louloutinks Posted February 28, 2011 Report Share Posted February 28, 2011 Hi all agian,just wanted to ask if blood pooling looks the same as lupus erythema on the legs. After being dx'd, I have really taken a good look at ALL my issues and so have been googling - not such a great idea I know but I am not sure if I have come upon an idea.8 years ago I went to Dubai for 2 weeks, and within the first week I was covered with hives - like a nettle rash. It then progressed into a huge odd rash over my face and round patches all over my body and I was very unwell. The paramedics at the hospital did not know what it was.Since then, I cannot sit in the sun for long - I used to worship the sun - but now I come out in rashes if I sit in the sun. Now this is around the time I felt some differences with my body, like getting stiffer esp at ankles...I have always had joint pains due to ehlers danlos. I have since had this rash on my face a few times with swollen glands and mouth ulcers and was so ill I had to stay at my mums so she could take care of my son. The docs saw the rash in the last stage and they said it may be perioral dermatitis. I then started to get a rash on my feet about this time too. The dcos were not sure but in the end said it was dischidrotic excema but the creams made no difference.The skin on top and just below my ankles has become extremley thickened - so much so that I can pull at it and it will stay stuck out. The right ankles skin will also have a purple ring and the centre will dry up. The right ankle has gone purple and swelled right up on two occasions. I also had tiny red dots appear on my legs but they go but come back. I also have hundreds of brown dots on my legs if I stand for any time or am cold (which is more than not).Get neuralgia in my legs - burning, weakness, shooting pains. My ankles and legs are mega stiff in the morning and can be very painful. And what I thought was blood pooling looks like erythema.My hands have got so old, knottred and thick and they also swell up and a red/purple rash is present in between my finger joints. I think I also have raynauds my hands are freezing and go white in patches - almost a greeny white on the palms.They will then go bright pink with loads of white tiny blotches under the surface. My hair thins out in patches then grows back again.I get a net like purple/brown rash on my feet and legs and recently I have noticed I am ghetting a rash on my arms that is either circular or nearly circular but white in the middle. I get red patches on my face for no reason. Swollen glands for no reason and it makes it hard to swallow. I am sure I get chilblains in my toes - it used to be in just the right foot - I thought I must have broken my toes and they just were playing up and then it started in my left foot too so obviously not a break.I also have stomach issues, POTS and all that fun stuff!Get issues with hearing. Weight gain and loss for no reason.Severe fatigue - some days better than others.Dry eyes and conjunctival ulcers. Please can anyone on here enlighten me if they know about lupus or if they can help me with this. Quote Link to comment Share on other sites More sharing options...
louloutinks Posted February 28, 2011 Author Report Share Posted February 28, 2011 Also have severe constipation, lump comes up in right elbow and terrible headaches daily with flare ups. I also have BP issues. Really low 37/30,low, normal, and high.Why the heck did I not put this all together before and go see the doc. Quote Link to comment Share on other sites More sharing options...
sandymbme Posted February 28, 2011 Report Share Posted February 28, 2011 Have you looked into porphyria? It is another condition that can cause skin issues with sun exposure. Just a thought!Sandy Quote Link to comment Share on other sites More sharing options...
louloutinks Posted February 28, 2011 Author Report Share Posted February 28, 2011 Hi SandyHave just looked at that and it doesn't seem like that. I have read the lupus site and been through all the bits and it seems like a lightbulb moment!Not sure if you can have EDS and lupus? Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted February 28, 2011 Report Share Posted February 28, 2011 Dr. Francomano told me that people with EDS and other collagen defects seem, in her opinion, to be more likely to get autoimmune diseases. Quote Link to comment Share on other sites More sharing options...
louloutinks Posted February 28, 2011 Author Report Share Posted February 28, 2011 It seems that since 2001 I have just gone really down hill and the rashes I get look so like the lupus rash.This is probably the wrong place to ask but you never know - someone may have it as well as pots!!! Quote Link to comment Share on other sites More sharing options...
friday7 Posted February 28, 2011 Report Share Posted February 28, 2011 Well for the first part, blood pooling looking the same as lupus erythema on the legs. I can't say for sure since I odn't know Lupus that well, but what you seem to be talking about is something that is on the skin and stays there.With the blood pooling, My feet look normal and then when I stand too long they will start to get red then maybe blueish and mottled in color.But as soon as I sit and lift my feet they return to normal.AS for the other stuff.Have you seen anyone since they first said it was dischidrotic excema? Have you gotten a second opinion, and have you seen anyone lately since more symptoms are buliding up? Maybe you have more info for them now that may help in a diagnosis.Since it happened right after going to Dubai I'm wondering if it's something you caught there. What have your doctors tested you for, if anything? Have you ever been tested for Lupus?Sorry I can't be of much help. I hope you find out what's going on. Quote Link to comment Share on other sites More sharing options...
louloutinks Posted March 2, 2011 Author Report Share Posted March 2, 2011 Hi Friday,I have taken some pics and am seeing the doc today.I did not see anyone about it after I came back from Dubai. I did go when the rash came back and they said they wasn't sure, siad it could be acne, said it could be perioral dermatitis and gave me liquid antibiotics and that was that. As for the dischidrotic eczema, I went back a few times as nothing was helping it so gave up in the end. Thing is I have had these symptoms since 2001 and what I thought was blood pooling, i have had that for years and called my self corned beef legs. However for the past few years it is becoming darker, more frequent and more distinct. Thing is, when I went to London UCLH, I didn't think to mention any of this as I didn't think it was related. I dont tend to visit the docs much to be honest when I get things and Ihave never thought that skin rashes and joint pains etc etc could be linked!I know in Dubai I had heat rash and urticaria and then I had the other blotchy rash like pooling too.Hopefully my doc may be able to tell me from the pics what all these odd things are Quote Link to comment Share on other sites More sharing options...
louloutinks Posted March 3, 2011 Author Report Share Posted March 3, 2011 Went to the docs yesterday and he sent me for ANF and kidney function test, and rheumatic screen. The rash could be levido reticularis or sle.He took my BP supine and standing and needless to say HR went up and BP went down!Since they recieved the diagnosis letter from UCLH they are taking me seriously at last!!!Get the blood results back on monday and am really hoping it is not lupus Quote Link to comment Share on other sites More sharing options...
Noreen Posted March 3, 2011 Report Share Posted March 3, 2011 Livedico reticularis occurs with APS - antiphosolipid syndrome and can occur with Ehler Danlos. Getting a lupus dx is not clear cut - there are many criteria. Any autoimmune disease dx usually takes a while to get a firm diagnosis.Try to relax and not worry about it. Sufficient unto the day are the troubles thereof and all that. Stressing out about the tests will only make the dysautonomia monster rear up and bite. Quote Link to comment Share on other sites More sharing options...
friday7 Posted March 3, 2011 Report Share Posted March 3, 2011 Glad to hear your getting some help with this. Hopefully it will be something easily treatable. Quote Link to comment Share on other sites More sharing options...
iheartcats Posted March 3, 2011 Report Share Posted March 3, 2011 I have Livedo reticularis and no one knows why. They say sometimes it just 'is' so I get the purple ugly stuff on my arms. I hate it!It does show up with EDS, which I'm supposed to see a geneticist for when I can. I think if I have EDS, it's mild, though, and they don't think there's much they can do if it is. I just have to deal with the Livedo reticularis. Quote Link to comment Share on other sites More sharing options...
louloutinks Posted March 4, 2011 Author Report Share Posted March 4, 2011 Am hoping that is not lupus. I can see the likeness to livido on my arms and legs, it is just the other rashes I get that make me concerned.Am keeping everything crossed for Monday lol! Quote Link to comment Share on other sites More sharing options...
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