I am guessing that was meant for me...? I have my profile set up so I get an email notification everytime somebody comments on my profile page or responds to a discussion post that I have commented on. Do you have email notifications set up.?
If I want to move from one discussion to the next I go back up to the top of page and click on discussions or blogs, this will bring up all discussions in order that they were last posted on, I find this an easy way to move from topic to topic.
I had only recently made a comment on the photos, If you go to the tab 'my page' at the top of the website it will take you to your profile page, on there you will see all the comments on your photos or profile so hopefully you wouldn't have missed too much. Fingers crossed you will find it easier to use within time, its like anything the more you do it the easier it becomes :)
So glad you have had a positive experience on here with the members
ps, My name is Laura (Cindy had replied previously so easy mistake to make)
I take 2 enteric coated baby aspirin (about 1/2 aspirin) a day and do notice less pain during the day and less severe flares. It’s not a fix-all though, but I am grateful that it helps. I’m tempted to take a full aspirin and see if it makes a bigger difference. I would be interested in learning of others who take aspirin and what their dose is.
I also take 300mg Gabapentin at bedtime and once I get to sleep I am now able to more regularly sleep through the night. (It is usually still difficult for me to get to sleep because of the burning pain.) I have tried higher doses of Gabapentin, with undesirable results, and I won’t take it during the day because it is too relaxing.
I have yet to visit a doctor with experience treating EM.
Laura, I am happy for you that you have one of those great guys. I know they are out there and would love me for who I am and not what the disease makes me. I think it is all just so new to me that I want to understand it fully before I ask someone else to understand it. Basically, I'm not looking for a relationship, but if one falls in my lap, I won't run from it.
For those of you who are taking aspirin - Do you find that it really makes a big difference? I am up to 2400 mg gabapentin daily and it keeps the pain from being unbearable, but I am starting to have "breakthrough" pain again and wondering if adding aspirin would be better than increasing the gabapentin. Like Tullilou, I wonder what the best dosage is on average.
If you are a member of The Erythromelagia Association (TEA), you can request and receive a list of doctors across the US and other countries, recommended by other TEA members. The website is: www.erythromelalgia.org or www.burningfeet.org. Both will take you to their site. There is also up to date news on EM research and medical trials, which I find informative.
does anyone know of a doctor in the Toronto canada area that would recognize this condtion...have seen many specialists in 12 years and none of them have heard of it....have provided me with little or no help. Went to pain clinic at Toronto General hospital and they did not know either.
A derm gave me my dx but he had to look it up in his PDR to be sure. My Rhummy told me to get a hobby, literally, pfft. So hang in there. I agreed with all the above posts and can tell you from my experience and searching what i have found. Rhrums don't know about this disease and docs in general don't "like" patients with diseases they don't understand. The Mayo Clinic at both locations does seem to see patients for this illness. I am in CA and called Stanford. It took Stanford (who has been great btw) five days to find a doc who knew what EM is. He is a vascular surgen who knows the illness and has agreed to see me. I can't speak to this doc as I havent seen him but I do urge you to keep your head up, stay vocal and keep searching until you find help and get relief as what your are going through is real. xo
A derm gave me my dx but he had to look it up in his PDR to be sure. My Rhummy told me to get a hobby, literally, pfft. So hang in there. I agreed with all the above posts and can tell you from my experience and searching what i have found. Rhrums don't know about this disease and docs in general don't "like" patients with diseases they don't understand. The Mayo Clinic at both locations does seem to see patients for this illness. I am in CA and called Stanford. It took Stanford (who has been great btw) five days to find a doc who knew what EM is. He is a vascular surgen who knows the illness and has agreed to see me. I can't speak to this doc as I havent seen him but I do urge you to keep your head up, stay vocal and keep searching until you find help and get relief as what your are going through is real. xo
Just came back from Specialty clinic in Mississauga...supposed to see a Hemotoligist...but he could not help me..barely glanced at me and sent me away...try another specialty...gave me a referral for another Hematologist...back to a new family doctor on Monday...you would think that with computers it would not be such a hard thing to look up and treat. Can't work...feet are terrible, barely walk and hands are getting worse all the time...even have it on the sides of my face..fun...am sure most of you can relate...luckily so far have no ulcers on my feet or other places...guess should be grateful for small mercies.
Hi Libby, my name is Sue and I live in Orillia, Ontario. Have you tried to get refered to Sunnybrook Hospital. It took seven years to get diagnosed and Dr. Scott Walsh from Sunnybrook is my specialist. I have idopathic em and been on many different meds. Now I am on disability and my em affects my feet, hands and ears. I also get what I call blow torch burns where one spot on my leg burns profusly, will last about five minutes. I take cymbalta, keppra and clonzapam as well pain medication. I found that because em deals with the nerves the more relaxed I keep my body the less flare ups I have, so I have with my dr. ok stopped trying to treat the sypmtoms but focus on pain management. I started this in November and in May I see Dr. Walsh and see what happens. I also figured out the no matter what people with em will always have flare ups because everday life whether it be stress, joy or just being to active will cause us pain.
I still have many questions about em, and I am always looking for creative ways to clam flares down. I have bean bags in the freezer at all times and they help cool the outsided of my skin, cold showers are good, but not in the winter..lol I also use a sense of humour about my em. I tell people that I am literally hot stuff..lol also my em has burned the hair folicles on my legs and now I don't have to shave them, and I look like I always have a tan and I don't sit in the sun or have to pay for tanning.... ;)
Again ask your Doctor to refer you to Dr. Scott Walsh at Sunnybrook hospital, I am confident he will help you. Keep smiling and remember you are not alone. xo
I sent a fax to Dr. Walsh and gave him some info on my experience with EM...will get my family doctor to refer me to him if I hear back from Dr. Walsh....still waiting for an "official" diagnosis after so many years. Will see what transpires.
If people have a doctor who has helped them with their EM, can they please post in the "Doctors We Love" section, there's a link on the main page (go to the menu bar at the top of this page, click on main, the link is about halfway down on the lefthand side of the main page). Doing this will allow members who live near you to find someone who can help them. Please only post positive reviews!
You should say what area you are from....someone sent me a name for a doctor in the Toronto canada area...contacted his office but have not heard back yet....
I am on it as well with no change. Please check into RSD as an optional diagnoses. I have posted some stuff on my page about it and it does get confused with EM. Don't be afraid to call different doctors to see if they no of EM, RSD, etc. before you see them. My doctor is a pain management doctor but has tons of patients with these. If you have any questions please ask and I will try to answer them.
I was diagnosed with RSD about 4 years prior to my EM diagnosis… The doctors looked carefully into everything to make sure it wasn’t RSD causing my symptoms. I agree with you tho, it is extremely similar although most of my pain has a different feel about it…
Libby, lots of EM sufferers take a comnination of selected seratonin reuptake inhibitors (SSRIs), which are basically antidepressants, but also suppress the pain signals to the brain. Also, some find that taking calcium channel blockers is also helpful. A realkly useful website is www.burningfeet.org as it has lots of articles about treatment types. Good luck!