Has anyone had this diagnosed? My Drs, consultants & podiatrist have been muttering about this due to the purple my forefeet & toes go when I sit &/or stand. They've been observing this for years now. Above, the forefeet are a sort of grey-blue, and, looking at the soles of my feet & the bulk of my toes this colouring is a deeper purple. These really quite horrid colours usually fade away when I get moving around. My hands & fingers have a less vivid version of this too.
I have only a little edema/swelling with my version of this, but my constant peripheral neuropathy numbness increases by several degrees with the purple-ishness. I've had numb forefeet & toes for so many decades that I've settled in to taking all this in my stride (no pun intended)...but am prepping for my next rheumatology clinic and thought I'd check in with you all...to see who is managing something like this...and what they think it's down to
Of course, my raynauds is also involved in this purple colouring too...I have a 24/7 cycle of erythromelalgia burning simultaneous with my raynauds chilling, but the purple/blue of the so-called blood pooling/venous insufficiency happens at all points of this EM/RP daily cycle, regardless of surrounding temperature. I'm being "watched" for vasculitis at the tip top lupus & vasculitis rheumatology clinic I attend regularly...am especially prone to vasculitis rashes on the skin covering the more bone-y parts of my legs & feet. My blood pressure tends to be at the very low end of normal range (falling enough to upset the nurses during recoveries after sedation or general anaesthetic...of course, they have me wearing those stockings)
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I have a similar problem with my feet. They are constantly cold, even in the summer, and if I sit too long, the soles of my feet turn deep purple and the top of my toes turn blue-ish/grey. A bit disturbing, but I don't get any pain, numbness or tingling with it. Like you, If i flex my toes for a bit or massage my feet for a few seconds the normal colour returns. I don't know what the cause is; I haven't been diagnosed with vasculitis or Raynaud's (but keeping an eye on symptoms). I haven't asked my doctors about this, so I am interested in what yours will say.
Thanks Bebe. That's helpful & interesting. Hope you'll let me know how you get on with this
At my sle (re)diagnosis 4 years ago, the chief rheumatologist of our lupus clinic said: so long as this complex of vascular problems "changes" relatively responsively to lifestyle management eg. Getting moving, (i.e. Behaves as I've described mine does in the header to this thread), there is no real need for urgent treatment. Hen she began to develop my treatment plan.
My impression is that my oral sle meds don't actually seem to be "reducing" my tendency to this "blood pooling/venous insufficiency" problem on a 24/7 basis...anymore than they are reducing my simultaneous raynauds & erythromelalgia.....BUT, i choose to imagine that what my oral sle meds are actually doing, is slowing the progression of the damage that brought about both the complex of blood pooling/venous insufficiency + the EM/RP problems....until I started daily hydroxy+myco+amitrip (+ pred tapers as required up to 3x per year) this complex seemed to be getting worse. Now this complex seems to be maintaining the levels it was at 4 years ago
Drs have observed that this complex of issues is due to my infant onset lupus going without daily systemic prescription treatment until I turned 57....apparently the blood pooling/venous insufficiency/vasculitis rashes aspect of these issues hit me at "an early age"....whereas "normally" this aspect affects older people....e.g. although I've experienced the raynauds cycle of white to purple to red since I was tiny + many other typically lupus multisystem symptoms, then the peripheral neuropathy got bad when I hit 21, then there was early menopause, then the simultaneous erythromelalgia cycle of red burning became chronic around the time I turned 50 just over 10 years ago.....and the blood pooling/venous insufficiency symptoms became unignorably chronic 24/7 about the time I turned 54 (8 years ago)....whatever, since starting daily systemic meds 4 years ago, this whole complex doesn't seem to have stopped changing relatively responsively.....meanwhile I've concentrated on talking to consultants about urgent more problematic symptoms. But now I'm ready to find out more about this complex
We'll see what replies I get here...am thinking probably worth posting this on the HU raynauds & scleroderma forum + the vasculitis forum
I have the same problem with blood pooling as you in my feet and legs. I've tended to think it's caused by Raynauds as my doctors over the years haven't been able to explain it. I too have low blood pressure which could be linked. I'll be interested in what your Rheumy says. Good luck for when you go. X
Thanks v much misty...but sorry we have this in common....have just posted more details above in my reply to Bebe...would be v interested if anything in those details rings a bell with you. Am particularly interested in differentiating between the elements involved in this complex of symptoms as I know it:
Raynauds
Simultaneous erythromelalgia
Peripheral neuropathy
Vasculitic rashes
Blood pooling/venous insufficiency
Relatively low blood pressure
My impression is that this is all part of the classic progression of connective tissue disorders...but so far I haven't encountered other patients who have gotten into analysing these component conditions...I.e. Compared & contrasted which issue is behaving how. Probably a bit OCD of me to feel the need to differentiate between these components...but analysing my stuff this way has helped me better understand & communicate more effectively about my other chronic multisystem issues....and now I'm hoping this sort of analysis will help me discuss this more clearly & concisely with rheumatology in sept
I do agree with you that your SLE meds are slowing/ preventing damage despite not stopping symptoms.
I find the colour goes back into my legs and feet quickly if they are raised . I had this problem well before developing peripheral neuropathy symptoms so have just thought it an extra feature of Raynauds. Will be interesting what other replies you get on the other forums. Take CareX
Thanks again: vvv helpful. Your point re our meds is so important!!!👍👏
And: me too: snap: back 10-ish years ago when this complex of symptoms shifted into top gear, I'd begun to get the impression my Drs & podiatrist were encouraging me to think of blood pooling as being part of my raynauds, and related to "ageing" ...but hey I was only in my early 50s...not exactly properly "old" yet , and also my blood pooled regardless of which stage of cycle my raynauds was in (the typical white/blue/red cycle)...so, there was something vvv patronising about their encouragement which made me suspect there probably was more to my blood pooling than just raynauds...so, I began to observe the whole complex of symptoms I was experiencing more closely, in order to differentiate the elements involved....as I have in this thread..Truly, I wasn't in need of patronising reassurance about this complex of symptoms: what I personally needed was objective specialist information so that I could rationalise my situation...and so far none of the raynauds info I've found lists blood pooling as a symptom! Well, whatever, back then, 4 years ago, my lupus was re diagnosed....after that it didn't take me long to realise that, duh: I've had raynauds all my life, but my blood pooling only got going in my early 50s when my multisystem symptoms became severe enough to result in my lupus re-diagnosis. Since that point, it's taken me 4 years of understanding my health issues generally to get to the point that I am now: capable of phrasing & posting this question the way I have here now...in order to finally ask my Drs to discuss this subject with me objectively
And: Yes, legs/feet raising can also help relieve or 'reboot' the blood pooling aspect of my version of this symptom complex (but not the RP etc of course)...but only up to a point...because my blood pooling happens 24/7: at the mo, am more mobile than I've been for many years (mainly thanks to my lupus meds), so it's not easy to figure out a practical way of living with my legs/feet up...but fortunately simply moving about also 'reboots' my blood pooling. So, basically, i manage this pooling via a combo of raising+massaging+activity....
Am v glad you've joined in this discussion! Thanks again
Barnclown Is there any photo of V rashes to share? Sadly, I agree that these are probably only too common. There ought be a better treatment for these as I doubt having these symptoms probably mean that your disease is still active if only slowed by your treatment. I would personally doubt that you will have active V given the regular treatment if you haven't had V in your life, already? Have you tried functional medicine dr for holistic / dietary advice? I believe there's limit in Rheumatology and the way they classify different diseases. There are so many cross-over symptoms..I understand where you are coming from and that's partly why our "stress level" is higher /quality of life is poorer. Having these symptoms is giving you more stress.
Thanks lancrose: we're on the same wavelength: all my Drs & alternative therapists tell me that my lifestyle management started so early & has been so concerted & conscientious that it v likely has slowed the progressive damage caused by my version of infant onset lupus going without daily systemic prescription lupus meds until 4 years ago (yes I did receive appropriate prescription meds during emergency treatment over the years, but Drs never spotted the sle involved in these emergencies)
My mother kept the early lupus diagnoses secret, but she also raised me with a foundation of Adele Davis nutrition & good exercise....to which I added yoga, TM, the Alexander technique & other great stuff. I only persisted with something if I felt true benefits. This stuff stands me in good stead now. And I realise I may be better off for not having been on oral steroids etc as much as I might've been (all my life it's been mainly prescription topical steroids etc)
Am not great at IT, and can't figure out how to post pics. My so-called vasculitic rashes seem to have settled down since I started 1000mg myco cellcept daily in January 2014. These rashes did respond well to betnovate + avoiding heat & sunshine. As with my version of RP/EM, blood pooling/venous insufficiency, the fact these rash symptoms respond to management pleases & reassures my medics + me. I've learned quite a lot about vasculitis over the years. My vasculitis predisposition involves a lot of other neurological & ENT symptoms. I know that the rashes I've referred to are clearly not the sort of really spooky vasculitic rashes....but even so my rashes are an indicator, and regarded as significant.
Actually I don't consciously feel stressed by this particular set of symptoms...that's why it's remained bottom of my list of priorities for 4 years..the fact these symptoms seem to have stabilised due to my lupus treatment plan is v reassuring. But, even so, I am now ready to better understand this particular aspect of my general condition...i cope less well even with the sort of relatively "cooperative symptomology" if I feel my health team isn't crediting me with the ability to understand and respond reasonably & appropriately to objective scientific interpretation of my condition.
Totally...Patients know what medics wouldn't begin to understand. We lived with this condition and they read on medical textbooks, studied / researched on (academic). We have far more raw materials to process Thank you for sharing and take care
Hi Barnclown. I experience the pooling you describe (as well as having Raynaud's, which can affect the smaller toes on my left foot) and I was recently diagnosed as having Neurally Mediated Hypotension. Basically, when I move from lying to sitting and standing my autonomic nervous system doesn't do what it should and the x litres of blood which rushes into my feet and lower legs isn't rapidly swooshed back around my system.
If you are interested, I was given a tilt and then 10 minute stand test, whilst rigged up to a heart monitor, blood pressure cuff and also a beat by beat blood pressure monitor around my right fingers. From that, on a screen, I could see exactly what was happening to my blood pressure, which showed the limitations of the cuff measuring system. On the low side anyway, when I stood, my systolic reading dropped to 84 and remained very low for a good few minutes. At the end of the test, my legs were blue/purple and swollen with blood.
Autonomic malfunction seems to affect some people with autoimmune conditions (I also have Hughes Syndrome and Prof Hughes recently co-authored a paper on the topic which was interesting). I have to drink 2-2.5 litres of fluid a day for my blood pressure, plus I have raised the head of my bed by 8-10 inches (seems counter-intuitive, I know, but it does work), and I now wear medical support stockings (class II) all day, every day. Plus I take what little exercise I can tolerate - walking at present - and avoid standing still for any length of time. Calf strengthening exercises are also recommended.
I feel like I've hit the jackpot! Mrsmouse, your experience & what you've described makes total sense to me. I haven't had these sort of tests...and am in no rush to press for them, but I feel more confident just knowing about all this. So, many thanks for your reply!
I had general anaesthetic (again) recently and, due to my BP dropping v low, the nurses had me drinking extra water (I was a bit unconvinced & surprised as I do constantly sip water anyway re the sjogrens...but the drinking did get the results the nurses wanted). So i had been alerted to the existence of some kind of drinking water low BP management technique....but now I can discuss all this stuff matter-of-factly with rheumatology in sept.....(and yes: I do already sleep with my bed head slightly raised to manage my upper GI conditions so maybe that is helping with my version of this blood pooling/venous insufficiency complex of symptoms....)
I don't think hughes syndrome has been part of my profile, but, whatever, I will just ask rheumatology about this complex of symptoms (blood pooling etc etc) and:
Barnclown. Glad this has helped. I'll try to search out the abstract of the Hughes et al article over the next few days and I'll forward the link to you, if that would be easier for you. Just let me know.
Interesting your experience with general anaesthesia. I had an unexpected cardiac arrest after a general - completely threw the medics. With my NMH diagnosis, it potentially makes sense. Intravenous hydration; that's the key I understand!
Thanks: I had no luck this morning finding that article...am not great at tracking these things down..so had planned to have another go!
Re your unexpected cardiac after GA: hmmmm....v interesting too. at my recent GA, the anaesthetist went to great trouble over me. I was v impressed. This was the first GA since my lupus re-diagnosis. another part of my profile is ehlers danios type hypermobility, with paroxysmal haematomas. My father was hypermobile too, although possibly more marfanoid. And his severe early onset cardiac disease reflects all this. But in his 70s, after several cardiacs & big surgeries, he died of an abdominal aortic aneurysm. I was born with a slight heart murmur & still have it, but echocardiogram (inc 24 hr ambulatory) etc are all relatively normal. Basically many aspects of my profile only "just" deviate from normal range. But my Drs seem to have figured out that so many "barely normal" aspects = watch out for surprises.
Chronic oesophagitis with metaplasia of gastric type
Chronic gastritis due to overlong treatment with NSAIDs and also slow transit motility small bowel bacteris overflow
Gastroparesis
Duodenitis
All despite conscirntious self help/lifestyle management including all officially recommended techniques. Over the decades, allthis definitely helped minimise these issues....but their managemrnt has been a constant day to day effort and continues to be
Oh Barnclown, that is SO interesting; in fact I virtually jumped off my chair. I had a Type A aortic dissection (from the root i.e. aortic valve, ascending arch and all the way down to my left iliac, where it then cut off and stopped the blood supply to my leg). I am very, very lucky to be alive. Anyhow, all this led to the cardiology team getting a rheumy involved, on hearing my prior history (I was diagnosed with M.E./CFS) - which led to the diagnosis of Lupus, Hughes Syndrome, recently the NMH, and then - this week - I got a letter from the clinical geneticist to say that the lab has found a change in one of my genes, which has been linked to aortic dissection. The docs, after the dissection, had originally thought Marfans or Ehlers Danlos vascular type - but my DNA test positive for either. I'm semi hypermobile, plus with all my other symptoms had thought it must be something like this, in addition to the autoimmune stuff - so my forthcoming meeting with the geneticist will be interesting.
But I digress. Here's a hyperlink to the article re autonomic disorders and Hughes from the journal Lupus that I mentioned:
Also, you might be interested in this website, mainly about POTS (see article) but also touching on other autonomic disorders - such as orthostatic intolerance, of which I believe NMH is a form:
Hey Misty14. Glad it's of help. I've learned so much from others on this site, so it's good if I can give a little back occasionally. Best to you, too!
MrsM: just read the potted version of the hughes article: fascinating & vvvv helpful to me...when I got to the mention of IViG therapy I thought: Yikes: this is exactly how hypogammaglobulinaemia is treated...which is what immunology are seeing me about now.. So, am even more glad of your links now. Will read the POTS link asap
PS I just discovered notes I'd taken on the hypermobility forum 2 years ago when I ran a search there re a Blood Pooling...I'd just been so distracted by more urgent symptoms that I'd forgotten I'd found this info: anyway, would you believe, the posts I found corroborated Mrs Mouse's comments on this subject...FANTASTIC TO GET THIS INSIGHT from several directions at once. Apparently the venous insufficiency is characteristic of certain types of hypermobility....well, I'd recommend a this organisation to anyone whose profile involves hypermobility etc
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Thank you for sharing and take care
Ouch! Painful feet and legs - any ideas? Is this part of lupus or something else?
