Varying Degrees?

All: thanks so much for the warm welcome I received from so many of you. It is nice to know that the terrible suffering you endure has not strained your courtesy! I have joined this board because there is a young lady that I know and coach (she is a state champion- she has also played in a National Championship for a club team- athlete and is slated to play a D1 college sport next fall) who has suddenly developed EM in her senior year. Needless to say, she is wrestling with the pain and varying drug protocols, so she has been out of school for much of the year. She is super tough, but she told me that the pain- when it comes- is unbearable, and it seems like that is par for the course in this horrible affliction. Basically- I am totally committed to helping this child in any way that I can, so I want to learn as much as possible about the disease and I figured friendly folks such as yourselves will be an invaluable resource. So, here comes the first round of what will probably be a litany of questions from me:

- Do you know if there are varying degrees of the disease or is it more or less "You've got this and now you have to deal with it"?

-Have any of you been able to maintain a position on an extremely competitive sports program?

-I imagine the mental toll of dealing with the intense pain and the consequential altering of your entire lifestyle is devastating. FOr my young lady, she has defined herself as an elite athlete for so long that I worry that even a temporary deviation from that will bring about some form of depression. I know it is a very personal question, but do any of you suffer from depression catalyzed by EM? If so, is it possible to mix the drug regiments for EM and depression effectively?

Once again, thanks in advance for your help, and I am very sorry that folks like you have to suffer from such an unknown disease.

Hi MMC, it's great to have you with us. It's wonderful that you're being so supportive of this young woman, that will make a huge difference, as so often with this disease, you are not believed.

On to your questions:

There are varying degrees of EM, it can get better and it can even switch off. While the general rule is that too much exercise makes the condition worse, and can trigger a flare, I think with your athlete there is a very interesting question of what too much is. It has been found that moderate exercise can help the condition, so what does moderate mean in a woman who was an elite athlete? As emotional stress also makes the condition worse, will the emotional impact of not being able to train and compete mean that her EM is actually worse for not training?

I wasn't an elite athlete by any means, but I was a competative swimmer. I've had EM since the age of seven, so I was training after I developed it, so I can't compare the two situations, and say if I was less of an athlete after getting EM. Please also see my suggestion at the end.

The pain of EM and the way that it affects your lifestyle is devestating. For someone who has defined herself as an elite athlete, to suddenly have your body turn against you in this way must be even worse. I share your concern for this young woman but I would suggest that the mental toughness needed to be an athlete may help.

I have certainly suffered from depression due to the effect on my life that EM has had. Fortunately, the drugs used to treat depression are some of the drugs that can be used on EM. The specialist who is treating her EM would know which ones are suitable so if she does develop depression, she should only start medication after any doctor has spoken to her EM specialist.

Perhaps one way to help inspire this young woman is to show her the video of Kate Conkllin. http://www.youtube.com/watch?feature=player_embedded&v=wXKqniqDEhU I would watch it through before you show it to her, as she may be frightened by some of the descriptions of EM, but it can show that someone with the worst EM can still be an athlete.

My heart goes out to this young girl. Am glad you are around.

Some go for many years with just flaring (and pain) occasionally. Others within 5 months have it 24/7. And everything in between.

I have had it two years and am in wheelchair. Oh, one thing. She should only use cold water to cool her feet for a limited time each day. Something like 30 minutes. Cold water breaks down the skin and dries it out. She will get sores/wounds/ulcers on her feet and then those must heal up. Limit that cold water. Use a fan, AC, cold plate etc. Get her feet out of that water.

There are different drugs to help (but not get rid of) the flaring. There are a couple of drugs or methods that have been used to rid the body of EM for 1-2 years or more. But they are not good for your liver, adrenal glads, sleeping, staying awake, eating too much, diabetes and maybe MS. I am on day 7 of one of these drugs right now. It is best to use this when a person has just been diagnosed with EM. I suspect your friend is in that stage right now. And here I am anti-drug and I am pushing. Here on day 7 of a 6 week program of using Prednisone I am felling hope. My doctor knew about this a year and a half ago and he didn't tell me. So I am upset with him.

I assume she has tried the aspirin? I have never heard anyone that aspirin helps but you have to try. I will let someone talk about the other medications that help a little. They are much more knowledgeable than me. Check out: www.erythromelalgia.org/ Jim



To answer your depression question, I’m 17 with severe EM and i have had depression for the past 2 years, professionals told me it was due to my EM causing the depression as I got it just about hitting my teens!. I got put on stuff for my depression, but these made me feel worse so I decided to lay off them!. I attend a psychologist for someone to talk to as with no one around me with EM it’s really hard, because people and family can only understand until a certain extent. And as EM being so rare, it’s hard to find someone you can meet in person. But depression can occur especially with a dramatic change and restriction from doing something you once loved!, even to the strongest of individuals, I was a very strong minded person and I got depression and t defeated me, but now I’m just trying to get over depression and get over all the little thoughts it puts into my head which is proving a struggle.

Hope this helps.

Here is a "copy" of a post I made to a young gal on here a few weeks ago... Also, I played competitive Volleyball, and would consider myself an athlete and miss it dearly.

Permalink Reply by Heidi on January 12, 2012 at 4:39pmDelete

WOW... can I relate. I love reading that there are others of us out here ~~~ And sorry at the same time. I've punched walls because it hurts so badly. Some days, I can't even speak, or think. Currently, I am on NO medicines and decided to stop trying everything. (For about 2 1/2 years) I've tried over 50 medicines. I love to dance, hike, bike, play sports, go to concerts etc. I feel like my life was taken away. I used to work, and can't anymore. I have cried so much. My life is always revolving around the temperature, inside, outside, and taking ice packs with me where ever I go. My A/C bill in the summer is high. I go through about 4 fans a year. I was pissed at "God", for a long time. We were made as emotional creatures, and I decided that it was o.k. for me to feel low. I contemplated not being here anymore several occasions. I have told SO MANY doctors that it has to be impossible for a human being to withstand so much pain and still be conscious. I gave birth naturally too. Loud Music, a COLD house, and distractions help. I also actually "tune in" to the pain, and experience it with full intention, when it hurts so badly, I put my mind into now, I used to push it away. I eat spicy foods, to increase my endorphins, I think that's why punching something helps. I wanted to be an MMA fighter because I know having went through this, I could take any girls best shot, and remain standing. There would be no hit to any portion of my body, that would compare to this. I have written letters to specialists everywhere, and even requested help from colleagues of specialists. I haven't made peace with this as being part of me, I still believe my body can heal itself. Pain can take you to almost Euphoric states of meditation. Some days I can do it, others I can't. I don't plan anything anymore either like Angelheart360 above. My life is different then it was. What I feel like most of all, is that I was/am all alone, and every doctor, even those at Mayo Clinic, do NOT have the answers. I put my "faith" in Pain Docotors, and was crushed to be released from there care because " I was beond treating". This spiritual journey I am on has brought me to myself. I hope seeing this helps you feel like you are o.k. and not crazy, Much Love and Light

Thanks so much everybody for all of your thoughtful responses. It really is hard to watch what's happening- this kid is simply amazing as an athlete and the other day I literally carried her out of school to her mom's car- the drugs and the strain were just too much for her. I know she was embarrassed to be in a position like that, but she texted me (I am also a teacher in the school) that she needed help, so I am glad that she trusted me enough to allow me to see her like that- even so, I know it kills her. However, I think the same traits that helps build elite athletes also , often times, builds elite character and I know her character and I am sure she will persevere. She will be our captain this year even if she cannot take the field as often- it's personality as much as performance. In that vein, I really must commend everyone here: to get such caring, thoughtful responses from so many of you is indicative of immense character. Part of not letting this thing defeat you , obviously, is your decision to suck it up and help others, even when that means conveying incredibly personal info to an absolute stranger: I am awestruck by your altruism. I thank you profoundly

It's wonderful that you are being so supportive of your friend/protege'/student. I'm certainly no athlete, but have had EM for 19 years and will share my thoughts in case something is of help.

I have known people who responded well to aspirin, but only those who later learned they had EM secondary to a blood disorder. Most people don't know the cause of their EM for years, if ever. I'm one of those people who responds well to Magnesium supplements, which means I also have to take Calcium, and I avoid the Oxide form of Mg and had to experiment with dosage (with doctor's approval).

Sports that are done indoors in air conditioned spaces or in water may become comfortable for her, especially if she can wear open sports shoes (example Keen Whispers) or doesn't require shoes (diving, swimming, etc.). I had the impression (maybe wrongly) that Kate Conklin did give up running as a career or ongoing sport, not done on a regular basis, but continued in athletics by working with athletes indoors mostly. I don't remember the details though.

There have been a few people who had complete recovery from their EM, though rare and always unexpected as a response to treatment being tried for it or for something else coincidentally. And Yale is working on an effective pain drug that may prove very helpful, so maybe over the next few years there will be better pain treatment.

Some people move to a cooler climate or to an area where there is less variation in seasonal temperatures. Many end up getting Raynaud's (like me) so a cooler climate may not be the answer. I've heard there's an area of Washington State where the temperature is much the same all year. I can imagine being able to be more active there.

Depression is an understandable consequence of chronic pain and also can be due to being less functional because of the pain or the fatigue caused by battling pain. Some supplements have been very helpful with increasing my energy level, especially Vit D3 and the food form supplements of B-6, B-12 and Folate (ie Metanx). I also take Vit K2 (K-7). Some of the meds for EM can cause depression for me and don't work on my EM anyway. We're all very different with drug response. It may help if she can get Cytochrome P450 testing if she has side effects to the drugs, so she'll know which ones to avoid or take a smaller dose of. Genelex is one source of tests, but mine were done by LabCorps and my insurance paid.

Here is my experience with EM. I was on a business trip and woke up with burning pain in 3 fingers and both feet. By the time I flew home the pain was unbearable and I was put in the hospital. No one knew what was wrong with me and thus started my love/hate relationship with doctors. I was finally diagnosed by an older doctor 7 months later. He suggested that I go to Mayo or Yale. I went to Yale as their waiting list was shorter. I was formally diagnosed there but was not given much information regarding treatment for the disease. I was told, however, to be my own advocate and learn as much about the disease as I could. I joined the TEA and spent 3 years researching everything ever written about the disease, talking to others in support groups and writting hundreds of letters to every talk show host in an attempt to bring attention to EM. No luck there. The medication rollercoaster is different for everyone as is the severity of pain. I have it 24/7. I have been put on so many mediciations including very strong narcotics. 3 months ago I had enough. I am now only taking one mild pain medication and 1 for depression. It is not easy to do this. My life revolves around staying in the house with fans, ac, windows open when cold outside, ect. In my case I know I will never be cured. I have never heard or read ANY researched project where anyone was cured. I also do not know onyone besides Kate that has ever been able to run a marathon. Finding the best doctor who is willing to work with you is the best medicine there is. Tell her to not give up and to educate herself about the disease.

Thanks again to all! I saw the young lady today- she came out and helped me run some clinics. She looked great! She says she is adjusting to her meds- she ran, demo'd some things, and was just her normal, upbeat, delightful self. I will keep you updated and , again, can't thank you enough.

Just to give clarification regarding my statement about having heard of a few lucky people "cured", I should have used the word "remission". Who is to say their EM will not return? But it may not. And as far as I know they were not part of any research study. One was reportedly in India, read it in a medical article online but can't locate it right now. Another remission was someone I knew, not someone I read about. I think hope is important. I'll never give up hope.


emindependence said:

" I have never heard or read ANY researched project where anyone was cured."

I was one of the lucky ones who went into remission for 18 months, I was able to come off all medication and had no symptoms at all. BUT like you say it was not a cure and did come back to haunt me. I am still hopeful that as it's happened before that it could happen again.

Kentuckian said:

Just to give clarification regarding my statement about having heard of a few lucky people "cured", I should have used the word "remission". Who is to say their EM will not return? But it may not. And as far as I know they were not part of any research study. One was reportedly in India, read it in a medical article online but can't locate it right now. Another remission was someone I knew, not someone I read about. I think hope is important. I'll never give up hope.


emindependence said:

" I have never heard or read ANY researched project where anyone was cured."

Laura, on your 18 month remission, what was the cause of the remission. I am on the second week of a Predisone trial. I have seen other trials where people were in remission after one year (with no follow up after one year). And one person after two years with no sign of it coming back. BUT in all cases it was someone that had just been diagnosed with EM (had EM less than 7 months). I am two years with EM and am afraid over the hump for this to possible help me. Laura, in those 18 months of Heaven, what special things did you do? Jim

lauraflora1 said:

I was one of the lucky ones who went into remission for 18 months, I was able to come off all medication and had no symptoms at all. BUT like you say it was not a cure and did come back to haunt me. I am still hopeful that as it's happened before that it could happen again.

Kentuckian said:

Just to give clarification regarding my statement about having heard of a few lucky people "cured", I should have used the word "remission". Who is to say their EM will not return? But it may not. And as far as I know they were not part of any research study. One was reportedly in India, read it in a medical article online but can't locate it right now. Another remission was someone I knew, not someone I read about. I think hope is important. I'll never give up hope.


emindependence said:

" I have never heard or read ANY researched project where anyone was cured."

That's wonderful news MMC! I hope that she'll get a boost from being able to do so much today.

I think the important part for this young lady is that EM can go into remission (on a long term basis) if you develop it young. My specialist told me that your twenties are the important time. I know one person who had it when they were a teenager and it then went into remission when she was about 24. She is in her 40's now and is still fine. My specialist told me that how you are at the end of your twenties is how you're likely to be permenantly. That is obviously only in cases of onset of primary EM under the age of 20. It would seem likely that she has primary EM as she was healthy before it started and she's in her teens.

I would be interested to ask women on here if they find that their menstrual cycle can affect the frequency and/or severity of the flares? I found a slight easing of the severity of my flares when I was put on the progesterone-only contraceptive pill as I was going to try thalidomide. My mother has Raynaud's, as do all my sisters, and she found it went away when she got pregnant, only returning now in her sixties. As she's not a grandmother yet, we've not been able to repeat the experiment!

Thanks Smurf! It was great to see her so upbeat and chipper. I was also thinking that this seems to affect women more often than men..at least there seems to be more women on this board and a lot of the research seems to pertain to females...and, if that is so, I was also wondering if hormones had something to do with it. If you got relief through a contraceptive pill, and contraceptive pills mimic pregnancy and thereby trick the body, then maybe a chemical cocktail that stimulates the release of estrogen, even in men, could help. Of course, I am an English teacher with absolutely no medical training, but if pregnant women get some relief i suppose it may be interesting in a layman's discussion

Hi MMC… It’s great that this girl has got a supportive coach/friend who has her best interests at heart, she’s very lucky to have somebody who wants to learn more to help her. I was really fit when this first struck but was (wrongly) advised to not exercise. I followed drs orders and ended up with my feet up most of the time, put on weight and became deeply unhappy either who I’d become and what I looked like. I was lucky enough to go into remission for 18 months, I got myself back into the gym, lost weight and got back into spin. When I started suffering again I decided to carry on with as much as i could at the gym, still going 6 times a week and pushing through the pain. I do things that can be done even with numb swollen feet and legs, spin 4 times week, boxercise and pilates as well as work out with the health and fitness manager when able to. Boxercise seems to be the hardest on my feet but luckily I can do it bare foot. I wish the young lady loads of pain free days.

Hey Lauraflora. I love hearing this and I love hearing that you are tough enough to push through your pain! That is very inspirational! After talking to Starsmurf and others, I am cautiously optimistic and thinking that maybe this kid will get a remission, but for now there is a lot of drugs in her so I am wondering if that is keeping the disease at bay somehow. Was your remission dependent on a drug protocol or were you able to go off drugs? Thanks for your help.

By the way, for all the wonderful folks following this kid's story- she came to school today for a few hours! She was supposed to check in with me- and didn't and she was supposed to eat in my room because the cafeteria seemed to overload her a bit last week (I told her all her firends could come too of course)- and she didn't show. I went racing around the school and had to jump down her throat a bit, she started to cry and I felt horrible, but she realized that I was in the right. Her parents have let her come back with the understanding that she would be watched, and even though it sucks that's the way it has to be. I can't imagine being 18 and having to check in with a coach as though she was in elementary school, but it beats the heck out of having her fall over somewhere. It made me appreciate even more what all of you must go through- the loss of some indepence, the fear of pain returning which must curtail your activities even when it is not present, and for some of you, never really having the joy of being pain-free for any appreciable length of time. I am actually considering holding a fundraiser through my sport to try to raise money for research or at least raise awareness of this disease. Once again, thanks for all of your well-wishes!

I have never really heard of EM going into remission? To me that’s like as if you don’t have EM?. I can’t exercise at all, the slightest bit burns my feet like mad! I go all light headed and agony if I try gym exercise! Even walking now is proving difficult. I got this at 12 I’m now 17, and all the meds I was on at thè start, worked for about 5 months then my body built up a tolerance to them, every dose I went up it worked for a short amoünt of time. I hope the girls first attempt with her meds was a good choice and works for her because all the hit and misses is tireing. I don’t like the term of because someone can do exercise or hobbies that there any tougher than the rest as we all are tough for living with this day to day! I’m very strong but with severe EM I can’t do nothing, but although I can’t I’m still ‘fighting through this’ sorry, but I just felt like because a lot of us are in wheelchairs due to EM or can’t do anything that because of this were weak I felt like that reading the above!

I hope the girls lucky coming from a fellow teenager I hope she gets the right meds and a good doctor because there so hard to find! Best wishes to her.

Laura, I'd say if you had such a significant remission once it could possibly happen again at some point. I'll be hoping for that for you.

Lauren:

You know, the thing about not having a disease is it's hard to know exactly how the people who DO have it feel. In retrospect, I can see how my comment could be interpreted that way, and please accept my apology: it was not my intention. I am sure that everyone who pushes through this thing is super tough, regardless of whether or not they are able to exercise or even walk. In fact, that is why I started the thread with the title "varying degrees": I was thinking that the disease itself hits harder in some cases than in others, which is why some folks are able to work out and some aren't- I in no way meant it to be a comment on an individual with the disease's toughness. Once again, I am sorry if I offended you and please accept my apology.

Let me be clear. I am not doubting claims of remission . I am just making a very educated and researched statement. I spent 3 years researching, being a member of TEA and following 3 EM support groups and only one person, a doctor who has EM, hassle the statement that he went into remission. Last I heard he is no longer in remission. If the person you know that went into remission was formally diagnosed with EM I beg you to have them get in touch with Dr. Waxman at Yale Medical Center. He is working very hard on research for EM and this type of news may allow him to apply for additional funding to further his research. I will never give up hope for anything that will help us get back even just a small part of quality of life. I would give anything to just have one day to do the things I no longer can. My intention was not to upset you and I am so sorry if I did. Please have your friend contact Dr. Waxman.


Jim Weed Alaska said:

Laura, on your 18 month remission, what was the cause of the remission. I am on the second week of a Predisone trial. I have seen other trials where people were in remission after one year (with no follow up after one year). And one person after two years with no sign of it coming back. BUT in all cases it was someone that had just been diagnosed with EM (had EM less than 7 months). I am two years with EM and am afraid over the hump for this to possible help me. Laura, in those 18 months of Heaven, what special things did you do? Jim

lauraflora1 said:

I was one of the lucky ones who went into remission for 18 months, I was able to come off all medication and had no symptoms at all. BUT like you say it was not a cure and did come back to haunt me. I am still hopeful that as it’s happened before that it could happen again.

Kentuckian said:

Just to give clarification regarding my statement about having heard of a few lucky people “cured”, I should have used the word “remission”. Who is to say their EM will not return? But it may not. And as far as I know they were not part of any research study. One was reportedly in India, read it in a medical article online but can’t locate it right now. Another remission was someone I knew, not someone I read about. I think hope is important. I’ll never give up hope.


emindependence said:

" I have never heard or read ANY researched project where anyone was cured."