I wrote a post like this a while back but it’s getting worse,
This is what my legs & toes looked like before I got in the shower just now.
My left toes are much more effected than my right. They are blue & numb. Sometimes I can’t feel my feet so I drag them, & find walking extremely difficult. I struggle badly out in the cold, I’ve been in the house all day so I’m surprised I’m like this !
It gets to the point where my knees & thighs burn, getting in the shower & trying to get warm doesn’t make the mottled skin any better.
I’ve noticed that the cold literally goes straight through to the bone. (Bone chillingly cold) my ankles swell, my legs hurt to touch, my calf aches my toes go blue my nail beds are blue, fingernails too.
I layer up during the day, but still feel like my body is cold, I’m wondering if my heart issues have anything to do with this coldness?!
The mottled skin goes up to my belly button now. Normally it’s just my below my waist. hopefully these images will help when I see my GP on Monday. I need to address this issue promptly because I’m finding it very hard to cope with. Any tips or tricks would be great-fully appreciated. Many thanks x
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LauraMk30
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Hello again laura....yes, your photos & descrips are v similar to mine...living with this is no picnic...Many of us have Livedo reticularis - i find mine is a good indicator of how active inflammatory process is at the mo: the bolder the mottled pattern, the more poorly i am...your photos will help with clinical diagnosis
the other day i posted a reply about this on someone elses’s thread...which got a lot of great replies from other forum friends...i hope you don’t mind me pasting my reply in here...the actual links are with my original reply in that thread, of course, which you can reach via this link:
just looking at your photo & reading your post & replies hurts...i am truly feeling your pain...and my feet & legs look just like your photo (my right leg/foot suffers more extremely from the red phase of my daily 24/7 freezing/burning cycle). My hands & head also suffer with the same freezing/burning symptoms cycle...so all my extremities are involved: it’s not a fun party!
My SLE was infant onset and i have the usual collection of comorbidities including early onset small fibre neuropathy/peripheral neuropathy + small vessel vasculitis + sjogrens...and my daily 24/7 freezing/burning cycle is diagnosed with early onset raynauds simultaneous with erythromelalgia & also in my worst forefoot i have CRPS (complex regional pain syndrome...which has a lot in common with erythromelalgia)
Here is a link to the most official & comprehensive info i’ve found on erythromelalgia (you’ll find lupus & peripheral neuropathy in the Related Disorders section...and, of course raynauds is covered too). This link is very good on diagnosis as well as both treatment options & self help techniques:
rarediseases.org/rare-disea...
Otherwise, have you posted your question on the HealthUnlocked Scleroderma & Raynauds UK (SRUK) forum? This forum has helped me a lot:
healthunlocked.com/sruk
Rheumatology thinks i have systemic sclerosus in my mix of overlapping diagnoses, and my impression is that this can result in simultaneous Raynauds + erythromelagia....the SRUK website also has good info on erythromelalgia:
sruk.co.uk/scleroderma/eryt...
Hope something in there helps. Maybe you’ll ask your consultant about the possibilty you could be living with simultaneous raynauds & Erythromelalgia.... Erythromelalgia is considered a rare & unusual condition, and is not well understood by the medical fraternity...many consultants are not well informed about diagnosing & treating it...especially when it occurs simultaneous with raynauds, but, over the years, i have learned how to lifestyle manage this nightmare combination...and now rheumatology has me trying daily low dose losartan which will hopefully damp down both the raynauds & the erythromelalgia...my erythromelalgia burning flared terribly when i trialled daily nifedipine for my raynauds, which is why rheumatology is postponing a trial on IV illoprost
I have very similar problems Laura and your photos of discolouration and mottling look very similar to mine. I haven't been able to take meds for it because my blood pressure is very low. It seems to be year round now.
I can't add anything to Coco's comprehensive reply except to say you have my sympathies x
I’m so glad you & others understand!! (The bolder the mottled pattern the more poorly you are) Right I will keep that in mind, I too look at it that way, I have been feeling like crap the last few days, feels like I’m running on empty! My recent blood results indicated that CRP levels were highly elevated? Nothing was explained in depth so I’m not sure what that means? I’m really glad to hear that my photos will help, the GP will have no choice but too take me seriously now!!
I took some time to read the link, & erythromelalgia is news too me, but it states a lot of the symptoms I suffer with, I’ve printed it off to show my doctor. I think they are clueless & become neglectful because they have no idea how to help, I’m really tired of how negative they are towards new or rare conditions. I was told last year that I was at low risk for a blood clot, I couldn’t possibly have one due to my age. But I had all the symptoms. I had to have 4 Appointments to prove I was struggling, I had never heard of a D-Dimer blood tests & it took some perseverance but I was finally given one. The young doctor at the time made it perfectly clear that I was fine & basically I was having unnecessary anxiety over nothing, I know my body & I knew something was wrong, I was given a prescription but wasn’t allowed to take a blood thinner until I received a call from the hospital, that’s if I’d get a call she said. She was adamant that it was all in my head even though my leg showed visible signs.
So for 10 minuets I was ridiculed & patronised & I went there for reassurance, & a little help, but I received the call, & the doctor explained that my d-dimer results were seriously high 860? I had to be admitted, I was put on blood thinners, the doctor on the phone showed so much empathy & understanding & really did care about my wellbeing. Which was really nice & not something I’m used to. I was then referred to ACU where I had a CT contrast scan of my lungs to see if I was having a PE. They didn’t find a clot in my lungs thankfully but they did find multiple nodules, till this day I do not know what that means & as far as I am aware they are still there.
I guess what I’m trying to say is, I know I need to change my Gp but I have searched for a new surgery & the ones closest are not excepting any new patients. So I’m stuck with the one i have, so..... with them being so condensing how can I approach them with this?
I’m dreading going there...
I’m due to see PALS, regards to my horrible Oral Surgeon Appointment. But who do I speak to if my GP decides that they won’t be able to help me? It’s not that they can’t they just don’t..
I was meant to be rested for APS last year, I also have been waiting to see a Cardiologist, I have written a list of unresolved issues that they doctors haven’t addressed.
I feel a little out of my comfort zone as I’m being quite direct now, but I suppose I cannot be meek & shy when it comes to getting things done. I explained to my GP that I have all these strange symptoms no diagnosis & it’s worrisome with all these abnormal findings & yet I’m still invisible.
I love being outside, fresh air clears my mind. But now I’m quite confined in my house but still get severely cold either way.
Unlike you Hun you have knowledge & understanding of each condition, the way you name different conditions shows how well educated you are on your body & how doctors have helped along the way. I want to be able to be like that, knowing is better than not knowing. (I mean this all in a good way)
I guess I’m in a situation where I have a great dentist, but I need a great doctor, or consultant too. I need help big time. I’ve never like the cold but it’s never effected me this much, I’ve had bad skin complaints but never to the point where my body is literally looks like a doily 😂 & I’m aching to the bone. The veins on my left leg are visible & look rather vile. I’m aware of how I felt prior to the previous blood clot to how I feel now and it’s not far off.
I guess my doctors have spent umpteen amount of time trying to convince me that I’m fine & healthy but instead they should of spent time investigating why I’ve never got better & literally go above & beyond to get the answers I need, I have no quality of life, it’s daunting yet extremely lonely being the only one wanting to help myself, they have all the power & yet the choose to deny me of everything.
Sorry I’m rambling & completely gone off the subject...
You sure have been through the wars Hun ! There is a hell of a lot of good information in your post that I have read & understood quite naturally I hope my GP will have some mercy on me when I hand it to her.
Thank you so much for all the valuable information. Sorry again for my rambling x
I ❤️ the way you’re looking at all this and i think you are already getting the system working for you sooner than i did...took me nearly 40 years to even begin to get the nhs to look harder for the causes underlying all my secondary diagnoses! So, keep doing what you’re doing: it’s paying off already & will continue to. 7 years ago i’d never even heard of raynauds, let alone lupus etc! Am so glad you’re here sharing these details of your experiences: these will be helping LOADS of people, including those who read and don’t actually participate. Take care 😘🍀😘🍀
Hi, I'm new and not sure if I have lupus. But for about a year possibly a couple of years now, I've noticed mottled patterns on both my upper arms, more towards the back of them. Sometimes the skin goes almost purply but usually it's a red mottled pattern. My skin in both areas where mottling is, is always cold to the touch and is also just below my fibro tender point. I also had the strange experience a few weeks ago of my right hand and forearm suddenly going very hot and red and fingers were incredibly painful, left arm was normal. That symptom lasted about an hour and then my lymph nodes swelled up yet again and ended up with ear infection in both ears and right eardrum ruptured. Oh and I got my usual red rash come up on my chest, cheeks and nose. I'm still recovering from the ear infections. Sorry, I've gone off on a tangent. Yes, I have the mottled skin and in the last week, my hands are freezing, I just can't seem to warm them up. GP is stumped by all my symptoms over the last year
Me too. I have Sjögren’s rather than Lupus but it’s just as commonly associated. No solutions but I think I may have overlapping seronegative APS although the vascular doctor I see says it’s all neuropathy related in my case. However this has never actually been confirmed - it’s just presumed and livedo is on my list of diagnosed conditions as a rheumy tested me for it (I had to undress and hang about behind a curtain for 5-10 minutes?!). I’m Hypothyroid so I think the two autoimmune diseases are often associated with sticky blood, pooling and poor circulation. X
I do not have exactly what you have, but I do understand how upsetting it is. My skin....when I was younger I wondered how some older people ended up with the messed up skin....here I am...I HATE it....sometimes it actually scares me....
According to The Lupus Encyclopedia, purple/blue skin can occur due to many different factors such as: UV light exposure, extreme temperatures changes and Raynaud’s phenomenon. Raynaud’s phenomenon is the most common problem that occurs in the cardiovascular system of people who have SLE, appearing in approximately one-third of them. This can cause fingers and toes to become pale and/or dark purple. This can also cause pain and a tingling sensation.
У меня все те же вещи в течение 10 лет, я сам из России живу в Петербурге, врачи разводили руки. потратил много денег на допплер, мрт, тесты на антифосфолиды, системную красную волчанку и многое другое. Один тест на одну границу был воронковидным антикоагулянтом. На холоде все ужасно, руки и ноги синие, и все покрыто ногой выше ног. Диагноз нет.
извините, я должен перевести все. то, что у вас на фотографии, это то же самое, что у меня есть. это не связано с сердцем. Я представил множество тестов и экзаменов (включая проверку сердца), все тесты являются нормальными, за исключением однолучевого антитела. Я очень много говорил с врачами и читал в Интернете. Я связываю свою чистую печень с хроническим тонзиллитом. еще раз извините за перевод.
sorry, I have to translate everything. then what do you have in the photo is the same thing I have. it is not connected with the heart. I submitted a lot of tests and examinations (including heart check), all tests are normal except for one - lupus antibody. I talked to doctors very much and read on the Internet. I link my net liver with chronic tonsillitis. once again sorry for the translation.
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