Day 14- self care and reflection on yesterday

Margot!!

Peer Supporter
I wanted to share my bike test ride experience, because I learned something I think will be important for me to remember.
Last weekend, I tried a bike, it was very difficult to get on the bike, so I went with a lower step through. That made a big difference, they adjusted the seat and I actually got to ride the bike. Big surprise...you don't forget, it's just like riding a bike :)

Pretty quickly my low back, hips and groin began to ache as I peddled. I kept going until it was unbearable. I got off the bike and could barely walk. The pain was intensifying, I stretched a bit and that helped, but in the moment I couldn't figure out what was going on. I couldn't name any negative emotions, fear or anxiety, I actually felt accomplished because I actually rode the bike and I was less embarrassed this time. Then I realized, I was myself beating the crap out of myself, Saying things to myself, that I would never say to another human. When I noticed the negative self-talk, I replaced it with positive self-talk and that helped the pain.
I had some internal investigating to do. We went home and the ache continued. As I sat with the pain and investigated, I realized that my brain sounded an Alarm with this new physical activity because there is a part of me that still fears the flare up/ loss of independence and not sleeping well because of the pain. My Brain needs more data to convince it that more activity is safe.
As I worked with the pain, it got better and by the time I went to bed the pain was gone, I slept well and woke up with very minimal soreness. Just the kind of data my brain needs to feel safe.

Last night I was thinking about all of the fears I have overcome in my healing journey. The years of intense and involuntary alarms courtesy of my beautiful brain. Over time, I learned to manage these fears. Reflecting on how I overcame the fear, I needed to remind myself that it takes time. It takes lots courage, patience and Small intentional steps toward rewiring my brain. Past success with taming fear tells me that I can take care of this fear too. Once the reason for the fear enters my conscious mind, I can work to tame it.
I am buying the bike I rode yesterday. I'm excited to ride the bike and work through the fear as I go instead of stopping out of fear like I did yesterday. I am looking forward to gaining strength in my legs and hips and enjoying the NH rail trails this fall :) Feeling hopeful.
Self-care activity will be more art and fairy houses!! Whimsy is good for you :)
 
but in the moment I couldn't figure out what was going on. I couldn't name any negative emotions, fear or anxiety, I actually felt accomplished because I actually rode the bike and I was less embarrassed this time. Then I realized, I was myself beating the crap out of myself, Saying things to myself, that I would never say to another human. When I noticed the negative self-talk, I replaced it with positive self-talk and that helped the pain.

Hi Margot! I love this and the realisations you had here are brilliant. Whilst I would never encourage someone not to ask themselves what was going on emotionally (it's hard to get a lot of people to this point), it can also simply be a conditioned response to the activity (or a conditioned response to physical activity in general, which is created based on the initial belief in there being a structural issue, like you said later on the brain is undoing this conditioning and it does so by feeling safe). It's still TMS there - I just don't want you to think (not that you do think this way, but just in case) that if I can't explain it emotionally then that suggests it is structural, not at all.

I slept well and woke up with very minimal soreness. Just the kind of data my brain needs to feel safe.

Spot on! That's great TMS evidence.

Another thing I wanted to say too was inspired by I think your post yesterday, and you said that you had proof of it being TMS and NOT fibromyalgia. That may be true, but potentially a quicker way to belief is to question the idea of fibromyalgia in the first place (if it is still lingering as a doubt in your head). What is fibromyalgia, well the word gives it away fibro = fibrous tissues, such as ligaments and tendons, myo = muscle and algia = pain. So all it means is widespread muscle and tissue pain. Not much of a diagnosis is it - given you already knew that and you're the one experiencing it! Not only that, but there's no explanation or underlying pathology for it, the best explanation for why is nervous system sensitisation, which is TMS! So you've never had fibromyalgia in the sense that its a disease with it's own underlying pathology (in the absence of an auto-immune condition or nerve disease, but then those are their own conditions independent of fibromyalgia which explain symptoms). If all that fibromyalgia means is that you have widspread pain, then you've had it for as long as you have but in the absence of another explanation for symptoms it's TMS. I.e. in the absence of another explanation, fibromyalgia is TMS.

What fibromyalgia does is that it serves to validate someone's symptoms with a catch-all description diagnosis when nothing else makes sense. I understand the need for validation, but at what cost here? TMS validates everyone's symptoms whilst not falsely claiming there to be something wrong with someone's body. Hopefully that helps - you never had fibromyalgia in the way that is fuelling your fear :)
 
Thank you so much. What a BS diagnosis right!! When I recieved that dx it validated my experience. I needed that back then. So I honor the function of the dx and reject it. TMS is a more accurate dx i agree!! Its a Conditioned response for sure. I call it a pain habit, my body is used to feeling a certain way at a certain time of day. So it makes sense that there would also be a conditioned response to activities as well. There are alot of feelings that come up for me when I think of being misdiagnosed.... mostly anger. I never had fibro and living as if I did actually made me feel worse and allowed my muscles to become deconditioned. I stopped searching for answers and settled into the BS dx. Thank you again! You have such a great way of explaining this stuff, it makes so much sense.
 
Thank you so much. What a BS diagnosis right!! When I recieved that dx it validated my experience. I needed that back then. So I honor the function of the dx and reject it. TMS is a more accurate dx i agree!! Its a Conditioned response for sure. I call it a pain habit, my body is used to feeling a certain way at a certain time of day. So it makes sense that there would also be a conditioned response to activities as well. There are alot of feelings that come up for me when I think of being misdiagnosed.... mostly anger. I never had fibro and living as if I did actually made me feel worse and allowed my muscles to become deconditioned. I stopped searching for answers and settled into the BS dx. Thank you again! You have such a great way of explaining this stuff, it makes so much sense.

It's completely understandable and I would be angry too! Whilst not on purpose, you were let down by the system (and there's nothing you could have done as we put our faith in the system + you didn't know about TMS). I'm so glad you're here now :)
 
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