Legs turning purple

Wow I have not been on here for a while. Thanks everyone for the birthday wishes. I have a question does anyone else have problems with their legs turnng purple & sore. When i sit or stand they turn purple. If I prop them up they are fine. If I stand on them for to long my ankles start swelling. Now I had problems with DVT's in the past and that is what I am worried about. I went to the pain clinic yesterday & he said it is just the fibro. So I was really wondering if he is right or not? So please let me know if anyone else has experienced this. I been up all night. I hate this when i cannot sleep. My whole body aches & it sure did not help when he pushed on the pressure points. Thanks everyone and have a great weekend! <3

Please check in with your primary care doc, today, if possible. Maybe your pain management doc is right, but I'd want my primary care doc to know what's happening and see what he/she thinks. Good luck.

Happy Birthday Nancy !!!! Hope you had a great day. I have had a issue with my legs since I became ill. I have showed each of my doctors and all seem to think it's nothing, which is not the answer I want to hear. When our leg/legs swell up so tight and change color thats just not normal. If I am standing for mor than about 30 minutes I feel the swelling began and if I stay standing my legs changes colore. It takes a few days of me of my feet to go back to normal. If you find an answer please let me know. Hugs coming your way, Robin P.S I am going to inbox a picture of my leg , let me know if thats what yours does. Thanks :)

Fibromyalgia is a symptom of dysautonomia. It is not the cause. Dysautonomia is a dysfunctional autonomic nervous system (ANS) which is a branch of your central nervous system (CNS).
So your body is getting bad signals of what to do. This can be caused by a spinal or neck or head injury or misalignment or Ehlers Danlos Syndrome or so many other things.
Do you have tachycardia? Often with the blood pooling (purple legs) there are many other symptoms.
It is usually worsened by the immune system getting compromised (fighting off the flu or stress).
Part of the immune system is your mast cells. These mast cells can cause these symptoms. An easy way to check if it is the problem is to try a small amount of an anti-histamine. If it works, that is likely the cause of the blood pooling.
Ehlers Danlos causes the blood pooling since your blood vessels get too pliable and don't push the blood back up. There is a whole list of other causes at www.dinet.org. - especially see http://www.dinet.org/what_causes_pots.htm and http://www.dinet.org/symptoms.htm

Try to ascertain whether it guess worse when you are cold. If so, you may want to see a neurologist.

Sounds like me. I have (excuse the spelling) peuriphial vascular disease. That and the raynauds cause my legs to turn purple, legs and ankles swell, and they're painful. You need to check it with a doc, But I don't think it's from the fibro. Good luck, Charlie :)

Hello,

Thank you for responding to my problem. I looked up the web sites you had listed. I do take a antihistame every morning. I do not have tachycardia, not that I know of. I do have symptoms for th ED and a few other that was listed on the web sites. I will have to make a appointment with my regular dr. to see if he can run some test. If I find out anything I will be sure to post it. Thanks again. And hugs to you.

I agree with with the others You really should just .it all checked out. In the books that I have read about Fibromyalgia, I haven't seen anything about legs turning purple. I worry that you might be suffering from circulation problems. I, too, have had some swelling in my legs and ankles since my Fibro has gotten worse. I have to take a water pill to bring it down. But I haven't had any discoloration of the skin. I think you should get a second opinion, Nancy. You may have a vascular problem going on. Please do this soon?? Hugs!!! Laurie

No it happens when i am cold or hot. Thanks for your reply. I have seen a couple neurologist and they did the shocking in my legs . Sorry i cannot remember what it is called. Nothing showed up. Have a non hurting day. hugs!

Hi Nancy - I just emailed you on this post. I am happy that you are going to talk to your doctor about your blood tests. There is an awful lot involved in being tested for the illnesses we have. It can be overwhelming too. Just keep in mind that you are closer to getting a diagnosis and taking care of it. Feel better!! Laurie

EDS is much more common and ignored than doctors think. Doctors think that it is very rare and so we can't possibly have it. They don't even know how to test for and don't realize it causes a whole slew of other problems other than just joint hypermobility and skin and bone issues. It effects all of our organs and central nervous system so the possible symptoms are just innumerable.

I would not bother your general doctor with it too much. Mention it to him and feel it out. If he fluffs it off, move on. Don't try to convince him or ask him to learn about it. It's an uphill battle. I called the nearest geneticist and made 4 back to back appointments for me, my mom, my sister and my niece. We all went in and it was one long appointment with our family tree of genetic issues. We all four left with an HEDS diagnosis. That was the first step in our figuring out why we have had so many weird health problems for generations. Since then other family members have been diagnosed.

You can find doctors that are knowledgeable on the subject at www.ednf.org. It is worth it to travel to see one. The best are in places like Maryland and Boston. My geneticist was in Richmond VA. I live in VA on the NC border and am travelling to MD to see a doctor on the 6th that knows about EDS. They are rare. Dr Francomano in MD is the best to get a diagnosis. If you are near there, definitely go to her.

Debdrake,

I am so glad you filled me in on this. Yes I found out I have Factor V which is a blood clotting disorder and it is hereditary. My siblings won't get tested for it and mom & dad died so I have no idea which side it came from. But I did have both of my daughters tested and the oldest has it and the youngest doesn't.

But yes I will bring it up to my family physician if he knows nothing about it I will have them send me to a specialist. I live close to State College, PA. I am not even sure we have a geneticist in our area. I will have to look that up. Thank you for the info and man I hope that's not what I have. But i am going to check your dr. link above. Take care and I am so sorry that all 4 of you have it. Thats horrible. God bless you. Hugs!

If you have any medical schools with hospitals, I would ask them about a geneticist. I went to U of Michigan earlier this month where I received an HEDS diagnosis. I'm seconding everything Debdrake said about EDS. I can see that my deceased brother likely had it, and my father who is also deceased. I know my sister will end up getting evaluated too. i believe she has it to a lighter degree than I do. As Deb said, doctors think it's rare so they don't often look for it. The site she gave has a lot of info about it and also has forums that I learned a lot from.

hugs and have a good weekend.

Susan W

No, but I don’t think it’s normal. See a dr.

Oh yeah, the shocking thing. Fun right ;) ? So glad you are not hurting. I had a wonderful morning. VBetter than in many years, but of course I overdid and am wanting to crash now :(