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Still having bodily burning nerves but went to church today anyway


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I’ve just begun my 5th month out since detox and still deal with the incredible burning on my arms, legs and scalp.  It’s inhumane the amount of pain and distress the “acid in my veins” feeling, burning brain and stinging nerves bring on.  Ive had a few decent days here and there, yet not one day without the burning.

 

I haven’t been to church in many months since my taper and burning began due to the discomfort and also the anxiety from the pain.  I’ve always performed solo every Easter and was sad that I wouldn’t be able to participate or attend this year.

 

But, I went today! I told myself that I had to try even through the discomfort.  So I did!. My head, arms and legs were screaming, and I was shaking a bit, but I was not going to miss Easter. 

 

I’ve been feeling quite awful the past few weeks. How disappointing it is to feel somewhat better for a few days, only to be met with yet another wave. How I wish this burning wouid cease.

 

I’ve had some new symptoms lately with muscle pain in my upper thigh at the hip, some waves of feeling like a dropping elevator while working on the computer, and also some flashing eye floaters which my ophthalmologist has looked at and followed up on without alarm.  My anxiety is better.  I tell it that it’s an illusion and not needed. My skin looks like crepe paper in places thanks to the cortisol and I’ve lost about 25lbs.

 

A wise buddie has reminded me that the cortisol surges and lit up Christmas tree nerve endings are affecting my hammered receptors thus causing the burning. Sure will be glad when my CNS gets things figured out and the cortisol/adrenaline overflow settles down. It’s so crazy how some of us have mostly physical WD sxs and other endure mostly mental.  Comparing is futile as we are all healing even when it doesn’t feel like it.

 

I was really hoping by month 5 that I would feel much better.  It’s so very difficult but I wasn’t going to let these symptoms keep me from Easter.

 

I’m relieved that I managed it with the lights, people, music, hypersensitivity and smells.

It’s been a long time. So thankful that i had the strength to attend, even though my body was on fire.  I just kept telling myself, you can do this.

 

Im hoping the days ahead brings some opened windows for me with less burning, but also healing for all of us on this journey.

 

By next Easter, I will perform again.  But for today, I’ll just be thankful that i was at least able to attend and prove to myself that I could.

 

Happy Easter.

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Your symptoms are so much like mine were..you describe it well. Eventually it gets less often and less intense. But you may see it go and then come back - if it does don't freak out - its just part of the process. The burning is a common symptom of regular nerve damage. But this is not permanent ok? It does go.

 

Our system is so sensitive for a long time. Like even though Ive been doing really well, that gawd awful burning comes back in any setback I have - but it goes. The pain will go too:)

 

Last week I had some pretty awesome energy, so that was encouraging for me.

 

Church was overstimulating for me too for awhile. It was kind of a blessing that during covid i would be able to just stream services online. But when things reopened and I attended, the amt of people, the music, etc was almost too much. It gets easier too over time. But it is good to go out when you can and do regular things that you used to. It's also important to maintain a sense of community and support through this, which is what a good faith community should be about.

 

You'll make it through this JJ...hugs

 

 

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  • 4 weeks later...

Your symptoms are so much like mine were..you describe it well. Eventually it gets less often and less intense. But you may see it go and then come back - if it does don't freak out - its just part of the process. The burning is a common symptom of regular nerve damage. But this is not permanent ok? It does go.

 

Our system is so sensitive for a long time. Like even though Ive been doing really well, that gawd awful burning comes back in any setback I have - but it goes. The pain will go too:)

 

Last week I had some pretty awesome energy, so that was encouraging for me.

 

Church was overstimulating for me too for awhile. It was kind of a blessing that during covid i would be able to just stream services online. But when things reopened and I attended, the amt of people, the music, etc was almost too much. It gets easier too over time. But it is good to go out when you can and do regular things that you used to. It's also important to maintain a sense of community and support through this, which is what a good faith community should be about.

 

You'll make it through this JJ...hugs

 

Trina thank you so much! You are always so kind and supportive. I appreciate how you always help explain what’s going on with our bodies. This journey is so very hard. I am trying to make myself go to church inspite of the horrible burning on my head, arms and legs. When I am there and worshiping it brings me peace. I hope you are doing well!

Bless you!

 

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Awwww so glad you were able to go!!!!

Sorry it was with the pain, but it's good that you did it :)

 

Thank you SouthernBelle, I know you understand since I think you shared that you endured the burning too. I appreciate your thoughtfulness and encouragement. I pray my healing comes soon. I hope you are continuing to heal.

Bless you!

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