad time. I’m sorry I can’t offer any help just understanding and support.

I’ve never had a stroke but I do have unmanageable fatigue. I too struggle to get up before 12. But can’t sleep before 2-3am

I think it is because with APS being an autoimmune condition this is happening in the body as I understand it (my analogy) :

When you have a flu bug, your soldiers (white blood cells) spring into action and set to work battling, fighting the nasty bug. The constant fighting makes you (the host) feel exhausted and all you want to do is lie in bed. When the bugs are all killed the fight is over; the soldiers return to base, relax (go on leave) and you start to feel better. You are less tired and get on with you life again.

Now sometimes when the bugs are all killed, the soldiers remain on red alert and search around for another invasion.

They then misguidedly see a specific healthy group of cells and see them as invading organisms (bugs) and they start a new battle. They start fighting when there is no need. In the case of APS the soldiers fight the antibodies in our blood. In the case of Sjogrens Syndrome; The soldiers fight the moisture producing cells of the body.

As the fight gets underway, again you (the host) become exhausted and want to lie in bed. You can also display flu like symptoms.

So with autoimmune conditions you feel exhausted because there is a battle going on and the response is to sleep in order to let the battle continue in the hope when it’s over you will be better. Unfortunately this does not happen for the autoimmunes, the battle goes on and on.

The medicals only defence is to give us immunosuppressive drugs, in the hope that they take a message to the soldiers (white blood cells). They hope that the drugs can persuade the soldiers that the battle is over, the bug has gone and they can rest again. If the message us delivered to the soldiers then the fighting subsides and you start to feel better.

The reason that we have to be careful not to catch bugs is that our soldiers are being told by the drugs - all is well, there is no bug, no fighting is required.

Many of us will have to stop taking the drugs if we become ill (only with specialists guidance) to alert the soldiers of the invasion.

I hope my analogy makes it easier to understand what is happening inside us and why we are often so exhausted.

Personally I think that resting properly helps. Listen to your body but - there is a fine line between giving up and resting when required.

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How fantastic to describe exactly how I feel, in such a brilliant and simple way. I just can’t find the words myself to express how wonderfully you have described and explained such a complex condition

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I’m glad to have helped. I used it to explain to my kids when they were young so they could understand why mum was so poorly and it helped them.

My initial training and job was in science and I’m a very visual learner so the explanation came easily to me.

I since have used it to explain to friends, colleagues and family. It’s such a hard thing to understand and people who don’t have an autoimmune don’t want to look into it like we do.

If people understand they can be more... compassionate.

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I shall definitely be showing it to my family and some of my friends. Thanks so much c

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Following up on Wendy's analogy, a leaky gut ( yes. thats a real term) means undigested food ends up seeping out of the gut, giving those soldiers more enemies to target. But leaky guts can be fixed. The best way is to consult with a nutritionist, ( also check with GP regarding dietary changes.)

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Thanks Gina. I’ll certainly look into this. X

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Yes I followed the anti-Candida diet for a whole year without a slip ;except a tiny slice of my sons 1st Birthday 🍰 cake!

I was supported by prescribed vitamins and minerals, Accupuncture, kinesiology, Reiki and Physio (osteopathy).

Sadly for me, it did no good at all. So expensive and time consuming. Each did help a bit but I wasn’t a lot better!

Hey but that’s me and my body - everyone is different! X

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I'm a cheapie. So I continually try to avoid purchasing more good quality, expensive pro and pre biotics. But when I stop taking them, hoping that my gut biome is now in good shape, then that embarrassing streaking syndrome resumes. Sigh, for me it seems that cultivating good gut bugs is what elbows out the bad ones.

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Hi Gina. What do you mean by the streaking syndrome?

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stool streaking

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Ahhh! Lol x

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Great explanation WendyWoo50.

I'm guessing your immune system is in disarray, and you feel tired all the time because of it.

Your inflammation must be extremely high.

Can you ask your dr for a prednisone Rx to try for one week, and see if that helps?

Assuming you're not anemic, and thyroid function is ok.

Kerstin

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Kerstin,

What luck have you had with steroids?

I’m now on Rituximab, but clotting anyway. Friday, 6 days ago, my Rheumatoligist gave me an injection IM of 120 mg of solumedrol.

I had done a reducing course of tablets the month prior prednosolone- without a lot of success. The aim is to reduce inflammation in veins. What does it do to your INR? Do different types of steroids affect INR differently? Different delivery systems into body make a difference?

( thank you Nickisax, and pardon the intrusion. Maybe the answer might help you, although I have another line of thinking for you and it’s more to do with making sure you are properly Anti-coagulated...I’m not liking that you still have little clotting events- that can also make you feel very fatigued.)

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I’ve not tried steroids before. I’ll certainly ask my team about this. Many thanks x

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KellyInTexas, I have only had experience with the prednisone. Not sure what different steroids would do. The two times I was hospitalized over the past 20 years, I was given the prednisone e dose pack after nothing else that was tried helped.

Though no dr likes to put patients on it long term because of the side effects, I have found that it can be beneficial in a pinch.

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Thank you. I’ve not heard of that. I’m on oral prednisone every day 7.5mg.

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Wow! So does your dr expect you to stay at that dosage? Forexample, I've been taking 5 mg a day for years, ....keeps my overall inflammation in check. If I experience a flare-up ( very rare, now).....I am given a prednisone "dose pak", which contains 40 (or 25 mg) for the first day, then steps down the dose ea h day thereafter.

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Have you done any recent Thyroid tests? I don't just mean the TSH the doctors does, I mean the more detailed tests? If you Thyroid has slowed down, or you are low in Ferritin, Folate, B12 and vitamin D, this will all add to your fatigue, beyond the issues with Hughes Syndrome/APS. MaryF

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Thanks Mary. The kit arrived today! So maybe this will show up some reasons behind the tiredness x

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I think I’m fortunate when it comes to fatigue. Unlike so many MS sufferers I seem to be the opposite. Once in a while I’ll have “a tired day” and sleep more - it happened a couple of days ago but in general I have no problem thankfully.

I’ve never had a stroke and hope I never do because the thought terrifies me.

I have an allergy to Lidocaine and the side effects of that leaves me looking as though I’ve had a stroke. If I need local anaesthetic I have Prilocaine instead.

Good luck with your next appointment x

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Thanks Stereolover x

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I feel empathy as I have the same issues. I'm tired all the time. Its everything I can do to get up and do the dishes or a load of laundry. I sleep from 8 to 12 hours at night and doesn't help much. Normal people without APS don't understand.

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Thanks for the support NanaPam x

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