Does anyone experience burning and pain without redness? Reading all the accounts, made me think if I have diagnosed myself correctly with EM. I just came accross Burning Feet Syndrome and I believe it matches better my symptons.
Can someone explain relation between EM and Burning Feet Syndrome? Your input will be very appreciated.
I'd never heard of BFS until now so just googled it. There are lots of similarities to EM as far as I can see, both causing hot painful feet. I sometimes have flares without the redness, sometimes without swelling but ALWAYS with pain. I think maybe this is something you should ask your doctor as they will be in a better place to advise you.
ps The medication it mentions seems to be the same as that used with EM sufferers too..!
If the burning and pain is in your feet and hands and there is no redness I wonder if it could be peripheral neuropathy. That is what I was told I probably had until I described the bright red color and swelling of my hands -- that was when it was quickly suggested I might have EM.
I have burning without redness but I have it in my hands also I have been diagnosed with em by a neuromuscular doctor
Dale
How were you diagnosed? So far I've only had a suggested diagnosis by my Rheumatologist based on symptoms. Rheumy did suggest I go to Neurologist to get tested for possible neuropthies (emg's, etc..) but I haven't done that yet. What kind of testing did neuromuscular doc(what is that specialty called?) do to diagnose you?
Dale said:
I have burning without redness but I have it in my hands also I have been diagnosed with em by a neuromuscular doctor
Dale
There is no lab test a doctor gives you to determine if you have EM. They look at symptoms. Then they give you tests to determine what you don't have. Gout is one condition that can look similar to EM. To much uric acid in your system tells the doctor you have gout. I am a bit confused about the difference between neuropathy and EM. They are treated the same.
Then if the doctor believe you have EM they try to find out where it came from. If it is heavy metals (there is a heavy metal test) they would get you off of heavy metals and clean up your system and you would get better. If you have sugar problems (diabetes) they would try to help your diabetes problem and that just might help your EM. Most people have EM because of something else. However, I was 110% healthy when I got it. Because of the medication and the lack of exercise my health is going down.
The EM site ( http://www.erythromelalgia.org/ ) has lots of information. There are people that do get help and have less flares and some that even have no flares any more. I am looking for that correct medicine. There are a couple other web sites and e-mail services kinda like this one where there are more people involved that know much more about EM than myself. One is a Yahoo group site. You sign up to be on that yahoo group and everyone mails to each other. The other site is a Facebook site. In fact there are a couple Facebook sites.
Hi Maggie,
I have wondered this also. I get somewhat red when I flare, but swelling is a bigger problem for me. The redness is most pronounced when I use the feet or hands while they are in pain and swollen. But, since my hands also experience this, I believe EM is the correct diagnosis. Here’s a good article on BFS that I found: http://www.racgp.org.au/afp/200312/20031218makkar.pdf
Thanks Tullilou for article.
I think that there is no clear distinction between EM, Neuropathy and BFS. I have found this interesting site www.cidpusa.org . It ties all together as a Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) disease, resulting from inflammation and weak immune system.
The swelling/non swelling is such a problem with me that I have lost one toe nail and three more will be gone within a month. And the rest are not too far behind. The weakest point is where the nail is connected to the toe. That lets loose and pretty soon the nail is ready to come off. AND that space between the nail and the toe is filled is dried hard puss. That keeps growing and it is impossible to cut some of the nails as the nails become too thick.
I am trying a cure. It has worked for a number of people (6 that I know of) for at least one year and time was counting and it had not returned to their feet/hands. And that is Prednasone 80 mg/day.......7 weeks at this dosage and then taper off. I do not have the taper formula yet. There are 7 people that are documented that took this relative high dosage for 4-6 weeks and 6 of them were healed (it could have come back after the one year was up). All these 7 people took it within 7 months of getting EM. I am taking it 24 months after I got it. There is a note in my medical file from another doctor to my doctor 18 months ago to try Prednasone. My doctor did not tell me anything about that note. If this does work I am going to be upset that my doctor allowed me to go a year and a half with EM when he had a possible solution.
If anyone wants that study I can dig it out. One is a word document (maybe excel file) and the other is standard PDF.
Anyway.....Prednasone is bad stuff. It is bad for your liver and adrenal glands. It increases your appetite, cause sleep problems. But I am going to try it. It causes diabetes. I am on day 5 for the Prednasone. The first day was wonderful. Day 2-3 were terrible. 4-5 believe I am doing somewhat better. EMis so changing it is difficult to know if this is getting better or just a good day???? I tend to flare 24 hours a day. If I have 30-60 minutes during the entire day when not flaring I would call that a good day.
The univercity of yale is doing research on em if you have a brother or sister or mother or father with em their is a gentic test to see if you have the mutated gene that can cause em the gene is scn9a encoding the sodium channel protein Nav1.7
Dale
I have severe burning on the inside of knees but with no redness. My feet only burn when I'm in an extreme flare with redness, & swelling & have to use fan.
I need to be tested for diabetes because that can cause neuropathy but health is to bad to make it to a test right now. But all the other symptoms I know are EM
On Facebook, on there helpfully EM pages there was a boy who never got redness or swelling but did get burning and pain and it turned out he got tested for Small fibre Neurothopy and had it. I don’t know much about it sorry, it was just similar to someone I saw on Facebook!
I am having some genitic testing done by a doctor in jena germany which so far the first 6 test are negative he said it will be another month before the rest of the testing for gene mutation is done.I have seen two neurologist all the emg's and blood test have come back within the normal range. S o I was referred to neuromuscular doctor who was familar with em HE said I had all symptoms so wanted me to do the gene test but found no one in the USA that does this test that is how I ended up sending a blood draw to germany
Dale
Cilmber said:
How were you diagnosed? So far I've only had a suggested diagnosis by my Rheumatologist based on symptoms. Rheumy did suggest I go to Neurologist to get tested for possible neuropthies (emg's, etc..) but I haven't done that yet. What kind of testing did neuromuscular doc(what is that specialty called?) do to diagnose you?
Dale said:I have burning without redness but I have it in my hands also I have been diagnosed with em by a neuromuscular doctor
Dale