Share something you learned from another Health Activist (that everyone should know!).
I have learned many things from different people with the same condition and others with different diseases.I have learned in some ways we are all the same. We have these illness that we cope with every day that affect our lives, our families, our jobs. We create these facades of wellbeing to function in the world and we have invisible disabilities and face stigma because of them. That we all desire the connection to others and to spread awareness about our disease. Yet we cope, we try to remain positive and share ways to adapt to our health challenges and share jokes to make each other laugh. So many different diseases but so many similarities. That I have seen from us as a whole.
I have happened upon some new resources from a few of you. New tricks with Pinterest from some of you. And I hope I learn more.
Share something you’d like to teach other Health Activists.
I don't know if I have any pearls of wisdom.
I can't give people advice on how to treat their chronic migraines because people have different types and even those with migraine with aura do not experience them the same way or have the same triggers or same issues. It isn't a do this or that situation. It is do what works for you. Which is tricky business. Figure out what triggers are your triggers by mapping your own migraines. Which is tricky business. Some preventatives will work for some people and be horrible for others or just noneffective for others. Alternative treatments, lifestyle changes, botox and many other methods of treatment can be effective for many and many of us struggle to find some combination of many things to find something that will work in some way. What I can say is ensure you have a doctor who you can communicate with properly. Don't keep a neuro who is not doing anything for you. Take care of your emotional health and don't be afraid to utilize a therapist who may be able to help with that and other new coping strategies to manage and cope with pain. Sometimes chronic migraines will never go below episodic, but it is possible. If you currently are having a problems coping with the pain and other symptoms sometimes it isn't a good idea to constantly think to 'push through the pain' until the weekend, till you see your neuro, until that preventative does something... sometimes it is a good idea to evaluate your work situation, work any compromises you can, maybe consider part time, disability as well as pain clinics, alternative therapy and psychologists. We do what we can with what we got, but when nothing is working for a long time we do what we must to survive because surviving is the most important thing of all.
It is the same with fibromyalgia... what works with one person when it comes to medication, diet and alternative therapy won't necessarily be the treatment for another. What I think is the most important thing to remember with fibromyalgia is that the syndrome itself varies. There are levels of disability and symptom severity. Much like there can be a difference between someone who experiences episodic migraines to someone who experiences chronic migraines so can there be a wide spectrum within FM to those disabled by the syndrome to those able to work and cope on various levels with the syndrome. I know sometimes people with migraines will make comments 'if you had a migraine you would not be doing such and such' but of course when you have chronic migraines... you learn and have to function on some level so you do many things with migraines that most people would obviously not do. And sometimes people who have learned to cope with their level of fibromyalgia don't always comprehend someone who can be completely disabled by it. I am not myself disabled by it such that I was able to work full time and cope with symptoms, not counting the comorbid conditions like the chronic migraines which obviously did cause me to stop working frequently for durations. However, I know many people are not able to work full time or are completely disabled. In fact the reason I was unable to get disability insurance on my mortgage was simply because I Have FM and statistically they believe I have a higher chance of being disabled from it... which means a higher risk of them having to payout on it, and ergo, declined... ironically migraines are the ones that caused disability in me, but whatever. Point being it presents differently, progresses differently, some people develop different comorbid conditions with it which complicates things and symptom severity is vastly different... some people like me have insane sleep dysfunction, others more cognitive impairment, others more severe IBS and digestive and stomach issues.
And this is why I have a hard time discussing opiates and FM. We know from research that our brains don't respond like a normal person to opiates who would take them and get a good painkiller response... we don't and would need more to get an effect. And there is a suggestion over time it increases our sensitivity to pain due to how FM works, which is rather counterproductive. So it seems like this would be a bad idea to be using regularly. Yet I think as an occasional sort of thing... like a migraine rescue med, it sure would be handy. Like before I had Lyrica, which has made me more functional, those flare ups were very nasty and a painkiller in times just to get from A to B would have been nice in those extreme situations. It would be handy, but not often something we are offered certainly... we often just have to deal and move very slowly and not participate in things where we cannot use 'our' speed and 'have breaks'. And obviously we are pretty limited in other things because of the pain it causes which means exercise must be a very slow increase indeed. But I'm thinking of my level of pain and flare ups of pain. Someone with more severe baseline pain and disabled by FM may be on opiates regularly to function... and I cannot judge them for the use of opiates to be able to Function through pain on a daily basis if other medications do not help at all, given they statistically help little of us, and other medications have been tried or are Also used. Just because it is not a great solution for FM, like it isn't an awesome solution for chronic migraines, doesn't mean it isn't the only solution in some cases just for Pain Management. Maybe while they are figuring something else out. Maybe for the short term. Maybe because that is all there currently is for treatment. No one wants to be dependent on opiates just to get by... given the huge stigma in the medical field with them. So we are all in different places and different treatments are appropriate for different people with different medical histories.