I’m currently working on getting on disability and getting a wheelchair in which I can elevate my legs when needed. I’d love to hear other’s stories, I myself am going to be working with an attorney and am eagerly waiting for my next doctors appointment to talk about the wheelchair.
Just out of curiosity, were you ever evaluated for CRPS (Complex Regional Pain Syndrome)? Other than your symptoms being bilateral (less common with CRPS), you fit the profile well.
If you’re unfamiliar, here is the link and excerpt from the NIH fact sheet for CRPS:
What causes CRPS?
It is unclear why some individuals develop CRPS while others with similar trauma do not. In more than 90 percent of cases, the condition is triggered by a clear history of trauma or injury. The most common triggers are fractures, sprains/strains, soft tissue injury (such as burns, cuts, or bruises), limb immobilization (such as being in a cast), surgery, or even minor medical procedures such as needle stick. CRPS represents an abnormal response that magnifies the effects of the injury. Some people respond excessively to a trigger that causes no problem for other people, such as what is observed in people who have food allergies.
I have not been, my symptoms did however start after having ankle surgeries, one on both ankles. Is it possible to have both em and crps? Either way the outcome doesn’t look good, I don’t want to be on narcotics and me and my mom are tired of wasting money on treatments that just aren’t working.
I also had a nerve conduction study done that showed my nerves being completely normal.
CRPS is typically evaluated using a bone scintigraphy. CRPS is associated with excessive bone resorption. Your surgeon may have not broached the topic because CRPS is sometimes linked to negligence and malpractice.
You’re right, the outcomes for CRPS are typically not good. I thought of it though because CRPS is more likely to lead to rapid wheelchair use than EM. Also, if it turned out you did have CRPS, you would not want to be icing your limbs. That makes CRPS worse. Which is an example of why it’s always important to have a correct diagnosis.
I think you need a bone scan.
I might have to pursue that once I’m on disability as it’s already cost my parents enough money but I will certainly look into it.
Good news is I haven’t had much ice pack use, I was first misdiagnosed with raynauds which I was of course told not to use them as it would just make it worse and continue not to use them, cold laminate flooring is still my friend though XD
I have had these symptoms for 4 years now, the last year it has gotten to the point I’m stuck in a recliner, it worries me however as I have had what seems like a flare on my arm twice, doesn’t mean I shouldn’t look into crps however, I’ve been misdiagnosed/not fully diagnosed already.
And I can understand why he would be worried, however I probably wouldn’t sue or anything like that, there was no possible way of knowing my body would react in such a way and he gave me my ability to walk back, for awhile at least.
The anesthesiologist who treats me initially thought I had CRPS because a knee injury preceded my symptoms and said symptoms are primarily at the knee (unusual for EM). But I remember telling him, “I don’t think I have CRPS because i’m not in enough pain.” My erythromelalgia can be uncomfortable, even painful at times, but people with CRPS score their pain extremely high. It is a condition whose primary feature is pain. A friend of a friend has CRPS and she is in pretty bad shape. She is mostly housebound and has to use a wheelchair at times. Conversely, wheelchair use for erythromelalgia is relatively rare. I’ve been using the forum for 3 years and could probably count on one hand the number of times i’ve read someone inquire about a wheelchair. It’s uncommon.
It’s possible, of course, you have aggressive erythromelalgia. I just don’t think you can be definitively diagnosed not having a bone scan to rule out CRPS. The symptoms of each are very similar.
I can certainly see how similar they are, I spend all day in a recliner and have to prepare myself to walk as when first getting up I have pins and needles and then the burning and redness starts. If I were to go on a walk around the block with my dog most times I come home crying, even when barefoot to try and alleviate the symptoms.
For some reason he diagnosed me as having it be mild erythromelalgia, perhaps I have not gotten across how much pain I am in. I tend to keep it to myself unless it’s to the point of crying, family gets tired of hearing about it.
What is the limiting factor when you walk? Is it painful to bear weight on the sole of your foot because the sole is burning? Is it pins and needles throughout the foot? Is there variation in how it feels between simply standing and walking?
The pain you’re describing is severe, not mild. Perhaps your doctor didn’t see the full extent of your symptoms. Do you have a picture of your feet at their most red?
When I first stand I get pins and needles though after a few steps they tend to fade and within a few minutes the whole of my feet have this itching burning pain, like I’ve been bitten by fireants, if I continue it spreads up my leg and burns even worse as well as my veins will bulge out. I have had times where the tingling won’t go away in part of my foot, usually between my big toe.
Another limiting factor is I get Charlie horse level foot and leg cramps where the muscle refuses to relax or move even after massaging it and it will cause residual pain throughout the day.
I have shown him pictures but my phone doesn’t seem to capture the full redness of it.
This shows an example of having one foot hanging down and one having been elevated.
This is more the color they are in reality, thankfully without the ulcers and not as far redness up the leg.
At first sign of my symptoms walking helped relieve them, now years later there is no difference between standing and walking.
Not to continue beating the same drum but muscles spasms are a symptom of CRPS and not erythromelalgia. At bare minimum, such spasms require there be something else involved besides just erythromelalgia. People don’t have muscular involvement with erythromelalgia.
Also, apart from the redness, what is going on with your toes in these pictures? Why are they bent? Is that a postural compensation from not having ankle ligaments? Have they always been that way?
Yeah we have never been sure what has caused the muscle spasms, I’ve always thought maybe lack of blood flow or something, I’m on two alternating muscle relaxers and still get them.
I never really noticed but I guess they are bent, they’ve always been this way for me, I’m not sure why tbh.
If it’s not a joint issue, they’re bent because your flexor digitorum longus muscle is too tight. It functions to bend the second, third, fourth and fifth toes.
Perhaps the reason no one has been able to figure out the origin of your muscle spasms is because they’ve been looking in the wrong place. It’s a big red flag to have a large, unexplained symptom that doesn’t fit your diagnosis.
Because, after all, what’s more likely:
you have erythromelalgia and something else on top of it causing muscle spasms?
or
just CRPS, a condition able to explain all your symptoms?
Obviously the later is more likely, which is why you should have a bone scan.
All the muscles in my feet are certainly too tight, if I go for a massage they ask me to relax them and I can’t.
I’ll look into getting a bone scan when I can but my number one priority is getting a wheelchair to improve my quality of life, either way I’m still living with the same pain no matter the diagnosis
You definitely want to do what will improve your quality of life. If you feel a wheelchair will help, it’s good you’re pursuing that. However, it’s also important to be certain you have the right diagnosis. Treatment options for EM and CRPS are quite different. If you’ve not responded to any medications for EM, one reason could be the diagnosis is wrong. I would find a doctor experienced with CRPS and ask them to do a differential diagnosis with EM. If they rule out CRPS you can continue trying the varied pharmaceutical options for EM. You don’t want to stop until you’ve turned over every stone possible.
Yeah it just gets tiring sometimes. I’ve been having constant doctors appointments related to this and other health conditions and it’s hard not to give up sometimes when the treatment options aren’t exactly appealing. (Having gastroparesis for example.) I also completely rely on my parents for paying for the appointments and bringing me to the appointments as I am unable to drive, but I will look into crps when I can.
Hi Kats, sorry to hear about what you are experiencing so far. But strongly advise that you have another opinion. I have both complex regional pain syndrome and EM. I have needed a specialised wheelchair with the legs elevated straight out in front of me because of the complex regional pain syndrome. This is what causes the extreme pain 24 seven. I have had EM since I was a little girl and the burning and pain is very different. My CRPS was diagnosed post ankle reconstruction in 2005. I have just shared this with you in the hope that this may help in someway. I just wanted to wish you all the best.
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Thank you, interesting you were diagnosed after an ankle reconstruction and my symptoms appeared after ankle surgeries. A wheelchair with the legs able to be elevated is what I’m looking into myself as that’s when I feel relief, I’m so glad something like it exists out in the world. I wish you the best as well 
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My story is that I initially had Raynaud’s for several years. Then the EM started up. In July 2014 I had foot surgery and afterwards was when my symptoms got really bad. Extreme insomnia, back problems (which I attributed to a difficult recovery from the surgery), my EM got worse (I didn’t know it was EM back then), became very sensitive to heat and cold, my feet were cold and blue in the morning and red and inflamed at night, hurt to walk on my feet, lost a lot of hair including the outer half of my eyebrows, felt like crap all of the time, and more. The only thing wrong my doctor could find was my B12 was low, so I started getting injections as I had tested positive for pernicious anemia. Still had health issues so I went to Mayo Clinic in April 2015. They diagnosed me with EM and small fiber neuropathy. They said I was showing signs of an autonomic nervous system disorder as tests showed I no longer was able to sweat, had low BP and low body temp, and heart palpitations when I stood up. By August 2016 I was in pretty bad shape. I could hardly stand up without feeling very faint and needed a wheelchair since my feet were terribly painful to walk on. I was referred to an autonomic specialist at Stanford who diagnosed me with Pure Autonomic Failure and basically sent home to suffer until I died. Seven months later, in March 2017, with the help of friends on social media, I finally figured out what was behind everything – Lyme Disease. I had been tested for Lyme twice in the past, once at my HMO in 2014 and then at Mayo in 2015. Both were negative so Lyme was ruled out and I believed my doctors. It turns out the ELISA test most doctors rely on isn’t very sensitive and often misses cases. So then I found a Lyme literate doctor (LLMD), who ordered more sensitive IGeneX tests for Lyme and coinfections and I was highly positive for Lyme. I’ve been on antibiotics for the past 15 months and I’m feeling much better. I’m able to be upright and walk again, though I still have sore feet. I’ve regained my ability to sweat and many of my other symptoms have diminished. Please consider finding an LLMD, as you won’t get much help from conventional medicine. For me, it has been a long road to recovery (I’m not there yet) but seeing an LLMD has made all the difference in the world.
I find this difficult to believe. I have EM and having a wheelchair has changed my life. I no longer avoid going to places where there is a lot of walking involved. I just get out my wheelchair and go. I can’t believe that others with EM (in their feet) are able to live without using a wheelchair at least some of the time. If they are just staying at home and not going anywhere, then okay; but long distance walking has me in tears because of the pain and I just cannot tolerate it. Is it really that rare to have a wheelchair?
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I’ll have to check it out though it all depends on money and how far my mom is willing to drive me as she’s my ride, I’m not quite sure when I would have gotten Lyme however… My symptoms started after surgery when I was in a full blown cast up to my knee in winter, before and after rarely leaving the house…