Pain versus Suffering! (Mind over matter?)

Welcome New Member Introductions
1

Hi Everybody,

My name is vera (a.k.a veerla) and I have been diagnosed with erythermalgy (primary variation of erythromlelagy). It takes me a lot of courage to write this discussion, because I have only talked about this with my closest friends/family members.

I wanted to talk to you about the following: I have been sick for 6 years now and I have transformed from being able to work full-time to being supported by disability benefits. I cannot work any longer and I am now 30 years old. With the help of friends/family and my therapist I have come a long way. Now I acknowledge the difference between having pain 24-7 and suffering. The former refers to my body and the latter to my state of mind. I do believe in enabling ‘mind over matter’, however, I am very very scared for my future.

My EM progressed so rapidly in six years, that I am scared I am not able to live another 40-50 years. This, because I am afraid that the suffering will dominate the pain, and that I am not strong enough to physically endure this much pain. I do have a awful lot of pain every second and every minute, and I think when I say this many of you can relate (which is not that common to me, most people just don’t know how strong this pain can be).

I keep making concession regarding my joys of life and keep adjusting my daily activities to my bodily pain. Which are getting less and less…(some days I am in bed for weeks in a row, being able to do nothing but watch TV/series.)

I still have therapy to give me perspective, I use mindfulness trainings and I keep being honest to my partner and parents about the pain versus suffering ratio. However, the last time I was in the hospital it first looked like that the ketamine didn’t work and that my new pain level would be through the roof for the rest of my life. Then I realised that ‘what if you do reach this level of pain on a 24-7 basis?’ The ketamine helped a bit, I still experience a high pain increase compared to 3 months ago, which is now my new daily pain level. I am doing okay now, but I am still unable to actually comprehend how I can keep dealing with so much pain for the next decades.

Therefore, I hope to write with people who endure EM for many years and hope to have a honest and open discussion about pain versus suffering. Just any advice, any experiences or whatever to give me some insights on how to handle the situation when pain becomes suffering. My bodily pain never stops…it is always there. I have nothing what brings me any relief, only to try to stay calm and mentally ‘own’ the pain. Is there anybody in the same position as me, who has endured progressive EM for many years.

Hope to hear from you soon, and thanks in advance.

Best,

Veerla

Ps: Most times I am a happy person and I am able to get perspective, so no worries that I will do some irresponsible and impulsive stuff. And yes, I know that in our position the ‘what if-game’ is not productive AT ALL. I just want to talk about your experiences which can hopefully help me stay strong and be positive about my future.

2

Hello Veerla,

I have had EM for almost 5 years all over my body. I am in pain every day but my pain has been responsive to lifestyle change and not so much from meds. For the first couple of years my pain was severe all day and night every day. I wanted nothing more than to be admitted to the hospital and put in a comma till something that would help could be found.

I am disabled by this as well. I keep my house between 60 and 63 degrees and tis has helped a lot as long as I don't move around too much. Moving around , evening /sleeping, and emotions can still hurt significantly in these temps. I also have a connective tissue disorder that causes joint pains and these are not helped by cooling so they can flare up at any time. I am lucky to have moments in my day that I am in little and every blue moon no pain. These moments don't last long , from minutes to an hour or two if I am lucky and they make a significant improvement in my mental status.

What kept me going during the time I had no moments was my family and God. Even with constant pain I still had my loving husband who is so supportive and kind I can't help but still feel joy through it. Of course I had days that I let it be suffering but for the most part I kept hope and here I am! I know I am not good and I essentially am imprisoned but what a wonderful prison I have.

My prison is filled with love and support, laughter and tears , good days and bad , but most of all hope. I am 41 years old so I too have potential for many years of this which can be discouraging but I'm not done trying. There are still meds and procedures I haven't tried and they are working on a new medication today. I have had to let go of things that used to bring me joy and start discovering what I can do that brings me joy. I have become a moderator here which gives me purpose and I know it is TV but I have Netflix and can watch season after season of a program all at once and this I can escape into. I do bible study every week with homework involved and this gives me accountability . I have people coming over to study so I had better of gotten my work done! This also gives me some social interaction which is also important.

There are different things for different people but what's important is not dwelling on what you can't do but what you can. Take things day by day. I never allow my pain to be suffering 2 days in a row ( or try not to ). If this is allowed more than one day it quickly turns to two then three and so on and this becomes the new you so I make a decision to allow it and to stop it as well.

I hope I made some sense. I have recently started gabapentin and in combination with my other meds it has knocked me silly. This post if it actually does make sense was a slow but major accomplishment! Must nap :)

I hope you are able to have some moments too soon Veerla.

Take care,

Alina

3

Dearest Veerla,

I think you already know from previous conversations that I am bedridden and disabled like you. I have systemic EM (sporadic primary),which had an acute progressive onset . Today is a worse than bad day so I can not type . Just wanted you to know that you are inspirational and you are not alone

God bless

mads x

4

Hi! I am in the 8th yr. w nonstop EM AND I have it severe 24/7 too. My Faith and family are my refuge. I have a supportive husband. I am 62 years old. I try to keep my heart, head and spirit on the northern route even if my body is going south. My drive can sometimes override the pain when I am so headstrong and determined to pay the pain (I call it white-knuckle) to do something fun in spite of the pain. Try to turn the negatives to positives. Sometimes try to find humor. It’s a nasty disease and I am so sorry for younger people trying to face future fears. My heart goes out to all of you! Hang on!

5

Hi Veerla,
Like others here (and yourself), I am disabled and in high pain 24/7. I stopped working about 9 months ago. My EM progressed rapidly these past few years. Pretty surprising to all of my pain doctors as well. Ethel (as I refer to her) just isn’t showing any signs of slowing down.
For me, Ethel surfaced about 13 years ago. Sporadically, and then daily. Now constant.

I’ve definitely gone through highs and lows emotionally. I try to explain it to others as if it were a painful debilitating car accident that was going to happen. Every single day.
Would you still get into the car knowing that this was inevitable? The burning fire, the wrenching pain that makes it hard to even speak or inhale?
How do you consciously decide to ‘get into that car’ every single day?
And that’s where I rely on my faith as well. I find a lot of solace and comfort in that.
I’ve been humbled by this disease (and the multitude of other health conditions I struggle with).
I’m very thankful to have a husband who tries hard to be compassionate and understanding.
I try to keep my brain busy with Cognitive Behavioral Therapy exercises and workbooks (since we can no longer afford to pay out of pocket for pain management therapist sessions, but they were SO helpful!).
And then the are also FANTASTIC support sites like this one, where people can plug in and support each other. I’m VERY thankful for this team personally, since it helps give me strength when I’d rather throw a pity party for myself.

I think that you are on the right track with your emotional and spiritual treatment. And your therapy will continue to be a valuable tool as you CHOOSE to live with this EM. Keep fighting!

I too have had in-hospital ketamine treatments that just bonked and didn’t do anything. Seems like hit or miss for me.
I completed 2 rounds of IVIG (hemoglobin) treatment in-hospital 3 weeks ago to see if it might help my PERNIOSIS and open ulcers that I keep getting plagued with. Docs also thought it just might calm my Ethel flares in time. No dice. Back to the drawing board!

Big hugs of support to you, and don’t give up.
Pesto