Please help me diagnose!

Welcome New Member Introductions
1

Hi everyone. I hope you all having a good day. Let me introduce myself. My name is Abdullah and i am 18 years old male. I signed in here because i need help. I am having some symptoms similar with EM patients but i couldnt get diagnosed. I have been in several specialists but they dont even know what EM is. I am livin in Istanbul so i cant see the doctors you have recommended.(Sorry for my bad english. Its not my native language) Okay lets talk about my symptoms.
Like all of you guys my feet and hands get really hot and red in hot weather. Especially when i am taking shower my feet burns so much that i have to keep my showers really quick. And when its cold i feel really good but my feet not being the colour they should be. They turn purpleish in cold. So its really rare my feet is in their normal colour. But i have these symptoms as long as i stand up. When i elevate my feet burning and redness goes away. My hands in the other hand they get hot and red but i dont feel pain. And as soon as i elevate them its gone. So here is couple of photos.

In this photo my feet are normal. This is a rate time for my feet. Even i dont have any symptoms in this photo my toes look little red anyway. So here is a photo when i am having symptoms

IMG_8120.JPG2448Ă—3264 2.24 MB

And i dont know if you are experiencing this but especially in hot times like shower pain and redness goes up to my knees. Maybe little higher.
Lets check my hands

In this photo my hand is in a good mood. Its not hot not cold. Normal tempature. But as you can see the ends of my fingers are always dark.
And this is a photo of same hand having symptoms
Also sometomes it happens differently in my feet like
Left side of the foot is hot while right side is cool.
Also i am experiencing hotness in my ears and face sometimes. And because my feet and hands are getting hot they are sweating a lot. And they get swollen.

So please let me know what do you think. Do you having same things ?

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Normal feet

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Cool hands

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Hands when hot

IMG_8113.JPG2448Ă—3264 1.76 MB

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Foot when left is hot but right is cool

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Your pics are VERY similar to what I see in my hands and feet. My neurologists thought I might have Dysautonomia and a few other illnesses for a couple years, we did every test they could think of. Nothing showed up. After all of that, no relief and a new dr I wasdiagnosed Erythromelalgia.
Best of luck to you finding help and a good dr.

7

Have you considered Lyme disease? It’s caused by pathogens carried by ticks and may be on the verge of becoming a world wide epidemic. In the US the Center for Disease Control (CDC) has revised their estimate to 300,000 new cases every year, way up from the 30,000 that they originally thought a couple years ago. Lyme disease is in Europe and the UK as well.

Have you been in any areas (like hiking in woods) that have ticks, even several years or more ago? Did you ever have a bull’s eye rash (many don’t)? Episodes of flu-like symptoms and night sweats?

I was diagnosed with EM two years ago and my symptoms of dysautonomia slowly worsened and I got very, very ill even though I didn’t look sick to others. Finally figured out it probably is Lyme, think I got bit around 8 years ago. I’m now seeing a Lyme literate doctor who put me on antibiotics 3 weeks ago and I’m starting to get better.

Late stage (chronic) Lyme is notoriously difficult to diagnose and treat. The standard ELISA test misses over half the cases. Traditional doctors won’t run the more sensitive Western Blot test unless the ELISA is positive (this is the CDC protocol which is outdated). Treatment usually requires long term antibiotics; some doctors treat with herbs. If you suspect Lyme you’ll need to find a Lyme literate doctor.

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The redness and burning is very likely erythromelalgia. Hot water provoking symptoms is one test. It sounds like your showers cause the symptoms.

You should also consider Reynaud’s because when you get cold, they turn purple. This might mean the blood leaves the area. Reynaud’s can be bad when your tissues don’t get enough blood. So try to keep your hands and feet from getting too cold until you find out if you have it.

Reynaud’s is related to Erythromelalgia, genetically also. So some people have both.

Many people now believe erythromelalgia is a condition and a symptom of something else that is causing it, unless it is the genetic type, or primary erythromelalgia.

Many times it is caused by a problem with blood. Your doctor’s might be willing to run blood tests for possible causes. If you find the cause, they can sometimes treat the cause. Sometimes.

I also had no doctors who had heard of it for 8 years. Then I eventually found one. But most do not know about it. If you research the causes and then ask your doctor to help run tests for them, especially the myeloproliferative diseases. That is where the doctors who know about this disease usually start.

Also, this online group helps a lot with ways to cope.

I really hope you find medical help and also find your own ways of dealing with this illness.

You aren’t the only one trying to figure this all out, that’s for sure. Luckily, the people on here are good at helping.

9

Yes, Cindy talks about Raynaud’s. I’m 64 years old and have Raynaud’s since I’ve been 19. Last year symptoms of Erythromelalgia presented. I’m suffering just like you Yilmaz. I also have MS and other autoimmune diseases. Doctors think there may be some Lupus symptoms too.
I have neuroma’s in the balls of my feet for over 6 years and that happened before the EM showed up. There’s arthritis too! I am disgusted as no one knows what to do. Neurologist says it’s my MS causing it, as the autonomic system is involved according to him. But conversely my Raynaud’s is not caused by MS, supposedly. I got tested for Fabry disease for free from a doctor who studies that disease. It can cause these symptoms. I was negative for that. I did my own research for it. My neurologist says that’s the best thing to do. I am frustrated and tired as I have lots of fatigue from the MS and muscle pain. I have no tolerance for the chores of the days. I can’t go with my grandkids to the beach or vacation. I feel so bad, they want me to go.
I used to cook and have holidays here for the family, even with the MS. The neuromas in the feet are acting up with the EM. The pain never goes away. The MS is causing neuropathy in the feet too. Sleeping is tough as the I am ice cold in the feet while warm and the ice cold runs up to my shins the past few years. Doctor at Hospital for special surgery say that is from the MS not the Raynaud’s. Trying to explain this to friends and family is so difficult. I don’t know shat to do. I live near the greatest city in the world, NYC and know one has any idea what to do. My rheumatologist has me on aspirin therapy. Not really sure if it helps. I also have Relapsing Polychondritis, rheumatologist put me on methotrexate. I came down with strep throat after two weeks on it. I stopped it. It breaks down immunity to bacteria. Not good for the MS.
What to do I don’t know. Yilmaz get the Lyme test. See if you have that.
Good luck. I’m sorry you’re suffering. God bless you and stay mentally strong. Listen to music you like and try to enjoy things you like. It helps to distract yourself. That’s what I do. Pray if you’re religious.
Sorry I went on and on. Just want you to know you’re not alone. Come here again and let us know if you make any headway. Your Engish is great by the way!

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Yes, Cindy my doc tested me for myeloproliferative diseases. Negative. I read that those tests should be repeated. Is your doctor in NY? I’d like to see him/her. Thank you and best wishes for a recovery or answers for you.

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Hi Abdullah: I was diagnosed with EM 11 yrs. ago at Stanford University and my feet react to everything you describe in yours. I feel fortunate that I do not have it in my hands. I find it necessary to soak my feet in ice water several times a day for 10 min. (no more as it can be damaging to the tissues in your feet.) I even wake up in middle of night and have to ice them and then it is difficult to fall back asleep. You are young and hopefully they will soon come up with an answer and successful treatment for
this awful disease. My very best wishes to you and that you will find some relief soon. Granny Pat

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Thanks to all of you for replies. Its weird but i actually feel nothing at nights. My symptoms are never happening when iam sleeping so thats odd. I want to ask did any of you seen some good effects of using asprin? Should i try asprin ?

13

Hello
I just wanted to say that I have the same symptoms as you - I was diagnosed with EM at St George’s Hospital, London UK. Like you, I do not have symptoms at night and I think it’s because my feet are elevated ie horizontal. Warm weather/rooms and warm/hot water cause my EM flares. To get relief I elevate my feet and or run icey cold water over them. I was also prescribed Gabapentin which does ease neurovascular pain for many people.
Take care
Cat

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Hi Ann,
I have EM and other autoimmune issues and the fatigue was awful. My neurologist prescribed nuvigil which is an ADHD medicine. It allowed me to at least be able to do daily tasks, go to parties, etc! He told me it’s very commonly prescribed for people with MS, Parkinson’s and many other autoimmune issues. I would ask your neuro or doctor to let you try it. Vyvance works even better but he may not prescribe. I’m on 150 mg of nuvigil for last 3 years. I either need to up the dosage or change to another kind of same drug because, as it still works, I think I’m becoming a little immune to it. It changed my life! Everyone on this site suffering from fatigue should talk to their doctor.
Good luck to you and everyone!
Robyn p

1 Like
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Thank you for your help Robyn

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Thank you for your respond . graciousgeekgirl . I still couldn’t get diagnoised but thinking of running some lyme disease tests. I have couple of questions for you. Is it possible to have only hot burning feet and hands and not other sypmtoms that lyme patients have ? What kind of symptoms did you have other than burning stuff ? And i hope you’re better now…

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Hi Yilmaz,

I had a couple other symptoms before EM. First I had Raynaud’s (fingertips turned white in the cold, painful warming them up). Then nothing happened for a long time. Then about 5 years later I had trouble with painful neuromas in my feet (swollen nerve between 3rd and 4th toes). EM started 6 months after that, though I didn’t know what it was at the time.

Eventually it was discovered my B12 was really low. Getting frequent B12 injections helped my EM but I continued to slowly worsen over the next 2 years. I had mostly neurological symptoms, affecting my autonomic nervous system (ANS). The ANS controls body temperature (mine ran about 1 deg F below normal all of the time and I was extremely sensitive to heat and cold), blood pressure (mine was low, around 90/60), sweating (I didn’t sweat below the waist), orthostatic intolerance (blood pressure dropped when I stood up, so bad that several times I literally had to crawl from bed to the bathroom else I would faint). I had other seemingly unrelated problems such as large swings in blood glucose levels, irritability, pains in my legs, migrating pain in my abdomen, and felt horrible all of the time (malaise).

Lyme symptoms other people may have include cardiac problems (weakens the heart, can be life-threatening), musculoskeletal problems (joint pain is common), and various neurological problems (depression, nerve pain, tremors, seizures, legs collapse when walking). Do an internet search, you’ll find a lot of symptoms though unlikely someone has them all.

It took me a long time to think it could be Lyme as I hadn’t read anywhere about symptoms like ANS failure. Lyme affects everyone a little differently, which makes it difficult to diagnose. It often causes neurological symptoms, and EM is a neurological symptom.

If you have chronic Lyme it might not show up in an ELISA test that most doctors order. You may need to get a more sensitive test like the Igenex here in the US. Armin Labs in Germany is where I think Europeans get their blood sent for a similar analysis. Unfortunately the Igenex tests are quite expensive so I expect the ones at Armin are costly too. There are no perfect tests for Lyme, the ones we have give many false negatives. Good LLMDs can diagnose based on clinical symptoms. They know the tests aren’t sensitive so if you test negative for Lyme don’t rule it out like I did. I lost over 3 years of my life to Lyme thinking I didn’t have it because both times I had an ELISA test the result was negative. Now I know that test is insensitive and misses over half the cases.

I’m doing better and better every day, thanks for asking. I still have a lot of neuropathy in my feet but I do feel better overall. My EM has greatly diminished and I’m not as lightheaded when I stand up like I once was. I’m confident I will eventually fully regain my health. I’m continuing to take antibiotics along with lots of probiotics to protect my GI tract (long-term antibiotics kill off the good bacteria in the gut). Treating Lyme can take a year or more of antibiotics, the pathogens are never eradicated as there currently is no cure. Two weeks ago I got my test results and I am CDC-positive for Lyme. My doctor also ran a CD57 test, which is believed to be a marker for chronic Lyme. Mine was very low which further confirms I have Lyme.

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18

Thank you so much for your time. I am really glad you are feel better now. Thanks for all the information about Lyme.

19

My doctors are in Utah, and while they have a small understanding of EM, they don’t know what to do about it. They wanted the hematologists to evaluate me, but they wouldn’t see me because my CBC is normal.

Initially, my foot specialist diagnosed me finally as having EM, and my GP now knows a little about it. But besides sympathy and aspirin, and monitoring infections closely, they are at a loss.

I have read there is a doctor in San Diego who has EM himself and does research on it and might be accepting patients. Last I heard, anyway. I don’t remember his name though.