Sticky Blood-Hughes Syndrome Support
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High blood pressure

I have high blood pressure but at present not on medication, i have Hughes & wondered if this was one of the symptom's.

I'm worried because i have the shakes, it's like a constant tremor.

I'm all over the damned place, i cant concentrate on anything, i have also had a bit of discomfort in my chest. I have an appointment with my Gp on Friday but wondered if anyone else has experienced this wretched feeling.

I'm frightened, i have a fault on my phone ( thanks to BT ) so now i'm with out a line in case of an emergency.

I hate this bloody illness my heart is going ten to the dozen, i want to scream somebody bloody help me. Sorry i just need to hear from somebody,

26 Replies

If you feel any worse than you do, please go and seek medical attention, and perhaps borrow a mobile of somebody to help you through the period with BT. MaryF


The first appointment i could get with a Gp was Friday afternoon.

I am so frightened with the awful symptoms i'm getting i took another blood thinner last night, i know i shouldn't have done so but it was pure fright i was heading for another stroke.


If you really feel that bad take yourself to hospital and take somebody you really trust with you. MaryF


Hi Jillmo,

Sorry that you feel so bad at the moment. Do you always have high bloodpressure? If you did have high bloodpressure most of the time, you should probably be on medication for it.

Bloodpressure goes up and down. It is not dangerous to have high bloodpressure for some day.

Very good that you are seeing your GP who knows you on Friday.

Try to take it easy which is not easy every time. I know. Wish I could help you. Hope you get a good nights sleep. Put something under your head and chest in your bed. It can make you feel more comfortable. I have also felt strange feelings (wish I could express my words better, would be easier if we could speak Swedish).

Let us hear how it goes.

Best from Kerstin


Thank you Kerstin for your kind word's. These strange episodes are very frightening when you live on your own.

My blood pressure tended to be on the low side for many year's but now it is high and needs medicating.

My consultant is telling me blood pressure is a silent killer and all the time it is not being medicated it is doing serious damage.

To try and get an appointment with a Dr is a struggle because they are so booked up.


Hello, I think the first thing to do is to see if you can get to see your doc a day early, just to reassure yourself and stop you panicking for another 24 hours. I get similar and am going to get my INR checked as I thought it may be because it has dipped too low. Are you on blood thinners? Try to stay calm (easier said than done, I know) until you get in front of a medic. Diversion tactics to take your mind off it for a while, especially with high BP, may help. Take care x


I wish i could take my mind of it but my mind is all over the place at the moment. I have a continuous drumming / pulsating sensation in my ear & discomfort in my chest.When i do get to see the Dr they dont seem to have a clue about hughes and it's many symptoms. x


Yes I've got the drumming, sounds like you do need to be seen. Tell me about the doctor! When I walk in she opens! Doesn't instil confidence, does it? I've got a referral to Guy's to see an expert, hopefully then I'll have someone putting all the pieces together. Take care, plenty of rest xxx


Great new's to hear of your referral to Guys you will be in good hands many on here pay private to be seen there.

I payed to be seen at London Lupus center where i got my answer's because i had lost all confidence in my consultant and Gp. it will be interesting to hear how you get on.

Good luck with your appointment i hope you get some answer's soon.

I'm going to take it easy today, not that i could take things much easier as i'm so lethargic. x


Good plan to take it easy! I've slept on and off most of the day today! Hate feeling so lethargic and having to pace. Whereabouts are you? I'm in Kent, raining all day 😏


I'm in Wiltshire. I think the lethargy & brain dead feeling is the worst, no matter how you try you just cant function. It's rained all day so like you i have been resting on my bed watching tv. Yawn x


I just did a couple of washloads and hoovered the lounge - not because I wanted to, but because I thought I should! Supposed to be going out for a meal tonight and I'm knackered again! My standards have so slipped - I used to take hours getting ready to go out, now I just can't be bothered! Its awful, isn't it?!


When your so knackered you slip a coat over your nightie then you know something is wrong. I have slipped a pair of trouser's on and nothing but a jacket up top before now to go to the local shop, shssss dont tell anybody. :-)

At least you managed the hoovering, my dinner was lush tonight i hope you enjoy yours.


(Sigh) partner was too tired so we didn't go. Can't complain, it's usually me cancelling things. I remember doing the coat thing when pregnant to go to the shop! Too old and worried about what would happen if I had an accident now! 😝


I have taken myself to ER many times with similar symptoms but the best they could come up with was chest wall pain. ER would rather you go in and it be nothing than not go in and it be something serious. If you can't get into see your GP ASAP then ER is a wise place if you have chest pain and feeling unwell.

So many weird things go on witth our bodies with APLS and many of them go unexplained. It can be very frustrating.

The fear of the unknown could also be making you feel wretched.

I say when in doubt get it checked out.

Let us know how you get on.


That is exactly where i'm going if this wretched feeling doesn't go away.

As i have said above i got so frightened rightly or wrongly i took another blood thinner last night.

Most episodes of the dreaded unknown symptoms that come and go i can cope with but this is unnerving to say the least.

I'm all blown out like a telly tubby it is all so uncomfortable.


When your head is in a swim it is hard to take all the info in, but i have had a stroke in the past. I'm not on any blood pressure meds but think they will be introduced after seeing the Dr tomorrow.

They dont seem to be checking my INR but i shall ask then to do so, i must admit i did panic hence taking the extra blood thinner. :-(

I was admitted once with chest pain they said it was muscular !

I'm staying calm today. x


I'm very sorry to read this. My experience with high blood pressure is limited to the high pain months prior to my hip replacement. So I have no practical, blood pressure – based advice to offer. Sorry. But my thoughts and prayers are with you and I hope tomorrow's doctors appointment brings you some much needed guidance. Do let us know how it goes.


I remember you telling me about your hip replacement, i do hope it was all worth while and your back out exploring the country side you love so much. Take care Gina


Yes, thanks for remembering. My hip replacement went well and yes, I am back to hiking and rambling with my hiking club. A week from Saturday I am leading an excursion to the hamlet of Helvetia, WV. So, why is a hamlet in the isolated mountains of West Virginia named for Switzerland? Glad you asked. Back in the late 1880s a group of Swiss immigrants from the same canton were talked into purchasing land near a town where (so they were told by the fast talking salesman) the locals needed help learning how to farm, raise cattle and make cheese. When these immigrants arrived in the nearby real town of Elkins and tried to purchase a ticket to this "town" where they now owned land they were told there was no town there. Their deeds were found to be valid, and a local did drive them off into the middle of the forest. Where they found: no town, but a huge verdant forest. So they built their town and their farms, and though only a few of the original structures remain, they used the construction models they knew : from back home in Switzerland. Their descendants live there still, though their economy is lacking and a lot of their children must move away to find work. But there are desolate, unpaved county roads, lovely mountains, exotic plants (the area is so moist that it is in contention to be classified as a micro temperate rain forest) an inn and a restaurant with wonderful Swiss/German recipe offerings.

I'll spend the night before at their inn -- no TV, no cell phone service, but a cracked window and you can hear the headwaters of the Left Fork of the Buckhannon River gurgeling away, or go onto their 2nd floor deck to admire the stars in the Milky Way. Then a 4.5 mile hike with a steep ascent and descent with friends, followed by (possibly) taking a local up on an invitation to attend what he calls a "cannon party;" he will fire his antique cannon for us (no projectile, just the gunpowder.) Followed by a Swiss dinner. Ahhhh!

Somebody has to do it, right? I'm supporting Helvetia's local economy.


Oh Gina why oh why cant that somebody be me ? ? ?

What a wonderful story behind your adventure i love the hills & mountains, it has been a long time since i where among any such scenery.

I have visited Germany also Ostrea but the day that were going to Switzerland there was an avalanche blocking the road so i didn't get to see the beauty of Switzerland or taste there wares.

Who needs modern tec when you have fresh air, beautiful scenery, cracked windows & gurgling brook's, it's my idea of heaven.

I'm going to look at the places you have mentioned & take myself off on a tour even if only on the net. :-)

I often do that when feeling low it gives me an instant lift.

Enjoy every second of it.


I have confidence that your docs - present and possibly future ones -- will eventually settle on effective treatments. Then you'll be back on the trail. you Brits are lucky to live in a country where hiking, aka hill walking, does not require the tents, backpacks, and strength that one needs here in the U.S. I still dream of my days on the West Highland Way in Scotland. Every day! Food I did not have to carry and cook! Every night! Quiet sleep in a real bed in a real building which I did not have to carry!

And when. -- note I say "when" and not " if" -- you are able to travel and hike again I will be more then delighted to show off the best trails in my state of West Virginia.


Scotland was another i did not get to explore. A dear friend & i were in the lakes we intended to travel on to Scotland but illness sent us home early.

You just keep filling my head with your wonderful journeys, i love hearing all about them.

Keep fit Keep well. Jill x


My swine loved a day off work to take me to my many hospital appointments but when he got himself in dept & fled the nest in the divorce court he denied he new i was ill. ( Prize pig )

I won my case I had several diagnosed illnesses by then but it still left me homeless.

With my illness the more i do the weaker i get, i was diagnosed with M.E in those days, autoimmune disease was not widely recognised.

Arthritis, fibro myalgia did not go wello on top of my other ailments.......hypothyroid, hypoparathyroidism.

A recent trip to London to see Prof Hughes added Hughes & sjogren's, i feel so ill at times i dont know what illness is doing what.

I have gritted my teeth so much my jaw aches, it's a bitch of a thing.

I feel a little better than i did last night, i'm not quit so gittery as i was

Belly is now rumbling & my evening meal is calling.


I've been looking at blood pressure monitors online today. The consultant at king's said high bp was the biggest risk to the aneurysm rupturing. Can anyone recommend a low cost one? There is a huge range out there, its confusing!


I have just purchased a omron one off ebay for £11 with postage ! It is an upper arm

one, my daughter inlaw that went on the wrist but it wasn't that accurate.

I have also purchased a Lloyds blood pressure reducer off ebay for £9.50, dont ask me how it works but apparently it does.

There was a couple about to finish auction so eye's peeled. x


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