Not sure if I have erythromelagia

Hello, my name is Joy and I just joined this site! About a year ago I started having severe foot pain in both feet. For moths I went to podiatrist thinking I had plantar fascitiis. But a recent MRI showed everything was normal in both feet. My podiatrist is referring me to get a nerve test done, because all my blood work is also coming back normal. It is extremely painful for me to stand, I feel a lot of pain on the inner side of my ankle near my achillies, and the bottom of my foot. In the past 8 months both of my knees have given me chronic pain. In the past 4 months the pain is now also affecting my back, but my feet are by far the most painful especially the right foot. I have tried physical therapy,chiropractors, rheumatologist, podiatrist, orthopedic doctors, and recently I have started going to a pain doctor. About the time the pain first started happening, the views and arteries in my body have become very visible, especially on my feet, legs, even around my eyes! It looks very irregular. Under my eyes I have tiny yellow pockets that look like dots (xanthelasmata) . I have not found any relief or answers yet, I do a lot of research online and thought I might have erythromelalgia. I think I do because my hands and feet get very red and hot when I am doing activities or outside, hands and feet also get extremely cold and blue/ purple color, but have been like this for years way before the pain started. Do all my symptoms sound like erythromelagia? I'm sorry for this long message, I just want to be as descriptive as possible. Thank you for your help. I attached a picture of my feet when they were hurting yesterday.

25-IMG_20150824_203613.jpg (231 KB)

Hello Joy bby, I don't have EM or Raynaud's so will leave it for our members who do to comment on your symptoms which may correlate to these conditions but I do have an auto-immune arthritis so your description of your foot, knee and back pain got my attention, particularly that you mention the plantar and achilles tendons.

So you've seen a rheumatologist? Did they review your blood work and examine you? Rheumy's are generally the detectives of the medical world (if you have a good one, that is) because some of the arthropathies do not necessarily show up as inflammatory markers in the blood so diagnosis is reached by exhaustive medical history taking, examination and exclusion ... it can take a while. Are you stiff in the mornings or after resting, is there a history of inflammatory arthritis or psoriasis in your family, that can sometimes be a pointer? And if it's another chronic pain condition, including EM, then rheumy's are often the diagnosticians for that too. If you've not seen the rheumy in a while and you've had lots of tests and imaging since then it may be worth going back for him/her for a review with all this additional information. Best of luck.

My issues stayed put to the feet, hands, and occasionally the ear tips. Red spots on the feet. Difficult standing, wearing shoes, hands very warm particularly around ipad, computer, phone. Venlafaxine has made a huge difference for me and I am back to running and boxing after being sidelined for 18 months with EM. The rest of your symptoms, well, not a clue. Only thoughts are fibromyalgia or Lyme disease, but I have little to base that on. Everyone here with EM has different symptoms. If yours is secondary, the EM could be the result of something else which is causing some of your symptoms as well.

Hi there
Your feet do look like mine when they get hot Same with the hands it can also affect the face and ears also knees . Mine starred with plantar faciitus it was a slow progress I had no pain at first just flare ups and only in one foot now it has progressed to nerve pain . Have you seen a neurologist it is a rare disorder so some docs don’t know anything mine was good . The cold sounds like Raynolds disease you can have this with EM . If you elevate your feet do the feet turn back to white ? I use cool gel ice packs wrap them in tea towel and then around the feet. Take care about what you eat no spicy and no alcohol . Look up Dr J cohen he has EM and has some good ideas and has helped him self a lot . If you can stay cool this will help winter is better for us . I always wear sandles and in the winter no socks in my boots , also take ice gel packs where ever I go . Hope this helps and good look .



Flame said:
Saving…

Hi Joy,

Sounds like you have both Raynaud's and EM. I have both, as well as pernicious anemia (PA) which caused a B12 deficiency. Before my PA diagnosis I had very sore feet for about a year, which I'm quite sure was caused by a B12 deficiency.

B12 is required for nerve health, producing red blood cells, and creating DNA so it is essential for good health. If you are B12 deficient it can cause nerve pain, numb or tingling hands and feet, fatigue, depression, hair loss, ridged fingernails and/or loss of "moons", enlarged tongue, palpitations, memory loss, and other symptoms.

If you have had some of those symptoms in addition to your sore feet, get your B12 checked. Doctors often don't think to test it. In many countries including the US and UK doctors use a very low bottom end of 200 pg/mL for the normal range. If your B12 is in the gray area 200 - 450 pg/mL (147 - 332 pmol/L) it should be investigated further with more tests (MMA and homocysteine) since neurological symptoms are known to occur within that range. Don't take any B12 supplements (some are available in massively high doses) because it will skew the results and you need them to be accurate if you are deficient.


hi graciousgeekgirl,

Do you know what caused your b12 deficiency and your PA?

graciousgeekgirl said:

Hi Joy,

Sounds like you have both Raynaud's and EM. I have both, as well as pernicious anemia (PA) which caused a B12 deficiency. Before my PA diagnosis I had very sore feet for about a year, which I'm quite sure was caused by a B12 deficiency.

B12 is required for nerve health, producing red blood cells, and creating DNA so it is essential for good health. If you are B12 deficient it can cause nerve pain, numb or tingling hands and feet, fatigue, depression, hair loss, ridged fingernails and/or loss of "moons", enlarged tongue, palpitations, memory loss, and other symptoms.

If you have had some of those symptoms in addition to your sore feet, get your B12 checked. Doctors often don't think to test it. In many countries including the US and UK doctors use a very low bottom end of 200 pg/mL for the normal range. If your B12 is in the gray area 200 - 450 pg/mL (147 - 332 pmol/L) it should be investigated further with more tests (MMA and homocysteine) since neurological symptoms are known to occur within that range. Don't take any B12 supplements (some are available in massively high doses) because it will skew the results and you need them to be accurate if you are deficient.

JW13,

I don't know for sure what caused my B12D and PA. My paternal grandmother claimed to have PA but I don't think she was ever tested. So it might have been hereditary. In 2010 I was besieged with terrible stomach pains and swallowing problems for a few months. Had a CT scan and a barium swallow test but no one ever figured out what it was. They weren't testing for H pylori back then (at least not at my doctor's clinic). Doctor said to take Prilosec to reduce stomach acid but I wasn't able to tolerate it (now the typical treatment as H pylori likes an acid environment). After a while the stomach pain stopped and I thought nothing of it. It was a very stressful period of my life then too as we were preparing to move our family household across the country. So I wrote it all off to stress. But I think it was related to developing PA.

I started showing neurological signs as early as 2012 but no one recognized them as such (fatigue, had a minor disc bulge that sciatic pain continued for a year). Foot soreness began in 2013 and I had surgery to alleviate the nerve pain. Recovering from that put a huge demand on my body for B12 and that's when I developed severe deficiency symptoms.

So a number of occasions could have been a possible trigger, or it was a decline in stomach acid level that eventually destroyed my stomach lining and hence the terrible pain in 2010. I do have the intrinsic factor antibodies as that test was positive.

Thank you so much for your helpful info. I went back to my rheumatologist last week for a new blood test. I have had one done by this doctor in April, all the results were normal. This time the doctor said that levels in my liver were off and go back for another blood test. When u get blood taken are u suppose to do it on an empty stomach? Thank you for your help! God bless you



Jules G said:

Hello Joy bby, I don’t have EM or Raynaud’s so will leave it for our members who do to comment on your symptoms which may correlate to these conditions but I do have an auto-immune arthritis so your description of your foot, knee and back pain got my attention, particularly that you mention the plantar and achilles tendons.

So you’ve seen a rheumatologist? Did they review your blood work and examine you? Rheumy’s are generally the detectives of the medical world (if you have a good one, that is) because some of the arthropathies do not necessarily show up as inflammatory markers in the blood so diagnosis is reached by exhaustive medical history taking, examination and exclusion … it can take a while. Are you stiff in the mornings or after resting, is there a history of inflammatory arthritis or psoriasis in your family, that can sometimes be a pointer? And if it’s another chronic pain condition, including EM, then rheumy’s are often the diagnosticians for that too. If you’ve not seen the rheumy in a while and you’ve had lots of tests and imaging since then it may be worth going back for him/her for a review with all this additional information. Best of luck.

Thank u for your reply Sky! If u don’t mind me asking what type of EM do u have? I think I might have secondary. I used to dance and run but now I have to limit my activity because of my pain. I think it’s so awesome you are back to your boxing and running, it’s very encouraging to hear that! God bless you



Sky said:

My issues stayed put to the feet, hands, and occasionally the ear tips. Red spots on the feet. Difficult standing, wearing shoes, hands very warm particularly around ipad, computer, phone. Venlafaxine has made a huge difference for me and I am back to running and boxing after being sidelined for 18 months with EM. The rest of your symptoms, well, not a clue. Only thoughts are fibromyalgia or Lyme disease, but I have little to base that on. Everyone here with EM has different symptoms. If yours is secondary, the EM could be the result of something else which is causing some of your symptoms as well.

Hi graciousgeekgirl! Thank u for your reply! How do the test the b12 levels? Have u found relife with treatment? I have been taking b vitamin supplements for a month and haven’t felt a difference in my pain. I’m scheduled to get a bunch of nerve testing done by a neurologist. I hope I am taking the right steps to find out what is the cause/treatment. God bless u!



graciousgeekgirl said:

Hi Joy,

Sounds like you have both Raynaud’s and EM. I have both, as well as pernicious anemia (PA) which caused a B12 deficiency. Before my PA diagnosis I had very sore feet for about a year, which I’m quite sure was caused by a B12 deficiency.

B12 is required for nerve health, producing red blood cells, and creating DNA so it is essential for good health. If you are B12 deficient it can cause nerve pain, numb or tingling hands and feet, fatigue, depression, hair loss, ridged fingernails and/or loss of “moons”, enlarged tongue, palpitations, memory loss, and other symptoms.

If you have had some of those symptoms in addition to your sore feet, get your B12 checked. Doctors often don’t think to test it. In many countries including the US and UK doctors use a very low bottom end of 200 pg/mL for the normal range. If your B12 is in the gray area 200 - 450 pg/mL (147 - 332 pmol/L) it should be investigated further with more tests (MMA and homocysteine) since neurological symptoms are known to occur within that range. Don’t take any B12 supplements (some are available in massively high doses) because it will skew the results and you need them to be accurate if you are deficient.

Hi Flame! Thank u for your reply! I am scheduled to get some nerve testing done this month. Do u have plantar fasciitis or a nueroupathy? My heel/ Achilles pain also came gradually and has not gotten any better. The docs think I have a nueropathy. Do u still suffer from foot pain? Please let me know. God bless you



Flame said:

Hi there
Your feet do look like mine when they get hot Same with the hands it can also affect the face and ears also knees . Mine starred with plantar faciitus it was a slow progress I had no pain at first just flare ups and only in one foot now it has progressed to nerve pain . Have you seen a neurologist it is a rare disorder so some docs don’t know anything mine was good . The cold sounds like Raynolds disease you can have this with EM . If you elevate your feet do the feet turn back to white ? I use cool gel ice packs wrap them in tea towel and then around the feet. Take care about what you eat no spicy and no alcohol . Look up Dr J cohen he has EM and has some good ideas and has helped him self a lot . If you can stay cool this will help winter is better for us . I always wear sandles and in the winter no socks in my boots , also take ice gel packs where ever I go . Hope this helps and good look .

B12 is a blood test. It's not normally ordered by traditional doctors so you'll need to ask for it. Really ought to be part of the CBC full blood workup. Since you have supplemented, you may have a higher B12 level which could put you into the normal range according to your doctor. Are you able to go without the supplements for a few weeks before getting your B12 tested?

I am better now with B12 treatment, though I do have some permanent nerve damage in my feet. Is your B supplement a combination of the different B vitamins? Watch out for B6 as if there is too much it can cause neuropathy and it is difficult to clear it from the body. Most likely you aren't getting enough B12 in your supplement to stop the deficiency. Most oral B12 supplements are high-strength, at least 1000 mcg or more.



Joy bby said:

Hi graciousgeekgirl! Thank u for your reply! How do the test the b12 levels? Have u found relife with treatment? I have been taking b vitamin supplements for a month and haven't felt a difference in my pain. I'm scheduled to get a bunch of nerve testing done by a neurologist. I hope I am taking the right steps to find out what is the cause/treatment. God bless u!

graciousgeekgirl said:

Hi Joy,

Sounds like you have both Raynaud's and EM. I have both, as well as pernicious anemia (PA) which caused a B12 deficiency. Before my PA diagnosis I had very sore feet for about a year, which I'm quite sure was caused by a B12 deficiency.

B12 is required for nerve health, producing red blood cells, and creating DNA so it is essential for good health. If you are B12 deficient it can cause nerve pain, numb or tingling hands and feet, fatigue, depression, hair loss, ridged fingernails and/or loss of "moons", enlarged tongue, palpitations, memory loss, and other symptoms.

If you have had some of those symptoms in addition to your sore feet, get your B12 checked. Doctors often don't think to test it. In many countries including the US and UK doctors use a very low bottom end of 200 pg/mL for the normal range. If your B12 is in the gray area 200 - 450 pg/mL (147 - 332 pmol/L) it should be investigated further with more tests (MMA and homocysteine) since neurological symptoms are known to occur within that range. Don't take any B12 supplements (some are available in massively high doses) because it will skew the results and you need them to be accurate if you are deficient.

Hi



Joy bby said:

Hi Flame! Thank u for your reply! I am scheduled to get some nerve testing done this month. Do u have plantar fasciitis or a nueroupathy? My heel/ Achilles pain also came gradually and has not gotten any better. The docs think I have a nueropathy. Do u still suffer from foot pain? Please let me know. God bless you


Flame said:
Hi there
Your feet do look like mine when they get hot Same with the hands it can also affect the face and ears also knees . Mine starred with plantar faciitus it was a slow progress I had no pain at first just flare ups and only in one foot now it has progressed to nerve pain . Have you seen a neurologist it is a rare disorder so some docs don’t know anything mine was good . The cold sounds like Raynolds disease you can have this with EM . If you elevate your feet do the feet turn back to white ? I use cool gel ice packs wrap them in tea towel and then around the feet. Take care about what you eat no spicy and no alcohol . Look up Dr J cohen he has EM and has some good ideas and has helped him self a lot . If you can stay cool this will help winter is better for us . I always wear sandles and in the winter no socks in my boots , also take ice gel packs where ever I go . Hope this helps and good look .

Hi hope you are ok yes my feet still hurt . My EM probably was coursed by sciatica I have secondary EM you need to know if you have primary or secondary it makes a difference on the treatment that will work you do get nerve pain and numbness also
Talk later good luck keep moving that will help



Flame said:

Hi


Joy bby said:
Hi Flame! Thank u for your reply! I am scheduled to get some nerve testing done this month. Do u have plantar fasciitis or a nueroupathy? My heel/ Achilles pain also came gradually and has not gotten any better. The docs think I have a nueropathy. Do u still suffer from foot pain? Please let me know. God bless you

Flame said:
Hi there
Your feet do look like mine when they get hot Same with the hands it can also affect the face and ears also knees . Mine starred with plantar faciitus it was a slow progress I had no pain at first just flare ups and only in one foot now it has progressed to nerve pain . Have you seen a neurologist it is a rare disorder so some docs don’t know anything mine was good . The cold sounds like Raynolds disease you can have this with EM . If you elevate your feet do the feet turn back to white ? I use cool gel ice packs wrap them in tea towel and then around the feet. Take care about what you eat no spicy and no alcohol . Look up Dr J cohen he has EM and has some good ideas and has helped him self a lot . If you can stay cool this will help winter is better for us . I always wear sandles and in the winter no socks in my boots , also take ice gel packs where ever I go . Hope this helps and good look .


How long should I go with out the supplements before I get b12 levels checked? I am very sorry to hear u have permanent nerve damage. Has the b12 treatment got rid of the pain? I am currently taking a super b complex supplement with 20mg. B6. I will stop taking it. Do u have any tips, or diet recommendation? Thank u for being so helpful. God bless
graciousgeekgirl said:

B12 is a blood test. It's not normally ordered by traditional doctors so you'll need to ask for it. Really ought to be part of the CBC full blood workup. Since you have supplemented, you may have a higher B12 level which could put you into the normal range according to your doctor. Are you able to go without the supplements for a few weeks before getting your B12 tested?

I am better now with B12 treatment, though I do have some permanent nerve damage in my feet. Is your B supplement a combination of the different B vitamins? Watch out for B6 as if there is too much it can cause neuropathy and it is difficult to clear it from the body. Most likely you aren't getting enough B12 in your supplement to stop the deficiency. Most oral B12 supplements are high-strength, at least 1000 mcg or more.



Joy bby said:

Hi graciousgeekgirl! Thank u for your reply! How do the test the b12 levels? Have u found relife with treatment? I have been taking b vitamin supplements for a month and haven't felt a difference in my pain. I'm scheduled to get a bunch of nerve testing done by a neurologist. I hope I am taking the right steps to find out what is the cause/treatment. God bless u!

graciousgeekgirl said:

Hi Joy,

Sounds like you have both Raynaud's and EM. I have both, as well as pernicious anemia (PA) which caused a B12 deficiency. Before my PA diagnosis I had very sore feet for about a year, which I'm quite sure was caused by a B12 deficiency.

B12 is required for nerve health, producing red blood cells, and creating DNA so it is essential for good health. If you are B12 deficient it can cause nerve pain, numb or tingling hands and feet, fatigue, depression, hair loss, ridged fingernails and/or loss of "moons", enlarged tongue, palpitations, memory loss, and other symptoms.

If you have had some of those symptoms in addition to your sore feet, get your B12 checked. Doctors often don't think to test it. In many countries including the US and UK doctors use a very low bottom end of 200 pg/mL for the normal range. If your B12 is in the gray area 200 - 450 pg/mL (147 - 332 pmol/L) it should be investigated further with more tests (MMA and homocysteine) since neurological symptoms are known to occur within that range. Don't take any B12 supplements (some are available in massively high doses) because it will skew the results and you need them to be accurate if you are deficient.