It is all much more complicated. Raynaud's is reasonably common but I doubt it has any link FM or ME. A much commoner reason for blue feet is called acrocyanosis - which gets little attention because it does not matter. There is also perniosis or chilblains, and other things. The document is very confused.
I got the cold feet symptom a few times during my earlier years of ME. When I say cold, I do mean cold. Distinctly and abnormally chilly to the touch, including other people's touch. In the middle of a humid tropical summer. No idea of its role in anything, but it did occur at the times I was getting the worst of the night sweats and hot-cold flushes.
I definitely have Raynaud's - I 'inherited it' from my mum along with a lot of allergies (well before ME days), particularly skin allergies. In my case it affects more than my hands and feet, and is easily triggered by moderate cold. Other triggers - I don't smoke so that isn't aggravating it and stress doesn't seem to make any difference for me. I've always treated it as just a nuisance, but now I'm wondering whether there might be any impact or connection with my orthostatic intolerance (positive for POTS on a tilt table test). My Orthostatic Intolerance gets MUCH worse in winter, whereas typically it seems (for everyone else) it is only hot temperatures that make a difference to POTS. The recent paper from Fluge and Mella mentioning a hypothesis of autoimmune impairment of capillary circulation (if I am remembering correctly) made me think about this. Thanks for any thoughts on this from the still brainy/medical people/anyone?
The article at the top is a commercial health site muddle. If you have blueness and coldness of more than hands and feet it is probably not Raynaud's. Raynaud's is a very specific problem relating to digital sympathetic nerves and is best identified by a yellowish-white phase, followed by purplish colour on re-warming. Cold blue extremities (acrocyanosis) is very common. I doubt it has anything to do with orthostatic intolerance because it is the opposite in a sense. Orthostatic intolerance may be due to blood vessels not contracting, with blood pooling, whereas acrocyanosis is likely to be due to vessel contraction, although it is not as simple as that. I don't think we have good evidence of autoimmunity in ME or FM. If acrocyanosis has been present since childhood it is not autoimmune anyway. So I don't see a reason to make a connection really.
@Jonathan Edwards Don't worry, I wasn't taking much notice of that website, I just tacked on to this thread because I didn't think it was worth starting a new one. My fingers and feet do go a waxy white colour and can be numb. Then when the blood comes back they can go hot for a while and more red than purplish. My mum was more purplish after the white, but she was a smoker. My extremities don't go blue, although they certainly are cold. My feet would often be sweaty as well as freezing cold, which was weird, but that seems to have gone away the last few years. Doctors have diagnosed it as Raynaud's and no-one (until today!) has ever suggested its anything else. Although Im always open to other more treatable ideas. I take your point about Raynauds and PoTS being opposite problems though. Im just always looking for perspectives that might help me manage the OI which is so disabling for me all winter.
@OverTheHills - I have Raynauds too… not severely thankfully. Certain fingers and toes are much more susceptible than others. Often it happens when I’m particularly tired or have done something stressful. Not always cold-related for me. Certain shoes will trigger it… I do have probable CREST syndrome which explains it for me.
Hi Daisybell thanks for the reply yes I have certain fingers and toes which like to play up (shoes and gloves cannot be very close fitting), though as I've said it seems to have nothing to do with stress or tiredness for me, only cold. Im embarrassed to say I also have the problem with nipples (and I can't tell you how painful that is) and I think the tip of my nose too. Mine is thought to be primary as it started when i was a teenager.
I had Raynaud's for maybe 5 years or so. It started out mild and became increasingly more often until it stopped altogether. It was after that that I would get issues such as fainting (or the slow version where you feel your vision narrow and if you sit with head down you can avert fainting) when raising my hands above my shoulder height (shampooing hair or holding a hair dryer for example). So the OI issues followed on after the Raynauds.
My son and I get this. My son in particular can get the most dramatically coloured feet - one half completely white and one half red-purple. I am not so sure. I guess it depends how common Raynaud's is.
Can I say that's really interesting Snowdrop without appearing insensitive? Of course I'm sorry to hear that you have OI now, particularly as it involves fainting which is so dodgy in a bathroom full of hard surfaces. But a history where your (later life onset?) Reynauds progressed and then swapped over into OI, I wonder what other people's experience is with circulation issues pre and post ME onset. As I mentioned I had primary Raynauds from teenager (actually, now I think about it, even in childhood), and mild OI too . I can remember feeling dizzy standing in school assemblies, and feeling really ill when forced into interminable shopping trips involving a lot of standing still. Both went away during adulthood (not living with smoker parents and fitter). Post ME OI is a huge problem for me, always much much worse in winter. This year seems particularly bad for the Raynauds I don't know why but of course it's just uncomfortable and much easier to manage. I don't get sores or anything. With my OI Im not generally a fainter but I did have a period of face planting unpredictably when out and about. Once I convinced doctors to let me try fludocortisone my low pulse pressure( which no one noticed) sorted out and I stopped passing out. it didn't help the regular POTs though☹. Thanks to all who reply, this is a NICE distraction!
@OverTheHills I don't know what to say except it was/is what is was/is. I've experienced much neurological weirdness too and I don't know what to do with that as nobody knows what's what. I have never been well. I was ill as a child and teenager and had some good period as an adult where I wasn't as able as normal ppl but managed well. Then things like Raynaud's happened and a sore throat that lasted years etc etc. Probably because I was using energy to chase my kids around. I just thought to myself that the end of the Raynaud's (which was diagnosed by a GP) and the start of OI (they were consecutive and close in time) were just things progressing. But I hold all of my pet theories of that sort lightly. And while I stand by the events as 'it was/is what it was/is,' who knows why or how. I'd certainly prefer (like everyone) to be out and about rather than detailing this weirdness. I seem to get good, kind Dr's but they are always giving me diagnoses for which there is nothing to be done. It's Frustrating to say the least.
You're definitely not the only one, Goldilocks here as well. The absolute worst for triggering my symptoms is going in and out of the cold in the winter, e.g. shopping. Heatwaves are bad but symptoms tend to be less acute. The acrocyanosis that is very commonly reported with POTS tends to be quite extensive, not just limited to an extremity. Often you'll see a mottled pattern (resembling livedo reticularis) too, I get that fairly consistently above the elbows now. Julian Stewart's group has looked at this over the years in POTS. A couple of their studies come to mind if you're interested: Pooling in Chronic Orthostatic Intolerance | Circulation (ahajournals.org). Cutaneous neuronal nitric oxide is specifically decreased in postural tachycardia syndrome | American Journal of Physiology-Heart and Circulatory Physiology Ryan
