4 years of hell - help please

Hi All,

Such a long story, but I'll try to be brief. Four years ago, I was a very active single guy at 44 when I was struck by a mysterious "illness" after never be sick my entire adult life.

Started having pain behind my right shoulder - nerve type. Within a month of that, I started having night sweats, dizziness, etc. Then the pain spread to my neck and accompanied numbness and Carpel/Cubital tunnel like pain in my arms. Crazy fatigue for the better part of two months where I could barely make it to the couch. Then, the same type of pain spread to my legs with strange prickly, numbness, stiffness, etc. Then muscle twitching started body wide. Pretty much neck to my toes within 3-4 months.

I've been medicalized to death with no real concrete answers. One Doctor speculated it could be ALS early on as he saw the fasciculations and thought he noticed atrophy in my triceps. This sent me into a complete meltdown, even after the Mayo Clinic had taken it off the table a few weeks after. I didn't sleep for weeks prior to my Mayo visit to determine if I had ALS. They thought it was Small Fiber Neuropathy but then they walked that back 2 years later. So what I'm left with 4 years later:

Medical Diagnosis (Mayo, Stanford and others)
1. Central Sensitation (Mayo)
2. Raynauds Syndrome
3. Fibromyalgia (Stanford)
4. Tension Myalgia (Mayo)
5. Lyme disease (Lyme Literate doctor(s) - Mayo says I don't have it)
6. Benign Fascicualtion Syndrome (Mayo)
7. Degenerative Disc Disease

Ongoing Symptoms
1. Horrible Neck pain/tension
2. Horrible Neuropathy type leg pain and stiffness which makes it difficult to walk (Neuropathy was taken off the table by Mayo - I've had 3 EMG/s and Nerve conduction studies.
3. When I walk, my right leg seems to hesitate during my gait, like it gets stuck. Feels like I'm going to trip. This gets better the longer I go.
4. Muscle Twitching - body wide
5. Tinittus
6. Countless other strange sensations and symptoms - probably approaching 20.

I know this doesn't sound like the typical TMS case, but wanted to get your thoughts on if this could be TMS?

Just can't believe my life has come to this. I've read about TMS over the past year and have tried to get back to living my life, but I haven't felt like myself for 1 minute the last 4 years. My symptoms are constant although the severity changes.

Thanks for your thoughts.

 

Your whole post screams TMS and is extremely typical lol! That's good news though! Every single thing you enumerated falls under the umbrella of TMS or neural pathway pain (learned pain).. Check out my success story. I had a plethora of symptoms and labels thrown at me (CRPS, Rhematoid Arthritis, Lyme disease etc etc). Every single diagnosis you listed is NONSENSE. The medical mill slaps these labels on patients and end up causing so much needless suffering and fear. All you have is anxiety. Once you address the underlying emotions driving the anxiety (that is seen in these outputs of the body...these somatic pathways), the tms strategy ceases to exist. It's common and reversible.

 

Also, stop going to doctors and practitioners! Whether they are mainstream medicine or in the alternative world. They will all keep you squarely stuck in the pain strategy, not to mention broke. Realize that there is nothing actually wrong with you physically.

 

Thank you Miffy. Yes, I have ceased going to anymore doctors and practitioners. I appreciate your thoughts as it helps build the confidence that TMS is what I've been dealing with all these years. A damn shame people have to to go to these lengths to find out what they're dealing with.

 

I could easily dismantle all 7 of the labels above but I think you already know it yourself. They are all misleading, laughable and ultimately meaningless. Not one of them has any proven correlation to symptoms. They are worthless and never helped anyone get better that's for sure!

 

I agree. And even my neurologist at Mayo was open to Sarnos work and hinted that there could be a mind/body connection. When one of the diagnosis were "Tension Myalgia" - I was like, hmmm....that sounds a lot like TMS and I even noticed Sarno mentioned it in his book. Lyme as well.
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Can you give me your best succinct advice Miffy? Thank you.

 

Everyone's journey is unique to them but the same principles apply to everyone. As succinctly as I can be lol, they are : Knowledge (understanding of the brain and learned pain), Accepting the TMS diagnosis (stop looking for physical /medical causes), Awareness of chronic negative thought patterns and behaviors that are keeping these neuro pathways going, Changing those patterns and replacing them with new ones (shifting focus, losing fear etc.), Addressing and feeling the underlying emotions that are causing anxiety to be expressed through the body, Mindset (maintaining an attitude of indifference to symptoms...recognizing they are harmless and meaningless), and lastly making Practical Life Changes that may be required in order to live life on your own terms (this is individual and encompasses a host of possibilities....becoming more assertive, changing jobs, breaking up with a partner, becoming more social, following a passion, moving, delegating responsibilities to others, learning how to say no....the list is endless and all depends on one's life and what makes one happy, fulfilled and connected with others.)

 

If it helps to have two opinions, I 100% agree with @miffybunny . Pain that started locally and then spread out, neuropathy-like pain, various odd sensations moving around - all this sounds like TMS. No finding on MRI only confirms it.

I am fascinated by how your pain started with a single location, but then it spread. My case was somewhat similar, and, as I was searching for a diagnosis and not finding answers, I became more anxious about my diagnosis and that aggravated my condition even more. Only when I realized that anxiety was the cause of my pain and that meditation, along with proper management of my emotions was a solution, I began to heal. I hope you will be able to chart your own path to healing. It is possible, as many of us where able to do just that. Good luck!

 

Really appreciate your thoughts. Yes, mine was like a moderate progression throughout my body and as a good diagnosis became more elusive my anxiety (which I never really had before) shot through the roof - especially when a recommended internal medicine doctor shared his fears about me having ALS. That really shot everything to a whole other level. I freaked out. I came home from that appointment and curled up in the fetal position for 6 hours just sobbing like a baby all by myself. I was terrified. I think my FFF response went into overdrive at that moment and that I've never fully recovered from it. I think I'm pointed in the right direction now however - after all these years. Thanks for your thoughts

 

Hopefully this is helpful and reassuring but like @TG957, I had a ton of "spreading".. What started in my big toe and I thought was a minor sprain, spread like wildfire to the whole foot and then a mirror image to the other foot ( a month later). Then the knees and at one point full body. This was simply a barometer of my fear level. I was literally in a state of terror 24/7. I couldn't even handle the sensation of a sheet on my body because my nerve pain was so hyper intense. That is how powerful the brain is, that even a bedsheet seemed dangerous lol! Your only job right now is to caaallllmmmm down. See the tms for what it is....harmless. Pull the curtain back on your thoughts. It's just you creating the symptoms with your own thoughts and fear.

 

I admit, I was in a state of extreme fear for almost 3 years. The last year I've calmed down as I finally became convinced I didn't have a terminal illness. And I've got part of my life back - which is great and I'm deeply appreciative. It's just so strange. After reading your post today I went for a 7 mile run (I know this sounds strange) - haven't gone that far in years and it went GREAT! As soon as I got done my index finger started twitching out of control! I mean - it had a life all of its own. So damn strange. I pretty much shrug it off now, but I'd be lying if I didn't think it was strange. I just don't get how I can run that far and then walking from my car to my house seems difficult. Makes no sense at all - like TMS I guess.

 

THis is it, fear can do it to you. Same thing happened to me and it nearly completely disabled me.

Congratulations on your first run! Prepare to have bizzare symptoms to appear and reappear every once in a while, but as long as you understand that your brain needs time to heal from the scare, you will be fine.

 

Thanks you. Lots of pain today post run. Tight tendons, muscle twitching, etc. I think its due to blood flow changes to my appendage when I exercise. When I'm at rest, TMS is limiting the blood supply to my appendages (Raynauds diagnosis basically confirms it). When I run they get filled with blood/oxygen and I start feeling better.

 

Focus less on physical explanations and more on calming down your nervous system. I had Raynaud's diagnosis. It is all gone, it was nothing but TMS. You have all the symptoms after the run because your unconscious is still scared to death. Try to give it more evidence that you are OK, by virtue of running, exercising and meditating. You convinced yourself that you were sick, now you have to reverse it and convince yourself that you are healthy. Takes time and effort. That's what I did. I am getting tired and almost embarrassed of bragging on this forum but I went from being incapacitated to climbing Mt. Whitney three years later, at age of 62.

 

Please don't be embarrassed - it gives those of us struggling a lot of hope. So glad you got to do something like Mt. Whitney - thats just fantastic. I was such an active guy - it really defined my life to be honest. I think my brain knows that being less active is the worst thing that could happen to me. I've pushed a lot more this past year as my confidence continues to grow than I'm OK. Great to hear about your Raynauds going away. I do need to add meditating as well. Thanks for all your help - I really appreciate it. Oh - I'm going to New Orleans in 2 weeks to fly fish for Redfish. Id be lying if I said I wasn't worried about a strong flare - I just keep telling myself I'm fine.