Body slowly deteriorating, losing hope.

Hey everyone. I posted asking for help regarding erythromelalgia previously, but I'm truly reaching the end of my rope now. My symptoms have worsened and spread all over my entire body. I've developed full body livedo reticularis (skin mottling) and redness. The erythromelalgia symptoms in hands/feet have worsened as well, my hands are almost always red hot and flaring, veins bulging, allodynia. At night my legs turn red up to my thighs and my feet burn with a sparkly electric neuropathy at a 6 on the pain scale. I've developed pressure urticardia, where pressure will leave indentations and redness, e.g. palms turn bright red gripping steering wheel after only a few minutes.

I've seen countless specialists, run countless tests, all normal results (by this i mean tests ruling out underlying autoimmune, cancer, other serious diseases known to cause EM). The closest we've got to an answer is erythromelalgia possibly secondary to idiopathic small fiber neuropathy, but no conclusive diagnosis yet (and I am always the one to ask if it could be EM, no doctor has implanted a nocebo in mind). Since I have suffered from TMS neck, foot, hip, knee pain in the past, I have always been open to treating this as TMS, and a very severe manifestation at that. I don't understand why it was so easy for me to heal the musculoskeletal TMS symptoms, yet these neurological/vascular/skin symptoms just keep getting worse and worse everyday. Something doesn't feel right about this, these symptoms feel like a process operating in my body independent of any emotions or mindset. I am afraid its possible no amount of normal test results will convince me that "there is nothing wrong with my body." For 2 reasons - 1) these symptoms came on with minoxidil usage and I deeply suspect this could be a super rare permanent adverse reaction (which would evade tests), not helped by the fact that I've found a few other similar accounts online; and 2) even if it wasn't the minoxidil, it could just be idiopathic - I know a dirty word in the TMS/mindbody universe, but if I am to approach this logically, I must admit that there are real (i.e. not psychosomatic) diseases that science/medicine has no explanation for. To declare that idiopathic simply equals psychosomatic is an extreme position, the counterpart of traditional medicine's insistance that there is a structural cause for all illness and the mind/emotions plays no role. I can't help but to take a balanced view.

The closest examples I've seen to these symptoms are from @Dorado and @miffybunny. @Dorado I have actually printed out some of your posts to keep at my desk and review when I'm struggling. It would mean a lot to hear from you about this. I wish I could follow your advice to go out and live life normally, but at this point if I step outside my door on even a mildly warm day my hands almost instantly swell up and burn red hot, every time without fail, with my feet following close behind. It is impossible to even pretend to live life normally at this point, and I'm afraid I may need to leave my job at this rate. I've uploaded some pics of what I'm dealing with, I would love to hear any opinions on whether TMS is even capable of doing this.

I occasionally catch a glimpse of my future self, enjoying a hot summer day at the beach, asymptomatic, looking back on this current period with the wisdom of someone who has undergone a complete awakening, and who not only was able to vanquish these symptoms but was able to grow spiritually as a human being and finally truly live and enjoy life to its fullest potential. I want to get there folks, I just don't know how anymore, sadly i'm desperate. Thank you for reading this.

 

If you've been to a vascular specialist and an allergist and gotten the all clear that's when you can start setting it aside and stop worrying and thinking about it. The way I look at it, if it can't kill ya, then there is no harm in stopping thinking about it for awhile.

What if you were to say -- Fuck it, who cares? So I get red, weird, hot blotchy skin. Big whoop.

And instead

focus on your emotions.

It's clear that you've spent a lot of time thinking, researching, worrying, studying, reading, seeking out others with the same condition, commiserating about this. What if you stopped that for awhile? Would you be open to going 3 or 4 weeks without giving it any of your thought or care?

Have you also been writing about your feelings and emotions? Really sat down on a daily basis for a good 10 - 20 minutes and wrote. About any hidden anger. About any people in your life in the past or present who did mean things to you or made you feel bad?

Spend your time on that and not on the daily quest to solve your symptoms and you might just seem them fade away on their own.

Good luck! I think you will enjoy the break if you try it.

 

You are not deteriorating!! I know it feels like you are (been there, done that) but it’s not true.

As much as it sounds like your symptoms are TMS, side effects from drugs can be real. Don’t continue to research them, but it’s possible that the medication aggravated your body, along with with any pain, anxiety or symptom-obsession you are experiencing. ESPECIALLY when your nervous system is in a state of high alert, substances that are helpful or neutral to others will be perceived as “invaders” to an overstimulated mind-body system.

Calm down, breathe and know that despite appearances (which don’t really matter, anyway) you are fine.

I had a couple of years of icky skin problems that were so distressing, I felt like I couldn’t go out in public. The more I stressed about it, the worse it got. I never had a satisfactory diagnosis but it went away on its own - to be replaced by other symptoms. When I eventually learned about PPD/TMS it all made sense.

 

What you have is (or is very close to) Complex Regional Pain Syndrome. I had it, with the symptoms similar to yours, which is neuropathy, swelling, allodynia, and other symptoms on top of it. My hands looked quite similar to yours and I was at the end of my rope. Like you, I had to wear gloves in a 70 degree weather because my hands could not handle even minor changes in temperature. All of it is gone now, although it took me almost two years to clear all the symptoms. It was all psychosomatic, as hard as it may be to believe that swelling and skin changes can be psychosomatic. I suggest that you look at the website that @miffybunny and I maintain specifically for the CRPS patients: defeatcrps.com where we address your concerns about symptoms that are not common in the TMS world. CRPS is a difficult case, but there is a growing number of people who recovered or got significantly better by using TMS techniques.

 

@Booble - the specialists haven't necessarily given me the all clear, they just say they don't know what's causing it. I was journaling at first but eventually just ran out of emotions/history to write about. I've left no stone unturned in regards to past trauma, relationships, family, anger, work, etc. I've thought about it all so much it doesn't really even bother me anymore, its just boring. I do like your suggestion of trying not to think about it for a few weeks. I've resolved to stop thinking about it several times over the past few months, but its hard to maintain that resolve in the face of steadily worsening symptoms and pain.

I definitely agree here - I was in a pretty bad mental state, which could explain why my reaction to this drug has been so unique and severe.

@TG957 thank you I will take a look at your site.

 

Spreading and worsening symptoms is one of the trademarks of CRPS.

 

It’s so very hard to be calm or upbeat when you’re going through this but you are BRAVE and will be fine no matter what. I’m glad you’ve found @TG957’s resources.

 

I read countless books, saw therapists but it was @TG957 ’s book that got me through the crazy anxiety! Her descriptions of what she went through and how she coped resonated with me. No drama, just reality. Slowly the fear and anxiety melted away. Oh, it rears it’s head for moments but I just think it’s nothing more than emotion snd though.. and they pass. And it passes!
I have had symptoms I have never heard anyone with TMS having - and all the worst are gone mostly. A favorite neuropathic symptom felt like someone sticking pins in the nerves of my feet. My whole leg would jump, foot would contort and turn colors.. why does nobody else have this symptom.. at first I worried, then I began to wonder and finally I could laugh at the absurdity. Then it stopped. A few even weirder symptoms started up. I laughed more!
My chronic pain is not gone, but so many symptoms are.. it just takes time and patience.

 

Thank you, @Cactusflower ! You are absolutely right: the weirder your symptoms are, the more likely they are TMS. Looking forward to seeing your report on full recovery!

 

>>the weirder your symptoms are, the more likely they are TMS. <<
This made me laugh because it is so true.

 

i also believe that the weirder the symptoms are, the more likely it is TMS. i’ve also gotten a lot of help from looking in the mirror and taking straight talk to myself about TMS. and then laughing at it and mocking it. those techniques, plus daily journaling and weekly analysis, have helped me along in my healing.

 

Great idea!

 

Well I believe these symptoms are sufficiently weird. @TG957 i've ordered your book.

 

I hope it is going to help you, feel free to ask questions!

 

My symptoms weren't exactly like yours, but I'll give my ten cents. In 2016 I was struck by a virus that left me with burning hands and feet, discoloration of the hands (more Bier's Spots than what you have), and sensitivity to certain types of heat (computer heat, blanket heat) and not to others (hot showers did nothing). This was after a long period of stress and TMS manifestations in the joints, though I didn't understand what was going on. Eventually I concluded it was anxiety but it still took 5 years for the symptoms to abate (during remote work for Covid) and another 1 1/2 years for it to really get to the point where it is now -- almost none-existent. It went from all-day aching, burning pain to something I almost never think about anymore. My TMS replaced it with other symptoms to provoke anxiety (floaters and most recently, tennitus, which is slowly going away now)--for me, no medication worked except tobacco. Once I managed to quit smoking, I was able to use deep breathing to lessen the symptoms, though it took a long time for that to work; around 2017 deep breathing did nothing, while in 2022 if I get a flare I can cease it almost completely within 20-30 deep breaths. In any case, this stuff can resolve, and it def. can be stress/anxiety related.

 

I happened to come across some of @miffybunny 's old posts, from when she was struggling, and really see myself in those posts - The uncertainty over whether TMS healing can help these symptoms, the confusion as to why it was so easy to heal musculoskeletal TMS but neurological/vascular symptoms don't respond at all, the lack of success stories for this condition. I also came across an old SteveO post where he said you must believe 100% its TMS before you can heal.... and this is my major problem, idk how to get over this hurdle.

 

Personally I think if anyone says at the outset of this that they are 100% certain their condition is TMS they are lying.
90% maybe, but 100%? How could you be? You can be 100% hopeful. 100% get it. 100% "seems like it."
Think about the 20/20 Sarno video. John Stossell didn't believe 100%, in fact I'd guess he believed less than 50%. But he understood the concept, thought the concept made sense, saw people whose pain went away, and tried it.

In your case, TG957 is the perfect example for you. All of the symptoms of the same thing you have went away. Without medical intervention.
So it was either TMS or time made it go away on its own. Either way. It went away. And so it's not something to worry about, not something to focus on, not something to fret over, not something to have to research. Live your life. Do your TMS work and know that at some point it's going to go away.
And the remarkable thing is that when we stop trying to "help" our body by "figuring it out"-- our body figures it out on its own.

 

You are dealing with the same problem that majority of us dealt with, In my book, I talk a lot about the doubt. Read chapter 4 and chapter 5 especially carefully. Doubt is the main obstacle on the path to recovery. You can continue talking yourself out of believing in yourself, but you can also spend the same energy on trying to believe in yourself. The most important here is to understand that the nature of symptoms depends on what is the weak sport in the body. It could be digestive system, or immune system, or nervous system. Where the breakdown is, does not matter, the root cause is always the same: your brain and your subconscious.

Here is the photo of my hands when CRPS was in full swing. Note swelling and color of the left hand. All the symptoms are gone now.

 

This is gold:

 

It took me a long time to figure out that the bodily systems that work involuntarily, don't like us micromanaging them.

And we have to get TWO parts of our brain to stop trying to run the show:

1) our complex thinking that goes into control freak mode (researching, hyper focusing, trying weird remedies, obssessing)
2) our lower level "primitive" thinking that likes to muck with things to keep you down.

The TMS work achieves stopping both of those things. That way the parts of your brain responsible for the involuntary systems (heart rate, breathing, organ functioning, etc) can do what it know how to do without all the interference.