LUPUS UK
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Questions about lupus

Questions about lupus

Hello my name is Katie

I was told I have a connitive tissue disease and they are pretty sure it's SLE . I am 27yrs old and found this out in March of this year. I have also been told I have fibromyalgia, and neuropathy. All of my joints hurt and my skin hurts to touch . I keep telling my doctors about the skin hurting and the look at me like I'm crazy . My feet and fingers swell and they say it also have cts . I am on a cocktail of meds including plaquenil, quinacrine, topamax, buspirone, tramadol, Percocet, prednisone, zanaflex, and a baby aspirin everyday. I just find this ridiculous . I'm still in pain so this all doesn't seem to be working . I also found out that my b-6 is 400 and b-12 is 3100 both being almost 4 times what they are supposed to be . I'm not taking any supplements and my doctors say well we have never heard of someone's B levels being so high so we're not sure what to do. I'm New to all of this and am looking for some help . I feel very lost . I went to the foot doctor for some ankle pain then found out all of this . Any feedback would be greatly appreciated .

Thank you

4 Replies
oldestnewest

Hi,

Sorry your having these horrid problems.

I get fluctuating issues whereby touching areas is v painful (not classic FM areas). I wonder if you could tell me if this is similar to your connective tissues and what tests did you have ?

I also get swelling of fingers & feet.

Sorry my reply is a question rather than helpful to you.

Xx

Reply

Hello,

Mine is more of an all over pain . Mainly my legs, arms,and rib areas . I have given over 160 tubes of blood this year so I thin they checked just about everything lol . I have an ANA of 320 with speckled pattern.

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I also have Raynaud's Disease. Not sure if this has anything to do with the autoimmune issue.

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Hi, I have EDS and I have a high ANA and B12 over the maximum (>1500) but docs don't seem interested when it is too high. I wish I could help. :-/ x

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