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Setback . . . Again


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I am not sure what is going on.  This is far worse than a wave.  Far worse!  It is acute level but worse.  I have felt this feeling before during my second setback from steroids 7 months ago.  This time tho I cannot associate anything.  All my nerves are on fire.  My heart is pounding.  My chest is so constricted I cant breathe.  The anxiety is severe!  Severe!  What is happening!?!  My god!

 

This is not a wave!  Wow oh wow.

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No JBen, not again! What on earth is going on?? Sounds like you're constantly in acute. I wish your body will just learn to chill. Boy you need a break desperately.

 

All I have to say is sorry and it feels so superficial. You really deserve better as you've been through so much. What I do know is your track record of getting through these severe terrible stuff is 100%, so you will beat this too! :hug:

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I have no idea this time Becks.  I have done nothing different.

 

Jelly I’ve been feeling better the last few months.  But now.  I dont get it and yes I do need a break!

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Every thing is not a setback in wd.  Just like having strong sx is not brought on by something all the time.  You are going to have bad times better times until it’s gone. Call it a wave or window or whatever the  sx  come and go.  Sometimes they may feel like acute but you are not in acute wd.  Accept and distract. It gets easier in time.  Do your best to stay calm and soothe yourself. 
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JBen,

 

I'm so sorry you're suffering so much. I'm right there with you. I haven't done anything different. But I've also read that some people when they get a ways out can have a very bad wave before some big healing happens or even a final healing. I've been struggling really bad for the last two months and the last month has been worse than it's ever been. Honestly the last week has been even worse. So, I'm hoping that some good healing is happening. I think you're going to bounce back from this doing better than ever. I sure hope so. I also know when things get really unbearable it's almost impossible to distract. A moderator encouraged me when I posted last month. She said a few months before she completely healed she felt worse than ever and didn't think she make it. So let's hope something good is just around the corner for both of us. Sending you warm love and healing thoughts!

 

LiveLife

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JBen,

 

I'm so sorry you are going through this. I'm almost 9 months post AB setback and I have had several 3day- week long waves over the last few months that feel like I'm in the thick of it again, then they pass just as quickly as they came. And when that absolutely horrific wave is over, my overall baseline is better too. Each month I think I'm almost healed and then have a wave, come out of it and feel even better yet. When I was early on in my journey someone once told me that when we're in our worst waves we do our deepest healing. I 100% believe this to be true. I've had acute symptom return for a few days or a week at a time that I haven't had in months and then they leave just as fast again. Healing from this setback for me makes no sense and is completely different then when I healed the first time in my initial WD. Please know I'm sending you the biggest virtual hug! I don't think you're dealing with another setback, especially if you've not taken anything, I think this is just an exceptionally nasty wave. Hang in there and keep us updated on how you are doing!

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I am only three months off and having regular, horrible waves, but reading this does give me more hope and perspective to think about how these are still time for my brain to be healing - so thank you for that! I hope this is a big healing time for you and you come out of it clearer and one step closer.
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Please try this....when the waves crash upon you....flip the script and repeat to yourself..."This is what healing feels like today." And remember that movement is medicine. Movement distracts and can sometimes lessen the crash of the waves.  :thumbsup:
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Thanks all.  It is really nice to have this kind of support when you are down.  I so, so appreciate this community.  I’ve been following some of your advice. 

 

Joyatlast51 - i love what you said - ‘movement is medicine.’  It is so true.  Movement and, well, time.  Time to pull out the BIG coping tools I guess. 

 

Itsmytime - I sure hope you are right!  Maybe this is just a big, huge wave that will improve my baseline.  Sure hope so.  Time will tell.

 

Upperleft - I also hope you are right!  I sure dont need another setback.  I have had my quota thank you very much.  :laugh:

 

Livelife - we are partners and in this together you and I.  We have been through so much encouraging each other when we are down.  I hope for better days for all of us!

 

Anyway - thanks again to all of you.

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JBen,

 

You are right we have been through a lot together. The crazy steroid setback was horrible.  Sure hoping you and I are going to see better days very soon. Hugs!

 

LiveLife

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Some people here say that waves are sometimes a part of the healing process.  That it is painful when damaged nerves come back online and start trying to function again.  I'm not sure whether or not I buy into that, but I do like to believe in that when I'm having a bad wave.
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You are not alone.

 

I am 16 months out of my setback and having some of the worst waves ever. Like, ever. Unfortunately, I am not one of those people whose baseline jumps after but I do think it is a sign of deep healing. I even had a 9 week wave recently that was rapid cycling all over the place with acute symptoms. It's so bizarre.

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Hey trina - test for covid was neg.  I have no symtpoms of illness.  Just huge, terrible, crazy waves of severe in the worst way, anxiety, fear and doom.  This isnt mental anxiety where I am worried about something.  It is that chemical, physical torment where you want to escape from it but you cant.  No matter what you do, you cannot escape it.  It is like being tortured alive with every nerve in your body being set fire with molten lava.

 

It is hard to stay positive when I am in this state.  Normally I get a break at night but not this time.  Barely any sleep and exhausted from it.  I dont believe in hell but sometimes I think we all died somehow and are living in hell.  I know it is not true and I shouldnt write it but that is just how I feel right now.

 

This is feeling more and more like a setback of some kind and not a wave.  It is so different from a wave - even a bad one. 

 

Time to claw my way out of this mindset and be hopeful and positive.  I am healing.  We are healing.  This is what healing looks like with this syndrome.  It will get better.  It has before and it will again.  Distraction and time are the best medicine.

 

Thank you all so much for responding to my thread, supporting me, challenging me, sharing your stories with me and just being here and engaging.  It is so great to have this community.  Not sure what I would do without it.

 

 

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Hi Jben,

I’m so sorry that you are having a difficult time in this setback.

It truly is so very distressing and discouraging but I know you will get on the other side of this.

You’ve powered through before and you will do the same with this one.

 

I don’t understand all this non linear torment either.

I’ve felt the worst this past month and now. The burning is truly so absolutely painful and horrible. You describe it perfectly.  It’s like being lathered in butter and put in a skillet. Lateky it feels like 100 bees stinging my head, arms and lower legs. I just want to run from the pain and get outside of the burning skin.  I’m use nylon ice packs at night so maybe those might help you.

I also use wet washcloths around my neck at night as well.  I sit on the side of the tub and put my legs in and use warm and cold water to trick the nerves. So maybe that might help too.

There’s no rhyme or reason to all this, it’s still cruel to have a decent day, only to come crashing down to a closed window. I’ve had very few but I’m hoping we both have one soon.

 

You’ve been so strong through your journey and you will continue press on. You have great courage and strength. Just keep reminding yourself that you’ve healed before and you will again.

I feel the same way about this board. The folks on here have been a lifeline for me.

Nobody understands unless they’ve been through it. My friends don’t understand and are too busy with their lives too, so coming here is a great strength.

 

I’m thinking of you and sending you big hugs of compassion and healing.

I pray we all turn a corner soon.

Bless you!

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Thank you so much jordanjack.  I love all your suggestions and will try some tonight!  I will never let this thing beat me.  I am here to stay.  Well, unless I get hit by a bus tomorrow. There is always that.  :laugh:
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  • 4 weeks later...

Coming back to this post to close the loop on the setback.  It lasted about 3 weeks.  3 weeks of super intense symptoms that did not feel like just a bad wave.  After going through everything that I was exposed to, I believe it was Propylene Glycol, an alcohol.  Not 100% on this but pretty certain.

 

Last week I was 80% back to baseline when I had to have a lidocaine injection.  That set me back again this past week.  I am now back to about 80% baseline again.  I think maybe if I can just stop being exposed to chemicals that work on gaba I can get back to healing!!

 

I do feel better.  I still have lots of crazy, terrible symptoms and only about 30% healed from the original setback in october 2021.  At least my body is responding and healing.  That is good news.

 

 

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That's great to hear, J Ben!!  I'm just hoping you get MORE relief soon for the nagging symptoms. I think some of my symptoms are similar to the ones you get (I have less anxiety) but more of the physical ones at least.  Stay away from all the triggers!  I know it's hard to do that. We all bump up against them. 

 

PS Sage said to tell you she is thinking of you and she's found a couple of things that help her tummy if you are interested. 

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Please try this....when the waves crash upon you....flip the script and repeat to yourself..."This is what healing feels like today." And remember that movement is medicine. Movement distracts and can sometimes lessen the crash of the waves.  :thumbsup:

This made me cry.  Thank you.

 

This is what healing feels like today.

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[ee...]

Way to go JBen! So happy for you!

 

Helen, yes I’d love to hear what helped Sage’s tummy.

 

I’m still getting over COVID for the second time in 6 weeks.

 

This one was a lot harder. Really brutal

 

My tummy is angry at me!

 

Also absolutely no energy, whereas before I had Akathisia!

 

JBen, you show us all everyday what perseverance is!

 

Keep going, one day you’ll get there!

 

Winnie

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JBen, I never knew that alcohol could cause anyone to have a setback.  If you only applied it to your skin, how could that affect.
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