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Sticky Blood-Hughes Syndrome Support
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my bones feels like they are being crushed could it be a fibro related issue????

I was diagnosed with apps earlier this year and have been on warfarin since which has really relieved me of all the funny head symtoms. but for the last 3months when I first get up in the morning I can hardly walk on my feet as they feel like they are being crushed into the ground, i have had exrays and scans to eliminate any fractures as advised via my doctors(although I knew i didnt have any but the doctor said we have to do it to eliminate possibilities) the pain has now spread to my whole body in that any pressure on my feet, knees, lower back and hand joints can be very painfull when I have sat/stood in one position for more that 5 mins, i recentley saw a fracture doctor at the hospital who advised I take a anti flamitry drug, which I explained I couldnt as I was on warfarin, when he then know I had APS he said that could explain a lot as it might be linked to that and I could have a fibro issue??? he says he will inform my rumo who i have an appintment to see in March......just wondered if anyone has had these symtoms and what is done about them.

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Hi there, sorry to hear about your discomfort, it could be fibro, and you need to make sure they check out your thyroid and also look at Sjogrens and Professor Hughes often quotes, they come as a trio. I have all three, plus two others. It does sound, as if you have a careful team around you, if in the UK, do please private message me as to who your careful doctors are, so we can put them on our UK data base. Thanks. Mary F x


thanks mary, I have noticed you always respond with informative infomation to people using this site. i am sorry to hear you have all three and more!

How do i private message you to let you know the name of my rumo doctor.

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You just click on my name and it comes up with send message... or you can put it on here openly, we are building a data base, as you probably are aware, always better to publicize the good care rather than the bad... as in name dropping... as it keeps the work of the charity in a very strong place. We do of course hear about bad care which we try and help with, but tend to not put their names up in lights.. Whichever you are most comfortable with. Thanks, Mary FB


Hi Sharon -- i know the feelings all to well the joints in my feet by the toe's will swell so that my toe's are like a 1/2 inch off the floor-very painful --along with my knee's-- back and shoulders. osteo arthritisis is the problem and is effected by my flares-also my hips a.v.n.-one of which i had surgery on in June-also tremours of all muscles and muscle spasm's all atributed to tha APS i am a tripple positive so that may explain the depth of my problems ,there is literiture on all this in the various sites -- i brought them with me to Doc's- luckly my rheumy is great and didn't bat an eye lash as to getting me the help i needed- as much as they can . i just saw my new Doc -at paincare as i have mentioned - i can't start anything till after the 5 th of Nov my next appt with rheumy to make sure of no problems with 2 new meds to try to stop all this pain and the numbness and tingling in arms and hands. Gabapentin and nortriptyline are going to be the start i guess so long as my eye Doc dosn't think it will effect my open angle glaucoma isn't effected--if DC Chou is willing . she also put me back on Baclofen{muscle relaxers]--- she is also considering possible stellate ganglin block for UE neuralgia possilbly related to my hypercoagulable disorders-an other thing that is being considered is capsaicin creams--next friday if no improvement with Baclofen espeacially in back problem we will try a trigger point injections-occipital nerve blocks with out steroids also could be a candidate for a obturator nerve lateral branch block if not a surgical candidate. all this is still up in the air till the 5 th accepting the baclofen and i am also going back to therapy after they found clots in left leg ' they are of a superficial nature and not a big problem right now ?? i am liking this new Doc she is very knowledgeable-- personable-and agressive and i guess it doesn't hurt thst she looks like an angle- especially if im going for needles in my back -- this i told her - she is still getting use to me ,but she also has a great sence of humour-- that helps when dealing with me-- she likes my positive out look she say's -and i always am happy -- i told her not always so chipper but i stay away from people when i'm having a bad day . she said i could call her at anytime if i needed her - this is a big comfort for me now because of all my flare ups recently.. O well thats what i know right now . i'll be letting you know as things progress --- :-) the ginny pig jet


Sorry Sharon- i should of put the other info on my last blog.. OOOPS- I'll try to do better--jet- some times my brain isn;t working so well


Hi Sharon yes my feet & joints oftenfeel like that,I have been tested for lupus & fibro & bothhave been negative so far, I hope you get some answers & relief soon x


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