Neuropathy like symptoms - in need of support

[Layla1926]

English is not my main language, so sorry if I make mistakes.

Lately I am trying to accept that I am dealing with learned pain. I am just struggeling with really really believing and feeling it. I hope some of you can help me with that.

In 2021 I developed vulvar pain after bathing in baking soda (preventive for fungal infactions that became more frequent). Once I stepped out of the bath I developed an intense burning pain. Eventually I thought that I caused nerve damage using the baking soda. I have tried everything and anything to 'cure' the pain. I became really depressed and very emotional. I've lost the feeling of a sexy confident woman and I struggeld with my image. I really went the structural route. Even when the symptoms would fluctuate or when I was laying down and the pain would completely disappear. Even when I was dealing with a very emotional and at times toxic relationship. I really thought that something was wrong with me. And my last resort was taking medication. After 1,5 year I was exhausted and just hoped the pills would decrease my pain. The pain specialist gave me Oxycodon, and later on also Lyrica and Nortriptelyne.

In the summer of 2022 I was taking the pills but there was also a shift in my believes and mindset. What if there was no damage, but I sensitized the area with my constant focusing on it (due to the fungal infections). But also due to the chronic stress I was experiencing because of all the isues in my relationship? I finally started to letting go and believe that my body is whole. I started to workout and actually enjoy life again. But when I'd let go off the vulvar pain, I woke up in the middle of the night with extreme burning pain all over my body... The worst pain I have ever felt. I could not breath. The pain specialist told me that it was possibly a side effect of the medicine. So here I was again... Back to square one. Again thinking that I damaged my body with medicine. I did eventually a gen test. To determine if my liver can't proces the medicine. The results showed that I have a slight shortage of an enzyme necessary to proces Nortriptelyne. But the pain specialist told me that it is a slight shortage! That usually generates mild side effects. She thinks the medicine triggered something that was already there on a deeper level.

Over the last year, the burning pain has faded. But I still feel the crawling sensation, the muscle twitching and the most debilitating one: a hypersensitivity on my skin. Gentle touch does not hurt, but clothing does. Or when I am having an itch, itching the skin is also very uncomfortable. Sometimes the symptoms flare, sometimes they are less. But they are never gone... Do you know the feeling when you have been sweeming in a warm pool for a long time and afterwards you have to dress and the clothing is feeling very uncomfortable? That's how it feels all the time.

The only place on my body where there were no issues of pain, where my hands and feet. But since this april I started to also feel pins and needles in the hands and feet and a sensitivity/painfull sensation.

Long story short, I am struggeling sometimes to believe that there is no damage or that it maybe all healed but the pain persisted. Most of the times I hear about how the pain fluctuates and people also have painless short times. I have constant pain...
I am struggeling to do the work. I am understanding everything, but it is one thing to understand and another one to actually implement everything. I think I am just tired...

Is there someone who can give advise or maybe some hope, people with the same symptoms?

 

[Cactusflower]

There are many, many posts of people here who name symptoms neuropathy. However ALL tms symptoms are equal because they are created in the brain.
You have been doing very well, questioning the cause of your symptoms and relating them to stress.
It can take awhile for things to settle down. Have you read any books by Dr. John Sarno? Highly suggest The Divided Mind.
This website also offers two free programs on the front page at tmswiki.org ; scroll down to find the SEP which is longer, and exposes you to many techniques to help your mind and nervous system. The Pain Program is a precursor to Alan Gordon’s Pain Reprocessing and is mainly fear reduction based. Choose just one and complete it.. then choose the elements that worked best for you and continue. As you now realize, symptoms can wax and wane at least for awhile: you’ll learn a great set of skills to deal with them. Right now your symptoms sound very much like a highly sensitized nervous system: always on alert -stuck in fight flight.
You’ll need to learn the things that calm you: meditation, or calm breathing, long baths, or venturing into nature regularly.. whatever works to give you messages of peace and safety.

 

[Layla1926]

Thank you for the reply @Cactusflower! That's the whole thing. I am trying to believe that my brain creates all those lovely sensations. But sometimes I get scared and think no the medicine caused nerve damage. But is it really possible that all the sensory nerves over my whole body gets damaged all at once?
Thank you for the tips. I will try to calm the mind and the brain!

 

[JanAtheCPA]

But is it really possible that all the sensory nerves over my whole body gets damaged all at once?

That's the right question, @Layla1926, so just keep reminding yourself of the correct answer. Which to me goes a lot further, as I would seriously question how this medication could even cause what you are describing as "damage" but which sounds more like temporary inflammation at the most - combined with your anxiety-provoked hypersensitive nervous system.

So I'm going to suggest, very strongly, that you banish the word "damage" from further use or consideration in this context, because it's basically an attempt by your primitive TMS brain to catastrophize and make this whole incident far more serious than it actually ever was (and I'm basing that on the lack of concern from the professionals). You may use "inflammation" instead, and be sure to also look up the connection between stress and inflammation.

Then make a commitment to do the work to address the sources of your emotional stress and distress!

 

[Layla1926]

That's the right question, @Layla1926, so just keep reminding yourself of the correct answer. Which to me goes a lot further, as I would seriously question how this medication could even cause what you are describing as "damage" but which sounds more like temporary inflammation at the most - combined with your anxiety-provoked hypersensitive nervous system.

So I'm going to suggest, very strongly, that you banish the word "damage" from further use or consideration in this context, because it's basically an attempt by your primitive TMS brain to catastrophize and make this whole incident far more serious than it actually ever was (and I'm basing that on the lack of concern from the professionals). You may use "inflammation" instead, and be sure to also look up the connection between stress and inflammation.

Then make a commitment to do the work to address the sources of your emotional stress and distress!

Hi @JanAtheCPA. I have not seen your massage and I wanted to say thank you for replying. I went off the forum, trying to 'let go' and not searching anything or reading about symptoms. I am slowly trying to break through the negative narrative in my head. The sensations are still present. I find it difficult to stay motivated when I'm not seeing immidiate results. And I know that that keeps me stuck. But I just dont know how I can get to a point where the sensations don't bother me anymore. So the outcome doesn't bother me.

 

[mbo]

It is almost impossible to distinguish between neuropathic and neuroplastic pain. Neuropathic pain is due to some kind of nerve damage... but neuroplastic pain is not related to any kind of injury or illness: it is just TMS pain! Good news !!!!
Sadly too much neuroplastic pain is considered neuropathic by uninformed docs (the vast majority). The result: weoird diagnosis, wrong treatment, pain perpetuation and, who knows, iatrogenesis.
Beware, keep calm ...and good luck.
M

 

[Layla1926]

It is almost impossible to distinguish between neuropathic and neuroplastic pain. Neuropathic pain is due to some kind of nerve damage... but neuroplastic pain is not related to any kind of injury or illness: it is just TMS pain! Good news !!!!
Sadly too much neuroplastic pain is considered neuropathic by uninformed docs (the vast majority). The result: weoird diagnosis, wrong treatment, pain perpetuation and, who knows, iatrogenesis.
Beware, keep calm ...and good luck.
M

Thank you for your answer! I will try to be calm. I guess I have doubt sometimes about it beeing neuroplatisc or not... But i'm trying to let that go. I saw a lot of posts with nerve damage diagnoses, and they still healed!

 

[TG957]

I had neuropathy which healed just fine. Your story reads as TMS in every word. When your pain jumped to your entire body it was a well-known "extinction burst " effect described by Sarno 40 years ago. By getting scared by it instead of welcoming it as a proof of a psychosomatic nature of your symptoms, you exacerbated the problem. You need to go through Alan Gordon's program, read couple of books by Sarno, Schubiner, Gordon and stop shopping for meds. Focus on your emotional problems that causef your pain. Good luck!

 

[Layla1926]

I had neuropathy which healed just fine. Your story reads as TMS in every word. When your pain jumped to your entire body it was a well-known "extinction burst " effect described by Sarno 40 years ago. By getting scared by it instead of welcoming it as a proof of a psychosomatic nature of your symptoms, you exacerbated the problem. You need to go through Alan Gordon's program, read couple of books by Sarno, Schubiner, Gordon and stop shopping for meds. Focus on your emotional problems that causef your pain. Good luck!

Thank you for the reply! I feel like I focused on the emotional problems. Im also trying not to be scared of the pain. But I dont know. It's always there. It's consistent. Doesn't that mean that it's more structural?

 

[TG957]

Thank you for the reply! I feel like I focused on the emotional problems. Im also trying not to be scared of the pain. But I dont know. It's always there. It's consistent. Doesn't that mean that it's more structural?

Your pain in the entire body being structural would mean that your entire body got broken instantly - did you get hit by a truck or bus? I don't think so. Subconscious mind works in mysterious ways, and it might take you months to heal and you have to find the right switch to do so. Alternatively, you already spent 2 years on the medication circuit and it didn't get you anywhere. You either accept TMS concept, or continue going down the rabbit hole of doubt. Those who doubt never heal because they don't see that switch.

 

[JanAtheCPA]

But I dont know. It's always there. It's consistent. Doesn't that mean that it's more structural?

I get that you have noticed that inconsistent symptoms are often associated with and deemed to be proof of TMS. However, this is not at all 100% true for all cases. Many people have experienced and reported constant symptoms that in fact turn out to be TMS: brain produced, stress-based and anxiety-related.

The actual truth of the TMS mechanism is that your brain will produce the symptoms that are most guaranteed to keep you in fear. If you're looking for inconsistent symptoms as proof of tms, your brain will definitely produce constant symptoms. That is its job!

 

[Layla1926]

Your pain in the entire body being structural would mean that your entire body got broken instantly - did you get hit by a truck or bus? I don't think so. Subconscious mind works in mysterious ways, and it might take you months to heal and you have to find the right switch to do so. Alternatively, you already spent 2 years on the medication circuit and it didn't get you anywhere. You either accept TMS concept, or continue going down the rabbit hole of doubt. Those who doubt never heal because they don't see that switch.

You are totally right. I know that beeing scared and continue on the medical route will bring me nothing. I'm just wondering how one stays motivated and on the right path when healing doenst come in a week or two.

 

[Layla1926]

I get that you have noticed that inconsistent symptoms are often associated with and deemed to be proof of TMS. However, this is not at all 100% true for all cases. Many people have experienced and reported constant symptoms that in fact turn out to be TMS: brain produced, stress-based and anxiety-related.

The actual truth of the TMS mechanism is that your brain will produce the symptoms that are most guaranteed to keep you in fear. If you're looking for inconsistent symptoms as proof of tms, your brain will definitely produce constant symptoms. That is its job!

And the funny thing is that neuropathy like symptoms and especially allodynia is something I'm scared of most. But thank you for stating that consistent symptoms also can be TMS. I'm going to be hopefull, trying to resume to my life etc.

 

[mbo]

Neuroplastic pain (inofensive, not related to illness or pathology) is ofen confuden with neropathic pain (serious issue, due to body/structural damage). Doctors are trained to detect and treat neuropathic pain but.... ignore completely the existence of neuroplastic pain aka TMS pain.
M.

 

[JanAtheCPA]

I'm just wondering how one stays motivated and on the right path when healing doenst come in a week or two.

A week or two?????! My dear, that is very unrealistic! You are dealing with a lifetime of anxiety, and who knows what kind of family background, because you haven't said in this thread, and two full years of serious suffering, anxiety, catastrophizing, and obsession with physical conditions. Two weeks is not going to do anything for you because you have not even achieved any significant changes in your mindset. You are still wrapped up in fear and catastrophizing and now unrealistic expectations.

I think this may be a factor of being very young, as young people want everything immediately, especially in this era of instant gratification.

You have not said if you are actually doing what we call "the work". In all of the things that @Cactusflower suggested, what are you actually doing,? Are you doing a program? Have you considered therapy? Our Structured Educational Program, as recommended, takes 6 weeks to complete, and the lessons must be applied for the rest of your life.

This all takes TIME. How much time? For some people it can take a very long time to reach full recovery, but with true belief and honest commitment to doing the work, recovery and improvement will start to take place gradually.

Watching the calendar will only get in the way.

Holding on to expectations is a guarantee of disappointment.

In other words, to do this work you must completely change your mindset, stop thinking physically, and always think psychologically.

 

[Layla1926]

A week or two?????! My dear, that is very unrealistic! You are dealing with a lifetime of anxiety, and who knows what kind of family background, because you haven't said in this thread, and two full years of serious suffering, anxiety, catastrophizing, and obsession with physical conditions. Two weeks is not going to do anything for you because you have not even achieved any significant changes in your mindset. You are still wrapped up in fear and catastrophizing and now unrealistic expectations.

I think this may be a factor of being very young, as young people want everything immediately, especially in this era of instant gratification.

You have not said if you are actually doing what we call "the work". In all of the things that @Cactusflower suggested, what are you actually doing,? Are you doing a program? Have you considered therapy? Our Structured Educational Program, as recommended, takes 6 weeks to complete, and the lessons must be applied for the rest of your life.

This all takes TIME. How much time? For some people it can take a very long time to reach full recovery, but with true belief and honest commitment to doing the work, recovery and improvement will start to take place gradually.

Watching the calendar will only get in the way.

Holding on to expectations is a guarantee of disappointment.

In other words, to do this work you must completely change your mindset, stop thinking physically, and always think psychologically.

Thank you for all the advise that you are offering!
I think you misunderstood me. I know that the symptoms probably won't resolve in two weeks. I'm just looking for advise how one stays motivated, when you don't feel immediate relieve.

Regarding 'the work' that I'm doing; I've started counceling with a TMS coach one on one and am going to groupmeetings for emotional support. Also I started a re-origin program that is focused on breaking trough negative thoughtloops and in the end rewiring the brain. I feel like I have worked trough the emotions regarding my relationship, but also regarding my father leaving me when I was still a child. Anxiety is def a thing. I have always tried to be the perfect daughter, the perfect student, perfect girlfriend, perfect employee, perfect healt etc. Just reading is, sounds tiresome. So right now I am trying to live life for me and no one else. So I'm working on the emotional aspect. I just think that for me there is a big fear regaring the symptoms and I think that the fear keeps it going. Im trying to do somatic tracking, calming myself down etc. But my downfall is that I will do this 1,5 week and then get discouraged, and feel like I have to start over...

 

[TG957]

Thank you for all the advise that you are offering!
I think you misunderstood me. I know that the symptoms probably won't resolve in two weeks. I'm just looking for advise how one stays motivated, when you don't feel immediate relieve.

Regarding 'the work' that I'm doing; I've started counceling with a TMS coach one on one and am going to groupmeetings for emotional support. Also I started a re-origin program that is focused on breaking trough negative thoughtloops and in the end rewiring the brain. I feel like I have worked trough the emotions regarding my relationship, but also regarding my father leaving me when I was still a child. Anxiety is def a thing. I have always tried to be the perfect daughter, the perfect student, perfect girlfriend, perfect employee, perfect healt etc. Just reading is, sounds tiresome. So right now I am trying to live life for me and no one else. So I'm working on the emotional aspect. I just think that for me there is a big fear regaring the symptoms and I think that the fear keeps it going. Im trying to do somatic tracking, calming myself down etc. But my downfall is that I will do this 1,5 week and then get discouraged, and feel like I have to start over...

You have to start measuring your timeline in months, not weeks. I didn't see any significant results for the first 3-4 months. It took me 2 years of persistent effort to be symptom-free.

 

[Cactusflower]

@Layla1926
I often think I have not made much progress. Recently it seems like back tracking. At times I get some pretty severe symptoms and can freak out.
But I try to remember, this is practice. Every symptom event, and every heavy emotion day is practice. Practice rewiring my brain, practice either not OR spending less time in a mood or a freak out. Learning patience and kindness to myself.
Lightly remind yourself why you frequently react with way? Did you learn that you were loved by your results and accomplishments? Those kinds of ideas keep us striving which is a TMS personality characteristic. Taking time really feel that this is hard, without getting caught up in a victim mode is a challenge, but it’s part of the TMS learning.
You have a lot of support. Keep reminding yourself you are not alone in this. That others, including your tms coach has probably struggled through this. They did it. You will, it is just time. When you feel that defeated self pressure, start employing techniques to lower your internal stress: you’ll learn them with your coach and you choose what works for you. You can ask your coach about: meditation, somatic tracking, EFT, breath work, adult coloring, getting into nature, grounding exercises. Whatever helps you separate from your obsessive thoughts and anxiety. As much as you need to work on emotions, you also need to just “be”.

 

[Layla1926]

Hi everyone,

just wanted to give an update and maybe you can offer some advise...
A couple of months further, my sensations are calmer. It was a 9/10, now a 4/5. Though I am still struggling. I’m trying to reach the level of indifference. But boy oh boy, it is hard. I’m trying to just be and accept the situation I’m in atm, knowing that it will not be like this forever. But I have constantly thoughts popping up from the past. How my life was so wonderful pre symptoms or regretting the choices that I made (I know, a pointless thing to do. But my brain is throwing all the bad choices at me). And then all my friends around me are building their life, buying houses, birthing children and then there is me: I still feel stuck. Indifference for me is also just living my life and not feeling limited. But in all honesty, I still do feel limited. It costs me a lot of energy to go out and do stuff and ‘live my life’. I feel like all the answers are in front of me, but I just can’t reach the authentic inner peace.
Besides the neuropathy like symptoms I’m also dealing with vulvar pain (this one for a longer period). the vulvar pain is also less, but still present. The vulvar pain is not bothering me, but yet it's still there... So then doubt comes round the corner, with al the what if’s. I know that I am my own enemy in this. But I just don’t know how to make the next step emotionally or subconsciously. Theoretically I’m fully understanding. If that makes sense..

@Cactusflower @TG957 @JanAtheCPA

 

[ARCUser831]

Hi Layla - my TMS symptoms also began with vulvar pain. I had self-diagnose myself with vulvodynia at one point, and at another was terrified I was slowly developing PGAD. I was convinced for months and months that my symptoms were the result of structural or neural damage. I did pelvic therapy (internal and external), stretching, went to the doctor multiple times and tried multiple topical medications. I was then convinced I had recurring UTIs that were just presenting themselves in a weird way. I stopped wearing tight clothes, sitting in certain positions, etc. As time progressed, some of my symptoms also become more neural in nature -- I was experiencing sciatica, tingling, fasciculations all over my body (but particularly in the vulva which is an incredibly uncomfortable feeling). I don't have skin sensitivity but I had a very bad case of hyperacusis (sensitivity to sound) that I've since been able to overcome. I think they're similar in that they both speak to hypersensitivity to physical stimuli.

All of this to say, our stories share some similarities. I have been on my journey through this for almost exactly a year now. I'm not 100% better yet and in fact I still have some awful days. But I also have longer periods between the symptoms, and I prove more to myself each day the symptoms are there, that I can still have a good day.

The hardest part for me was truly believing that the symptoms were not physical in nature, and once I was able to grasp that belief more fully, the next challenge was shifting my attention away from the pain. Acknowledging it, yes, but not letting it dominate my thoughts and dictate my mood.

I always read people and books on this say that your dread/anxiety/fear of the pain will almost always disappear before the pain itself disappears, and I never understood how that would be possible for me. But I can see it happening, slowly but surely. I'm getting my life back and my symptoms have less power over my every day.

Keep doing the work. For me, I kept my head down and took each day at a time, trying to do what I could (but not trying too hard that the recovery becomes all you think about), and I surprised myself one day as I started to recognize myself again. I was returning to my life. You will get there.

I recommend Dr. Gordon Pain Recovery Program, but also Steve Ozanich's The Great Pain Deception book...that book was the most influential for me because his symptoms are all across the board - he even experience temporary paralysis that he recovered from through this work. His story is inspirational and a great reminder that TMS is not just about back pain. It can present in so many ways.