Sticky Blood-Hughes Syndrome Support

Joint pains worsening, going dizzy & possible sleep walking!

Joint pains are worsening...all over almost so much more than usual, to the extent I could do with using a stick...( which I normally refuse, yes I'm a stubborn s**t!! )....but I wouldnt be able too anyway as hands, elbows etc are so painful too so they wouldnt support me if I did!

Apparently I came downstairs about 2am last night after being asleep for about 3 hrs & went in the kitchen.....I cant remember getting there?? All I can remember is standing in the kitchen looking at my tablets! wondering if I needed to take any? had I forgotten them earlier??

I dont think I properly woke up until I was holding my tab' tub!!....worrying :/

I wandered back upstairs & went back to bed.....later on I kept waking up again as I couldnt sleep on my left shoulder as it was very painful....the pain has been travelling around all day..into right shoulder blade area, then the left, then in my chest.....seems to be settling now but also earlier whilst cleaning / feeding pets in garden I had a sudden feeling I was going to pass out!! I fell quickly to the floor (still on feet) just incase I passed, but I still dont feel right? poor ferrets were looking at me gone out!!

Just made myself homemade chicken maryland with a couple of chips & banana fritter to cheer myself up :) first real meal I've had in a while again due to lack of appetite :(

Off to chill in bath now & see how I am in a bit?

Going hospital tommorrow to get blood tests done for vit'd, arthritis etc....

15 Replies

I wouldn't go in the bath yet unless their is someone with you, not a good idea if you are not feeling well Karen xx


Hubby is just in the room below..just on way now & I shall let him know to check on me, ta hun x


hay buddy - every thing you are going thru rite now is awful - believe me i know - you need a sleep study done ? i was not really excited about it --BUT there are to many things that can go WRONG-- you are suffering from fatigue-as i - sleep apnea is a big part of this - so i just learned- you are alot younger than i - but never the less -- you gotta get your dc to step it up --- i mean it!!!!!!!!!!!! dont make me have to make the swim to kick you in the butt , with your own boots !! i dont sleep walk but not a good sign , according to my doc s here. please get back --- your VERY concerned friend ----- me!!


Hi jet.......I'm sure I'll be fine.....hoping they send me to have some tests done for sleep stuff soon, been asking forever but it keeps getting left!! I also wake up in night choking.....they just keep leaving it?

I have done the choking thing in the past & found myself at the top of the stairs too!!!! son ( 19 ) found me once & I wasn't responding to him for ages...until I stopped choking & woke & then I saw really scared him :(


you most likly have GERD -- this in itself ,with me is ther e major concern! if this should happen at the same time , with me its very very very BAD. i stop breathing way to much ! and my oxygen levels plummet ?? this not good , do you think its time to maybe get another dc involved ?? or can you ??if you are able than do it !!i didnt put alot into my very resent sleep study ,but stupid me should have , the more i am talking to my other doc , and nurses that i have great faith in are very concerned. every thing that we have talked about are to much the same !!!! please be careful - and would you please please keep me up dated any time ,asoften as you need !!! i will be seeing my docs soon and ould be happy to get a opinion an anything !!! i mean this . have some one keep an eye on you !!! thanks ---me


Hi suzi

Thinking maybe time to kick docs ass. Get the boots out hon

Either that or try another doc. Or ring St Thomas's see if you can see them soon.

Be careful up n down that garden, try keep someone with you. Worried bout you!!!

What a bunch eh?

Take care gentle hugs love sheena xxxxxxxxxx :-) :-) :-)


Thanks hun, theres never anyone around here......I always carry my phone with me tho' when up garden as I listen to my music. You get yourself ok anyway...dont you worry about me xx

Just had all my blood tests today...we'll see if anything shows up hey?

I will be getting my boots out dont you worry about that guys!!!!

I couldnt believe it earlier I mentioned Hughes whilst having my bloods done & at help desk & no one had heard of it or have leaflets on it?!!

so I've left them a pile of them & if they wanted me to I would go back with lots more!!!!

Contacted around 15 radio stations over the last 3 days & just waiting now to see if my artical may go in on Saturday too......I'm trying! :)

Went dizzy earlier again when out with made her worry :( I felt like someone was shoving me?!! Luckily there was a fence in front of us for me to get hold of :(

I'm sure I'll be fine...I'm taking my tabs' for Menieres in case its that?

Love & hugs to you all xx


Going back to the start and your pills do you have one of those dosit boxes mine comes in a case with 7 days you can take one day out at a time, before I got it I often couldn't think If I had taken my table

its. Now its brill I just look to see if I have an empty box for the day ! : )

My next problem is now remembering if I have put deodorant on I never foget but often I think I apply it twice

Love Karen xx


Hi Karen,

Yes I have a week box with seperate days in.....but all I can remeber was looking at tabs as if I was argueing the fact wether I had them or not...even tho' the day was in front of me...empty!! I obviously wasn't awake properly :(

My problem is remembering to put a pair of boots...that match! in my gym bag when I go!!....yep you may have read the post where I took 2 boots of different styles?!!!!

Sue x


well - suzy - the boots wernt the only problem ---- but we wont mention the others HAHAHAHAHA. tag your it ???? oops forgot my name ---- benny something - have a good nite


You are a card...... bob, bill, john......whatever your name is!! :)


my god it warms my heart to know i made such a possitive impact that you remember all my names!!! there were 7 kids in my family -mom and dad would call us by the wrong names quite a bit -- mostly when i was in trouble!---------- for awhile i thought my name was god dam it !!!!!! but then i allways have had plenty of names. and i thank you for remebering yours you have just for ME ---------------------------- me p s i was showing mary you own blog site , she was and is impressed - dont let it go to your head !?!? unless of course you want to ????????????????????????????????


Aaah ow sweet....glad she likes it :)

Oh believe me it wont go to my head....nothing stays in there long enough anyway :) besides that doesnt matter what I achieve I've never thought of myself as anything....I know I shouldn't say that, but its how I've always been...hence the many boots for when I fall too low!

Thats why I love my art & photography so much I suppose...I get lost in it & can be someone else for a bit....& my pets dont judge me they just want their food & love their cuddles!


Hi to Mary too :)


Had some results back from blood tests.....the ones for arthritis & thyroid are ok :)

The one for vit d havn't come back yet so will have to wait about that one for a bit longer.

Phoned the doc' that has been there for me since the beginning of aps, she agrees that fibro' needs to be looked into too whatever the outcome of the there's a HUGE sigh of relief......I just want to know one way or another.....'not to put too many eggs in one basket'....but just so I know what I'm dealing with!

I think I will re-ask about seeing a dietician too as I need to know what suppliments I can / cant have so I can help myself anyway I can.....


sounds like good news and i agree the dietician would be good.



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