Do you guys think I could have Erythromyalgia?

When I got Lyme disease almost two years ago, all of my symptoms went away after antibiotics except that my knees would turn red, feel hot to the touch, and feel like they were burning.

Since then, it has started to happen on my toes, and in specific spots up my legs: ankles, inner calves, knees, and up the outside of my thighs to two big spots near my hips. It also happens in my cheeks and sometimes in my fingers. It basically looks likes a sunburn but it happens whenever I stand up for too long, walk a lot, or sometimes when I get stressed out, and it goes away almost immediately after I sit down or ice it. It doesn’t hurt that bad, but it does hurt a bit and feel like it’s burning, plus I have an unusually high pain tolerance.

I have been to my pediatrician (I’m 15), a physical therapist, and a rheumatologist. The rheumatologist said I probably had pain amplification, or something wrong with my nerves. My MRI, X-rays, and blood tests all came back normal so if that affects it… I will try to post pictures later, but I don’t have any now. Do you think this could be EM? It seems like it, but I get it in a lot of spots and it isn’t severe pain, so maybe not. What kind of a doctor should I go to to get a diagnosis? I live close to Boston Children’s Hospital and i have insurance, so I have access to basically any kind of specialist.

Also, I think I have poor circulation in my legs, because I got a cut on my leg like 6 months ago and it took a super long time to heal, left a weird scar and it’s still pretty swollen and completely numb in they spot. The doctor said it’ll go away eventually or maybe not, but it’s not a big deal. Anyway, sorry this is long and thanks so much for helping! It will be a huge relief if I can finally figure out what this is.

Dear Rovermonkey,

at LWE we can not give you medical advice or diagnoses. Whilst your symptoms sound very familiar to EM it is advisable that you see a Dr and access treatments to help you better manage your symptoms. EM does not show up in any known blood tests.We all prove negative- dont worry ;) Also at the top of the discussion forum there is a post 'information for new members'. , which may be of help to you. The Xenon research study might be of interest - many of us have applied. We have a Dr database. Are you Boston? We can look to see if we have any EM aware Drs in your area. Please rest assured we are all here to support you. You are not alone.

Big hug

God bless

mads x

I myself have spots of burning all over my body and it can range anywhere from discomfort to severe pain. The fact it starts with increase in temp weather it be ambient temp or an increase due to stress or activity and gets better with rest and cooling is indicative of EM but your doctor will have to work with you to find a diagnosis. Some different doctors that treat EM are ....Rheumatologists, neurologists, Pain specialists, Dermatologists, Internal medicine and primary care. I know it is a long list but there is no single specialist that treats EM. It is usually any doctor willing to learn about it and experiment with the different treatment options available. Keeping in mind sometimes you have to be the one to bring the information to your doctor if your Doctor isn't familiar with it.

Take care,

Alina

How are you, Rovermonkey? Any updates from your doctors?

Em is a syndrome. That is it's a set of symptoms. If you have EM you have a situation usually where the extremeties usually the hands and feet show swelling and burning. And it's often in the feet. It may move the the hands as well and may move up from the feet into the lower part of the legs.

The causes are many, but it's a symptom or kind of side effect of an underlying disease that can be treated or is something you're dealing with. That would make it secondary EM. If it's EM. And diabetics, Lupus, Cancer sufferers or others may get EM as a result of their disease, as a side effect of their disease. See Wikipedia for more info on that. It may also be a result of some other problem that happened, but this is a rarely reported thing.

Experts may even disagree on whether you have EM or not. They may take different tests. some may be geared toward nerve conditions that may cause it others may be geared toward changes that might happen in some EM cases where the cells of the feet for example have been changed and show a different kind of cell morphology. Since it's rare it may be difficult to get a consensus from doctors and of course one might not even have it and just imagine having it, but have some other problem or issue.

Some of the more rare things that can cause EM or something like EM that have been listed over time, these are early quotes from much earlier EM research.

From a Fungus infection, or mushroom poisoning.

From a scratch from a cat. . . this is a rare report and may not be verified by medical reports.

From a side effect from various drugs.

From vascular constriction of the small vascular blood vessels, the shunting of blood.

An reaction of the body where it's trying to send blood to a place where it's not needed, in other words the bodies ability to automatically adjust and send more blood to muscles that needs it is somehow damaged and the messaging is sending blood where it doesn't need to go causing swelling, heat and pain.

Tied with and a part of a neuropathy, which seems to be the case with some who have a cycling of chills sharp pains and numbness (more like Neuropathy) mixed with sessions of EM flares.

As a result of drugs, once again I'm mentioning this as some have pointed out side effects. In my mom's horrible EM case, which is severe, she had a mild form of EM it would seem or a precursor to it as a side effect of Xanex, but then when she took Risperdol, the full blown debilitating flares began which basically wiped out our normal household life.

An injury also for some they developed EM when breaking a toe or doing damage to a foot and EM like symptoms would happen on that side. Early on reports on the internet would state that some had it on one side as a result of an injury and it was rare than people had it on both sides. Some theorized that it might start on one side as a result of an injury and then cycle to the other side, which to me seems to be strange, and almost impossible. Those who had it on both sides were not seemingly in the majority from some early reading research back in 2002 that I did, but it seems that now at least what I see and read out on the net. . . I'm not a medical professional so take my advice and thoughts as only representations of what I've heard and is basically comments from a layman. . . at first I read about EM happening mostly to one side or the other. With more research and hearing about it, it seems that the majority of sufferers at least here on this board have it on both sides.

Doctors will likely rule out a bunch of other things. And as you treat EM or it's symptoms other things from your lifestyle changes can cause other problems. So you can if you have a severe form of the syndrome develop other problems from your life adaptation and coping with EM.

It sounds like you're having a minor reaction and you're lucky actually compared to the more severe cases. I'd say be careful and cautious with your approaches and see doctors. This is just my advice as a layman. Don't be to gun ho, to take the most medication and exotic medications that could cause other side effects. In my mom's case she seems to have gotten EM from side effects from drugs or perhaps being taken off drugs. Depending on the theory one wants to belief. In all cases, it seems the consensus from doctors is her nerves are damaged and it can't be cured.

I wouldn't be in to much of a hurry to claim EM or think it's EM. Take your time and let doctors propose different diagnosis and solutions and be aware that with more complications and side effects one may have side effects that seem to be EM or some other rare disease and it might not even be that. EM is not really a disease it's a syndrome or group of symptoms that happens with a common set of symptoms. As it cycles one can claim to have it. For example my hands were almost frostbite and I used them in the cold and my hands swelled up and got red. They seemed to be very EM like and I took a picture of them, kind of panicking one day. But later when it went down I realized it was just a normal reaction to this other stimulus and my EM fears were just something in my mind that day, imaging I came upon proof of family genetic based EM that might be in my genes without a genetic test.

http://www.livingwitherythromelalgia.org/profiles/blogs/maybe-helpful-info-for-some-sufferers

Check out this other thread here which talks about Small fiber neuropathy (SFN) among other problems that can cause Burning Foot Syndrome. If the article seems difficult to understand. . . it's because it is. And someone could have burning foot syndrome and not have that disease. And someone could test you for this SFN and see the test as negative and have the opinion that you'd don't have EM or burning foot syndrome while others might say you have it.

Here's an example of a "test" in a document where a patient had an intern or doctor, one of many state, or seem to state, that the person didn't have burning foot syndrome. And that was from a test that would show SFN. This was one of many opinions and different doctors and departments who saw the patient had a different idea as to what the patient had.

If those notes look confusing to us as a layman, imagine how you'd feel when you show those notes to a "pain clinic doctor" and he says something to the effect of: "I have no idea what these notes are referring to, this other doctor is more trained in that than I am". So even doctors can disagree and not know everything. That doesn't mean we as laymen know something that they don't know so we can diagnose ourselves. We will just go to different doctors and try to get better and hope that the treatments they give do no more harm and perhaps help with the healing process.

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Thanks Watchman. Your explanations are very clear.

When I got many different suggestions from different doctors as to what was causing my symptoms I was reminded of watching weather reports for next day on TV channels here in the UK. Invariably they were a bit different from each other and I would decide to believe the one I liked best and go to bed happy.