Hello I’m amber 23 and live in Brisbane I have been in pain for over a year along with red feet which has now spread to my hands. It literally feels like I’m being burnt alive . I have tried many different techniques like sumarging my feet and hands in room temperature water with Himalayan rock salts and putting socks and gloves in the freezer to help with the flare ups. I’m also on lyrica and blood pressure medication which only helps take the edge off but doesn’t cure the pain. I have been told if we cant manage my pain I’ll have to give up my job which I have worked so hard to get and I have already had to give up my uni degree I’m just miserable all the time and can’t do things I use to which is putting a strain on my relationships with my family ,friends and my partner. I know they all love me and understand that I’m in pain but none understand how much I’m in pain or why I’m okay some days then I’m crying in bed the next . Em has ruined my life. Sorry and thank you for listening to me rant.
Hey Amber,
I’m Merl from the Moderator support Team and I’m in Adelaide. You rant as much as you like. Many of us know exactly what it is like when trying to manage a condition but those around you (especially family) have no idea. Some people will ‘try’ to be helpful with comments like “Have you tried… or…?” It is as if some of them think we are in this predicament by choice. So you rant as much as you need… …I do at times. People here know just what it’s like.
When symptoms fluctuate it can be difficult for others to comprehend. I’m often saying “It would be easier if I’d lost an arm or a leg, people would be able to see what’s wrong…” I have a brain injury and endure all sorts of odd physical symptoms. Everything from temperature fluctuations, tingling in my hands and feet, numbness down one side of my body, headaches from hell, etc, etc. and tried more medications than I care to name. Many of which the dr’s are unsure how to treat, I’ve had many a dr throw his hands in the air saying “I don’t know” which is about as helpful as a pocket full of sand. I am so very lucky to have a very understanding wife who supports me through all of this, because without that support I truly would be lost.
I hope others here with first hand experience with erythromelalgia can give you some strategies they have found to be of benefit in managing their condition.
There have been some posts on these boards for telephone counselling services, but I believe most of them have been north American helplines. So here’s a couple of Australian numbers that may be of some assistance if you need to talk to someone.
Lifeline 13 11 14
BeyondBlue 1300 22 46 36
These services are there to help and if you just need to talk then please use the services that are available to you.
Merl from the Moderator Support Team
Hi Amber,
I sympathize with you honey. I have just turned 37 and had to give up my career 12 months ago after working my way up through the system at a local hospital here in Brisbane. Most of my family are awesome, but some just don’t get it. Just keep educating them. I have had EM for at least 5 years and only diagnosed 2 years ago. I am constantly in and out of hospitals because it has attacked most of my body, including my vestibular nerve, mouth, face, throat and head. I have had spinal cord stimulators implanted and removed, so I have a fair bit of experience with what you are going through. If you need to chat let me know, but more importantly the people that have helped me most are on the EM Warriors Facebook page. They have a few pages, join them all. Take care of you
Anne-Marie
Thank you for listening. My family is great but they are still trying to understand how I went from being perfectly healthy to being in and out of hospital without being given many answers. I hope you are doing okay and please message me if you ever feel down or anything at all I’m happy to help wherever I can also thank you for the support lines
Thank you anne-marie I understand what it’s like to not have people understand. I’m so sorry that you had to give up your job aswell. I’m also constantly in and out try of hospital there wanting to do surgery to fuse my blood vessels and nerves or put blockers in so I can get some relief I’m terrified as the chances of me being able to walk again afterwards are slim. I’m sorry to hear that em has attacked so much of your body and if you ever need to chat I’m here and thank you for the advice I have joined the Facebook pages just waiting for approval from admin.
Hi Amber
Have you tried Lignocaine infusions yet? It is a lot less invasive and it has helped give relief to a lot of people with EM. Once you get approval on the FB sites speak to Maddy Mads, her knowledge is phenomenal.
I have tried it and had a bad reaction to it unfortunately just made the pain alot worse. And thank you I’ll be sure to talk to them .
Hi Amber,
Just wanted to say hi there. Sorry to read you are struggling. I am too at the moment actually. So know you are not alone <3 I sympathize with the strain on family / friends relationships. It’s hard to talk to my friends anymore – esp. when I am in pain that I am trying to compartmentalize, but also what Meri said about “what if you tried … x y z”. To me there is sort of a stigma underneath the surface that I detect, or maybe I am reading into it a bit, that somehow they did something … “right” by not getting this. And somehow I did the wrong thing. Because nobody should be burning for no reason, right?
When things get tough for me coping-wise, I just think, all i have to do is get through the day (maybe even the hour). But sometimes I just need a good cry, to let everything out.
I hope you keep trying things. I hope you can continue with your job. I hope you keep posting here, if it helps you even just a little. Take care and again know you are not alone.
Thank you and if you need someone to talk or rant to I’m here anytime day or night. I’ve lost alot of friends due to not being able to go out and do things so it’s nice to have people who understand what we are going through. And yes I agree with telling myself I just have to get through this hour then it will get better.
Your “rant” could have been written by any one of us. There is hope though. I was where you are right now just earlier this year. I’d struggled for 3 years with no relief at all. Eventually I found a mix of drugs and alternative drugs (CBD Oil) that seems to work well for me. I still flare sometimes but the pain level is 1000x better. Prior to, I thought I was going to have to go on disability too. I can live with where I am right now. I couldn’t live with where I was, not long term anyway. I mean a person shouldn’t have to be afraid to go to sleep at night for fear they are going to wake up in severe pain. I was doing 6-10 cold soaks a day/night on my feet (mainly affects my feet, hands and face only on occasion). We all know what you are going through and yes, we all have had family and friends not take our illness seriously. So yell, scream, rant and cry all you want here.
Thank you it’s nice to have people that understand.
As the parent who had my 13 year Daughter go through four years of pain I understand your struggle. What worked for Her was Low Dose Naltrexone at only 4.5 mg per day . I would urge you to look at my previous posts and give it a try.
My Daughter is now approaching her 18th Birthday and is 90% flare free. The flares She does have are now manageable, honestly LDN has been a life changer for the whole family.
Hi Amber, so sorry you are suffering with this horrible EM. I have it and many other symptoms that turned out to be chronic Lyme Disease. I had it 10+ years before I figured out the cause. Have been treating with antibiotics for 1-1/2 years and am significantly better though still have a ways to go (there is no permanent cure unfortunately). You might consider finding a Lyme literate doctor (they are quite rare) as everywhere in the world most doctors are quite ignorant of Lyme.
I’m glad you have found your cause and getting the correct treatment you need. I have been tested for lyme and many other diseases before they diagnosed me with erythromelagia.
Very interesting. But did the Naltrexone only help for the EM-pain or for the redness/enlarged veins/warmth aswell?
Hi ,
The pain and redness are gone , with s very occasional but manageable flare.
@leosinho you have asked this question many times so I will address it. The majority of the medications that are tried for EM whether it be aspirin, NSAIDS, antidepressants, anticonvulsants, sodium channel blockers, immunosuppressants, calcium channel blockers, and antihistamines among many are all targeted at correcting the neurovasulcar problems that lead to the excessive vasodilation that causes EM. There are very few medications that are just for the pain and if they are they have a tendency to have a tolerance built up to them. Finding a doctor and ruling out underlying problems is the first step in treating EM and then it is a trial and error basis on which medications will work for your problem. I saw that you posted earlier about having stereotactic surgery without seeing a doctor and that is incredibly risky and not recommended. Most people can find ways to significantly reduce flares and manage their EM through certain medications. EM is hard to treat because it is more a symptom complex but with time people can find ways to manage the problem with a certain medication/s.
What are ur thoughts on CBD oil? Have read some few EM-threads and alot of people have excellent reviews about this oil. It looks to help alot, but not the one from Amazon, its on a another site.
@leosinho I do not know enough about it as it is an alternative therapy. I’m assuming that it helps reduce inflammation but it does seem that people find it helpful.
Ok.
But would u purchase this CBD oil? My symptoms is quite mild, so i am unsure whetever its nescesary. I have no pain, only redness/very warm feet/toes when i get a flare, which is 3-4 times a week. But it does not hurt, just a bit uncomfortable.