Hi, I am new here. I found out accidentally that taking Ritalin (I take 10mg twice a day) allowed me to live a relatively normal life. I have taken it now for many years. Prior to Ritalin, Erythromelalgia had taken over my life, family, friends and eventually my job. I was lucky to have been with the same doctor for so many years (now retired) that he saw with his own eyes that I was better and prescribed Ritalin off-label. Ritalin is a vasoconstrictor. I have described EM to new doctors as I imagine it would feel like to be on Viagra 24/7, a vasodilator. Ritalin stops my flares from happening so there is no pain. I also have secondary Raynaud's, EDS Type III, Anhidrosis (which is much improved by Ritalin), Hypothyroidism and Livedo reticularis (not improved by Ritalin). My sister has primary Raynaud's and secondary EM. I'm sure you can imagine us traveling in the winter together - my sister with gloves, hat, hot water bottle, scarves, long underwear, 3 layers of clothing, extra socks, etc. while I am sleeveless with a light jacket and open toed shoes. We are quite a pair. This is my experience. Ritalin has given a lot of my life back to me so I wanted to share my story with you. I have had EM since 1998, undiagnosed until the internet when I finally had a name for it and could stop feeling like a freak and I knew I was not alone...
I am so thankful for the internet and this group. It makes such a difference when you can connect with others and know you are not alone in this. Thank you so much for joining our group here. I will be sure to ask my doctor about trying Ritalin. Being a vasoconstrictor I am surprised it hasn't been discussed before. At least it hasn't been discussed in my time here. I too have all of the polar opposites of EM. So Ritalin improves even these symptoms for you too with the exception of Levido Reticularis?
I could just imagine seeing you with your sister out and about. It would be a site to see for sure!
HI, NS, I really like your post. So do you have any side-effects from the Ritalin? Were you prescribed initially for ADHD? I wonder how I could even convince my Rheumatologist to try this. Or if I'd want to since I'm pretty sensitive. I sleep, thankfully, but my flares are terrible when the weather isn't like exactly perfectly mild, and even then they're always happening.
Thank you so much for this post. It was so very generous of you to take the time to share when you are feeling so poorly.Ritalin is a new one . I also have never heard of this being used, but as Alina says - it makes sense.
Think Alina and i will be chasing this one; we both guinea pig everything and anything :)
I would truly love to see you and your sister out and about. That made me smile.
Thank you again. So glad you found our community!
touches link. What powerful info they is on there
This is the first time I saw any response to my emails from January!!!
Wow thanks for sharing this plz mad alina let me know what your doctors saY, Or how it works for you. Also thankyou so much on the tremor info I gunna have a real good read through each one as I do seem to hit a few categories. I am just desperate to find a link between EM and seizures. As I suffered from a few convulsions when young all brought on by a virus " over heating high temp or extreme exercise" again thankyou for sharing the link.
Hi Notsuffering enjoyed reading your post. How interesting that Ritalin works for your EM. It is good to hear someone having success with a remedy. Thanks for sharing your info
Hi Tara and Notsuffering, It's good to know that something works, however a lot of caution required regarding it's use. It is a controlled drug and the side effects can be bad for some people and even dangerous. I have just read up about it and if anybody has a heart condition or quite a few other things it's not the drug to take. For one thing it can put your blood pressure up and so if you already have high blood pressure or even controlled but taking medication for it then it wouldn't be wise to have this. If a doctor has prescribed it then it may well be OK to use.
Hi, good to know it Metylphenidate works for you. It is a very logical link.
As Sheltielife pointed out it is not for everyone. I've been on psychostimulants for a year because I was initially diagnosed with adhd. Now this diagnosis is put into question for me, but that is a whole other story. For me, that class of medication did not improve EM symptoms at all. Also, I should point out that the effect of vasoconstrictors on someone with Raynaud could be very bad, there is a warning that usually comes with your first dose.
I can see how hard can be a doctor's task be. We might have very similar symptoms and we end up having completly different disease. There is very good possibility that my EM is due to B12 deficiency.
It is like a mine field and never ceases to amaze me how different things work so well for one and not well at all for another. So many things need to be taken into consideration. I also had a B12 deficiency and received three lots of injections over a period of months. Will be interested to see when next tested if my B12 count has remained better.
One of the main reasons in the case of EM why some things work well for some but not for others is that there are so many causes of EM. There is the primary reason for it due to genetics and there are various other problems that can cause it.
So, the answer is for doctors to find out what is causing it then maybe if that is treated if possible then the symptoms would at least get better.