Hi there everyone,
Ive been woefully absent for a couple years now. Hope some of the old timers are still around Ive been having a lot more pain lately & its not just my EM, its all my other conditions acting up. In general Im doing worse. I just feel like at some point all this may be too much for me and I may need to look into assisted suicide. Im not there yet, but I just have trouble imagining sticking around for 20-30 more yrs w these pain levels. Wondering if anyone else has looked into this or thought about it… sorry to be such a downer, I am just trying to be realistic. Thx in advance <3
Hi there everyone,
medical assistance in dying (MAID) is offered in my country but EM would not be considered as eligible.
my thoughts are with you. i hope you find some peace somehow.
I would like to suggest pro-active things for you to do, several of which will probably sound extremely basic but are also things that people tend to overlook:
review all your meds, check for interactions, consult with a professional about tweaking what you’re doing for better relief/control
review new meds out there – new meds come out all the time, you should periodically check what’s available and what new research has been finalized and how it may apply to you
get with a counselor who specializes in people who are living with chronic pain, they may have ideas for coping for you… at least it would be someone who will really listen and understand what you’re saying… and people with chronic pain are more likely to have low-level depression, it might be worth considering assistance for depression at this point, it sounds like you might be in an acute stage right now, a little help may go a long way
look for non-medical interventions (mediation, stress reduction, and so on)… sometimes making changes in your life in general will help with chronic issues
At the top of the page to the right there’s a tab for Crisis Help Line, make use of that information!
And, take one day at time, try not to look at “20-30 more years” try to stay focused on right here, right now. I know this is a major challenge but I also know it works.
Sarah1, I really feel for you. I can understand what you are talking about and was considering taking an overdose of pills myself, after first make sure it will work, because assisted suicide is not legal in my country. That was a year ago and here I am still, much better and going on. I know some people think of one as a coward for feeling this way but … Even if one is a optimistic sort of person, constant pain, that make a make one a handicapped recluse, make life seem not worth living. My kids bought me 2 books that at the stage I was reading them when I was at my worst didn’t make me feel better or help but it must have click a switch somewhere. It is “Man’s search for meaning” by Victor E Frankl and “The Choice” by Edith Eger. I agree with ModSupport to try and change your meds, sometimes one take too many, to scared to stop any and actually make things worse without knowing it. I tried stopping some supplements and realise they were making my EM worse, not helping at all. I do not know what other medical conditions you are battling with and wish I could help you in any way. Just know everybody on this group’s thoughts are with you. There is a great Facebook group you must consider to join, much support and help from them.
I am so sorry for your situation. I too was at place of deep despair. I was having terrible side effects from some of the meds and still in terrible pain. I was looking into having my feet amputated. I also couldn’t imagine years of this kind of life. As a Christian suicide was a difficult option for me to consider.last year I began a concentrated effort to try and find a way to cope. I started accupuncture. It took me three trys to find an acupuncturist who really listened to what I was saying. I have been going once a week for a year and am 90% back to normal. I am only taking 300mg. Of gabapentin. It is like a miracle. I have quality of life back. It has been a journey where literally layers of pain and burning have been removed. It has taken time. Not just a few weeks and then give up. I tell you this because I want to give you hope. I remember thinking, what if one day this went away and I was normal again. Well it is almost there.
If you can find a really good acupuncturist I can have mine recommend treatment for you.
Best of luck and may God bless your journey.
I’m Diana and relatively new here. I have been surrounded by pain and the lose of loved ones my entire life. I just lost my second husband Maurice at the end of October. I lost my husband Cory 12 years earlier.
My EM is different than most. It was the result of excessive chemotherapy treatment and level (5-FU) that i was unable to metabolize. Not only is my EM 24/7 but cancer returned a yeat ago just 18 months after the treatment. I also have Sjogrens Syndrome 2012).
I never say “I understand what someone is going through.” I couldn’t possibly know unless i lived your life. What i do know is that life is overwhelming all by itself without adding in multiple illnesses.
Each person in our world has challenges and some of us get pudhed to extremes. Do you have family or children? I ask this because my mom who suffered the same condition as i do did kill herself towards the end. I was only 14 years old.
Please have faith in yourself. I know its not easy. None of us know whatd waiting for us in the future. We may find a cure for EM and theyrr makng excellent progress in cancer resesrch.
Please don’t give up. You can do this. Right now the suns not even up, I’m painfully freezing and forced to wear gloves to protect my hands always even in the shower. You can imagine how difficult it is to wtite to you.
My point is i dont personally know you but i care about you and your suffering. I care so much about everyone’s suffering that i am researching neuropathy and cancer, and liver disease for about 12 hours a day.
If i am able I will find a resolution to our suffering. Please give me a chance. My doctors have been asking me to write a book on how i stay positive after loosing 90% of those i loved while dealing with severe pain. I’ll probably use a ghost writter because right now my hands are screaming at me
Just breathe. When you’re ok with that take small optimistic steps foward. Keep a journal on your bed so you can review all the night’s you stayed strong. Find a hobby, a distraction that you enjoy which will take your focus away from the pain. You think i enjoy all those hours of research?! As long as I keep my mind preoccupied the pain is less.
I know pain, I’ve had 14 surgeries. I spent the holidays alone with the love of my life gone but i made it through. One minute, one hour and eventually one day at a time. I have faith that you can do it too;
Sending you positive energy,
Dear Sarah, I would like to share some things with you. I have had EM for 21 years. I have been to hell and back. I have learned a lot. I understand how you feel NOBODY WHO DOES NOT HAVE THIS CAN. I don’t have friends like I used to, but I don’t want to keep talking and talking and talking about it. Please respond if you would like. My name is Kathleen. God bless you!!! I hope you will soon be able to feel His peace!
thank you Cherry. I suppose only terminal illnesses qualify?
Azurelle, yes I have done & continue to do aLl that. I am already on antianxiety & antidepressant meds. It has been 18 yrs, believe me I have tried it all in that time. When one is in acute physical pain, being in the moment is not a good idea. That tends to make things worse. But for any newbies I am sure this is good advice from u.
Frosti thank you for the kind words. What is the fb group? Is it Lauren’s? I will see if the books may help.
Diana I am so sorry to hear of ur suffering as well. I too was alone over the holidays. It was crappy but I made it. I became disabled at 24 and havent been able to date much and most of my friends & family disappeared. My mom is still alive but is dis abled now too and lives far away. But she is my best friend. I know I will be able to hold on til she passes but i do not have much holding me to this world besides her. I do think the discrimination i face daily for being disabled and low income is accumulating stress that i no longer can deal with. Ive gotten involved with activism but it is so hard to keep fighting when most ppl are cruel.
We’re making Amazing advances in neuroscience and neuropathy related diseases. You’re young anything can happen.
I know the pain is overwhelming. I don’t take painkillers because of the cancer returning. I’m going to be relocating (hopefully) up North (Seattle area) to try to fight back the cancer while I continue to research EM.
I can’t stress enough not to let yourself stay in bed “justifying” your depression. We already know this is one of the most painful diseases in the world.
I personally know that if you distract your mind, little by little you’ll grow a stronger tolerance to the pain. I use disposable gloves to protect my hands and compression socks (Amazon) which help.
I support the gentleman on our site who said to research your medications. I use Drugs.com they don’t ask for much personal information for you to use their drug interaction application.
The one thing I’ll add, get a stronger doctor. If you’re in this state of mind then they’re not doing their job.
I wish you the best.
I sincerely hope you will get some relief soon. I copied the FB groups for you. It is closed groups but I can recommend both of them. Just ask them to add you.
Erythromelalgia - Medicine/Treatments, Information and Support
Erythromelalgia, Fight Fire With Fire! Bobs Hot Water Protocol And More!
Lots of positive thoughts from me
Don’t forget music.
Focus on what you CAN do - simple things you take for granted. Focus on the QUALITY of what you are doing and it may become more rewarding.
Try to find ways and means of being more active.
You are a human being, Sarah, and are so privileged to be on planet earth. You are amazing. Even though you feel acutely alone, small and overwhelmed by pain a lot of the time you are, deeply within you are all light and love and connected with everything and everyone.
This will probably sound trite and far away. I’m not seeking to convert. I’m not religious but have found a way to journey through this inner light and love within every day and it is such a support to me. It is within everyone so you could go looking.
I have been living with EM for nearly 20 years. I’m 67 and along with other conditions ageing makes life tougher.
You did well to reach out to people. Build on your emotional connectedness. Make more of the connectedness you already have and try to build anew.
Go searching, Sarah, and be strong.
I’m sure most here reading your post, can sympathize with what you are saying … i know I do. I am so sorry you are suffering, emotionally + physically.
For me, although I am not screaming in pain all day, I am at a level where it is very difficult for me to go out of my home or work remotely. Sometimes when I talk to old friends I end up crying for days, because somehow I feel more alone, and am reminded of how small and seemingly unimportant my life is (compared to things my friends do). It’s super hard for me to cope when I know there is a world out there I + I am on the outside looking in.
Something that has helped to make my days feel more worthwhile, is connecting with a few people from these types of chronic pain groups one-on-one, regularly (phone or im). Who understand, and we can laugh and cry about things that happen in our day that only each other would understand, bounce treatment ideas off each other, helping to provide info + data points for each other.
For me I know some of my coping mechanisms I do during pain - like just zoning out in front of netflix or browsing facebook - although it gets me through the moment, i think exacerbate depression by making me less in touch with myself. I don’t know what to do instead … I guess I need to think about it.
I hope you tell a doc how you are feeling. I am sorry again you are feeling this way. Btw my mom is my best friend too <3
Struggling a lot right now, too. Tears are flowing too much this year so far. I know it’ll settle back to a more, well, less, well it’ll settle back eventually to a more survivable mode. It always does. Hard times right now. Thank you for sharing—you’re not alone.
My heart just dropped when I read your entry. It can be so difficult dealing with constant pain. Each of our situation’s are different of course but we all do share a common thread. I agree with several said. It’s better not to look so far ahead in dealing with this since we really don’t know what will be available in the future. One thing that was offered to me but I couldn’t afford was a ketamine infusion. You may look into that. However, on an emotional support side, I hope you don’t mind if I give you a link to something that has really helped me. (https://www.jw.org/en/publications/magazines/watchtower-no2-2019-may-jun/serious-illness-comfort/#?insight[search_id]=662a10a8-ad29-47ff-b434-07af34ebe594&insight[search_result_index]=0)
My faith really keeps me going and focusing on the positive things I know that are ahead. This website has so many amazing articles on dealing with chronic illness as well as thoughts of suicide. Even if you don’t look at it, please do talk to someone about your feelings. Oftentimes, I know I just need someone to listen. We are listening right here.
Please keep us posted, Jennifer
I was also thinking of mentioning ketamine infusions to you Sarah - for possible pain relief but also for treatment-resistant depression.
hope you are having a day today that you can manage.
Hi Joan, I went to acupuncture twice a week for about 2 yrs & while it helped my muscle pain (back neck and jaw) it did not affect my em or joint pain. Sadly what works for some doesnt work for me and after 18 yrs i e tried pretty much everything.
My drs are very resistant to infusions. Which sucks bc I wanted to try lidocaine infusions. I am still waiting for an appt w a specialist (it is a 1 yr pluswait even tho ive already seen him).