Madisonjan7 Posted February 6, 2018 Report Share Posted February 6, 2018 So I’m on florinef 0.1 mg and half of that at night, it has helped my low blood pressure so much and I barely get dizzy anymore but I still have problems with my heart rate going up while standing and I have noticed that while standing my legs turn blotchy purple. Keep in mind I live a very sedentary life. I’m not sure if I have PoTs but I think I do, i don’t know I’m lost. I added pics. Please do not make fun of my unpainted toes lol Quote Link to comment Share on other sites More sharing options...
DizzyGirls Posted February 7, 2018 Report Share Posted February 7, 2018 My daughter's skin does this, too. Her doctor called it livedo reticularis. Looks like the same thing. Quote Link to comment Share on other sites More sharing options...
yogini Posted February 11, 2018 Report Share Posted February 11, 2018 have you tried compression stockings? if you have low blood pressure and a doctor put you on florinef you likely have dysautonomia of some kind. Quote Link to comment Share on other sites More sharing options...
Madisonjan7 Posted February 17, 2018 Author Report Share Posted February 17, 2018 @yogini he gave me no diagnoses, he said I had low bp and postural tachycardia and that I’d “grow out of it”. Quote Link to comment Share on other sites More sharing options...
Guest KiminOrlando Posted February 17, 2018 Report Share Posted February 17, 2018 Find another doctor. I was told that 33 years ago. I didn't grow out of it. Quote Link to comment Share on other sites More sharing options...
CowardlyLion Posted February 18, 2018 Report Share Posted February 18, 2018 On 2/10/2018 at 9:15 PM, yogini said: have you tried compression stockings? if you have low blood pressure and a doctor put you on florinef you likely have dysautonomia of some kind. I was going to suggest this as well. My girlfriend has POTS and when she uses the compression stockings she feel so much better, it's remarkable. If you think you may have POTS or another form of dysautonomia, I would suggest trying to get a referral to a cardiologist or somewhere that you can get a Tilt-table test. We were lucky that the hospital she was admitted to from the ER had this test and that the nurses were so kind to her. Quote Link to comment Share on other sites More sharing options...
yogini Posted February 18, 2018 Report Share Posted February 18, 2018 Postural tachycardia is POTS. It's the same thing. Consult your doctor but compression stockings help with blood pooling in the legs. Quote Link to comment Share on other sites More sharing options...
Missy M Posted February 19, 2018 Report Share Posted February 19, 2018 It looks like my left leg. I was diagnosed with it being livido reticularis (which someone else mentioned above). Livedo reticularis is a symptom, not the name of a disease. It can be caused by many things. Since two of the known causes can be autoimmune disorders or EDS (Ehlers Danlos Syndrome), and since I have both an inherited autoimmune and suspected EDS, my doctors and I saw no need to worry about it further. That was two years ago. My livedo reiticularis is still present in that leg but faded quite a bit after I did water exercises for several months. I think the exercises benefitted my circulation. Quote Link to comment Share on other sites More sharing options...
Giftbearer Posted February 24, 2018 Report Share Posted February 24, 2018 Here's what happens to my ankles and feet, especially the right one. I don't know if this is the same thing or not. Quote Link to comment Share on other sites More sharing options...
katyroq Posted February 24, 2018 Report Share Posted February 24, 2018 On 2/19/2018 at 4:27 PM, Missy M said: It looks like my left leg. I was diagnosed with it being livido reticularis (which someone else mentioned above). Livedo reticularis is a symptom, not the name of a disease. It can be caused by many things. Since two of the known causes can be autoimmune disorders or EDS (Ehlers Danlos Syndrome), and since I have both an inherited autoimmune and suspected EDS, my doctors and I saw no need to worry about it further. That was two years ago. My livedo reiticularis is still present in that leg but faded quite a bit after I did water exercises for several months. I think the exercises benefitted my circulation I get blotchy legs too but thought it was just normal for POTS due to blood pooling. But are you suggesting perhaps there is a separate (though nothing is really separate) cause for it? I'm thinking I may have EDS so I'm wondering does the fact that I have livedo reticularis mean EDS or some other cause is more likely? I also have Reynauds, which is somewhat similar. I know that many people have that who don't have POTS though. There is no known cause for Reynauds either as far as I know. So I'm wondering if livedo reticularis is like that? Separate but often seen together? There are so many pieces to this... It's confusing Quote Link to comment Share on other sites More sharing options...
Clb75 Posted February 24, 2018 Report Share Posted February 24, 2018 I posted this in a similar post several weeks ago so forgive me if I’m repeating myself . Dr. Raj from Vanderbilt has written an article on this. He refers to it as “dependent acrocyanosis”. He states that it is due more to poor blood circulation under the skin rather than blood pooling per se. You can google his name and the term dependent acrocyanosis, and the link to the article and pictures of peoples legs come up. Quote Link to comment Share on other sites More sharing options...
Missy M Posted March 16, 2018 Report Share Posted March 16, 2018 My docs wrote off my livedo reticularis to either being the result of my inherited autoimmune disease (autoimmunes can be a commonly known cause) or my Ehlers Danlos Syndrome (another commonly known cause). One in three people with dysautonomia also have EDS (Ehlers Danlos Syndrome), so I see EDS and livedo reticularis mentioned fairly often in various dysautonomia forums. Quote Link to comment Share on other sites More sharing options...
Kboldon Posted June 17, 2020 Report Share Posted June 17, 2020 Hi, I see that this post is from 2 years ago. @Madisonjan7 Did you ever get a diagnosis for your leg? Has it improved? I have recently been diagnosed with POTS but the Cardiologist is saying that it is unlikely the cause of my leg. The Dermatologist also doesn't think it's Livedo Reticularis. Ive been having lots of digestive issues as well so I am not sure what to make of it but the leg seems to be getting more and more purple when I stand. Quote Link to comment Share on other sites More sharing options...
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