Hi all, been docs today & he's checked me for fibro', he did the pressure test
.......& he says I hav'nt got it!!
I'm chuffed I hav'nt....but at the same time I would have liked some answers for the added symptoms I keep getting.
I mentioned some of the other syndromes that could be linked with Hughes......he says it's difficult for him as he doesn't know enough to determine which is or isn't Hughes......which I can understand.
I said I would mention my symptoms etc to the specialist at St. Thomas' in June & see what they think.....he agreed that was the best thing to do.
I also questioned how I am now given Quinoric instead of Plaquinil? he's not sure how it got altered on the perscription.....so he's changed it back to Plaquinil....I want to see if I start to have my joint pains improve with it.
He thinks maybe I need Nerve conduction tests?.....as I explained how my elbows / arms feel, so he thinks I should mention this too at London & then we'll see what to do next.
Oh the pic' at the top is of my new duck friend for Honey his name is Mumble...after happy feet! as he looks like he's smiling!
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HI Suzy, Gold luck on your search. A friend of mine has just been diagnosed with fibro. He hasn't got Hughes though. As for me as an ApS , I have lot of pain but my doctors are still trying to determine whether or not i also have lupus, but in my case i think i have fibro since plaquinol is not making much improve on the pain. Have you tried yoga or stretching classes? My mother has fibro and her pain on the back got so much better since she started stretching... And she doesn't take meds. Only acupuncture and stretching. Maybe it works for youas well. Best regards, BrazilianBads
This is a confusing thing for me right now I convinced myself I have fibro so i mentioned it to the doc who said you can't have it you have hughes syndrome then when i went to the physio after her assessment of me she said I'm presenting symptoms of fibro (i had not mentioned fibro to her).I will talk to my consultant in June about this. I just want either to be diagnosed with fibro or for it to be more recognised that some hughes patients suffer with pain on a daily basis.
Yes I agree, as everyone is different even with the same disorder, so maybe it is the Hughes playing part in this, he did all the pressure points on me & they didn't affect me, yet I had almost convinced myself it may be fibro'........I dont know why your doc' said you cant have both...because you can.....good luck in June.
I think this would make a very interesting question at the Forum next week. Not what happened to Howard, but other symptoms!
I would very much like to know if the experts think that all the symptoms we suffer are down to sticky blood (in which case why don't they resolve with anticoagulation?) or do they occur as part of the condition in general.
If you fancy asking the question on my behalf, as I can't be there, I would be very grateful. I think Dr Khamashta may be the one to ask as I understand he is doing more research into this question. I think it is a question we are all interested in.
Love and quack quacks to Honey and Mumble, oh and you of course!
Hi hun, Howard had a nasty accident Honey was lonely so I had to get her a friend he's lovely & they look very happy together
Yes it is a question in my mind...as they are convinced that you improve hugely once you are on anticoagulation......no migraines, no more joint pains.....ok....must be all in mind!!!!
Hugs back to you & your 'barking' mad palls too hun xx
Quinoric is just another trade name for hydroxychloroquine - it does exactly the same as Plaquenil. I've been using since I moved to Hampshire (different GP) over a year and a half ago and haven't noticed anything untoward
I would hope it wouldn't be different, but I have felt a lot worse since they stopped it.....it was only from seeing the post to do with the 2 sorts that I had put 2 & 2 together & am now questioning if that is behind the extra joint pains....so I will hopefully feel the benifit of plaquinil as this is an easier explanation & better for me!
I'm on plaquinil and still have headache and joint pain so gp today put me on gabapentin 300mg, it seems to be working already. Hope you get sorted, take care. Kim
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