It all starts with the arms and hands for me. For others, it seems to start with the legs and feet. This is a problem that has become much more prominent for me in the last 6 months.
What happens? I can't have my arms or hands anywhere above the level of my heart for more than a few seconds without them becoming tingly and numb. For example, do you ever lean back in a chair, interlace your fingers behind your head in order to relax? When I do this, my arms and hands immediately being to tingle and fall asleep.
And my arms don't even need to be that high for this to happen. For instance, when I do light yoga, even holding my arms out to the side at about chest level (the same level as my heart)--as in Warrior 2 pose--I experience the same problem. When you think about it, that is insanely poor circulation. How can my heart not even mange to pump blood horizontally to the hands that are two feet away?
Some people believe that the brain fog we experience in ME/CFS is less from inflammation as it is from poor blood flow to the head. I'm not sure I agree with that, but I do think that inflammation is somehow also involved in these poor circulation issues. I know this because when I'm crashed and feeling overall inflammation, my hand numbness gets even worse.
I haven't spoken with many others who specifically experience the poor circulation in the arms and hands, but I'd like to hear from others how & where you have poor circulation.
I'll also leave you with a few links to other articles & studies about poor circulation in ME/CFS, besides the one linked above:
http://www.cfids-cab.org/cfs-inform/Brainscans/yoshiuchi.etal06.pdfThen there's the question of how poor blood circulation relates to low blood volume, (which is more the issue with POTS, OI, and sometimes tachycardia) if at all. They are often treated as separate issues in the medical literature, but then again, it's hard to see how low blood volume wouldn't contribute to poor circulation.
http://www.cfids-cab.org/MESA/cardiac.html
http://www.webmd.com/chronic-fatigue-syndrome/news/20030414/tricky-heart-may-cause-chronic-fatigue
Incidentally, the one treatment that I have found to help with poor blood flow is D-Ribose. When I forget to take D-Ribose or am late with a dose, the problem is worse.
please email me Calvin , I would like to have a word with you.
ReplyDeletethank you!
What's your email?
DeleteYou said you'd like to hear from other arm/hand numbos :)
ReplyDeleteYup, same thing happens to me. Putting my hand/arms up or even doing certain movements make them strangely "dead" (I know another guy cfs patient that has this same issue too with his arms).
Certain things make it worse but it also goes in spells where (esp my left hand/arm) feels kind of numb and like it's not getting the circulation it needs at all.
In the past yr my legs got really bad and it turns out I actually have developed vascular blood flow issues which is amazing bc I don't have any of the criteria for developing it! So I do think it's MECFS related & the heart Dr thought so too.
You mentioned brain scans: I had one done yrs ago that showed a massive decrease of blood flow to 1/2 my brain but I agree with you, I really don't believe that's the whole issue. Inflammation is a huge issue for me as well.
I was on saline IV's for a few yrs as part of a drug treatment program and I have to say I think they were really helpful in many ways. I'm looking into going back on them again.
D-Ribose helping you is good to know, thanks. My body hates supplements but it would be worth giving it a shot!