Have officially been diagnosed with Erythromelalgia. Had 4th appt. with Primary yesterday, wants me to stay on Gabapentin another 2 wks and check back in. If no relief by then he is increasing dosage. Nervous because I have had so many side effects already from it. He did more blood work and said I need to have it done periodically so he can keep an eye on things. Still waiting for the results of a biopsy I had done for large red patches on both legs...no idea what is going on there.
Heading into Boston to see a Dermatologist specialist today. Have my list of symptoms I have been experiencing since this came on. Also the side effects from the drugs.Feeling stressed and a little nervous....
Any advice? Am I forgetting anything so I am prepared for my visit? She will have full access to my medical records as well.
Sounds like you have things under control Kylesmom.
I see you have written your symptoms and side effects out for your appointment. That is very smart! When the appointment comes it is very easy to get distracted and forget to mention things so it is very important to have everything you want to be sure to let them know written down so you don't forget.
Just relax and try not to stress. Do you know if the new Dermatologist is familiar with EM? If you don't know for sure I would probably bring some printed information on the basics for him so he can better help you. The brochure on TEA site is a great one to take to new doctors.
yes the Dr. was familiar. However, after reading my 4 pages of what has been going on with me...from dr. visits, to a full page of symptoms, reactions to meds....she said "I'm not sure you have it....you say your whole body is in pain and this usually just occurs in the hands and feet". It has affected my whole body...hands, feet, legs, arms, face, lips,scalp etc.... Well, at this point I started sobbing because I am tired and in pain 24/7 and now I am being told by her it is not Erythromelalgia.
Anyhoo...they then said they will be setting me up with a Neurologist at the same hosp. that has dealt with these kinds of things. When I got in the car I called my derm. office that originally made the diagnosis to keep them updated, The girl I have been working with there (who is beyond wonderful and supportive) said, "um, we just faxed them the results of your skin punch biopsy which says 100% you have Erythromelagia......isn't that Dr, gonna feel stupid now"....that did give me a good chuckle...which I needed after my 20 minutes of sobbing,
So, I am still taking the Gabapentin (with no relief yet...but my primary wants me to try 2 more weeks, and then may up the dose), I will go see the Neurologist when the appt. is made, and then go from there.
I have already realized that people who don't have this...friends, family, co-workers,...just can't even understand the pain, how it affects every minute of my day. Mine never subsides...it is always there. I never have a "good" moment...I have not horrible moment, and horrible moments, 24/7. I have broken out in tears at work twice...embarrassing.. Have to say no to going out with friends cause I am too exhausted, I just keep telling myself it could be worse, and trying to suck it up and proceed with my life!
Hang in there kylesmom.
I’m glad they returned to you that it is EM. Yes it is USUALLY in hand or feet but it can occur all over including internal such as vaginal and eyes , throat. I myself have it all over including eyes and I know others that have it all over. Just because something isn’t USUAL doesn’t make it not so.
There is hope of yours getting better and worse at times even without meds that help. I have had this about 4 years. I have had times when it is 24/7 and all over and better times too but never gone. I am currently moderate. I can’t walk more than a few minutes at a time or any activity but as long as I stay in my house I keep between 61 and 63 degrees I have pain free time during the day. The nights have always been worse for me but when you are used to pain 24/7 you learn to appreciate the many day time hours of little to no pain. That is just my EM others have actually gotten much better and return to normal life although there is no cure at present. Keep up the gabapentin. If that doesn’t help just move on to one of the many different treatments you will find people posting on with the help of your doctor and hopefully you can find the right one to help you.
Take care,
Alina
May I ask what did they find on your skin biopsy to confirm your EM? I haven’t heard of confirmation by skin biopsy before and am curious what findings led them to say yes EM .
I have EM all over and have had a skin biopsy but it just came back with chronic urticaria and lymphatic infiltrate or something or other. They just said I have pernio and chronic inflammation in my feet. I was diagnosed later with. Em but not from the biopsy.
Thank you
Alina
Alina Delp said:
Hang in there kylesmom. I’m glad they returned to you that it is EM. Yes it is USUALLY in hand or feet but it can occur all over including internal such as vaginal and eyes , throat. I myself have it all over including eyes and I know others that have it all over. Just because something isn’t USUAL doesn’t make it not so. There is hope of yours getting better and worse at times even without meds that help. I have had this about 4 years. I have had times when it is 24/7 and all over and better times too but never gone. I am currently moderate. I can’t walk more than a few minutes at a time or any activity but as long as I stay in my house I keep between 61 and 63 degrees I have pain free time during the day. The nights have always been worse for me but when you are used to pain 24/7 you learn to appreciate the many day time hours of little to no pain. That is just my EM others have actually gotten much better and return to normal life although there is no cure at present. Keep up the gabapentin. If that doesn’t help just move on to one of the many different treatments you will find people posting on with the help of your doctor and hopefully you can find the right one to help you.
You are wonderful for giving all of your advice and sharing your story with me, and I am most appreciative. Yours sounds so very severe and I am so sorry to hear that!
You are an angel for taking the time to give support to me and others, while you are in so much pain yourself!
I will have to see if I can get a copy of the results. I was not in that office today so I didn't see them. I will let you know though if I am able to get more details...which I should be able to since they are my medical records! I know he had already diagnosed me with it just from my symptoms b4 getting the results back...so perhaps there as something in there that solidified the diagnosis...that's my guess. Will get more info asap! I did find online tonight that diagnosis can be made with a skin biopsy...let me see if I can find it again...
Alina Delp said:
May I ask what did they find on your skin biopsy to confirm your EM? I haven't heard of confirmation by skin biopsy before and am curious what findings led them to say yes EM . I have EM all over and have had a skin biopsy but it just came back with chronic urticaria and lymphatic infiltrate or something or other. They just said I have pernio and chronic inflammation in my feet. I was diagnosed later with. Em but not from the biopsy. Thank you Alina
Alina Delp said:
Hang in there kylesmom. I'm glad they returned to you that it is EM. Yes it is USUALLY in hand or feet but it can occur all over including internal such as vaginal and eyes , throat. I myself have it all over including eyes and I know others that have it all over. Just because something isn't USUAL doesn't make it not so. There is hope of yours getting better and worse at times even without meds that help. I have had this about 4 years. I have had times when it is 24/7 and all over and better times too but never gone. I am currently moderate. I can't walk more than a few minutes at a time or any activity but as long as I stay in my house I keep between 61 and 63 degrees I have pain free time during the day. The nights have always been worse for me but when you are used to pain 24/7 you learn to appreciate the many day time hours of little to no pain. That is just my EM others have actually gotten much better and return to normal life although there is no cure at present. Keep up the gabapentin. If that doesn't help just move on to one of the many different treatments you will find people posting on with the help of your doctor and hopefully you can find the right one to help you. Take care, Alina
I've also heard that EM 'only' happens in hands and feet from some docs. Despite my vascular consultant standing firmly by his diagnosis of me having EM. I do get frustrated with some docs at times. It's usually because they have stepped outside their area of specialty. I'm glad to hear you were vindicated in the end but sorry that you were made upset and felt such distress. I've been distressed by some doctors in the past. It's not nice. And they only have to do a bit of surfing of the web to find out that EM is NOT confined to hands and feet in all cases.
I would be interested to know how they diagnosed EM with a punch biopsy. Perhaps it was a 'diagnosis by exclusion' as well as observation on your doc's part.
Meanwhile I hope the gabapentin kicks in for you soon.
I have learned by living with EM for a while that the doctors often simply don’t know much about EM.i have seen one of the top docs in the world on EM who writes quite a bit of research on it and he believed my raynud 's / pernio / Levido reticularis was caused by my cooling myself too much. I tried to tell him I had these symptoms several months before any burning started but it seems as if most / all doctors just don’t know much about it even him ! Our appointment was also rushed as he was running late so who knows what else was misunderstood. They don’t know nearly as much as a patient who lives with it knows. Some doctors just don’t like to admit they don’t know everything. As long as you find one that is willing to admit that and work with you experimenting with different treatment options and willing to read the current research that you sometimes have to be the one to bring in. That is the best Doctor you can find for treatment of this.
I am so blessed to have found a team of doctors that are willing to work with me this way. The long road getting here dealing with doctors who don’t believe you or just don’t know and can’t admit that was a very distressing place. Looking back it was one of the hardest parts of all of this. All i can say is if you are
a. Patient reading and havent found tbe right doctor for you don’t give up and keep looking until you find a doctor that is right for you and you are comfortable with. One who really listens and is willing to learn new things. If you are still going through the doctor distress take a deep breath and try your best not to let them get to you as I know for many of us that alone causes more flaring. Just walk out with your head heald high after being called crazy and say… next! Till you find the right one. I know … Easier said than done. I Only Wish I Had These Words Of ENCOURAGMENT As I Was going through this before I found Bens Friends.
Take care,
Alina
I don’t know whether congratulations or commiserations are in order here! Good to know one way or the other anyway kylesmom.
I expect someone has mentioned this already but photos are a good thing to take with you to hospital appointments. I found doctors dismissive of photos on iPad or phone and of course these can’t be put on file but printed out photos attracted a lot more interest.