I'm new to an EM diagnosis though my rheumotologist believes it is primary, likely genetic. I also have Raynauds and migraines. My EM has progressed to my hands this week. I'm about to try my third type of treatment (Mg was a big fail for me~ symptoms worsened, cymbalta=questionable). After scouring these discussions I have a burning question (bad joke- I know...trying to stay positive:~).
Seems like some meds are really aimed at pain relief and lessening flares. Am thinking topical creams and even the SSRIs would fall in this category? I say SSRIs because much of the new research shows that pain is felt in the emotion center of our brain and that SSRIs are preventing this activation. Maybe I'm totally off though I also remember my primary physician gave me cymbalta when the neuropathy first occurred and also suggested that it works at the brain center rather than actually reducing symptoms.
Are other meds then more oriented toward prevention of symptoms? I'm thinking the Mg, calcium channel antagonists, maybe the allergy meds?
Hoping others can weigh in....obviously we want both pain relief and prevention but I don't want my doctor to get so focused on pain prevention that we don't focus on prevention. Any ideas on other low-hanging fruit for prevention (i.e. low side-effect) absolutely welcome. Was thinking zyrtec or loratadine next.... Also starting to look into dietary factors.
Glad you're part of this online group. You raise an important question--which meds are simply for pain relief and which are to deal with the root cause. But, I don't think the answer is a simple one.
Some EM sufferers have been known to have complete remission of symptoms (not just the pain) with meds that are usually used for pain--e.g., Lyrica and Gabapentin. These do act at botht he level of the brain as well as on the peripheral nervous system. Certainly, I have fewer flares and less severe ones on a small amount of Lyrica (approx. 100mg/day) combined with an even smaller amount of Cymbalta (15mg/day which is 1/2 of the smallest dose). And hair, skin and toenail regrowth has also occurred--all signs of improved circulation. Cymbalta doesn't necessarily just dampen pain signals, it also may improve circulation because it can act as a vasoconstrictor for those with EM.
Another issue is that EM isn't a single disease caused by one agent. There probably are as many pathways to creating this group of symptoms as there are EM sufferers. That includes the genes responsible for the disease. While one particular gene has been associated with EM in certain families, it is quite likely that there are others that may also be involved.
For most of us, choosing medication(s) is simply a process of trial and error. What works for one doesn't necessarily work for others--what dosage works for you might be way too much or too little for me. Dr. Jay Cohen has articles online that address issues of medication and possible choices (see http://www.medicationsense.com/articles/2012/emwhatis.php for starters and go to the articles at the bottom of the article for more info). Generally, he suggests starting off with a small amount of the least intrusive compounds of a certain family and seeing if tit makes the EM better or worse (e.g., trying Magnesium for example). If it makes things worse, then go to the next family of compounds and so forth. Being systematic in this way is more likely to help you find compounds that work faster than just choosing something out of the air. Each of us seems to have a pretty unique pattern.
Diet can play a large role in triggering EM attacks. There are discussions about foods that trigger EM in the Discussion item on the menu on the top bar of this site. For many of us cured meats and soy and other fermented products are triggers (they cause vasodilation). For still others foods that have histamine in them or which are known to trigger inflammation may induce flares. Many of us keep a daily chart where we track food, flares, sleep, activities, stressors and meds so we can look back for possible patterns. This has really helped me sort out which foods, activities and meds may be doing more harm than good.
Because pain is in the brain, many of us also use strategies that help us tame our amygdalas to keep calm and deal with this disease--mindfulness, tapping (EFT), self-hypnosis, biofeedback can help.
I wish you the all the best in finding a treatment(s) that helps you.
Hello dorthy. Dragica hit the nail on the head when saying some meds that help worth pain also help some with prevention while doing nothing for prevention or pain with others. Most doctors do focus on pain relief because there is no known cure. I know some people get preventive effects with low dose aspirin and the dose is so low it isn’t prescribed for pain. You can discuss low dose aspirin wroth your doctor keeping in mind if you try this or any other treatment it doesn’t work for everyone. I how you find something that helps you soon.
OK- Helps me think through moving forward with medications though am still feeling so in the dark about the primary EM mechanisms. Will keep digging into the research to understand the latter and play with diet a bit more too.
Luckily, had a decent yoga and mindfulness practice prior to diagnosis. Heard about the tapping~ sounds fascinating. Thanks for all the additional ideas...so good to know there are options.
Just to let you know that the World Tapping Summit (Emotional Freedom Technique) is on right now and is free. Today's sessions were on pain relief and will still be accessible until 8pm Thursday if you register right away. The link is http://www.thetappingsolution.com/ . This site also provides all that you need to know to begin to do tapping yourself.