my daughter is taking adhd meds and I was just reading the side effects.the very rear side effects are the same as EM. I am going to talk to her doc in hopes that if it is the meds we can change them or do something. Anyone have any thing like this happen. why did the doc not find this with all the appt we have gone to? Why in the last three years have they not checked the side effects of the meds she is on?
Hi. I am so sorry for all your daughter has had to go through. I can’t believe the doctors haven’t thought of making sure it wasn’t caused by her meds.i really hope that is the case. Could you imagine what a blessing being able to just switch her meds and take away her pain.no child should have to go through this. She is lucky to have you out there doing research never giving up. I am praying that is the case for her. Please let us know if the meds are stopped and if it helps.take care and stay strong.
Alina.
What ADHD meds is she taking? I have been taking ADHD meds for a very long time, and I have been diagnosed with EM. My mom and doctor did try to change my dosage/meds, but it did not seem to cure any of the symptoms I was having. Hope this helps...best of luck.
She is taken focalin XR. She only takes it when she has to go to school. She doesnt get it in the summer or on the weekends durning the school year. I was very reluctant to put her on meds for ADHD and we tried everything before doing so ( strict schedule, diet, and counciling) but none of that really helped. The meds make a huge difference at school and her grades are doing so much better. I hate that if it is the meds (this is the fourth one we have tried and its the one that helps her focus) to put her through changing them. it was so hard to find one that worked for her. BUT if its something as easy as taken her off them how could I not! She is so happy with how great she is doing in school and I don’t want to take that from her but I will do anything to take the pain away. So again I will be talking to her doctor today. I just hope I have found something we can fix or change and make it all go away.
I have heard that some medications can cause EM symptoms before but can’t remember if it wa on Here or on the internet. Why is it that with this we always have to make sacrifices. For you it’s whether her doing her best at school and being able to concentrate or get rid of this hideous pain. I guess when the EM is flaring she finds it difficult to concentrate anyway.? I know I do.! I would love to hear happy news that this is resolved pretty easily although I expect it will be a long road. Good luck to you, your family and esp your daughter who I hope finds a middle ground where school or pain aren’t options she needs to consider.
I talked to her doc yesterday and she wants me to stop her meds when she goes on winter break and see if she gets any or less flares. If so we will go in to the office and talk about taking her off the stimulant adha meds and putting her on a non stimilant med. She says all stimulant meds can cause these side effects so why did we try changing them when she showed the symptoms? She doesn’t take the meds in the summer and still gets the flares but not as much the shower is the worst. They are bad in the winter I guess from going out in the cold then coming back in to the warm. She always has socks on and her hands are always red even without a flare. I just want to fix this andake her better.
It must be horrible to not be able to do anything to get rid of your daughters pain. I know that I would’ve done anything to protect my daughter from being ill. All you can do it keep fighting to get the drs to try to help her. I find I get more pain in the winter because of the going in and out in different temperatures. I weirdly find it better to keep my feet warm in the winter otherwise I bounce from icy pain to burning pain. I will keep my fingers crossed that a change in meds will alleviate some of her symptoms.
Its just so frustrating that the docs took so long and for me to find it could be the meds to even come up with it. I ask when it first started happening if it could be the meds and no one was sure (why I didn’t read the side effects bettereor sooner I was so caught up with the doc it didn’t think about it). I hate that by changing her meds it could effect her schooling and may not fix the problem. I hate that she goes through this at all. She is such a great kid and takes it all very well. I hate that when she gets a flare she is no longer crying over the pain because it is the norm for her now. I hate that she has to come in from outside to run her hands under cool water or can’t take a shower with out her feet being twice the size they should be. It just pisses me off! Thanks for listening my vent is over for the moment. Just want it to go away. Thanks again
Hi. You said she has stopped the meds before on summer break and they are a little less severe. I wonder if there is a change that happens in the neurovascular system that takes time once started to become full blown and equally takes time to stop the process and have it go away completely once treated or the cause is removed. Unfortunately there is no known answer to this to my knowledge. Maybe it takes longer than a summer break for the system to heal itself. I have to keep this in mind when I am trying meds. If it doesn’t work in 2-3 months I stop and we try something else. Maybe I am giving up on certain meds too soon. If it is caused from damage to the neuro vascular system ( I don’t know if that is true ) but if it is it makes since it will take some time after starting the right treatment or stopping what is causing it for your system to heal and have it go away completely. I am just thinking out loud there are no facts in what I am saying. Just something to think about. Does your doctor think the alternate meds for her ADHD will work as well for her? I guess even if they don’t but they help enough and stop the burning that will have to be good enough. I too have bad flares with showering. It’s so hard to find a temp that doesn’t make you shiver from cold but doesn’t make you burn either. They are so hard on me that if I have to go somewhere ( usually a doctors appointment. ) I make sure not to shower the day of and only the night before. Other wise it is too difficult to also go out and about after aggravating it with a shower! Just keep doing what you are doing.she is in good hands. My prayers are with you both.
Alina
Yes I stop her meds the last week of school and don’t start them until the week before school. When she was taken them in the summer it was horrible amd her flares would be so bad we ciuld go outside then back into tha ac or when she got out of the pool to the hot air she would brust into tears. I stopped give them to her in the summer because she doesn’t really need to focus on anything and she is more herself off them then on. I don’t think stopping her med over winter break is going to show any real signs because its only two weeks. When we stop in the summer I have noticed it doesn’t slow her flares for at least 4 to 5 weeks. I never put it together that the meds could be making this happen after the doctor said they didn’t think so becaise she was already onit for a year before she started showing signs of EM. I will keep all posted after we revisit the doctors
I understand being pissed off, I wouldn’t wish this on somebody I didn’t like let alone a child.! Take care x
Hello again.
As you said in your post. the doctor said they didn’t think so becaise she was already onit for a year before she started showing signs of EM. That just goes along with my idea that it’s takes time to start it and to become a noticeable then terrible thing. And could take a significant amount of time to stop it. I am grateful for the wonderful doctors I have found after going through so many but they too are human beings and are mistaken too. Especially regarding a condition as rare as this. Soooo frustrating!
Mom of hot hands said:
Yes I stop her meds the last week of school and don’t start them until the week before school. When she was taken them in the summer it was horrible amd her flares would be so bad we ciuld go outside then back into tha ac or when she got out of the pool to the hot air she would brust into tears. I stopped give them to her in the summer because she doesn’t really need to focus on anything and she is more herself off them then on. I don’t think stopping her med over winter break is going to show any real signs because its only two weeks. When we stop in the summer I have noticed it doesn’t slow her flares for at least 4 to 5 weeks. I never put it together that the meds could be making this happen after the doctor said they didn’t think so becaise she was already onit for a year before she started showing signs of EM. I will keep all posted after we revisit the doctors
Yes I agree with you. I hope that a change to a none stimulant med will eventually make all her signs of EM go away. I really do love her doctor. Please dont get me wrong! She is great and calls me right back after I call the office with my cconcerns. She had never heard of EM before we came along. She wasn’t even the one who diagnosed her. She really listens to my concers and if she doesn’t know or isn’t sure she trys to find us someone who is. It was the doctors A.I. DuPont hospital the found out what was going on. So I don’t in anyway want to sound ungrateful for what they have and are doing for us. I just wish we didn’t have to deal with it at all. As I am sure you feel the same way.
Yes. I too am grateful for the doctors I have now. I am glad you found one that’s so compassionate. It’s ok and understandable fir a doctor not to know everything but it’s important to find one willing to say they don’t know. Some font like to admit that then you can’t get the care you need. When you find one that can utter those 3 little words. ( I don’t know ) hold on tight they are a keeper! I’m so glad you found a good one:)
My son who is 12 just got diagnosed with erythromelalgia. He has been on focalin xr for several years. He also has history of sensory issues, so my question is whether this is a problem witht he meds? or is the syndrome of erythromelalgia related to the history of sensory issues and then adhd diagnosis. Like maybe they dont have ADHD at all but all of this is related to the underlying cause of the erythromelalgia . Our doctor has said not related to the meds at all. In my gut I never thought he had adhd, just that he had a jacked up hypersensitive nervous system that made him seem like he couldn't hold focus or sit still.
This is all very curious to me how many kids have this rare disorder but also have ADHD and sensory symptoms. SOMETHING has got to be related