Body slowly deteriorating, losing hope.

Hi! Just wanted to let you know that I’m reading through this thread and will share my thoughts with you soon. In the meantime, hang on - those glimpses of your old life are NOT gone!

 

It’s not whiny. I’m notorious for giving that advice - because it resonated with my personality and desire to go back to my old life. But it’s not going to resonate with everyone and that’s OK! Don’t ever feel guilty for needing to take a different approach than someone else. Mind-body healing isn’t a one-size-fits-all fix!

Your body isn’t disfigured. Nothing you’ve described falls outside of the realm of what people on this forum have healed from. It’s normal to have doubts. Mind-body healing can take time to fully accept! The good news is that it’s not too late - even if this continues to take time to embrace. Don’t let success stories that reference acceptance (including mine) make you feel like you’re a failure.

Most importantly, suicidal thoughts don’t mean you truly want your life to end. You simply want your pain and suffering to go away - and I promise that is possible.

I’m healing from real injuries (multiple ligament tears confirmed by an MRI plus nasty nerve entrapment from my brace). The last few months have been spent relearning how to stand and walk… and stay off forums with horror stories about permanent nerve entrapment. Given that activity is my antidepressant, I totally spiraled and had many negative thoughts. It reminded me of my severe TMS days. And this time I couldn’t just “go out and fully live life again.” But the truth is that I just want my emotional pain to end. And it WILL. Sometimes it’s easy to lose sight of the true source of our thoughts. Not being able to live our lives the way we desire can make us feel caged up and fed up. But there is a way out of that cage.

I don’t see anything that indicates you are permanently broken, minoxidil or not. My thoughts are aligned with all other posters discussing CRPS and similar conditions, all of which can be overcome. Remember that you don’t need to burden yourself with the pressure of being perfect or living your previous life today. It’s also acceptable to move on from that old life - which you say you’re more interested in - but not be there 100% right now. How are you today? How are you dealing with inner pressure?

 

@Dorado good to hear from you (get ready for a doozy of a post). Today I woke up feeling not so great, had a rough night's sleep with burning legs/hands. You might be uniquely qualified to comment on this situation because of your Ehlers Danlos. I didn't mention this in my original post, but part of the reason these symptoms are so frightening to me is I feel like I've noticed a permanent change in the texture of my skin - it seems to be getting softer/thinner and I can see blue veins clearly all over my body when I never noticed them before. My face also looks like its aged considerably. I had started noticing this many months ago and thought I must be becoming a hyperchondriac, hyper focused on my body as a result of the EM symptoms, but then I happened upon a minoxidil side effects reddit forum and found many other people reporting the exact same thing. After doing some research it turns out Minoxidil can interfere with collagen production by inhibiting lysyl hydroxylase, an important enzyme in collagen synthesis (this is documented in in vitro lab studies). This side effect is not listed by the FDA or manufacturer, yet the internet is full of anecdotal evidence from users claiming this drug has damaged their skin permanently, some going so far as to claim it has given them skin symptoms similar to Ehlers Danlos, consistent with faulty collagen. Many people are just as baffled as I am by this.

It turns out erythromelalgia, raynauds, livedo reticularis, small fiber neuropathy, can be secondary to connective tissue diseases, "collagenopathies." I'm not claiming I have Ehlers Danlos (although I have been hypermobile all my life), but after seeing all these similar accounts of people claiming this drug gave them connective tissue damage, It has become exceedingly difficult to put my faith 100% into TMS (though I try). The specialists I've seen have of course run all the typical tests you would run for someone presenting with neuropathy and erythromelalgia to rule out known underlying causes, all tests come back normal, as I would expect them to (I have not had an SFN biopsy or capillaroscopy yet but I may resort to that as normal results for those tests would significantly boost my confidence that there is no structural tissue damage). If I mention I think minoxidil could be the culprit dr's will nod politely. There is obviously no test they could run to confirm or rule that out, and no studies in the medical literature reporting such side affects (apart from the in vitro studies on effects on collagen). This puts me in a very difficult position in which I am forced to reconcile the eerily similar anecdotal reports of other minoxidil users on an admittedly hyperchondriacal forum with the realities of my current symptoms and my long history of TMS, plus a convergence of stressful events last year and long running childhood traumas. It is true that after healing from 10 years of chronic neck pain last year, I experienced the symptom imperative. I got so good at immediately identifying the random musculoskeletal aches and pains as TMS that I could banish them nearly instantly as they popped up. Last year was like playing whack a mole with TMS. So I sympathize with the argument that my mind had to up the ante, and find a location/symptom that I am simply unable to rule out as not structural, and it piggy backed on the minoxidil in the same way "injuries" are exploited for back pain. But if this were the case - why would my symptoms be so consistent with what others have reported in dark obscure corners of the internet. I was not aware of EM or connective tissue diseases, or minoxidil's potential for such side effects until after I had already developed these symptoms. Did I nocebo myself via the astral plane? The nocebo angle doesn't quite add up here. This is what you'd call an inconvenient truth.

To answer your 2nd question - inner pressure - since I can no longer really engage in exercise or the things I used to enjoy, I try to simply force myself as much as possible to keep my mind oriented towards the mindbody universe, as opposed to letting it wander off into the doom and gloom of the "structural universe." This has proven extremely difficult, and I fail at times. I journal, I read the tms forum, I reread Sarno and SteveO. I go to coffee shops and study their books. I try and think about anger and the things I was unhappy with in my life before these symptoms took over my life. I go to church and pray God can help me believe this is an emotional/spiritual illness. The symptoms steadily get worse - I tell myself this is the extinction burst, and relief is right around the corner, I continue to pour my heart and soul into the TMS work. The symptoms get worse. I tell myself to stay the course. The symptoms get worse. I can't really explain the fortitude required to keep going like this, it is the hardest thing I've ever done in my entire life. I think the only thing keeping me from giving up on the TMS approach is that the alternative explanation/approach for this illness is far scarier and utterly hopeless.

I realize my posts are taking on the character and length of some kind of body horror novel (I joked to a friend that my life has become The Fly). But if I simply came here and said "I have these symptoms, help" that would only be giving like 5% of the story, the other 95% is my brutal battle with all the doubts. That said I won't be making any more detailed posts like this, either way its not healthy to continue to fixate on the details. And also I'd like to say this forum, and the TMS literature, is the only thing giving me hope. I can't imagine how horrifying it would be to have to deal with these symptoms without the TMS knowledge that I have, and without the people here keeping me grounded, so thank you everyone.

 

This right there is 1/2 the battle for nearly every condition.
We search, we find, we spiral.

 

Yes, I wish I could unsee/unlearn everything I've read on all those forums. It has not helped me in any way.

I know what its like to feel pure confidence in healing, I get glimmers of it every now and then, it is the most joyful feeling. If I could get stuck in that mode for 1 year I believe I would be healed. But as we all know it doesn't work that way. Its more like getting slapped in the face all day everyday and told not to wince.

 

Interestingly enough, my EDS skin is doughy and stretchy but gives me a “baby face” that prompts people to ask me if I use Botox due to a lack of lines (the honest answer is no). I do not have experience with rapidly thinning or aging skin with visible veins. Have other people noticed this about your skin? If you’re feeling self-conscious, perhaps try Tretinoin. EDS is known to make some people have velvet-soft skin that ages well with few wrinkles/sagging over time, and in other cases like Sara Geurts it can rapidly accelerate wrinkles/sagging. For people with EDS with moderate wrinkles as well as people without EDS, Tretinoin, microneedling, and chemical peels (depending on skin sensitivity) seem to be the most helpful ways to naturally stimulate the skin… but I’ll be truthful and say I haven’t dealt with this personally.

My EDS experience comes with subluxations, torn ligaments and other injuries from having a weird range of motion my body can’t fully support (rare eversion sprains, etc.), joint issues, poor circulation, nerve pain from dysautonomia, etc. Even so, I live a great life and remember that structural issues can absolutely be a vehicle for mind-body symptoms. It’s okay to have a structural condition. In fact, all of us will eventually develop some sort of condition should we live long enough, even if it’s just standard aging. But even the mind-body approach has a place in the structural world! This is what has helped me prevent myself from feeling partially disabled from symptoms such as nerve pain like I did back in 2017, back in high school, etc.

RE: the astral plane and nocebo… it’s clear that I’ve had dysautonomia since I was a very young kid. Emotional stress worsens it significantly. I started developing severe nerve pain after drinking alcohol in my mid-20s, but had no idea what alcoholic neuropathy was until I went on Google. It ultimately proved to be nothing more than my dysautonomia causing me to go into fight-or-flight mode after drinking alcohol; my body was too stressed out emotionally. Weird things can and do happen! You didn’t necessarily need to know about minoxidil side effects before developing symptoms that also share many characteristics with conditions such as CRPS, etc.

You mentioned that your symptoms get worse when you’re engaging in mind-body work. Regardless of whether you have any structural symptoms or not (like me with EDS), it is evident that the mind-body connection is playing a role here. You do not have to live your worst pain days every day. There are many good days waiting for you!

If you believe that a SFN biopsy or sweat test would help you believe that you are not dealing with permanent damage, then by all means go for it. I have a feeling your results will be negative. Also, remember that many posters on this forum who dealt with CRPS and other issues often weren’t aware of those conditions until after the symptoms came on. You would not be alone!

 

Thanks for your comments @Dorado and I wish you a speedy recovery from your ligament tear/nerve entrapment. Its rough being mortal sometimes.

 

@rand, thank you so much! I appreciate your kind words. Please let us know if you have any questions and/or need support anytime!

 

Got a little update. I've decided part of why I'm so stuck is I haven't satisfactorily checked off step 1. I've seen many specialists and run many tests but I still have way too many doubts bouncing around in my head to ever make any progress - I feel like a lunatic bashing his head against a cement wall. I'm in purgatory.

I finally followed up with my vascular specialist today about some tests I had done back in July. It was a "cold water emersion test" where they dipped my hands and feet in cold water, warmed them up again, and measured the arterial response. The doctor, who I underestimated at first, basically explained that my sympathetic nervous system is constricting blood vessels in my extremities, starving the tissue of nutrients. When a trigger such as heat, or the activation of the parasympathetic nervous system at night, acts to dilate the blood vessels, the starved tissues are there requesting 150% of the blood it normally needs, and thus the red hot reactive hyperemia occurs. I asked him if this could simply all be an emotional/stress response. He said 100% yes - My sympathetic nervous system could be stuck in fight or flight. I was overjoyed to hear this. But there was a little bad news too. My cold water emersion results indicate a normal blood flow pattern in my feet, but hands took a long time for blood flow to return to normal after warming up. He said this could indicate arterial obstruction/damage, and that a CT scan with contrast dye should tell us whether or not thats the case. So thats the next step. I'm eager to get this test now, and after reading Dr. Schubiner's thoughts on tissue damage occuring with some forms of TMS, I'm not necessarily afraid of the results either way, though an all clear on that one would send a powerful message to my subconscious.

I'm feeling optimistic, cause it all makes sense now, and to hear a vascular surgeon say this very well could all be a mindbody syndrome is huge.

 

Even if “if” you have something going on, you are, as your Dr. said, stuck in fight flight. Mind body approaches reverse this. It is why these methods are now being used with some patients with “real” medical conditions - a hospital in my hometown has an entire mind-body department (however, not for chronic pain) including psychologists, yoga, support groups, and other specialists because they recognize that a more relaxed nervous system contributes to overall wellness and recovery.

 

I'm glad you are feeling optimistic.
For me getting on that treadmill of doctor's tests makes me spiral downward. Our bodies are not perfect and there is always something that doesn't fit into the "norm" even if it's perfectly OK.
Anyway, I'm glad you are happy about it. And hopefully your amygdala and lower parts of your brain won't turn into an "excuse" to continue to give you symptoms. Good luck!

 

@Booble I prefer to look on the bright side - the test could come back normal, and then I will exit purgatory. I understand the risks, I am optimistic. Lets look on the bright side.

 

Yes, I'm all for that bright side!