I’m almost always in the middle of a flair. I can’t walk, and I cannot concentrate much when in pain. I’m 22 years old and I feel like my life is over. I made things worse by begging my parents for cold soaks in water, so now my feet are even more damaged. I can’t even enjoy life as a homebody, much less reenter the world. Every doctor I have seems to brush me off, and prescribe me pain medication that doesn’t end up working (or at least hasn’t in the past month and a half). I contemplate suicide frequently and have become extremely hostile in moments of pain towards my parents, whose hearts I know I am breaking, especially when they see me in this condition. Some days are better than others, but they feel like less of a relief and more of a tease. I’ve been shuffled through a chain of doctors at a slow rate since July, as my situation isn’t an emergency. Oftentimes, they just shrug and prescribe something that hasn’t shown any results. When I message them about this, I often don’t even receive a reply (been working with Jefferson and PennMed). I just need to know if this nightmare will stop. I can’t imagine getting through the holidays in this condition, even if it’s just a t home, I pray and pray to God, but sometimes I don’t receive the reassurance I initially got when this all began. I sometimes wonder if I’m cursed because I turned my back on religion in my adolescence and have only returned in need of the Lord’s guidance. The light at the end of the tunnel gets further and further away, and I need to know it gets better. I know it won’t be today or tomorrow but when I imagine Thanksgiving or Christmas trapped in my bedroom, all I can do is cry. I am so desperate for this to end. I only persisted with soaking because nothing else seemed to work, and of course it did more damage in the long run. Cold wraps also haven’t done much, and fans haven’t either. All I want is to be really and truly happy again.
As an additional measure, I should mention PaMom is my mother.
It’s a long journey but you will get there! For sure stop any cooling relief cause as you said it makes it so much worse. If you’re in a state where it is legal I highly recommend medical marijuana, it has helped me so much, I’m going to be able to stand at my wedding, went on a 4 mile hike etc all with it. It took me 5 years to get diagnosed, 6 years after first having symptoms I am now managing my pain with medical marijuana and I have most of my life back most days. I’m sorry you’re going through such a hard time but we’re all here for you, if you ever need to just rant about it hmu I’m here to listen. I like you am young to have it, only 20 and had symptoms since I was 14 and it is hard but you can do this!
I am so sorry. I have spent xmas, birthdays, etc trapped on a chair. I hope you get the care you need.
The pain messes with mood and tries our patience not to mention sanity.
I know many people worse than me hanging in there and knowing that has helped me get through hard days.
hope someone can recommend docs near you
Thanks for the reassurance - right now I can’t exit my room unless I’m essentially carried by both my parents. Hopefully things will turn around or at the very least, we’ll have a stairlift by then.
Also thanks Kats - medicinal marijuana is definitely one of the things I’ll be trying.
Oh, @Desperate…
I am so sorry you’re going through this. I understand the difficulty. I’ve been there. The first thing I want to dissuade you from is this notion you’re “cursed.” That is nonsense. I’m an agnostic who hasn’t been to church in decades. When I got sick, I didn’t pray. I fought. Because God helps those who help themselves. That means you’re going to have to put in the work like I did. You don’t take “no” for an answer. If a doctor won’t help you, you move on to the next one. You don’t stop until you find the one that can help.
Simply put, you can’t quit. You are duty bound to turn over every rock, to look under every stone, to search tirelessly for a solution. It is your obligation to the family and friends who care about you. You are not here just for yourself. You are here for them and you must fight for yourself for them — no matter how long, no matter how hard.
That dogged determination is what saved me. My circumstance completely reversed. I eventually found the right doctor and right treatment for me. If you’ve made mistakes, forgive yourself. You are human. The only unforgivable mistake is to quit on yourself.
Now you’ve got work to do. Start calling doctors, make more appointments, research treatments, learn everything you can. As long as you fight for yourself, God will be on your side.
Carter is right, do lots of research. Suggest you talk to your doctor about Bobs protocol and mexiletine. Also hopefully you are able to access a swimming pool. Hang in there, life is worth living, it will get better eventually.
Oh, Beautiful. What a note you’ve left us. I’m so sorry you feel this way, and I promise–we hear you. And, I dare say, we’ve all had similar thoughts. Please push past them, okay? I’ve chosen, yes CHOSEN, to look at this EM business as a gift. Crazy, right? But it’s forced me to slow down. Appreciate even the tiniest things, and the most random of people. The tiniest slivers of kindness, no matter where they come from, being tears to my eyes, because they are choices someone is making to see me in my suffering. When I’m in a flare, I stop and focus on the pain, and give that pain right back to God, in honor of other people who are suffering. I mentally try to draw pain from that person–the child who is hungry, the single mom who is afraid, the father who had lost his job–because I feel like if I was chosen to have this, I’ve got to be hella strong-- and I can take that pain for them and from them. In a big, mysterious and cosmic way, I feel like I can ease their suffering just a wee bit, and give it up to God. I recognize that all night sound a bit hokey, or woo-woo, or whatever, but I find it I focus on it that way, it gives me peace. It gives me a sense of purpose. It gives MEANING to this crazy stuff, instead of seeming to be some random lightning bolt. I agree–keep pushing to find the right medical team. Keep pushing to find the right treatments. But in the meantime–Psalm 139-- you were intentionally designed. God sees you. God knows you. I
Chin up, Darling.
This is what I needed to hear. Still fighting the good fight, just trying to get through this mentally. Even with online classes, this feels like a raw deal (during a flare, I accidentally left my mic on while I started crying out for God to help me fight this demon). I would consider myself somewhere between agnostic and lapsed Christianity (seeing my pain as a demon to conquer with a higher power gives me a more proactive way of dealing while waiting out doctors visits), and what I pray most for is not a miracle, but the strength to get through this. This is only a tentative diagnosis, but whether I have EM or not, I plan to find quality of life.
Thank you as well for your kind words. And you too, Kiwi. Trying my best to get current doctors to prescribe mexiletine. Neurologist is reluctant until the diagnosis is official (she made the diagnosis tentatively), but I’m looking into a dermatologist who can prescribe it and is within the same hospital network so care can be coordinated. Am also going for a medical marijuana license so a second avenue is open.
I suppose that’s one way of looking at it. I prefer to think of it as a math problem. There is an error in the formula that is providing a wrong answer. It needs to be fixed.
There are a lot of rare diseases for which there have never been a remission or cure. EM is not one of them. It’s not an impossible problem. Be encouraged by that!
If EM is still a tentative diagnosis, how about telling your story to the community? We can’t diagnose you but we may be able to point you in the proper direction.
Would you be comfortable to give us some more personal details? What are your hobbies, sports, are you a student, do you have close friends you can share concerns with in confidence? I see there are some good pools in your city, some are set up for people with disabilities. Don’t worry if you can’t swim, pools have lanes with floats etc. When the suicide word is mentioned it should be taken very seriously; have you mentioned these thoughts with your doctor? I see you are making some positive steps and you have been given some excellent advice on this site, so hope you are feeling more positive. It may take some time but you will make good progress soon.
I made a post in New Member Introductions just now. I also had my prescription medication for “anxiety and general nerve pain” switched to a different medication that interacts better with Prozac and my birth control.
Hi Micki, I note that it is possible (but rare) that people on Prozac may experience peripheral neuropathy. Also if you are taking medication for adhd1, say, methylphenidate, this could result in hallucinations with Prozac. Strongly recommend the YouTube video Bobs Protocol Erythromelalgia; this has a lady who was in a wheelchair.You may also wish to glean information, and make contact with the lovely caring people on Erythromelalgia Facebook.
Recommend you read “My year with Eleanor “ by Noelle Hancock. There are two editions available at your Philadelphia free library. Noelle reminds me of you somehow, you have huge potential as an author.
Also suggest you get counseling help from, say, Philadelphia Catholic Social Services, ph 267 331 2490, or similar kind, caring organisation such as this.
Wonderful you have such lovely parents but good to ask for help elsewhere as well.
A problem shared is a problem halved.
Of course as always talk to your doctor before considering any medicine changes.
Sorry, forgot to say Prozac has also been associated with suicidal thoughts.
Suggest you keep a daily diary with your thoughts, diet, activities, treatments, ideas, suggestions etc etc, the more detail the better. This may help with future ideas for writing, and help give direction.
Absolutely. The medication switch was done with a medical professional, but despite taking it for years, I’m considering switching from Prozac, particularly because it reduced my anxiety but may have heightened my depression. My university has a good counseling program I can turn virtually, which I think is the first step.
Hi Desperate, I have had EM for seven years, only on the feet…I did the cold water thing with the save bed results…A few years back I bought a Cryo/Cuff from Amazon with two foot cuffs…They are a life saver! It takes a little getting use to as you have to add Ice 1 to 4 times a day. But so worth it…Foot is not in water only cold cuff…Will last from 10 to 40 min depending on the flare…I can go from a 10 in pain to a 0 in 30 seconds but I seldom let the flare get to 10…I am not restricted at all…Any questions I would be happy to give my TEL # John Richardson Plymouth,Ma jrichardson38@verizon.net
Thank you so much for the information about this foot cooling unit! Things like this can make a big difference for so many of us!
Desperate, my heart goes out to you… What comes to mind regarding your pain and isolation and the need for at least some of it to subside enough for you to continue to cope is this… maybe you have multiple health problems and each needs to be dealt with seperately first… Personally, I have had counseling with a professional psychiatrist who helped me sort out several issues so I knew where to go for the best help. Now my osteopath has more information about me and is treating me better and more completely, as a whole person… In other words, my health isn’t divided into different parts of my body by several specialists. Thank goodness, at last I feel like someone listens to me and is treating me like a complete human being! My EM is only part of my problem, and with better treatment I’m doing much better now. I strongly suggest you try what I did… Hope you are much better soon… Blessings on you…