Degrees of pain and functioning.

[Huckleberry]

Hi guys...not been about for a while but am currently on a bad flare of pain that has once again led to a few questions for me.

My current flare up is particularly painful and is probably as bad as it has been since this started 4 years ago. I have remained active over this period and sometimes a flare can coincide with physical activity whilst other times it doesn't.

Last Saturday I climbed Ben Nevis which is the highest mountain in the UK...about halfway into the climb I'm quite sure that I pretty much caught myself saying/thinking to myself that I felt good and that my back burner lower back/hamstring stiffness and pain was not bothering me at all. You can probably guess what happened next, over the next few minutes my back started tightening and my pain level slowly increased. I managed to climb and descend the mountain and felt Ok'ish. The following day my back felt ok but my left quad muscle was incredibly tight and stiff compared to the left one, this always seems to happen and felt really painful to apply any pressure....it almost feels like it has been overloaded with lactic acid. We drove home on the Monday (a long 12 hour car journey) with my leg still feeling the same but it wasn't actually until the Tuesday morning that the usual intense flare pattern of lower left sided back/buttock pain and a nerve pain type feeling into the left leg started...it has been ongoing with little sign of abating.

What I never really seem to understand is that whilst I get pain that appears to be getting more intense and more frequent, I never seem to suffer from any loss of mobility or function. Even though I am in 9/10 pain at the moment I feel that physically I could go run no problem...it feels like it is purely the pain that would stop me. Outside of a flare I do feel stiff around the hamstring etc but am still able to stretch fine etc and I never ever seem to get a spasm reaching for something or bending over etc...its like the stiffness is just there but doesn't really restrict me. I think the TMS practioner I have seen places store by this as he states that if I did have an SI joint/structural problem he thinks that my mobility etc would have been compromised by now bearing in mind the length of time I have been dealing with this.

From a TMS perspective if I did have to describe my pain and discomfort it does actually feel like a severe tightness and often a vice like feeling...I am no expert but I'm thinking that this could well be explained by the oxygen deprivation theory, it does seem interesting that the pain isn't accompanied by any reflex issues, loss of function or mobility or even any subjective let alone objective weakness.

Something else that seems to make sense to me regarding the increasing pain level etc is the theory that once the nervous system becomes sensitised to the pain pathway the strategy becomes more effective and better and better at producing the pain. I can't help but feel if this is what is happening with me. a couple of weeks ago I went mountain hiking nearly every day for 5 days running with no flare ups at all but then all of a sudden I get a flare up which it appears I should be attributing to the Ben Nevis climb but is just doesn't make sense from a structural or even logical perspective...I have of course attempted to frame this all within an emotional explanation but nothing really seems to have jumped out as a possible explanation for the current flare up.

I'm wondering if others have had this particular issue of pain and stiffness without really losing function or mobility...if I had to describe this better its like whilst subjectively I feel incredibly tight and stiff it doesn't objectively hold me back if i push through the pain. I am of course currently stuck in the typical fear pattern that strikes alongside a pain flare so if anybody can offer me any insight I may be missing I would be grateful.

thanks for reading.

 

[Anne Walker]

Huckleberry, I haven't figured out why exactly, but I have noticed for quite a while that I often get hit with an increase in pain when I stop and reflect how well I am doing. This happens to me so frequently that I purposefully avoid thinking of how painfree some area is. It happened just the other day when I noticed how good the right side of my head and shoulder felt. The exact same area that was seized in spasm and tortured me for a year and a half. The same area I obsessed on, tried everything under the sun to fix, and here it is, relaxed, "normal" painfree, feeling good... I hadn't even noticed the exact day when it had gotten better. And then within a day, I could feel some of the old pathways firing up. I think someday you may even look back and laugh at the fact that you were climbing the highest mountain in the U.K., you stopped to reflect on how good you felt, and then within days the TMS has you back focused on the physical, looking for explanations, dissecting, even at the same time it is clear you don't really believe there is a structural cause. And yet you are once again focused on the physical. Trust me, I am not trying to pick on you, but for writing such a long, detailed post questioning all the physical aspects of your pain, you only devoted one sentence to the psychological:

"I have of course attempted to frame this all within an emotional explanation but nothing really seems to have jumped out as a possible explanation for the current flare up."

Perhaps you have attempted to come up with an emotional explanation but it is pretty clear where the majority of your thought processes are being pulled.
I would say this is classic TMS at work and the only remedy is to treat it as such. It may be hitting you particularly hard at this moment because it knows with all your mountain climbing that is what it is going to take to get your attention. Don't give in. Trust wholeheartedly that there is a reason it is trying to distract you even if something doesn't immediately jump out. I know this is a huge drag but I am confident this will be a momentary bump in your recovery. Wishing you the best.

 

[Walt Oleksy (RIP 2021)]

Yes, Huckleberry, it is best to think psychological than physical.

Maybe something recent has triggered your memory of a past event that you have been repressing.

Most of our pain comes from things going back to our childhood.

 

[Huckleberry]

Thanks for the replies guys...much appreciated.

Yep, I'm aware that the focus and preoccupation can easily bring on the pain or amplify the level and I am trying hard to avoid that trap.

Whilst the pain was blatting away yesterday and early this morning I can actually feel that it is once again starting to settle down. This is currently one of the main stumbling blocks I'm having is totally repudiating the physical/structural as it feels exactly like inflammation takes place and then settles down...this pattern seems to always take the same amount of time over 3 or 4 days.

I'm wondering if this pain pattern is typical of TMS...I do seem to have constant mild discomfort which feels like a back burner annoyance most of the time but then I always get pain flare ups which seem to be quite random in that sometimes that correlate to physical activity but at other times they don't. The one thing I've noticed as mentioned that the flare period always seems to last the same amount of time...I don't really understand how this would fit in with the TMS explanation but then again when I consider that this has been happening for 4 years it doesn't seem totally consistent with a physical explanation. I have noticed that the pain level and intensity of the flares is increasing which I'm sure is consistent with the learned pain theory. Any thoughts or takes on that would be great.

thanks again...its good to know there are always people on here willing to help and give advice.

edit: just read this back and there I go anne on the physical path again...I think I'm on autopilot I'm tempted to delete it lol.

 

[Anne Walker]

Ha Ha Huckleberry, you're funny. I am curious, do you really have doubt that you have TMS? I had a few experiences this last year which really helped convince me without a doubt that my pain is caused by TMS. The big one was working with my somatic experiencing therapist and one session the pain moved around during the hour I was working with her. I'm not exactly sure how or why and I have not yet been able to do it on my own, but since I experienced it first hand, there was no way for me to question it. I spend a lot of time in my head, planning for the future, trying to figure things out, worry, projecting... That is why I started seeing a somatic experiencing therapist. I felt I needed to learn how to be more present in my body and to do something there besides thinking about the pain non stop, what was wrong, why it was there, how to make it better.... talk about a broken record! As I am more consistently embracing life and thinking psychological, it is becoming clearer to me what purpose the pain serves. It seemed punishing and illogical to me in the beginning. Recently the pain moved to my left shoulder and the other day as I was googling rotator cuff injuries and watching videos on home exercises to help it, I suddenly stopped in my tracks. How is it possible it got me again? But it did! I don't think you can remind yourself enough that the pain is a distraction. That is its sole purpose. Anytime you find yourself thinking about the pain, analyzing it, looking for a pattern, monitoring it, you are perpetuating and encouraging the TMS. Imagine if we put that much time and energy into actually trying to figure out what our subconscious is trying to distract us from! I imagine Huckleberry you tried some therapies to fix the pain from a structural explanation. I know I did. And many of them worked to varying degrees and were what enabled me to survive the last 20 years. But now I know better and yet it still gets me at times(like with my rotator cuff recently). I personally think it adapts itself to whatever pattern distracts us the most. Keeps us overthinkers on our toes.

 

[Huckleberry]

Thanks again Anne. My belief in the TMS explanation for my pain varies but I'm sure one of my main problems is the inability to commit 100% and to constantly get drawn into the physical/structural paradigm.

Its awesome that you have had that insight with the pain moving but I've never really experienced that. On one level the TMS explanation is a no brainer...I'm 47 years old and I have always had every single TMS personality trait being a total control freak and borderline OCD sufferer. My symptoms started 7 years ago with a health scare that led to a plethora of symptoms which looking back I can see where physical anxiety in nature. I was actually aware of TMS theory back then and remember actually wishing my symptoms had been back pain as I would be reassured by this...go figure. Whilst all my other symptoms resolved and my health anxiety calmed down my lower back pain and leg pain started from the smallest niggle about 4 years ago and has got worse and worse. During this period I have lost both my father and mother to cancer, lost my job and also had my son. On the flip side I am slightly more financially secure in the short term but I do still worry about the future a lot.

Whilst all of the above is the perfect TMS storm I still harbour the physical worry. I did see a chiro early days who diagnosed me with a twisted pelvis/SI joint issue and advised me that things would get worse etc etc...this undoubtedly planted a huge nocebo in me and it does feel as if her predictions are coming true.

There are times when I feel I sort of catch my pain out such as when it flares for what appears to be no physical reason but at the same time when I think psychological at these times I never seem able to locate anything. If I had to guess what my underlying angst is that could be triggering TMS it would be the health scare at 40 and the development of a fear of mortality from this point.

I have seen a TMS therapist in the UK on a number of occasions who is sure I have TMS. He is also a physiotherapist who applies that modality to acute injury and when he examines me he notes that my functioning and movement is all good but that I am stiff on my pain side (left) which he attributes to unconscious muscle guarding and tension. The thing that does make me doubt the TMS and ischema theory is that whilst I have a constant underlying discomfort when my pain flares it them seems to gradually settle down...like an inflammation process. I hear that most people with TMS feel their pain during flares often switch off like form a switch.

So yes, even after all this time I am still struggling with the TMS diagnosis. What is bizarre is that my thoughts on the pain are all over the place and change constantly. When in almost pain free its like I'm sure it was TMS etc etc but when it intensifies or flares I just get sucked back into the fear of the physical and catostrophising which I know is pouring petrol on the fire.

I've mentioned this in other posts but it does feel like I've got all the TMS smarts and knowledge but when it comes to walking the walk I struggle...I'm sure I'm not alone on that one though.

 

[Anne Walker]

Yes, I am sure you are not alone in regards to walking the walk. I know I have a lot more knowledge than I actually have been able to put into practice in the past and I use that fact to beat myself up all the time!! I think its interesting that you mentioned fear of mortality because I think that is one of my big issues as well. I have been afraid of death since I was a young child. When I was 13 years old I went with a friend to visit her father in Honolulu for the summer. I would wake up in the middle of the night in a cold sweat and I clearly remember thinking "it doesn't matter if its in 5 minutes or 50 years, I am going to die!" Even as a toddler I was afraid of death. There was a book of bible characters in our living room and one of the pictures was of a very old wrinkled woman and her name was "Annie." The drawing terrified me and once my older brothers discovered that they would secretly scare me with it when they could get a chance. It bothered me so much that one day I threw it in the fireplace and burned it. I remember my parents thinking it was amusing that it could bother me so much. I think I was less than four years old. So, I don't ever remember not being afraid of death and I have always envied people that had a faith that helped them with that fear or others that simply didn't feel compelled to think about it much. I ended my summer in Hawaii early because I was so preoccupied with the inevitability of death. At the end of the summer I decided that I was too young to worry about death all the time and I would enjoy life as much as possible and wait until I was really old, 30, to resolve this fear somehow. I had little things beforehand, but at 32 I had my first major TMS episode with a ruptured disc in my back and panic attacks. It has been one thing or another ever since and now I am almost 52. I have suspected for some time that fear of mortality is one of the driving forces of my TMS. My father was a criminal defense attorney and he died suddenly about 15 years ago, just 4 days before my first son was born. He was an alcoholic for many years and created a lot of chaos in our lives. I asked him once about it and he said that he created all the chaos because peace scared him. When it was peaceful he thought too much about death. I thought that was a really honest answer. I am not an expert but I do believe that the TMS can create or aggravate inflamation. When my right shoulder was in spasm for over a year, it was clearly inflamed. I had an MRI and have multiple ruptured discs in my neck which in my doctors and physical therapist's world was a very definite and logical explanation for my spasms and pain. It was extremely difficult for me to ignore their recommendations. And yet here I am, a little over a year later with no pain or spasm in my right shoulder and neck except occasionally. Now I have left rotator cuff pain but I am not thinking about it too much. It is actually much easier to ignore than the right shoulder occipital pain and headaches. My TMS pain has never switched off, it has always been a very gradual lessening except that one time in my therapists office. And then it was more like the fading of a spotlight. As the pain came up in one area, the pain in the other area slowly faded out. But you have to put in perspective how much pain I have had and how long I have been working on this. None of it has been easy and every little success bringing me closer to belief and conviction has been hard earned. Even now as I write this I can sense the resistance rising to go to the heart of the fear. "lets think about death some other time..." It makes perfect sense to me that your doubt about the TMS diagnosis would grow whenever the pain increases. That is what makes the pain distracting! When you are in doubt about TMS then it is an entirely different call to action - research to be done, doctors and physical therapists to see, exercises, medications, monitoring based on your pain levels what works and what doesn't. I have frequently felt completely lost when the pain level rises or a new pain appears. I want to stay committed to the TMS diagnosis but it only leaves me one place to go - the psychological and emotional - and I don't want to go there. The pain is physical and I want to stay in the physical, it is what is familiar no matter how tired of the pain I am. Huckleberry, you have had such big, life altering events happen in the last 4 years. You have all the personality traits, your TMS symptoms started after a major health scare, and you have a therapist who has diagnosed you with TMS. It all adds up in my book and I think you need to let go of the doubt. You have everything to gain and nothing to loose. I had surgery for my back 20 years ago, spent thousands of dollars on every kind of therapy you can imagine, and I often had eventual success on whatever I was treating at the time. But now looking back on it I realize that once I resolved one problem then later on another one appeared. I didn't have the perspective to connect the dots and realize they were all manifestations of TMS. If you do have TMS, I think it is important to recognize it and learn how to manage it. The encouraging news is all the people who have successfully learned how to do that.

 

[debbi1955]

Anne - I'm on Day5 of SEP, and I'm starting my journaling in earnest. I've been making my lists of childhood memories to explore, but you made me think of a couple more. I also had a very early fear of mortality. I was 5 when the Cuban missle crisis happened. This is a funny story in some ways, but it wasn't when I was living it. My bedroom was off of our kitchen, and my father would listen to the radio while having his coffee in the morning. I think my parents assumed I was sleeping, but I often would wake and listen while lying in my bed. I was too young to understand everything they were saying about the Cuba situation, but I could understand enough. They were not playing music and the announcer sounded scared. We were also having air raid drills in school where they would emphasize getting away from windows. My 5 year old mind put together that there were going to be bombs coming through the windows, and I was picturing bombs like the ones in cartoons - round black orbs with fuses. My bed was next to two windows - one at the foot, and one at the side. I decided to sleep on the floor so that I could run when the bomb was thrown through the window and have a chance of escaping it. My mom found me sleeping on the floor, and wanted to know why, and I didn't tell her why (I had already learned at that age to keep my fears to myself), so after that I would tuck my sheets in tight and sleep hanging over the side of my mattress in a hammock of sheets hoping I'd still have a head start if the bomb came through the window. At one time, I could swear I looked out the window and saw a guy in a black trenchcoat with a black spy hat standing in the back yard watching my window - it had to be a dream, but it still feels like a memory. Boy, I need to journal about that one - my heart is racing just thinking about it.

I also remember a picture my grandmother had in her spare room. It was the virgin Mary holding her chest open so you could see her heart. It was a large picture hanging on the wall - probably a couple of feet high and across - right at the side of the bed. I know it was religious symbolism, but I didn't get that as a kid. It had gold foil, and when I'd sleep in that room, and cars would go by, their headlights would make the foil sparkle, and I'd be aware of the lady with her heart showing staring at me. I was always afraid to sleep, because I was afraid that the people that did that to her would come to the room and do the same to me.

Not that I'm happy for your traumatic childhood, but I felt some relief hearing from someone else who had a similar fear of death so young. Those memories caused me some concern over the years.

 

[Anne Walker]

Wow, Debbi, those are such interesting stories! Thanks for sharing. I also find it comforting to explore these childhood fears knowing that it is perhaps a common childhood experience, to use our vivid imaginations in this way. Life as a child is very rich and exciting.. Its like living in an action movie! And isn't it interesting how we learn to keep these fears to ourselves. Where does that come from? I know I have found it very healing to comfort my daughter with her anxiety and fears. Its like I am telling her what I always wished someone would have said to me "you are protected and safe." Children are too young to understand and interpret some of these things. I think it is important to help them feel safe and secure.

 

[SSG]

I know this post is a few months old, but thought I would share and ask some questions. First, Huckleberry, how are you doing now? Any progress? Secondly, I can definitely relate to a few things you've said...like the pain not hurting until you think "it's not hurting!" This happens to me daily! My pain is down my right leg, mostly in the calf area, but sometimes in my hip and hamstring. I also have had a huge health scare last fall...Huckeberry would you mind sharing what your health scare involved? I think about it every day, and unfortunately was never told 100% I don't have it...more like "time will tell." Like you, I am able to function daily, though I find myself not doing quite as much. The pain is intrusive, but I'm still able to get things done. I have lots of anxiety ( which I've never had before). Finally, I can totally relate to the fear of death/mortality. I am a Christian, but I have always been a worrier of sickness and death. I often remember thinking as a teenager that I would not live to be an adult. Finally, does anyone out there have an opinion on hypnosis to help with TMS or anxiety medicines? Thanks! Hoping you are doing better, Huckleberry!

 

[Huckleberry]

Hi SSG...many apologies for only replying now but I don't visit here often as I'm not really convinced that this environment is healthy for me as I just find myself TMS'ing about TMS whilst here.

Things have not really improved for me and I'm still dealing with the chronic LB/SI pain on a daily basis and the regular flares of intensity.

My health scare about 7 years ago related to a lump I found which I convinced myself was cancer...this was dispelled but this led to a 5 year period of severe health anxiety. I have got a handle on the health anxiety to a large degree but have been plagued with the back issue for the last 3 years...all during this period I have had my son, lost my mother and father to cancer and also have had many existential worries and angst. All this stuff screams TMS but I struggle to accept on an emotional level rather than the logical level.

Regarding hypnotherapy I have never tried that but I did try anxiety meds during the health anxiety period but theses didn't really help me.

Regards

 

[SSG]

Huckleberry,

Thank you for your honest response. I struggle with the emotional vs. physical causes myself. Though I know that when I am intensely preoccupied with something that is not highly stressful, that I barely notice my pain. To me, that goes a long way to telling me that this pain has some root somewhere in my psyche. I can almost physically feel myself tightening as I think of my health fear and therefore my anxiety increases.

Sounds like you have been through some really difficult stuff over the past several years, and I know that one thing I am working hard on is trying to be more forgiving to myself. This is just my two cents...but maybe you can do the same and then force yourself to move on? I hope and pray the best for you and your family!