Sticky Blood-Hughes Syndrome Support
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Bruising of Fingers

Hi , I wonder if anyone could help ? I have Lupus SLE & Fibromyalgia . For the last few years I have had burning fingers which has progressed to affecting my arms. These symptoms are getting steadily worse. Yesterday for no reason two of my fingers went blue, it looked as if I had caught them in a door.The pain is also in my toes &. legs, but not as worse as hands & arms.I also have Livedo Reticularis.I was checked for Aps in November, but they came back normal.I have also had Nerve Conduction Studies which also came back okay. I am seeing my doctor tomorrow and was not sure if to request the relevant blood tests for Aps ? Thanks x

10 Replies

Hi there - you do need to get checked for Hughes Syndrome, and often people with Hughes also have Sjogrnes and Thyroid issues which can at times be wrongly diagnosed as Fibro:

You need to ask you doctor to do tests for Antiphopholipid Syndrome and be aware you may need slightly more detailed thyroid tests than the norm! If you tell me which area you live in, I can advise you who your doctor needs to refer you to. Mary F x


Thank you Mary. I live in Cambridge. Is it possible that your blood tests can come back negative the first time they are tested ? I am really getting frustrated that nobody seems to know what the cause of these symptoms are ! My ana is really high also my Dsna. My medication is methotrexate and steroids. Also Gabapentin which is helping with my symptoms at the moment.Maureen x


Sorry meant to say that Gabapentin is not helping at all.


Hi there, some of us on here have sero negative hughes and you also need to look into Raynauds Syndrome also. If you look under East of England: You can see specialists in your area:

Mary F x


Thanks for the info Mary.I will look into it.x


Follow Marys advice. When you mentioned your fingers the first thing I thought of was Raynauds......I would get it checked out.

My tests are negative but dont give up ask to be tested again.

I was given gabapentin but all it did was put me in an even more zombie state !

Like you I have FM and also get the dreadful burning, overheating & pain.

Hope you get some answers soon. Jillymo x


Thanks for replying jillymo, do you get the burning in fingertips, which progresses to arms ? I have suffered from this problem for two years and nobody seems to know what it is.Mine are worse when I am resting and especially when I am in bed. Sometimes the pain is unbearable. I did have an Iloprost infusion but that dident help at all. Back to the drawing board I think. Maureen x


Hi Maureen,

Firstly i have not been diagnosed with Hughs but I strongly suspect lupus or hughs due to multiple symptoms.

After many years of ill health I had a health crisis In 2011 & have not been right since.....Infact was not right before, but things got a lot worse..

I started with headachs, sinus problems & cronic overheating, then I started to get strange sensations & numbness in my legs.

Burning & itching around my ankles followed cant say i have had it in my fingers or arms.

Mine is worse at night as you say when resting, have you looked it up on the net ?

I would look up Raynauds to see if it is a symptom of that.......have you got a good Gp that listens ? If so pop your self along to get it checked out.....all these ailments are hard to live with.....& none of use wish to do pain. Jillymo x


Not a doctor but I believe livedo retucularis is frequently seen in Sneddon's Syndrome . . . Just a thought.


Thanks Calico, I will look that up.Maureen x


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