Aching legs

[littlesinger1]

Very aching legs the moment is this a sympton of aps.? Just had bloods done to see if I might have lupus, also rash on face like an alergic reation to something,feel terrible with very bad headache s everyday.

[Lure2]

Hi,

Who diagnosed you for APS? If it was not a Specialist with knowledge of autoimmun illnesses I think it would be better to look for a Doctor (probably a Rheumatologist specialized in autoimmun illnesses) who could distinguish between Lupus (SLE), Sjögrens, Thyroid syndrome and also do the tests for Hughes Syndrome again if it was a long time ago you did the tests. Tests can sometimes be positive and then negative but Hughes Syndrome does not go away even if it later negative. Once diagnosed you have it for life. A Specialist can also give you the right treatment.

Are you on any anticoagulation drug or baby-Aspirin for your headache which could be a symptom of Hughes Syndrome?

Best wishes from Kerstin in Stockholm

[MaryF Administrator]

If you are having testing done, do get your vitamin D levels tested and also your B12 and iron plus Thyroid as often these can be out, the levels when already with an autoimmune disease. MaryF

[Manofmendip]

Hi there.

I agree with my two colleagues, Kerstin & Mary.

Dave

[ndstephens49]

No aching legs but daily headaches since childhood. Nancy

[WendyWoo50]

Well my legs really ache especially the tops. It feels as though it's deep in the muscles. It disturbs my sleep and greatly limits my ability to walk. Sometimes my legs give way, when I'm out I use a crutch to 'save me' if it gives way or a mobility scooter

I have lupus and Sjogrens too but am told they are both under control and they are not the cause.

I was told the aches are Fibromyalgia but having read up it can be due to Hughes particularly if the inr isn't high enough (3.5-4.5)

Hope this helps. X

[littlesinger1]

Hi was diagnosed by an heamotogist,getting bad rash on face and severe headaches, on low dose aspirin at the moment.

[Lure2]

I see you joined this site already in 2012. Was it a Hematologist who was specialized in autoimmun illnesses and who knows Hughes Syndrome well that diagnosed you?

Do you have any antibodies positive during these years and do you still see the same Doctor for your Hughes Syndrome?

Perhaps you need something stronger for your symptoms like anticoagulation as a low dose of Aspirin is not enouth. (I also had to take Warfarin after baby-Aspirin). Yes pain goes with this illness and if you get a Doctor who knows also SLE and Sjögrens and Thyroid-illnesses that is very positive if not necessary.

If you have a Doctor (usually a Rheumatologist) who is specialized in our autoimuun illnesses that sometimes very often go hand in hand, he/she will understand what you talk of and able to distinguish between the different illnesses and take the necessary bloodworks . That is exstremely important.

Best wishes from Kerstin in Stockholm