One of the reasons I’m asking for peoples stories here 
I just have a hard time believing more don’t use a wheelchair with this, especially if they’re stuck at home like I am, I just see it as something that is gonna give me my freedom and independence back you know? She doesn’t have EM but other chronic illnesses but I highly recommend watching chronically Jaquie on YouTube, she made me realize it’s okay to use a walker and now go for the wheelchair, if it’s only going to improve my life why not?
I agree; I say go for it! I was embarrassed at first to use a wheelchair because I didn’t want attention from others, but I realized I got MORE attention when I was trying to walk with flares and in tears. Now I can enjoy outings and my family can enjoy outings with me because we don’t have to worry about me going into a big flare. It took me a few times to get used to being in the chair, but now I am so thankful for it.
I use those motorized carts to go shopping with my mom and go out of the house but only two stores have them! I’ll be able to go to the mall or anywhere I want! Even one of my favorite places lagoon you’ll have to give me some wheelchair tips and tricks haha
Marci, it’s great a wheelchair has helped you and I don’t doubt some individuals with erythromelalgia may benefit from one. It is rare, however, and you were one of the handful of community members I was thinking of when I wrote I “could probably count on one hand the number of times i’ve read someone inquire about a wheelchair.” I’ll explain why I think it’s rare…
When I initially presented to a rheumatologist complaining it was difficult to stand at a sink and brush my teeth, he thought I had early rheumatoid arthritis. What he couldn’t figure out was why I had no problem going up and down the stairs. I had trouble standing, but not walking. It’s a logical dichotomy for erythromelalgia though when you understand how venous blood in the legs returns to the heart against gravity.
Arteries carry oxygenated blood away from the heart. Veins carry deoxygenated blood back to the heart. Capillaries are the blood vessels across which the exchange of gases and nutrients occur. In a vertical position, venous pooling occurs in the leg vessels due to gravity, which can lead to a 20% loss of circulating volume and relative hypovolaemia. This is because venous blood returns to the heart from the lower extremities through the contraction of the skeletal muscles. The soleus muscle, one of of the three superficial muscles of the posterior leg compartment, is a particularly important anti-gravity muscle. Veins have one way valves to ensure blood can’t subsequently flow backwards when muscles relax. But in short, muscle contraction is the pump by which venous blood returns from the legs to the heart when one is in a vertical position.
Now, why would this be important in erythromelalgia? The exact pathogenic mechanism for erythroemalgia is not known, but one mechanism that has been proposed for primary erythromelalgia involves microvascular arteriovenous shunting through arteriovenous anastomoses. The body has a mechanism (the AV anastomoses) by which it can quickly shunt arterial blood, bypassing the capillary bed, to the veins. It’s normally used when the body needs to quickly send warm blood back to the body’s core to protect the vital organs in cold temperatures. It’s been proposed the erythema seen in primary erythromelalgia is caused by increased thermoregulatory arteriovenous shunt flow.
So if you have all this warm arterial blood rushing through the AV anastomoses, where is it going to go? Nowhere unless you elevate your legs or start moving around. Remember, muscle contractions are the pumps that push venous blood against gravity back to the heart. This would explain why I could walk to and from my vehicle just fine at doctor’s appointments, but standing immobile at the counter while the receptionist took all day to sign me in made me want to scream. Venous pooling has nowhere to go when you’re standing immobile.
This may explain why wheelchair use with erythromelalgia is relatively rare. When you’re in motion the pumps are on to push venous blood away from the legs. Most should find movement at least modestly beneficial and explains why you often hear EM patients say they only notice a flare after they are done exercising.
All of this aligns perfectly with my own experience. Prior to pharmacological treatment, I was at my worst when in a dependent and immobile position. When the pumps are off, venous pooling is occurring in the legs and that makes EM symptoms inherently worse.
I have doubt whether using a wheelchair long term is good for erythromelalgia because muscle atrophy in the legs will make venous return less effective. Physical therapy that counteracts leg muscle atrophy in parallel would probably be better.
thanks so much carterdk for that super informative post! helps me better understand what’s going on and some of my observations with myself. thx again!
I should add that arteriovenous anastomoses aren’t just active in cold temperatures. They play a key role in thermoregulation in general. When the body is cold, warm blood is shunted back to the core to protect the vital organs. When the body is overheating, warm blood is shunted towards the skin, away from the vital organs, to be cooled via convection, radiation, and perspiration.
It’s pretty obvious in erythromelalgia warm blood is being errantly shunted towards the skin. That’s what causes the erythema (redness and heat).
Thanks carterdk, that is a very helpful explanation. I agree that I shouldn’t stay in the wheelchair all the time because it would cause muscle atrophy. However, I only use it as a preventative measure in places such as museums, malls, zoos, arboretums, etc. Even if the walking is not what causes flares, there is a lot of stopping and standing at places like this to look at things. I definitely cannot handle all of the standing without having painful flare-ups in my feet. So the wheelchair makes it possible for me to enjoy these outings. But I don’t use it on a daily or even weekly basis. I just don’t understand how people with EM in their feet can go to places like this without a wheelchair or a cane chair (which I also have and use from time to time). If you don’t know for sure there will be a chair to sit on when you need to stop, you’d better have one with you.
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For me even walking causes my symptoms and I have to completely elevate for them to stop, I however still plan on walking around the house except on really bad days
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Just a small point - I actually think it’s thought that in EM, the blood is shunted away from the skin, even though there is a lot of total blood flow to the extremity overall. So not enough blood is going through the nutritional capillaries, and a lot of blood is being shunted away via the AV anastomoses. The way I perceive this is the blood is being sorta short circuited.
This is why some vasodilators like misoprostol, sodium nitroprusside, etc can perhaps counterintuitively provide relief (sometimes…)-- by increasing nutrient perfusion to the skin, improving skin hypoxia
I could very well be off, and would love to better understand, but this is how I interpreted the papers by Mork et al
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Good catch, standing_cat! Yeah, that is definitely what they’re saying. What I misunderstood was the depth of the proposed shunting.
What is worse, crps or em?
Being that I am now diagnosed with crps and know so much about it now I don’t really like comparing pain levels but scientifically on the McGill pain scale crps sits at the top at a 42/50. I have had my crps spread practically full body, it isn’t fun. But neither is EM, I don’t know if they are linked in anyway but because some of the signs and symptoms being so similar I do wonder if there is any connection or people being misdiagnosed.
Right now there’s just not enough research into either disease, but I will say hope it’s EM and not CRPS.
Do you think crps is worse than EM?