Getting Worse Not Better, now what?

So I have been putting off posting for awhile. It seems like I have had trouble starting certain things and I don’t know why. For example, I had been playing basketball a lot but then I had real injuries to both my ankle and my hand and had to stop for about 3 months. Ever since, I have been very hesitant to return to athletics.

Anyway, it seems like things have been worse ever since I bought into the TMS idea about 15 months ago. Ever since I have had an incredible sense of sadness every now and then like I want to cry but I can never actually cry. It is particularly strong when I read others’ success stories. I had a ton of symptom imperative (my hip, and then my knees where I couldn’t walk for a few days) after initially starting physical activity a little over a yea rago. There have been a few times where my symptoms have seemed to subside and I think that healing is around the corner but then they come back stronger than ever. Overall, I would say that physically I am feeling worse than when I first discovered TMS.

Brief history, it started with tingling and constant headaches after a couple of concussions. Then I had tingling/numbness/weird nerve sensations in my feet. That crept to my lower back. Then I had a couple “incidents” that triggered it full on. Terrible back pain and the nerve feelings in my feet being unbearable.

Everything had been stable for about 5 months until mid-February. I had this constant pain in my hip that had been there for months and I couldn’t remember how it started. I had something much worse on my other side and it left after a week when I accepted it was TMS. I just wasn’t having the same luck. I tried doing some stretches which I wasn’t worried about in the least. However, afterward I had a new terrible nerve pain in the back of my upper legs. The pain in my feet also returned full force. Last week I noticed that the pain in the back of the legs hadn’t been there for awhile and as soon as I thought that, it came back and now all my symptoms have come back stronger than ever. I have back pain again, lower back and a particular tightness right in the very middle of my back that I can only feel when I bend over. I hadn’t had any back pain or butt pain in months and my feet had been manageable. Now because the pain is so much, my focus is starting to get back on the pain when it had taken me so long to stop thinking about it all the time. I have pain in my back, butt, and weird nerve sensations/pain all the way down the back of my legs to my feet. Sometimes my feet feel like there are claws inside. Now any kind of movement sets off some new symptoms.

This is beginning to shake my confidence in the TMS diagnosis. I don’t know what is wrong and why I can’t seem to get any better. Sometimes I feel like I will always be stuck like this and won’t get back to any kind of normal.

I have identified all my stressors and notice that symptoms increase with certain stressors. Some people say it's what you don't recognize but I have gone through everything in my life and there is literally nothing left that I haven't identified. I've also noticed that I have been a lot angrier since I have delved into TMS. There's a lot of things that anger me and many I feel helpless about.

What am I doing wrong? What do I need to do?

 

Hi, NP (how about we change your name to No Pain ) It SOUNDS to me like there is TMS mixed up in the symptoms and history you describe. Some of the answer (I suspect) is in the statement "there is literally nothing left that I haven't identified." In my case, I might be comfortable saying that I've covered the territory, but there is a lot basement rock under the surface that I'll NEVER see no matter how much looking I do. I'm at a point in this TMS work at which I'm pushing into the territory I've mapped out. This means finding ways to more deeply examine my assumptions about the things that make me angry (my relationship with my recently deceased father, and now--surprisingly--my mother, and my five siblings). It's rage all the way down and in all four directions. What's helping me process these half-understood/partially felt feelings (brought out more fully through rapid journalling) is Byron Katie's "The Work," which is a fairly simple method of inquiry--asking four questions about your assumptions. What I like about her work, is that it's giving me a formal means of breaking into my own habitual thinking so I can see it anew. First we cover the ground. Then we dig into our discovered surfaces. There's lot's of ways to do this--finding the right questions to ask is key (as Baseball65 has said).

Sometimes (a lot of times?) it can be a slow, frustrating process. I had a frustrating day today. With low back & butt pain. But I was able to connect it to some stuff going on with family (which has ramped up the pain) and at one point I was able talk to my brain in a confident, parental way, say what I understood was going on, that I didn't need the distraction--go ahead, bring on the freaky emotions--and the pain dialed down. So, a little success. I rode nine miles on a bike today without much pain. And then later, some pain. My point is that it's helpful to see that pain varies across time, and I find thinking about it that way is encouraging. There's nuance in the day, a million moments that resist a blanket label. Finally, I practiced responding positively to my son when he asked how he was doing, and in that moment I could feel how the positive response affected my body, especially when I compared it to what I could said, some negative comment that would have just fed my inclination to negative thinking. Another resource: been checking out Dr. Hanscom's "Back in Control" blog/website. Lot of great information there about play and its affect on the brain and healing. So there's some thoughts for you. Hope I put up something here that gives you a fresh angle. Best wishes.

 

@NervePain, this is what was defined by Sarno as extinction bursts. I was not able to find a good explanation from the neuroscience point of view why they occur, but I believe that I have a reasonable theory why some people do not improve after they had experienced their first extinction burst. There are couple reasons, one being that we set expectations that our improvement should be consistent and linear. Well, it is not. Every force meets a counterforce - Newton's third law of mechanics. Our first breakthrough with pain puts our nervous system out of whatever painful balance it was in, so the pendulum swings back. But then, a second reason starts playing, because we get scared that the pain returned, and in a different spot, and then we lose faith in the very premise of TMS theory - and now we are going down the rabbit hole, with fear fueling the pain. In my healing process, I got scared many times during extinction bursts. I lived through symptoms that were different from my original ones and almost as frightening. I was lucky because I was meditating a lot and it kept my nervous system in check and my fear and paranoia down. There is another factor in play here, which is putting the timeline on your anticipated recovery. No matter how hard we try to say that we have all time in the world to heal, healing can never come soon enough, which triggers new cycle of fear and pain. Some not so lucky people on this forum took years to heal. For me - it was 2 years. Hope this helps.

 

This is so beautifully put, TG. Thank you. I've been on a TMSWiki fast as I try not to be too obsessed with my pain. I'm getting good stretches in terms of serious symptom reduction marked by returns to what feels like square one, or even like you said, weird pains in new areas. And hoo boy, is it upsetting, frightening, and disconcerting. But it's helpful to know that the extinction burst phenomenon is something that can happen repeatedly throughout recovery while still making progress. That's exactly what I needed to read right now.

It's a journey. And you're right, healing can never come fast enough. I have to remember that the speed of this process is not entirely up to me. Much love to all you folks, especially the ones who stick around to help others on their road to recovery.

Keep the faith, @NervePain. I don't know if you have a regular guide, but The Pain Psychology Center has been terrific for me.