Leg pain and numbness and catastrophizing

Hi everyone-
It's been quite a while since I posted anything here.

I have a long history with mind-body issues, from childhood asthma and allergies to 30 years of back pain, IBS, carpal tunnel, foot pain, tinnitus, neck pain...and on and on.

All of these things have been with me at some point in my life. I discovered Sarno close to 10 years ago and got the "book cure" for my back and was pain free for about 5 years. Then things started returning. Mostly back pain and IBS. The IBS seems pretty resolved, but the back pain is still there and a new manifestation of TMS appeared last summer.

My wife and I were walking around the neighborhood when after about 1/2 mile I suddenly noticed my left calf felt numb. Not all of it, just the front of it...my shin. Of course the first thing I did was panic.I'm a very active person. I like to bike hard for long distances and do long walks. And if I have one over-riding worst-case scenario fear in my life, it's losing my mobility.

My wife and I took a trip to Northern Michigan last summer and planned a lot of walking. The reoccuring numbness and my anxiety about it put a big damper on that trip. Then my grown sons and I met in Kansas City to ride 150 miles on the Katy Bike Trail. My leg was fine cycling, but the whole trip was nerve wracking for me. I constantly worried about my leg giving out.

Finally, it nearly ruined a family trip to Canada in the fall. Some days we all walked up to 10 miles around Montreal and Toronto. Yes, I made it. But I was constantly monitoring my leg. Constantly worried. And although I made it, I had several episodes of numbness.

I've been reading a lot of TMS literature (The Way Out, Steve Ozanich, Fred Amir) doing the curable app and even meeting with a counselor via zoom. And I felt like I was on a good path, making progress. Twice I walked to work (1 1/2 hour walk) with no issues.

However this Sunday I woke up to a really sharp pain, maybe 8/10, in the thigh of the same leg. Walking more than a few steps bring on excruciating pain. The pain seems to radiate down from my left hip. My calf isn't in pain though.

I've still been walking, albeit slowly, while humming, smiling and reassuring myself it's just another manifestation of TMS. But I'll admit, it still scares me.

My Dr doesn't seem concerned (had an xray last summer and he agreed that I have the normal back of a 59 year old man. When I mentioned things like parkinsons he shrugged it off. He prescribed 6 visits to the PT and NSAIDS.

Then I found out 2 weeks ago I have prostate cancer. I actually go in this morning to find out just how serious it is and what treatment options are. Right now I feel like a mess...like a patient and not a person.

Does anyone else have these weird limb pain/numbness issues? How have you dealt with them? The guy I meet with on zoom is a big help, but I have to admit I feel so alone in all of this right now.

Jay

 

@jayMck
First of all, you are not alone! Writing down my support teams by name has been helpful to me. Let’s see: you have “the guy you meet with”, now you will have a team of caring doctors, you have yourself, you have all the folks here. I use a secondary support list too: perhaps spouse, any friends, children, co-workerssiblings.. anyone who shows you respect and kindness.
Fearing being alone should not be overlooked in your journalling. Explore how that feels emotionally. Notice your perceived thoughts on being alone vs your list. You might begin to note what else you need for support at this time in your life.
Read a bit about tms again. Refresh yourself, your Dr. Gave you the all clear.
Give yourself heaps of self compassion! If compassionate care support is offered with your cancer services, take it! You are going through a lot! Be aware of what is stressing you, how you react to it. Take note of your physical feelings and circumstances. How to they relate to your stress eg: travel and symptoms -what emotional stuff is going on to make you feel unsafe at this time?
Feel your emotions, allow everything, understand that you are feeling normal, human emotions and sensations. In essence brush up on TMS work. You could do the SEP here again, or any tms program with the support of the person you are talking to.
Take stock of your victories! You did a cycling trip! You DID NOT ruin a family vacation - you were stressed (take stock of why) but you got through it! Look at your personality traits and see how they contribute to generating internal stress! I like that you started off saying you’ve been doing pretty good -you have!
You might find this thread helpful: https://www.tmswiki.org/forum/threads/flare-up-symptom-imperative.18289/ (Flare up, symptom imperative?)
“What is going on in your life”

 

Of course your poor TMS brain is giving you excruciating pain, in an attempt to distract you from one of the most distressful emotions we humans have to deal with, which is our knowledge and fear surrounding our mortality, and everything that can (in our worst catastrophizing) lead up to our mortality. Our culture doesn't encourage us to be open about this, so guess what - we are stoic and we are positive and down down it goes, deep into repression territory.

In a therapeutic practice called "existential psychotherapy" Mortality is one of the four core issues of humanity (the others are freedom, meaning, and isolation).

In times of extreme distress and duress, I have found it incredibly helpful to get out the pen and paper, and start writing on these four core issues, starting with the most obvious one for the moment. Ten years ago, when I lost two really important people in my life, both younger than me, and both within a short period of time, Mortality and Isolation were the two key issues I examined (Meaning had a role as well).

It was unbelievably freeing to face these issues and to write openly to myself about them, and in particular to discover that in addition to fear, my brain had another reason to repress these emotions, which is that it felt very selfish to be focusing on my own fear of mortality, and to have personal rage at being abandoned by these people I loved who had died.

These four issues are prime candidates for the repression that causes TMS symptoms. I highly recommend examining them in relation to your diagnosis. Facing them takes away the power of the TMS mechanism to cause you physical pain, so that you can
move forward to focus constructive energy on your recovery.

 

I want to add that the ability of our bodies to suddenly create excruciating pain out of seemingly nowhere is pretty astounding. Just the other evening I got up from reading or emailing or whatever to fix some dinner and realized my right jaw felt stiff and painful. I fixed some food and tried to eat but it turned out to be incredibly painful to even open my mouth, never mind chewing anything, even on the other side. There had been no hint of any of this four hours earlier when I'd had a snack. Bizarre!

I can catastrophize as well as the next person, but after many years of doing this, it takes almost no time at all before I am turning my mind to TMS (and in fact I actually sincerely always WANT it to be TMS). In looking back over the day, I realized that in the back of my mind I was holding on to an interaction that was not a big deal in the end, but in which I was a bit embarassed at how I had initially acted - and I was unconciously holding onto the shame and the negative self image. So I said, "Okay, seems like TMS to me, let's see what happens". I managed to eat something (very painfully), took a couple of extra-strength Tylenol and applied an ice pack off and on for a while, and eventually went to bed with a short mindful visualization about keeping my jaw relaxed while I slept. In the morning my jaw was certainly stiff, with a little bit of residual pain, but at least I could open it and eat without the extreme pain of the night before. By evening it was 95% better without any more ice or Tylenol, and completely gone the next day.

Strange, but true.

 

Darling Friend, you are so not alone. Remember 20% of Americans have sensitive nervous systems just like we do. Be kind to yourself, think about, and speak to yourself with loving supportive words. You got this, and whole lot of folks here have got your back. Remind your beautiful body that it is not in danger, ask it what its afraid of, sad about, angry over. Take whatever comes to mind ,and process your feelings around that stuff. This is the door to lasting relief based I can teel from my experiences. I think this kind of work is best done with another person, but doing it alone is fine. Focus on doing little things that bring you joy. I like to watch comedy before I go to bed, Fluffy is my fav. Or I do art or watch fashion shows online. All that to say, relax and have some fun, makes some art. Mostly remember that you are never alone. Invisible arms wrap themselves around you supporting you to calm your sensitive nervous system.

 

I appreciate the support and kind words. It's just hard because right now I feel like I've fallen into a deep pit of fear and doubt. Last weekend was the worst: we planned a family trip to Madison, WI with our grown sons and their girlfriends. We hoped to spend the time skating on the frozen lakes, eating at our favorite places and celebrating our sons' birthdays (they are 2 years and one day apart, 25 and 27. Anyway, the leg pain was really ramping up before we left. I finally asked my doc to prescribe something I could have in my back pocket if things got bad. He ended up giving me prednisone, hydrocodone and a muscle relaxer. In hindsight, I know this was my fear and doubt pushing aside everything I believe about my pain - namely that it's all TMS. On the first day I buckled and started taking them. The pain in my left leg was unbearable anytime I stood up, walked or lied down. The only pain free position was sitting upright in a chair. The drugs did absolutely nothing. And not being able to walk without cringing in pain or stopping to stretch every 30 feet really put a damper on the whole weekend. At least for me.
We got back home last night and I was able to see my doctor today and he's convinced I have a ruptured disc that's pinching a nerve. He wants me to get an MRI and then we'll go from there. I let him know that surgery is absolutely out of the question. He said 90% of people in my shape don't need surgery anyway so not to worry. He sent me home with a prescription for gabapentin (because I came in walking with a limp from the pain and I guess a tortured look on my face) and a referral for an MRI. I think part of me wants to get the MRI just so I can have an actual diagnosis...even if I KNOW that ruptured discs and bone spurs, and all the other problems they'll find are just TMS. I feel like knowing my enemy, seeing it on an MRI might help steel me to fully accept the TMS diagnosis. Afterall, I've read so many stories here that are similar to mine. Has anybody out there been glad they did the MRI?

 

I have a response to the question you did NOT ask, which is: the fact that an opioid and a corticosteroid did nothing for your pain is actually a pretty good indicator that you're dealing with TMS. I have two examples.

When I got pneumonia in 2018 after two months of coughing (not being mindful, not paying attention) the thing that sent me to urgent care was not the cough (although it should have been) but the agonizing mid-back muscle spasms from all the coughing. I got prednisone and oxy (plus antibiotics obv) and finally got to sleep through the night. I told them to only give me 10 of the oxy, and still had 5-1/2 left a year later when I took them to the disposal. IOW, the back pain relief was immediate, and I only needed a few days to take the edge off while the intensity of the cough reduced.

I just told my story last night on a joint pain thread about how a short course of prednisone immediately relieved my just-diagnosed RA pain in 2020 while waiting for the anti-inflammatory chemo drug to kick in. It was like a miracle (and some RA patients apparently get addicted because pred improves your mood, too).

I can't answer your actual question since the only MRI I ever had was for a painful and growing tumor (a benign "schwannoma") on the nerve sheath of my ankle which had to be removed, and the MRI convinced my HMO ortho to send me out of network to the one specialist in the city who could handle the surgery right next to my Achilles tendon. Good use of an MRI, I thought.

 

@jayMck Hi there, There's a lot here and I appreciate reading this discussion. I just re-read your initial post and want to pull out a few threads. I can relate quite a bit to your fear of losing your mobility.

I can also relate to the successful intense physical exercise (more the norm for you & your life/where you want to be) followed by not being able to walk around the neighborhood.

You described 30 years of a variety of symptoms, as well as 5 years of being pain-free as a result of a "book cure." That's powerful! Just on books alone, you found those results for 5 years. There are so many more resources (that you mention later and are using) available now.

You cycled 150 miles on the Katy Bike Trail!! Sure, you were panicked that your leg would give out....but it didn't. Cycling 150 miles is a level of fitness that many many people will never get to....Many people wouldn't even want to get there.
The rationalizing mind could jump in here....I did it over several days. It's just a flat rail trail, not hills. I should've been able to crank out 200 miles in that time. Etc. etc.
(That's what my mind does to me. Our brains get in our way in different ways, right? So, I'm not sure this is how you process things.)

I also really like the suggestions you got here, including @Cactusflower reminding you that you are not alone and have so many levels of support. That is super important.

Finally, the trips/explorations you have with your wife and adult sons are beautiful. Consider yourself extremely fortunate to have those family relationships--and shared interests. It's really cool to hear that your adult sons pulled off that cycling trip with you. Just as cool, the walks around the neighborhood with your wife and your other trips. You have so many reasons to dive in here with TMS work and come out the other side pain-free. You deserve it! Hang in there.