Doing Well, Skin Joints Pandemic still scary

I know I shouldn't be worrying because I'm otherwise doing well, but, some of my symptoms might not be reversible. I'm managing well enough that I don't need a doctor or pain meds. I'm doing well pain wise but no amount of reassurance can stop anxious thoughts about the pandemic.

7 months after my withdrawal symptoms worsened with severe pandemic anxiety, my skin started to become thin and soft, it felt more elastic and with the muscle atrophy of sitting, I could see and or feel a little more of my ankles/knees etc. Recently my knees hyperextended noticeably enough that I feel more unsteady there and my ankles which already love to pronate now feel like hold up less than they used to(the muscles/tendons/ligaments feel like they have more slack). My toes change color in cold as well (it scares me no matter how much I tell myself it's benign). My nails are thinner and a little different looking too.

I feel like going to get a diagnosis would be a waste of time and too dangerous and invasive right know. It's really hard for me to accept that I might have to live with the consequences of just a few years of anxiety and one spur of the moment medical decision for years to come, and other epigenetic mind body factors.

I have all the risk factors: trauma, female, anxious, born with flat feet that corrected but still low arch, biological narcissist mother is a little double jointed, not breastfed long enough, don't exercise enough(being skinny is the worst excuse), my father got lupus about ten years ago (including thinner skin) but recovered almost completely because he understands it as mind body with a combination approach just for blood tests and monitoring. My grandmother had both RA and osteoarthritis. My uncle was a major hypochondriac, extremely sensitive and too tender to handle even the slightest conflict. My pediatrician died of MS in 2018, it was unusually aggressive and yet when I last saw him he carried on like it was just a little sprain.

So basically it feels like my worst nightmare in slow motion, and I'm lucky to be alive and healthy in this scary situation. I feel like I can reduce it or slow it down, but I'm not sure if I can get rid of it completely.

Despite all the privilege and talents I have, I feel constantly afraid that I'm more at risk in this pandemic than I thought and don't want to waste more of my life worrying when it could hurt my body more by doing so. I feel like every fear cycle increases my risk.

If it weren't for @Dorado, @plum, and @miffybunny , I don't know how I could have understood TMS in its fullest extent in both cognitive and somatic paradigms. Maybe I still have a chance to completely recover, who knows? Is it a lifestyle disease I've been forced to inherit?

 

Hi, @Balsa11! I’m sorry you’re going through such a hard time. I’m going to respond to you in a bit, but in the meantime I wanted to reassure you that you’re not alone and there are answers. Hope is not lost - I’m seeing a lot of different things in your post and there are many reasons to have hope.

 

Hi Balsa11,

My observation is that perhaps your core experience is anxiety. And on top of that you're anxious about your anxiety, for example that you're anxiety is causing health problems. My friendly coaching is that you sit more and more with the anxiety and the thought-spin which comes from it, feeling it in your body and staying in the moment.

I am not suggesting this easy! I think for me this is the core practice: how do I stay with basic inner textures which I want to run from, and simply feel and allow them? Knowing the mind will spin a myriad of fearful thoughts/conclusions.

I also see some self-judgement, comparing your experience with your pediatrician, that you're more upset about things, and this makes you "less than" or "more f_cked up." Is this what you're saying? If so, I suggest you keep your radar up for superego activity, and at least start with naming it as such. Working to defend your experience, disengaging with the Inner Critic would probably be hugely helpful. I know it is for me. I have to watch for the embedded self-hate.

I notice that I have a combined feeling of anxiety, overwhelm, and inside this, self-rejection. That extra piece of self-rejection is what tends to cement the whole thing together, keeping it "whole." Keeping it believable, keeping it something dangerous which needs to be fixed.

To whatever degree you can find a way to have compassion for your human condition, this is an antidote for me. Just to know that I am in this existence, with familiar flavors of suffering, and that there is no magic bullet for me to shoot. I am not missing anything... This is the life which is given me. Can I be tender about this? If I can, then there is love. And this love is what I want down deep.

Andy

 

It is completely understandable that people across the globe are anxious right now. However, it's also important to not underestimate how even reasonable and shared anxiety can play a role in our symptoms, or how wonderfully responsive anxiety is to proper management techniques. The latter can vary by person - what works for me may not work for you and vice versa. We must accept this so as not to become discouraged by the success of others when they cite improvement with methods that offer some of us no significant benefit.

I apologize if you've clarified this elsewhere, and there is no pressure to respond if you aren't comfortable: what type(s) of medication(s) did you withdraw from? Withdrawal symptoms absolutely DO increase with anxiety as well as other powerful emotions, which is the number one reason behind claims of so-called "permanent" or "long-lasting" of damage. It is evident that you are indeed dealing with TMS/the mind-body connection. Toes that change color when exposed to the cold (Raynaud's) is super common - at one point I thought I'd never swim in Lake Michigan or the ocean again. And yet I can do just that without any trouble these days, very enjoyably I should add.

Regarding visible changes to your connective tissue as well as your dad's history with lupus, I certainly would see a medical professional about this, but please do not get hung up on me saying that. I was born with Ehlers-Danlos and have incredibly soft, stretchy skin that frequently elicits amused comparisons to Gumby and Mr. Fantastic. I experienced related symptoms of dysautonomia and mast cell activation from the time I was born, and TMS is not responsible for my joints' subluxations and threats of dislocating. That said, my overactive neves and mast cells are manageable and don't disable me - until they're triggered by something like powerful emotions. At one point, I was convinced I was going to have to quit working and apply for disability. Now I'm able to laugh right in the face of symptoms that sometimes reemerge when I'm dealing with an intense deadline or unreasonable relatives or whatever. They can't get me anymore and my fear has diminished to nothing.

Some people claim to completely heal from structural conditions such as MS after taking a mind-body approach. Others don't 100% heal, but can experience improvements, to the point that they no longer unbearably suffer. We're all individuals and I strongly believe our bodily processes and results are individualistic, too. This is why it's important to avoid thinking about the worst possible outcome or expecting perfection. The best advice I can give you based on my own journey is to simply aim to be balanced and happy - everything else will follow.

It's also critical to look at stories like Steve Ozanich's, who has verifiable changes from arthritis, yet the condition only becomes painful after long periods of heightened emotions. Or people whose injuries have totally healed, but they continue to have symptoms. There are many possibilities with the mind-body connection.

Is this related to anxiety and withdrawal, and/or other factors? I highly doubt you've done any permanent damage after feeling stressed out and withdrawing from a medication. That's just called life! And don't think too much about epigenetic changes. Our bodies are constantly interacting with various sources of potential epigenetic change, whether they're positive, negative, or neutral - or a combination, given the complexity and number of our cells and genes. Some epigenetic changes occur before you’re born.

There was a time when I constantly felt guilty about "damaging" and "ruining" myself. For example, if I drank too much while celebrating a friend's birthday and then had a headache or stomachache for then next several weeks, I would become convinced that I caused myself to develop long-term brain damage, neuropathy, gastritis, etc. No other 25-year-old was concerned about such things, but the self-blame I'd put on myself was immense. And it was never anything but nonsense. Cymbalta withdrawal was a traumatic experience for me for this exact reason, although it didn't have to be had I understood what I do now. I should've never put any credence in the accounts on withdrawal forums indicating that I would never be myself again. Additionally, I now engage in many activities like drinking caffeine that would’ve shot off my nerve pain for months on end in 2017. I had no idea back then how much I'd love life today and I'm grateful I didn't simply consign myself to a life of pain.

All the more reason to have hope, even if some of your symptoms are caused by a structural issue to some degree. I know this based on my Ehlers-Danlos, dysautonomia, mast cell activation, joint subluxations, skin that has always taken forever to heal (that healthcare professionals often have trouble with), etc. It's legitimate and does cause some unique challenges, and I fully recognize that there's a spectrum in which some people have far worse circumstances than me. However, I also know based on my own experience, as well as what the number one hospital in the world told me, that there are plenty of people on health forums who think they're totally screwed and disabled when they certainly do not have to be.

This is why even someone who has a very small amount of verified small nerve fiber damage on their toe doesn't need to be in disabling pain, yet you’ll see instances of this occurring. That's also why the aforementioned renowned hospital made me promise to stay off Ehlers-Danlos forums. I'd get downvoted for saying such things on such a message board, but it's literally what I was told by some of best professionals you can find anywhere. Look at your dad - what if he had never given mind-body work a chance?

I can't tell you if you have any connective tissue problems or not. That said, many of us have structural conditions, and again - we are okay. You yourself said you are managing at least somewhat well right now. I don't have to completely absolve myself of dysautonomia, mast cell activation, subluxation, etc. to lead a fulfilling life with minimal or manageable symptoms. Everyone who is alive is going to develop something and/or change someday, even if they're never formally diagnosed or aware, or even if it’s as simple as natural changes in one’s eyesight or hearing. This is another benefit to not assuming the worst or expecting perfection: one day, when we are eventually dealing with something (whether acute or chronic) and/or have natural bodily changes like menopause or thinning cartilage, we’re going to want to be strong. And we won’t want to go back and forth with “What if I had just done things differently?” thoughts when this happens.

Another way of putting this is that being in completely perfect health is not the answer to TMS/mind-body healing, and neither is giving ourselves a self-fulfilling prophecy of pain.

Do you have a support team that can help you manage these emotions? What do you enjoy doing? Are there any relaxing activities that help you just unwind? Like Andy mentioned, how do you practice self-compassion? Are you prone to feelings of guilt, and if so, how do you handle regret? Is there anything that makes you feel safe? Has your dad given you advice based on his own experience? Even if you have zero structural conditions, it sounds like he may have some great wisdom.

Ultimately, you say you're able to live a pretty manageable life right now, but you're terrified of these symptoms. Based on that, my gut feeling is that anxiety is your biggest problem.

 

I withdrew from Zoloft(SSRI).
Things have settled down a bit as I've cleared my last term's classes and I'm examining more scary existential fears.

I think this is not as threatening as I am making it- yet again, I'm caught in the act. That same relapse of the victim mentality.

 

Thank you so much for your very detailed and helpful reply, @Dorado . I'm really grateful. Hope you're doing well.

 

You are indeed caught in the act, but you’re not alone. Many of us have dealt with long-term heightened stress and Zoloft withdrawal (the one other antidepressant I was prescribed years before Cymbalta). You haven’t done anything that countless of us - who are doing very well today - have not done ourselves. Don’t be so hard on yourself! It’s a process.