Burning Relapse – is this TMS pain???

I know this may be a bit longwinded, but I wanted to provide as many details as possible for others to help me understand if this is TMS or an actual nerve condition in my body. First, some details about me. I am a healthy, 5’9, 165lb, 49-year-old male with no major health issues. I am a very detailed oriented, type A personality, with a critical thinking and problem-solving mindset. These attributes are what made me successful in my career a but aren’t always good when dealing with stressful situations that are of unknown origin. The fact that I could never truly say with certainly the root cause of my pain was very frustrating for me. I spent many nights trying to figure it out root cause.

In 2011, I had an issue with Reflux. I didn’t have the typical GERD where you would get heartburn in your chest. I had LPR reflux which was more difficult to treat. This repeated reflux that would go up to my larynx caused horrible tightness in my throat and a lot of phlegm which caused me to clear my throat a lot. I went from doctor to doctor and no one could help me. This caused me a lot of anxiety and stress which I am sure made the tightness in my Upper esophagus sphincter worse. I finally found a doctor who specialized in LPR Reflux. Through diet modification and reflux medication, the phlegm and throat c went away, and my upper esophagus swallowing motility was synchronized. However, my most distressing symptom, tightness in my throat, remained. The doctor felt administrating Botox in my Upper Esophagus sphincter would relax the muscle and when it wore off in a few days, I would feel normal. The weird thing was that after the Botox injection, I still felt my throat was somewhat tight even though the muscle was completely relaxed. In fact, we measure the pressure, and it was 0hg! The doctor concluded, it’s possible my Vagus nerve became hypersensitive from many months of repeated acid exposure to my Upper Esophagus sphincter. Her fix for this was to prescribe a dose of amitriptyline (5mg). It helped with the tightness but then I started to get a burning pain at the top of my chest a few inches down from my Adams Apple. We did a bunch of endoscopes tests which showed that my esophagus looked perfect and that the burning was not caused by acid. It had to be nerve related. The doctor said I can’t do anything else to help you. I was mortified. I went front this terrible tightness in my throat to this excruciating burning pain and you can’t do anything else to help me rid this pain? I was devastated. From there I went to some of the most respected GI and ENT doctors in NYC with no one having a clue what to do.

I tried getting massage therapy and acupuncture where they rubbed and or stimulated that area. After about 2 months of doing this, with zero relief, the pain then moved from my upper chest to the exact spot location in my upper back lower neck areas. And then, I’d say a few days later, it spread to both shoulders. That’s where it stayed for good! I was in tremendous burning pain and developed allodynia. This is where your skin feels like sunburn and clothing or any contact can make the pain worse. It was uncomfortable to wear a shirt! I was devastated. How did I go from reflux to this?????

It’s now 2012, I sent months going to over 30+ doctors ranging from neurologists, pain management, infectious disease, anesthesiologist, endocrinologists, immune doctors, etc. I tried so many different drugs, IV steroids, epidural Injections but nothing seemed to help. I was a crying every day and slipped into deep depression over my pain.

Over the course seeing all these doctors, I was left with three diagnosis: Brachial Plexus Neuropathy, Small Fiber Neuropathy, Central pain/Chronic Regional Pain.

Brachial Plexus Neuropathy – usually has motor issues with movement like frozen shoulder. All I had was burning.

Small Fiber Neuropathy – usually in hands or feet. Because it was in my upper extremities, they couldn’t do a biopsy. Also, EMG won’t show anything. All blood tests were negative

Central pain/Chronic Regional Pain – Didn’t have an injury. Very rare it happens bilaterally, but the allodynia was a symptom that matched up

Some doctors hypothesized that I may have gotten a virus or damage from all the tubes they stuck down my throat, or possibly that my Epstein Barr virus was reactivated from the immense stress over the past 6 months which caused nerve damage or some type of central nervous system disorder. As mentioned, I love to troubleshoot and figure things out. I never felt good or got closure on the root cause. I eventually had to give up trying to figure out the etiology and focus what to do to get the pain under control.

I went to a therapist, to help cope with the pain as my wife couldn’t do anything more to support me. He told me to stay in the now, make room for the pain, don’t fight it.The the pain was so bad, I just wound up crying for the entire session about the pain. I think it did about 10 sessions. It was a release of anxiety and hopelessness that buildup over the week. Crying didn’t relieve that pain at all.

All the test that I had performed never pointed to a 100% smoking gun diagnosis but unfortunately what I was told is that with some type of idiopathic nerve pain, your diagnosed is done by process of elimination. All I had left was figuring out who best to help me manage the pain

By 2012-2013, I found a pain management doctor that worked with me. I wound up taking 500mg of Lyrica and 40mg of Nuedexta. It reduced the pain by 30%, but I was still suffering. The nights were always the worse.

I believe by 2014, I began to make recovery. The crazy thing is I don’t really remember how long and when it took to get better. Looking back, I repressed this horrible experience in my life. I think over the next 3 years I began slowly feeling better. I would have one good day or week in the month and three bad ones. Then two good weeks and two bad ones, etc. until finally I felt good most of the time. I would have pain flairs for a few days. Stress and weather would also play a factor sometimes in the flairs but not always.

By 2016 I was pain free. I had my life back! I got a new job, felt empowered and had purpose. By experiencing the pain, it made a more caring and compassionate person. I was so grateful to be alive again.

By 2017, I slowly weaned off the Nudexta and Lyrica and by 2019, I was only on 100mg of Lyrica a day. I couldn’t seem to get completely off but Lyrica, but at a 100mg a day, there were zero side effects. I remember having small flairs that would last a few days every time. I went down on the Lyrica

Fast forward to 2021. In May 2021, I began to get lightheaded (not dizzy) out of nowhere. Some days It would be all day, sometimes it just happened at different part of the day with not pattern, not known trigger. It was hard to concentrate. I went to a host of doctors. MRI/MRA of Brain, my vestibular system, my heart, my blood work. While getting various tests, I had a bad CT calcium score on two of my arteries in my heart. I was a bit stressed out that I had occlusions, so I got an angiogram. It turned out my arteries were only minimal blocked, and there wasn’t anything to worry about other than being preventative by going on a statin. As I continued check things off the list, I had a few blood tests that had elevated RBC. A hematologist diagnosed with Polycythemia Vera, a rare cancer of the blood. But wanted to confirm with more blood work. I was stressed out waiting for the blood results to come back. It turned out that’s everything was normal - I don’t have Poly Vera!

Thank God, I am healthy but still lightheaded. Well, my neck is leaning forward as I have poor posture as I am in front of a computer all day. It was recommended to get massages to loosen up knots as well as do physical therapy. Back when I was in pain, you couldn’t touch my upper back area, but I was able to get massages and PT with zero pain. This went on for 3-4 weeks and I was still light head. We are now approaching the end of July and my doctor said the only thing that could be causing your lightheadedness is the Lyrica. I said, yes, it is the number one side effect, but I’ve been taking Lyrica for over 10 years and I am on a low dose and never had an that side effect. He said try the extended-release version. Its 82.5mg so its close to 100mg and it will possibly distribute the drug more evenly throughout the day. I took the drug for 3 days and felt very tired by the 3rd day. I started to burn in my neck and shoulders. I immediately switched back to my 100mg per day, but the burning persisted.

I felt scared, OMG, the burning pain is back!!! This was the one thing in my life I never wanted to relive. Did the combination of massages, PT and switch the drug cause my pain to come back? My doctor told me we need to get this under control as quickly as possible. Over the next 2 weeks I went up to 250mg. I can’t seem to tolerate more.

At first, I felt like it’s helped. I had a few parts of the day where I was light head with no or minimal burning, but most days were burning. Now I don’t have lightheadedness, just burning. It reminds me of when I had tightness in my throat and burning and then just burning back in 2011. Since the burning came back, I’ve been so depressed and anxious. I feel like I was teleported back to my past and I am back in this horrible pain cycle.

Two weeks ago, I purchased The Way Out and went through the 28-day program on this site. At first it seems to help slightly. I felt empowered by the possibility, that there is nothing wrong with me and it’s just my brain sending out false alarm signals. I was in less pain for a day or two. Then I had a flair and have spent the last week in more pain. I have been practicing somatic tracking and trying to stay positive, but it hasn’t help reduce the pain thus far.

I need help trying to understand if this is really nerve pain from nerve damage or Central nervous system issue or TNS pain??

 

Just the sheer variety of your symptoms indicates a likely CRPS - Chronic Regional Pain Syndrome. As someone who successfully recovered from CRPS without medications or other medical interventions, purely using mindbody approach, I can assure you that what you have is most likely TMS, and that with patience, determination and focus, you can fully recover. I suggest that you visit the website that another former CRPS patient @miffybunny and I have created. It is specifically focused on CRPS, as we believe that CRPS is one of the most extreme forms of TMS that requires special attention and approach, and definitely exceptional patience:

www.defeatcrps.com

One more comment. This sentence from your post caught my attention: "Two weeks ago, I purchased The Way Out and went through the 28-day program on this site." If you completed the 28-day program in two weeks, you are rushing through the experience that should be taking at least 28 days - Alan Gordon created a 28-day program for a reason. Your problems are decades in making and run deep, you can't fix them overnight or even in two weeks. It took me almost 2 years to fully recover, but every day of my journey brought a long-lasting positive impact, I am much better off today than I was 6 years ago, when my CRPS hit me hard.

 

Thank you for replying . I agree that what I have closely resembles crps but I don’t have 2 or more symptoms as per the Budapest criteria https://www.ncbi.nlm.nih.gov/books/NBK464482/ (Research diagnostic criteria (the ‘Budapest Criteria’) for complex regional pain syndrome - A randomised placebo-controlled Phase III multicentre trial: low-dose intravenous immunoglobulin treatment for long-standing complex regional pain syndrome (LIPS trial) - NCBI Bookshelf)

I think central pain is more closely what I may have and is the crps family of cns types of symptoms . I made friends with a few people who have CRPS on the nurotalk forum over the years and their symptoms and pain were extreme vs mine.

I was able to read the book in two days and also go through the 28 day program in another 2 days. I’m not saying it would be expected to expect results in that long but the concepts are very easy to understand and spending 28 days to go through them for me wasn’t required to fully comprehend . Putting them in to practice is the harder part. What I didn’t really get out of the book or the program is how to address the past. I don’t really know what parts of my life would be causing this pain other than the fear itself of relapsing.

I saw another book called unlearn your pain that dives into the past. The thing I’m getting hung up on is that I didn’t have a past experience that I was depressing when I got my symptoms it was more about the stress of being in pain!

I think it’s wonderful you wrote a book to help other people in need. I said to myself if I can figure I how to get through this flare I would write a book or donate my time to helping people.

 

So you made your way to Budapest Criteria, good for you! Much like you, I did not find any specific trauma in my past that would flip the switch. In my case, it was accumulation of things over the years, but I was able to de-construct my personality, my behavioral patterns and figure out what got me into CRPS and how to get myself out of it.

If you are looking for more books to read, here is mine, it is solely dedicated to recovery from CRPS through the lens of my own experience

https://www.amazon.com/dp/B0834Q46SM.

Since you already have a correct diagnosis, you can skip to Chapter 4 where all the meat is.

 

@bent98: Don't know if you are still having burning pain where it's hard to even wear a shirt, but this recovery story might help, at least be hopeful. A guy from Britain who worked with Jim Prussack and is recovering well, and apparently was also at a stage where it was unbearable to wear a shirt or have anything touch his upper body. Good luck.

 

I've had burning pains in my right side for around 4 or 5 years. Sometimes it appears above my right hip. Sometimes it is around my gallbladder/liver area and sometimes its at the back in my kidney area. When it apears at the back it feels like a numbness as well as some burning. It has been a cause of major conern for a long time. I assumed it was related to a heartburn issue. Iwas on PPi's for 15 years before I found out the dangers of long term use. I weaned off. I still get mild heartburn but the burning pains are far worse. I notice when I experience a moment of stress, I can immediately notice the pain worsening. This helps in a way becuase this makes me more confident in a TMS diagnosis.
I have read Unlearn your pain by Dr Schubiner, and have just recently started the meditations and exercises for week one. I took my time reading the book over the course of about 3 weeks, and then went back to the chapter entitled week one to start the exercises.
I have noticed some positives, but also some negatives. The negatives are new symptoms. I get nervous shaking in my arms. Not noticable to others, but noticable to me. That passed. I have chest tension and phlegm in my throat at the moment and that is a new one on me. Feels like an allergy. I still have the burning but I think it is easing.
When it gets severe, I take a moment, and I imagine in my mind and concentrate on blood flow and oxygen, rushing to the area that is in pain. The theory being that the area of pain is oxygen and blood deprived. When I do this, I often feel a pleasant tingling sensation in the area of the pain. If I do this for long enough, the pain reduces to a minimal state. I haven't been able to reduce 100% yet but for a guy who has only found out about TMS a month ago, I think that is good going.
Another thing I found strange about my pain, which conventional doctors described as something mechanical or structural, and which the naturopath described as probably stress induced gastritis**, was that, when I lie down, and turn on my right side, which is the area that typically gets the burning pain, is that usually after a while in that position the pain eases. I have NEVER been woken up from sleep with burning pain. This is another thing that gives me confidence that I am suffering from TMS.
I am well aware of at least two events that took place in my teenage years, more than 30 years ago, that are likely hugely relevant to my symptoms, and I have written about both.
I am still in pain, but I am hopeful that I am on the right path.

 

**stress induced gastritis might not be too far away from the TMS diagnosis!

 

@Madder:

"When it gets severe, I take a moment, and I imagine in my mind and concentrate on blood flow and oxygen, rushing to the area that is in pain. The theory being that the area of pain is oxygen and blood deprived. When I do this, I often feel a pleasant tingling sensation in the area of the pain. If I do this for long enough, the pain reduces to a minimal state. I haven't been able to reduce 100% yet but for a guy who has only found out about TMS a month ago, I think that is good going."

Nice!! Congratulations. This is one of the great things of this forum, people reporting on things that helped them.

 

I know right!! I mean a month isn't long. I'd like to think that in another couple of months I'll be back in control, at least for the most part. Sometimes it is harder to control it, but usually, I can reduce the pain significantly with a little time. This, in turn, gives you confidence in what you're doing. It makes you believe it more and feel like you're getting somewhere.

 

Wow- these really all do seem like classic TMS symptoms you’re dealing with. It can be a real, deep and long journey of self discovery to overcome this. How are you doing?