I have my GCSEs next year which is usually a very stressful time but due to the coronavirus outbreak, there is more pressure on us to learn everything in a shorter period of time. My flare ups happen most often when I am stressed and when I am too hot so having to do my GCSEs in the summer poses a big problem.
I have gone to doctor after doctor to help me with the symptoms of both erythromelalgia and raynauds however I was told that these are ‘nuisance diseases and not life threatening’. After a lot of persistent nagging from my parents, I was prescribed some medicine but the proscription was retracted immediately as the doctor forgot to take my blood pressure. As it took 6 months to get to that point, we are reluctant to try again.
My flare ups are getting increasingly more painful, i have trouble moving around and holding items during one. Does anyone have any home remedies, over the counter medicines or ways to deal with stress that they could share? I am afraid if I have a flare up in one of my exams, I won’t be able to complete it and it will come back ungraded.
You may want to check out this linked post. It has an attached pdf regarding useful supplements and herbs.
Also, don’t let doctors dismiss your symptoms as “nuisance diseases and not life threatening”. There are lots of disabling diseases that are not life threatening. If you can’t complete activities of daily living, it’s a bit more than a nuisance, isn’t it? It affects your quality of life rather substantially. Push back on that when doctors try to dismiss your concern. I’d also make sure your school knows you have a medical condition that could impair your ability to finish your exam. I don’t know what the law is exactly in the UK for people with disabilities, but they should accommodate you.
Thank you, I have a doctors note that has been sent to the exam boards which may allow me extra time to relieve some of the stress and I might be able to take a fan in.
Hi -
I was told the same thing initially by my PCP - that whatever I had, was “annoying, but not life-threatening.” I remember being in tears afterward because I was so incapacitated by symptoms of burning heat. Just know that you are not alone in that situation.
I find propranolol (not over the counter) - a beta blocker - to be the best for stress-induced flaring. You can take as-needed or regularly. It tries to cap your heart rate / bp so there is less of a body response to stress in general. It might aggravate Raynaud’s but I found taking a low dose like 5 mg x2 or 10 mg x2 to not trigger too-cold flaring for me personally (and there’s even one paper out there to say low dose might help with Raynaud’s by helping exaggerated sympathetic tone).
good luck.
I have had really good results from combining 100 mgs of imipramine with 5mgs of Amlodipine daily.
Ok, thank you for your help, my mum said she is considering going private so that i may ho through the system faster to get some sort of medicine 
Don’t give up on the doctors. The key is to find a doctor that is familiar with EM and Reynolds, probabaly a Neurologist. I drove to another state to get diagnosed. Once diagnosed, my PCP worked with my neurologist to play around with drugs (took almost a year) to where I can at least function in life most days. I do feel your pain and frustration, I think all of us have been there. It took me 3 years to finally start getting some relief but I still worry all the time about not being able to control my atmosphere. Post on this forum, for suggestions of doctors within a state or two of you that actually treat them and their EM. I haven’t been back to my Neurologist in years because my PCP handles all my meds now but I would if I had to, it’s worth it. There is no one drug or supplement that is going to fix you, it is going to take probably a minimum of 2-3 just to get some relief. Manage your expectations. I currently take Salsalate (aspirin based anti-inflammatory), Lyrica, Cymbalta and CBD oil. If I stop any of them, I can tell as my flares get worse and for no other reason.
Please look at the articles in my post that @CarterDK linked. You should also look into getting testing for primary EM since you are so young. Young people who develop EM have a higher likelihood of having EM that stems from a sodium channel mutation which can respond strongly to either lidocaine or mexiletine treatments.
Thank you - i dont live in the states however, i live in the uk, so far the doctors seem to be reluctant to give me any medicines especially pain relief ones as im under 16
@Rosie The fact that you are under 16 is my point. The point of those treatments are not to relieve pain but to treat the overactive sodium channels which are the source of the EM. Sodium channelopathies are one of the very few types of EM that have a known treatment that can put the disease into remission or at least vastly reduce the symptoms. This type of EM is most common in young patients presenting with EM so you are a prime candidate to get tested for the mutation. You are young so stay positive, it is too early to give up on the medical system before giving it a chance. Trying to get the test is at least worth a try in my opinion.
Ok thank you, ill see if i can get an appointment once everything is up and running again
I would still reach out to the EM community. I know there are others there in the UK that are being treated. First you need the diagnosis if you haven’t gotten one officially. It was obvious to me what I had long before I could get a doctor to diagnosis me. Once you can get the diagnosis, then you can begin real treatment.
@Rosie Hi Rosie. Others may have answered some of your questions but I recently went through exams with EM (A-Levels). Similarly to you I sent a doctors note to the exams board and was given rest breaks so that whenever I felt a flare up coming on I could take a rest break and either go outside or wash my hands under some cold water try and keep my temperature low. Additionally we sent the note to my school asking if I could take my exams in an air conditioned room with an invigilator. It took quite a bit of back and forth as there was only one room but eventually they agreed to it and and I was able to take my exams in a nice cold room to keep my temperature low and take rest breaks when required. This helped immensely as keeping the low temperature helped stop flaring from being induced so quickly by stress. Your school should be willing to help with this as it’s medical condition (doctor can explain how painful it is).
Like some of the others said, it’s really important getting a good doctor familiar with the two conditions. We had the same thing going from doctor to doctor. We found a really helpful Neurologist in the UK called Dr Michael Lunn and he has lots of patients with EM and Raynauds. He is super understanding and the first doctor who really tried to help when other doctors didn’t really understand. He is also willing to trial lots of treatments to try and help you. I’ve been on numerous drug plans and tried some of the other procedures mentioned here, such as lidocaine infusions which don’t work for everyone but might work for you. He’s based in London at UCL and I asked my GP to refer me to see him but is also available privately at Queens Square (we actually went privately for the first consultation to speed the process before then transferring back into the NHS). I don’t know how easier that would be for you to get to but I would say it’s worth the travel. He can also put some pressure on the letter to the school and was really helpful for me in getting the air con room and rest breaks.
If you have any further questions about this sort of thing or about the neurologist. Let me know.
Ok thank you so much. We are definitely going to look into getting an appointment with Dr Michael Lunn. The last appointment i had at a hospital went horribly - i had four different specialist looking at my hands and feet and none of them could actually agree on what was going on.