Strange discolouration on lower legs - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Strange discolouration on lower legs

Squeezer profile image
10 Replies

A few days ago I suddenly noticed that lower legs had gone a bit purply/bluey colour but what was really strange were all the small areas, about the size of a penny or smaller, which were completely white- no colour in the skin at all. These were on the legs and feet and there must have been over twenty of them.

It wasn't Livedo Reticularis (thats there every day on arms and hands so know what that looks like).

The GP also had no idea what it was and decided to just leave it and see what happened.

Well, it disappeared after a few hours and then came back later on in the evening. It was gone the next morning and hasn't come back again as yet.

Anyone else had anything similar?

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Squeezer profile image
Squeezer
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10 Replies
MaryF profile image
MaryFAdministrator

Hi there, it does sound to me like a circulation issue? Will be interesting to see if it just goes away again, I hope the GP checked your blood pressure etc. Mary F x

CanaryDiamond10 profile image
CanaryDiamond10

Have they ruled out thromboplebitis? The blue/purple and blotchy is what alerts me. Well, a thing to rule out perhaps. I hope it doesn't ever come back, but experience tells me to be prepared. Things like that usually don't just "go away" nor do they appear for no reason. May I suggest taking a few photos so that you can bring them with to the hospital or MD's and they can be refreshed or clearly understand what kind of symptom you are having. Everybody could be on the same page that way and it could be documented to your medical file for 10 years down the line. Just a thought. Hope you feel better soon and that the symptom is not painful for you.

Squeezer profile image
Squeezer

Thank you for your help. Would this thromboplebitis make the skin itchy when touched at all?

CanaryDiamond10 profile image
CanaryDiamond10

To be honest, I do not remember itching. I do remember an irridescent perspiration emitting from the whole leg. Very cold and clamy. A dull, severe, and consant ache. No kidding it swelled twice the size of my other leg. The swelling itself was uncomfortable. I was 7 months pregnant and much more worried about my baby (the one the doctors told me I could never have) than anything else. I had never carried a baby so long. I was placed on total bedrest. My own OB/GYN was out of town and no one wanted to overstep his boundaries. They did not even place me on aspirin. They did nothing but put me on bedrest, and eventually it did subside. There were additional complications at his c-section birth but he is fine now. I was not, at that time, diagnosed with APS. Heparin or some derivitive thereof is usually the key medication for thromboplebitis A blood thinner to disolve a clot in an artery/vein. I am prone to rashes of all sorts and always have Livedo Reticularis as well, so I am aware of the difference. The rash for thrombophlebitis for me was much bolder and evident. The blue tint with white blotches and an irridescent sweat combined with the swelling was much more than the sublte pink of Livedo Reticularis. Point is, things don't appear and disappear and return for no reason. I'd call an Emergency Room and ask if this could be a symptom of thrombophlebitis and I bet they will want to see you. I'd also take photos to document the rash when it is at it's worse and time/date it and then when it is at its best and time/date it. That way it can freshen that doctors mind, as well as the other doctors who will consult, on the case. Seeing it really helps everyone to be on the same page because its difficult to verbally describe. Also, a year or ten years from now those photos may prove valuable to your medical history. We may know so much more by then.

If your GP has already seen it and sent you home, I'd take photos, see if it continues and if so call that physician back and insist on an additional workup.It seems dangerous to me to watch and see. I tend to walk on the safe side though. I wish you lots of answers soon and patience if it's a longer wait. Best of luck.

Squeezer profile image
Squeezer

It certainly sounds familiar in quite a few ways but also different in others. Sorry you had such an horrendous time of it!!

Yes, I don't like the wait and see attitude when they don't know whats what either so if (when) it comes up again then I will definitely take photos and go armed with them to a different GP in our practise.

Thanks for all your help.

Here's hoping you are well at the moment ^_^.

MrsBL profile image
MrsBL

I have had the same purple/red paatch on my lower leg for a long time now and my Rheumatologist told me that even though he has seen this before, it is associated with APS they have no idea what it is. I find that the itching drives me crazy but daily moisturising, concentrating on that area does help. Recently the red part swelled up and I was scanned for a DVT but they said it was too low down to tell. It was quite painful but then a few days later the pain disappeared, however then I started with pain in the left lung. A CT Scan was carried out but as I did not recieve any results I take it that it was al ok. Since that period of a lot of pain and since moisturising carefully the colour is diminishing an the itching has stopped.

It may not even be anything similar but just thought I would share in case it helps. Hope you feel better soon x

Squeezer profile image
Squeezer

Thank you for replying. It all helps, even if it is to exclude possibilities! If it comes up again then I'll be straight back to the GP!!

Your's actually sounds more like what my mum has and the docs have never done anything to help her with it. Hers has been constantly present for years now and is sometimes so bad that the skin splits and then takes months to heal up again.

APSmum profile image
APSmum

Hi there, I had something last year where my two little toes started turning purple. Sounds slightly different to yours. My little toes went really dark almost black which turned out to be thousands of tiny clots in my toes. I went on a special drip in hospital for a few days to clear them. The fact yours has come and gone sounds more promising. I think you are doing the right thing by getting them checked if they come back. All the best.

Squeezer profile image
Squeezer

Thank you- it must have been so scary for you. Glad it was sorted out for you in the end.

Take care,

H.

CanaryDiamond10 profile image
CanaryDiamond10

How are your hands, feet and ankels Squeezer? Is the swelling, rash and pain still appearing and disappearing for no apparent reason? In addition to time dated photos, it might be a good idea for you to document your symptoms in a daily journal. I've been keeping one for 10 years and I can't count the times it has corrected my memory. When your MD asks, how often does this occur? You can look it up. When he asks duration of it, you can look it up. Doctors are so documentation oriented that you will be less likely to be debated if they see you documented your symptoms verbally and photographically at the time it happens. It seems to me that one must wait a long time to be seen there in England. A rash such as yours could come and go several times revealing a pattern the MD would not see. But your journal would reveal it. It only takes 10 minutes or so a day. I rate my pain on a 1-10 scale. For you, I'd add mobility on the same scale. Mental attitude (good or bad day). Any new symtoms or theories and questions I want to be sure to ask. Write the answers in that day's journal so as not to be forgotten. This takes less than 10 minutes and reveals so much as a whole. It's saved my memory so many times my MD asks all her chronic pain patients to keep a "pain journal" now. It not only helps you it helps the MD. I do hope that rash hasn't reappeared. Try to keep salt, even sea salt, out of your diet. If it is hot where you are, get in air conditioning or hop into a room temperature bath. Gently, move your toes, ankles, fingers and wrists under the water say 20-30 times and then just let them float a little while. If you do not feel pain do it again. The more you can get yourself to do it without pain the less the pain will be. The only thing to remember is - if it makes it hurt STOP. Just let your limbs float in total relaxation. I learned that in aquatherapy for swelled hands/feet (osteoarthritis). A pool is better than your tub unless you have a soaking tub, which is a very deep bath tub (heaven). I hope you are still on the mend. I couldn't help thinking about you today. Are you positive for APS? Keep the site posted.

apsfa.org This is a an American link for APS that is very informative and will lead you to other links of information for your evening reading. Send what you feel is pertinent to your MD before your appointment so that the MD can consult whomever he needs to. That way he will be better educated for your appointment. Be sure to keep a copy in your journal for your future reference. (or keep the link). Smiles, hugs and the best of luck on your journey.

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