My primary is systemic lupus...but I went without daily prescription lupus meds until 4 years ago because my infant onset lupus diagnosis got lost. I'm 62 now.
My Drs, consultants & podiatrist have been muttering about "blood pooling" 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 cycle plays into the purple colouring caused by this blood pooling 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)
Sorry for such a long post...basically I'm particularly interested in differentiating between the elements involved in this complex of symptoms as I know it:
sjogrens
Raynauds
Simultaneous erythromelalgia
Peripheral neuropathy
Vasculitic rashes
Livedo reticularis
Blood pooling/venous insufficiency
Relatively low blood pressure
Paroxysmal haematomas (mostly in the extremities, related to my Ehlers Danlos hypermobility)
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'm not consciously worried about any of this...am managing it reasonably well, so it's taken me years for this to get to the top of my list for discussing with rheumatology. But I know this is an important subject I should understand better
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So glad you are managing this so well. I really admire all of the knowledge that you have acquired about your condition. It seems complex, yet you are very much on top of it. Congratulations on this! I wish you well. Hope things do not worsen at all and that you continue to maintain.
Thanks...I can use all the encouragement I can get: much appreciated!
We multisystem autoimmune condition patients just seem to inevitably be complex. I'm the type of person who copes best when I feel as if I understand....but there are plenty of other perfectly good ways of coping.
Am guessing blood pooling/venous insufficiency isn't part of your mix
No, not now, anyway. But I did have Fibromyalgia. I got rid of it totally with a treatment called TMS, Transcranial Magnetic Stimulation. It was mainly to get rid of depression but had the possibility of banishing Fibromyalgia. It did. I was very lucky as nothing was guaranteed. It was very expensive and my medical insurance would not cover it. But I feel it was worth it. It took about 6-8 weeks of daily treatment. An amazing experience!
Thanks! The TMS was this: being in/on a machine, sitting comfortably in chair with a kind of 'woodpecker' pecking on my top of my head in certain exact spots, very carefully measured. It was just a lovely experience. I don't know how common it is, but it was just amazing. I don't think that very many people know about it. My relatives were not in the least bit interested. Of course! lol! I think you are my first congratulations. Thanks again.
U.S. In New Mexico. This whole state has only two places for TMS treatment, one in my city. I looked at California and it has dozens! A former friend had it done at Duke University in North Carolina and hers was paid for by her insurance and was less expensive. Coverage depends on where you live and also on what insurance one has. Mine was terrible - Humana. Also I had a "case manager" who let me down re that issue. I no longer have nor want nor need her services. TMS is also done in Europe, was actually done there first.
Hi Barnclown, I have this pooling... You've described it perfectly! However, like you I've had it on the bottom of the list while dealing with main diagnoses (APS, Lupus). I'd love to hear how you get on when you get to discuss it.
I don't like saying it, but: oh good: v glad to find you & to have your corroboration...I also posted this question on the Lupus UK forum & discovered this can be linked to:
Neurally Mediated Hypotension
&
Autonomic malfunction
&:
Here's a hyperlink to an article re autonomic disorders and Hughes from the journal Lupus:
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:
Wow! Loads to read, you seem to know your stuff! I can spend days researching particular things and then forget what I've read or where I read it. Still struggling to come to terms with the cognitive problems. Good luck with the appt.Maria x
am only just beginning to get my head around this...avoiding too much googling...sticking mainly to guidance from trusted sources...not leaping to any conclusions..feeling my way...and am v grateful for your input! Those cognitive probs do make the going tougher...
Hi Barnclown, really interested. Just printed these off to read tomorrow. Going to continue back-reading your journey. Seems I may be starting a similar one so your posts very very helpful to me. Thanks. Babs x
Hi, I'm still catching up on your history, you have really been through it haven't you? I just hope I deal with whatever the outcome is on Friday half as well as you have and I will be a happy bunny. Take care. Babs x
wow everyone...so much information! I don't reply too often, because sometimes I feel like my "illnesses" are not as bad as others...or they're worse than others, and I just don't know what to say. It seems like no one is being treated the same as me? I have fibromyalgia, raynauds, meniers, sjogrens syndrome, neuralgia in all 4 limbs and have had trouble with my legs swelling for years! I take cymbalta, oxy, something for restless leg syndrome, and lorazepam at night...I also take adderall for narcolepsy. I take 3 different fluid pills for swelling...been to all the specialists you can think of to find out WHY I swell. Finally, yesterday, after almost 20 years, my family physician sent me to a vascular doc (vein solutions) and after a doppler on both legs, discovered I had the veinus reflus and blood pooling in both legs! Then he went on to tell me that this was not a problem for a vascular doc, but for my cardiologist! That's right, it's coming from my heart. So, needless to say, I'm a bit worried, and have to wait all weekend before I can call for an appt.EVERYONE in my family has either passed away from, or had some kind of heart surgery! I'm just beside myself...I was feeling pretty good after my doc had doubled my cymbalta...gave me more energy, less depressed, less pain...now this. Guess I'm just a little down today. But I feel so bad for all of you! I wish I could find the answer for all of us...God Bless
I vickisu & thanks for your reply. Your situation is very complex and I'm very interested. Am v grateful for these details: am learning a lot, and realising how involved diagnosis of these things can be
Am so glad your Drs are getting down to figuring this issue out! sounds like you're having a breakthrough which may help across the board. Why this has taken so long....considering your family history...well, best not to dwell on that, I guess. Feeling low at moments like this seems natural to me: yet another tense, serious issue to deal with.....more investigations etc....but this seems to me a giant step in the right direction: understanding & treating thus cardiology issue may mean improvements in other chronically troublesome areas. haven't we all seem this sort of outcome when root problems are finally tackled.
Hi Barnclown, what a post, fascinating, even down to what you laughingly call OCD!! I'm going to see my GP today and ask him outright if he has suspected vasculitis for all these years. Not to pin blame or anything - just goes to prove how rare and diverse connective tissue disease is. I was so panicky at first, thought I was going to die but just like you the more I read, research and understand the calmer and more philosophical about it I become. Thanks for your story so far.. Babs x Compelling reading.
Hope you'll let us know how you get on at the GP's today...tricky one, because clearly there are quite a few different reasons (all of them complex) that can be involved in this sort of thing...I continue to hope fervently my version of this isn't due to vasculitis gradually becoming diagnosable...it's a ghastly condition...and I hope it's not actually coming on...don't we all have enough to deal with already! Take care & good luck🌻🍀
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