Sticky Blood-Hughes Syndrome Support
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Hideous fatigue

Hello all,

Forgive the sympathy request nature of what follows but does anyone have any tips or suggestions on coping with bouts of crippling fatigue. I'm talking inability to get out of bed / dizziness & poor balance adding to the utter lack of energy.

Am thinking, diet, meds, even, whisper it, exercise tips?

Am so tired of being tired.

Meds are currently 20mg citalopram, valsartan 40mg and Daltaperin.

Thanks v much in advance

Hayley 😕😴😰

London.

22 Replies
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Hi there sorry things are rough, firstly when is your next medical review with your specialist? Secondly please get your Thyroid checked out, the TSH test is very unreliable unfortunately but those of use who have Hughes Syndrome/APS are at a likely risk of having a Thyroid problem, mine took years to show up in tests but nevertheless it was there. A slow thyroid makes you feel absolutely awful. Thirdly please also get your iron, B12 and vitamin D checked out. All of these things can make you feel considerably worse.

I enclose a useful sheet from Thyroid UK so you can see if it rings any bells whatsoever: thyroiduk.org.uk/tuk/about_...

MaryF

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Thanks for responding, I'm seeing Dr Khamashata on the 12th September so will ask him then, am desperate to find some energy from somewhere.

Thanks again,

Hx

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Make sure you go into detail wth him, glad your appointment is so imminent. MaryF

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I have been on low imflammatory diet & have seen an improvement. Involves lowering acid in diet so less meat, no bread (wheat) and cut out all the nightshades.

By the way is Prof. Khamashta back then?

I hope you feel better soon, know how debilitating fatigue is xx

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I'm not sure, I've not received an update but my appt is with him, will see who is there on the day!

I cut out bread a while back, will look at the others, thank you ☺️

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If you do have SLE or APS or indeed both as myself it can make you very tired. I could hardly stand up and was falling asleep all over the place before I was diagnosed.

However, once I had diagnosis my consultant put me on hydrocholoquine and said it would help the lupus and my intense fatique. He was quite right and within a short time I felt much better. Thats not to say I dont get tired if I do too much but the drug really, REALLY worked.

Best of luck for the 12th - take in a list and give it to him. I had got so fed up with explaining to doctors what was wrong with me I wrote it all down when I first went to see the consultant and handed it to him at the door. He took one look told me what a good idea and immediately thought he knew what was wrong.

Also you wont forget important things. Let us all know how you get on.

Regards Diane

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It is counterintuitive, but yes, I've found that forcing myself to do something! --even if it's a couple of minutes on the stair stepper machine --can help with fatigue.

Good luck and hopefully the Doc will have a better solution soon.

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Thanks ☺️

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Hydroxichloroquine (placqunil)

Was fantastic with my balance problems noticed the difference in 3 days

I am also on ferrous gluconate due to low iron stores, not sure if it has made a difference because I am always tired

But hope you manage to feel better soon

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My experience too on the low iron issue but instead of ferrous gluconate I am on Sytron oral solution (Sodium feredetate liquid 190 mg/5 ml) as I had problems with the tablets. If this doesn't work it looks like infusion or injections mght be on the cards.

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Thanks ☺️

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Well from what I have read, you take 2 separate med's that are to help you sleep. I suggest you have your thyroid tested. Do you have high blood pressure? BP meds can cause dizziness, and it is also a "wonderful part of APS". I have had those days, and thank the lord that my "fake husband" We are BFF's and live together. He is very sympathetic to the 16-24hs I sleep. I always said that if there was an Olympic sport for # of hours a person could sleep I would win ALL the medals.

You could also try taking knaps in the afternoon "cat Knapp's" see if that helps.

Try to do all of your "heavy work" in the mornings. By heavy work I mean house cleaning chores. Or any outings/running around needing done try doing them in the morning.

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I wasn't aware either of my meds help me sleep! Which do you refer to?

My high bp has improved but yes, v high historically.

I've always slept an enormous amount too, my bf calls me 'the incredible sleeping woman'.

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Are you sure you are seeing Prof Khamashta??

I was told that he wont be back for a minimum of a year, if at all

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My appointment is with him, I've not heard differently so I guess I'll find out who I'm actually seeing on the 11th.

I'll report back. 😌

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Hi Herbs77

How did you get on at your app? Did you see Prof Khamashta?

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Oh sorry, i did post a follow up below but not as a new post somit got missed, the reason for all the weird symptoms: I'm prgnant! Am being case mananged by Professor Cathy Nelson-Piercy so all is good, she has confirmed my pregnancy is viable owing to my condition and recent heart surgery. We are taking it one day at a time & are nit announcing it other than my cousin & brother.

Fingers crossed. We've lost 3 before, 2 m/c & a stillbirth at 29 weeks byt that was before my diagnosis.

I'll keep you updated with the progression.

Hxx

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Ah brilliant, sorry I should have read all the posts!! Sorry you've had such a hard time, will be keeping everything crossed everything goes as smoothly as possible and please keep us updated Xxx

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Hi there. It's always best to seek advice from a trained medical professional. I totally get what your experiencing, but it could be down to a number of things eg, your medication not suiting you, an inner ear problem such as labyrinthitis (vertigo) or even something as simple as water in the ear! You are obviously concerned enough to ask, so please speak to your GP. Stay in touch and let us know how you get on xxx

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Dear all, case solved, I'm pregnant! Not ideal timing as am still recovering from mitral valve surgery on my heart but I am extremely lucky to have Professor Cathy Nelson-Piercy case managing me. First appointment Monday.

We're obviously very excited to be allowed to proceed, we've suffered 2 miscarriages & a stillbirth so we are also very nervous.

I'll let you know how it goes.

Hxx

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How wonderful!!!!!!!

Take good care

Blessings

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Brilliant ! All the best x

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