I’ve got APS and since being diagnosed with it my circulation is very poor and both legs (below the knees have discoloured and are almost black). My problem (amongst many) I do get cellulitis, and at the moment I do have a small patch of the top layer of skin open which is dressed daily. My problem now is that I’ve stared to get small water blisters especially the right leg which I have had many DVT’s. What would cause this? My legs are creamed (as I have pointed out) but as I have many allergies, I can only use pure Shea butter, nothing added, (it’s straight from the tree). Also I cannot use any dressings that you would usaslly putbon open wounds, I can only use cotton pads and tubifast to keep the pads in place.
Can anyone help?
Thank you
Teanna
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Teanna
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I know you live in England and Dr Cohen put you on Rivaroxaban but before you were on the higher INR so probably the anticoagulation is not enough for your need.
You and your daughter who also has APS have looked for a Specialist and as you live in England it should be too difficult as Dr Cohen has not been very helpfull you have said.
I think you should have someone looking at your legs as soon as possible. I wish you Good Luck also to find a Specialist for your APS and Thyroid-issues (a Specialist of autoimmun illnesses knows they go together also with Sjögrens). I know you have had eye-problems also.
My best wishes to you and your daughter ! You must be happy for your grandchild.
Hope you had a lovely mother’s day, I had a lovely one.
My daughter is still having trouble with her doctors regarding APS, but as she lives quite far from me she does not get the same treatment as I have with Dr Cohen, and it worries me what could happen to her. She has even asked for a second opinion but with no luck.
I’m still waiting to have my hand done, I’m seeing the surgeon on the 24th of this month. So fingers cross because I can no longer grip at all. As regards to the leg, it is worrying, But I feel like I’m pestering my gp all the time, so I tend to try or look up things, but I’ve not come across with water blisters.
Hi I also cant use any sticky form of dressing - I come out in huge water blisters. I use gauze/cotton wool & tubi grip if I have to cover a wound, if its on a long time, I also react.
So maybe this is why your skin is blistering?
I also get blisters to any insect bites and these can be huge that I can't see the actual bite.
Can only share that I react the same and cant give you any advice to stop or heal the blisters. Worth talking to the nurse or GP?
I never put anything that’s got any that’s got a sticky back. I had a patch test done (especially medical, cream, antibiotics, food etc). I can’t even use E45. All creams, shampoos, soap, elastic, latex even cosmetics I reacted too. I have spent thousands of pound, literally, to find alternatives. Luckily enough a friend of mine bought some pure Shea butter straight from the tree, and that has been a god send. I have found a place in London that sell it. As for soaps, shampoos, and creams, I eventually found alternatives, but it costs me a fortune every week. I can’t claim nothing for it, so three quarters of my money goes on my creams etc.
It’s strange how one minute you can use something, then the next time, I can become allergic to it. I do carry a epi pen just incase.
So it’s been a downhill struggle especially going from being fit, ate well, to now unfit and struggle to be positive. There are no groups that I could go to (they stopped them 4yrs ago). Now, although my carer takes me to the shops, no activities are around my area . But then again, while I’m waiting to see if they will operate on my arm, (I’ll know by tomorrow), I can’t to much at the moment.
Hi, are you optimal for your anticoagulation? Also has your Thyroid been adequately investigated beyond the one size fits all faulty TSH test? The reason I ask is that the Thyroid if underactive definitely has a knock on effect on circulation to the skin. The sort of tests I do for mine are like this: TSH, FT4, FT3, TT4, Thyroid Peroxidase Antibodies,Thyroglobulin Antibodies, Ferritin ,Folate, Vitamin B12 (NOT
I’m already on folate, and I’m due for a blood test next week but they only test the main 2, not the other tests that I would like them to. My blood test forms come to me when my carer collects my blister packs monthly and the form is included, so I cannot change nor ask them to test for anything else. As you know, I’ve not had a great time with help with my medical problems, and what scares me that one day things could be to late or irreversible. It’s taken 16mths to get to see an orthopaedic surgeon for my hand which now effects the whole arm. Not only that, I’m confused, when I had the nerve induction test done and the doctor handed me the leaflet about my condition (Ulnar neauropathy) it tells you NOT to use the hand, I questioned this with the physiotherapist whom referred me to the doctor, he told me to use it because the damage can’t get no worse. So who do I take notice of???
One day I might know what’s exactly wrong with me, but then again things had gone on so long, would I want to know, (if you know what I mean).
I’m so thankful for all your opinions, I would have gone mad by now.
Also as you are clearly so unwell, do seek urgent medical attention, they can't do the tests I suggest, unfortunately most labs are not set up to do them, hence the private companies. However there might also be something else going on. MaryF
If the legs are very edematous... sometimes the water has no where else to go so pushes further creating blisters. Can be sign of heart congestion: Please ring your physician maybe he can add something to decrease the water being pushed? Best of wishes, I hope he gives you some relief.
I am on water tablets daily, but I must admit I don’t always take them as I feel that I don’t need them if my legs are not swollen. (I don’t like to take any medication if I don’t need them). Maybe if I take them daily the water blisters may subside.
Thank you very much for your reply, it’s a real help.
When they put you on them what was their explanation of why and didn’t they educate you how/ when you should take them. They should have. Not judging just hoping they did the right thing!
I’ve been on water tablets for over 25yrs. Originally I kept retaining water after my first child, and worked. And I’ve been off & on them since. I suffer a lot with cellulitis, so my legs do swell quite a bit. But if i have no swelling nor bloated I tend to come of them because they do nothing for me, until the next time I swell up. I found if I took them all of the time, my body became immune to them and they would stop working. So with most of my meds I take when needed unless it’s the ones I have to take, Riveroxoban, and the thyroxine. I do take morphine daily as my back is in a bad way, so all together, as I said, I take when needed. It’s a vicious circle with all my medical problems.
I can’t an appointment to see my GP for at least another 3 weeks. Although I’ve got APS and not lupus (my mother has lupus), can you tell me if it or could be a part of lupus? Or something completely different?
No one can diagnose you unless you see a doctor. Please contact your GP and ask for an emergency appointment. It is unacceptable not to be given an appointment for a month.
If you have had cellulitis, you need to see your doctor. Don't take no for an answer. The receptionists are not doctors and you need to see a doctor who can diagnose your condition. IF this is cellulitis, you require treatment.
Swelling of the legs can be water retention and this needs investigation as to why you are retaining water. If it is lymph-oedema, this is also diagnosis and treatment.
The receptionist are a nightmare, they choose what’s urgent or not. Even down to my blood tests, they send the forms out and give them to my Phamacist and they give me the form when my medication is ready monthly. I have asked for an appointment over the phone, but there still is a waiting list. So I’m waiting for a call now but how long I don’t know.
Teanna, I know exactly what you mean. My former receptionists were a nightmare. I recall that following my appointment, my GP said she wanted to see me the following week. I explained to the receptionist who, was not only unhelpful, but rude. Fortunately, my GP appeared and instructed the receptionist to give me an appointment!
It's called "a little bit of power . . "
All you can do is to be polite and ask for an appointment . . . it seems to me that you are polite and taken advantage of by these receptionists. If you have a sympathetic GP, explain and they can instruct the receptionists to give you an appointment.
A friend of mine walked into the surgery and asked for an appointment. They were told they could see the doctor in one month's time. My friend replied that he could be dead by then! He was given an appointment!
I hope you have better news. You deserve better than the way you are being treated.
Sorry this is gappening to you. I hope you have your INR checked and your treatment strengthened. And have your heart checked....fluid in lower lefs can be a sign of hear trouble.
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APS Symptoms
Confused
Wondering if this is my problem
end of my tether
