SSRI withdrawal induced neuropathy

[Janet65]

Hi everyone,

ive been on a healing journey of 7.5 years after SSRI withdrawal left me with so many symptoms ive lost count. The main symptom im dealing with now is full body stiffness and neuropathy, very little pain. Im pretty much wheelchair bound other than the few steps i take with a walker to the bathroom a few times a day. It came on suddenly after i did strenuous exercise. Started in my thighs and spread to my whole body.

Ive been using somatic tracking for over a year with minimal results. Ive recently discovered that yoga nidra meditations also work well for me. One of the hurdles i face is doing any neuroplastic work increases my symptoms so its a challenge to do enough to see progress but not too much to be overwhelmed with symptoms. I do have to get myself to the bathroom and of course when symptoms increase it is even more challenging to even take a step so i have to be careful.

i know this is TMS. I try to accept where i am at in my journey, im compassionate with myself and try not to be afraid. I approach somatic tracking with curiosity. Im currently trying to do 4 15 minute somatic tracking or yoga nidra meditations also day. How often should we be using the tools? Im trying not to force healing but want to do enough to promote change too.

Thank you!

 

[miffybunny]

It sounds like you may still be harboring the false belief that SSRI cessation caused neuropathy. Even if that were true (sounds like a remote possibility at best) , the body would have returned to normal eons ago. You say you know it's tms but I have to wonder if your'e masking your doubt through intellectualization (since you know you have to believe it's tms). Before engaging with triggers and using graded exposure etc., your thinking needs to be on board...a conviction that your'e truly fine. Without genuine belief that your body was not damaged , tools will be of little to no help. If anything, they are generating more "fix it" mode energy, which just becomes another distraction and defense to avoid emotions and dismantle long held beliefs. Doubt is an insidious roadblock that is grossly underestimated in a mb world that has become overly focused on tools and side shows.

 

[Janet65]

It sounds like you may still be harboring the false belief that SSRI cessation caused neuropathy. Even if that were true (sounds like a remote possibility at best) , the body would have returned to normal eons ago. You say you know it's tms but I have to wonder if your'e masking your doubt through intellectualization (since you know you have to believe it's tms). Before engaging with triggers and using graded exposure etc., your thinking needs to be on board...a conviction that your'e truly fine. Without genuine belief that your body was not damaged , tools will be of little to no help. If anything, they are generating more "fix it" mode energy, which just becomes another distraction and defense to avoid emotions and dismantle long held beliefs. Doubt is an insidious roadblock that is grossly underestimated in a mb world that has become overly focused on tools and side shows.

im a little confused by your reply. Its well known in the withdrawal community that withdrawal can cause major dysregulation to the central nervous system. Its like telling someone with Long Covid that there is no way they can still not feel well because their covid is long gone.

In regards to your other points, yes doubt is a stumbling block and ive definitely had my fair share of doubt. When i see the shifts in my symptoms from meditations and somatic tracking though it leaves little doubt this is neuroplastic or TMS in nature. My question was, for those that have healed, and i know everyone is different, how often did they use the tools? Once a day? Twice a day? Most all day? I know tools can become a distraction but if you never use the tools how can you heal? Thanks!

 

[miffybunny]

If one is laboring under an illusion that a label such as "SSRI withdrawal syndrome" or Long Covid are actual pathologies, rather than fear mongering, made up labels propagated by the alternative industry and toxic support groups, that is a fundamental misunderstanding of what is actually transpiring and reality based. I've been on and off prozac for decades without any issues. It's only in the past few years that online groups have proliferated and spread this sort of mythology. The alternative/functional industry causes and profits from this to a massive extent. This is the timeline in which we are living unfortunately. I don't use any tools and I recovered from an extremely dramatic and debilitating label called CRPS (another nonsense fear inducing label) because I had accurate knowledge and information. Obtaining the correct information and logic automatically helped me to feel safe and then I dealt with the emotional aspect of the mind body (human) experience and got out of repression mode. I addressed 2 things : my thoughts and my emotions. I've been free of all chronic symptoms for the past 8 years and have zero fear of any returning. Hope that clarifies. Maybe other members can chim in since I can be quite blunt.

 

[miffybunny]

Forgot to mention, you must unfollow all of those groups as they are the worst doubt triggers in the world...filled with lost, confused, victimhood clinging, anxious, individuals who want nothing more than to have company in their misery. Stick to Dr. Sarno and others like Dr. Schubiner and keep it simple.

 

[Janet65]

I dont mind blunt but i know what i know. Its estimated that 40% of all SSRI users can have debilitating withdrawal symptoms that last years (which is really a dysregulated nervous system). I withdrew from Effexor/Venlafaxine whivh is well known to cause issues and isnt as widely prescribed anymore because of it. Consider yourself one of the lucky ones. A lot of us werent so lucky.

i also have blurry vision, sensitivity to smells and light. Sensitivity to food, medications and supplements. Every day is an exposure session for me.

i have been out of those groups for years because i agree they are mostly a complain fest and help nothing.

The first almost 3 years of my healing i got to 80% just distracting and knowing that i would heal in time. Then after a stressful time, i took a supplement that my brain reacted to and i went from 80% healed down to 20% in 3 weeks. I had incredible fear. Which i now know perpetuates everything. I then found neuroplastic tools but they were top down and probably caused me more anxiety. They just made me worse. I got better though in time. But once again after a stressful few months, i did some strenuous exercise and then boom my neuropathy started. Thats how i know this is TMS.

 

[JanAtheCPA]

Its like telling someone with Long Covid that there is no way they can still not feel well because their covid is long gone.

In THIS community, this is exactly what we say. So I'm afraid your analogy isn't going to do much for your argument.

the withdrawal community

Ugh. We have received numerous reports over the years about how toxic these groups are. They are addicted to being victims. Victimhood is anathema to TMS recovery. Every person who has ever recovered from what they ultimately decided was pure TMS has had to cut ties with victimhood and with the groups that promote it.

My question was, for those that have healed, and i know everyone is different,

That's right, everyone is different, and the question is unanswerable. You DO have to force yourself to use non-invasive emotionally-based tools if they provoke symptoms, because that's proof that the TMS mechanism is trying to get you to stop what you're doing. How can somatic tracking be physically dangerous? It's ludicrous if you think about it rationally. When it provokes a stress response in you, the message your brain receives is that you must be in imminent danger of being eaten by a wild animal, and it will employ whatever symptom it thinks will get you to abandon whatever you're doing that is attracting the danger. That's how primitive the mechanism is. You have to be more rational, and you have to be willing to stand up and fight the urge to run away and hide.

To be blunt in my own way, your situation sounds pretty extreme. Do you have trauma in your history, and have you ever engaged in psychotherapy? You might need more serious therapeutic intervention than DIY TMS theory can provide.

 

[JanAtheCPA]

Correlation does not automatically translate to causation. To me the obvious correlation is the underlying reasons why someone is on an SSRI to begin with. Mind you, I'm not a qualified mental health professional, BUT I am pretty sure that the vast majority of qualified mental health professionals do not support the myth of SSRI withdrawal syndromes.

Look to the true origin, which is traumatic and unresolved emotional conflict and repression. Which is a bitch, and which I ultimately find to be heartbreaking due to our inability to provide relief to so many who suffer from it.

 

[Janet65]

Correlation does not automatically translate to causation. To me the obvious correlation is the underlying reasons why someone is on an SSRI to begin with. Mind you, I'm not a qualified mental health professional, BUT I am pretty sure that the vast majority of qualified mental health professionals do not support the myth of SSRI withdrawal syndromes.

You are right they dont but a lot of qualified health professionals dont recognize TMS ideaologies either. There are other posts on here of others trying to heal withdrawal induced symptoms.

Look to the true origin, which is traumatic and unresolved emotional conflict and repression. Which is a bitch, and which I ultimately find to be heartbreaking due to our inability to provide relief to so many who suffer from it.

i went on SSRI for health anxiety. I have no childhood trauma. I have some medical trauma as an adult. Two major surgeries that can ding the nervous system. Yup its hard when there is nothing blatantly obvious emotionally driving this. Ive done a lot of internal work with IFS somatic work. Ive had numerous different therapies in the last few years. The SSRI withdrawal caused me way more trauma than anything i had before it. I have not done work on the withdrawal trauma because im not ready yet.

 

[Cactusflower]

@miffybunny is saying, that it doesn’t work to have your feet in both camps.
I know. I could believe that my back pain will never go away because both the medical and most physiotherapy models say that someone with my “diagnoses” is “damaged” “sick” “hopeless”.
I just walked 2 miles up hill to carry home my groceries. Three years ago I was bed bound with many symptoms you have (and many more) and could not walk. I had no life.
If I chose to continue believing I was broken, where do you think I’d be now? And my symptoms were a drop in the bucket to @miffybunny’s story.
I choose to no longer give my headspace to people who may mean well but aren’t helping me. I choose to take back the power I handed over that left me feeling powerless and victimized. Somatic tracking and meditation (consistent, daily lengthly practice) can work but does not address the emotional rage, personality traits and fear elements that Dr. Sarno wrote about.
If you have not yet read the Divided Mind, I suggest you do.
You might also like to add the free Structured Educational program that guides you through his work. (Tmswiki.org -scroll down to find it).

We need to examine the stories our mind has created as the cause of TMS and begin dismantling false beliefs - all sorts of them - in our lives and acknowledge a fear based life and the behaviors and habits of a lifetime that brought us to this point. It takes brutal honesty and deep vulnerability to do the work. It’s hard, messy and uncomfortable.. you’ve probably experienced some of that.
This is a highly supportive community but it’s also one that helps us hold ourselves accountable to our own wellness.
Welcome!

 

[Janet65]

Thank you so much CactusFlower!

ive tried to get to the emotions underneath my symptoms because i know they are there. Mine is probably rooted in sadness and loneliness. The problem is i cant access it. Did you find the emotions started to surface once you started healing? Im wondering if my system doesnt think its ssfe enough to deal with them yet. And ive always been a worrier too and have no point of origin of that.

Ill look into the book and program you suggested.

 

[Cactusflower]

Not lying: I still have chronic pain and am still working through emotions but things are much much better. I still have hopes snd goals of where I’d like to get to, but not a lot of self-pressure to be there “now”. That doesn’t work with me.
Yes, there is a lot about safety, which is why we need to divorce the old beliefs that do not serve us and keep us from feeling safe. I have been doing this by showing my brain I am safe. I can’t do it if I am constantly trying to be “careful” (ugh, don’t we always say be careful to the elderly, frail and sick?) my husband still says be careful and now that makes me want to punch walls ! Every behavior and “ritual” around my symptoms is getting torn down but in it’s due time knowing I’m building confidence and breaking the false barriers of my mind that kept me in shackles.
How did I access emotions? Through journaling (the SEP teaches various methods), through EMDR (fear and anxiety were all I felt for a long time, EMDR helped me sort that out) and teaching emotions instead of symptoms to learn how they can manifest in my own body. Although you may not have had childhood “trauma” you might not have had a family which was emotionally available, supportive and taught emotional maturity skills .. and they will come. I also used meditation guided by @TG957 ’s experiences of long practice (which is a challenge!) and that helped me to clear my overthinking mind and get into my body more easily to sense the physicality of emotion instead of the stories and thoughts around them.

 

[Janet65]

Thank you CactusFlower! I have not yet done EMDR but i think my therapist does it so maybe i need to try it. I have heard others have had great results with it too. Ive done a lot of parts work with an IFS therapist. Im much better mentally than i was a year ago but still have a long ways to go.

Do you have a link to the meditation you used? Id love to try it out. Ive been doing somatic tracking and yoga nidra meditations mostly.

I would love to feel a sensation in my body and immediately know what emotion it is. Sometimes i get a quick wave of an emotion when i connect with a sensation but its fleeting.

Thank you!

 

[Cactusflower]

"Sometimes i get a quick wave of an emotion when i connect with a sensation but its fleeting." - emotions ARE fleeting.
I suggest another great exercise for you to do is the Evidence Sheet and Success Sheet

Success Sheets help you begin to focus on "positive" but truly positive parts of recovery. For example you'd write down the fact that you actually FELT a sensations of emotion. No real explanations. This is just a list: -felt some shame today! or Anger feels awful but I felt it!!
You are changing the mindset that feeling hard emotions is unsafe to classifying them as a success to feel. I added every little freaking thing to my list at first...pages. And slowly I didn't need to do it anymore. This is a great way to refocus on the constant need for inner self talk to keep you "safe" to actually showing your brain and mind what is now considered safe within a new way of thinking.

Evidence Sheets are the things that show you that your symptoms are truly TMS - and not some "syndrome" or "result" of anything, but simply TMS and nothing more. Here's an old thread from TMS Wiki founder Forrest who talks about the benefits of an evidence sheet
https://www.tmswiki.org/forum/threads/the-benefit-of-an-evidence-sheet.2292/

You mention loneliness. I too was lonely, and still am on occasion. Loneliness is not necessarily classified as being without social contact, it's real root is our difficulty truly liking ourselves - being our best friend and someone you want to constantly hang out with. However, humans do need social contact. When I was bed and home bound I would invite a few trusted souls over to hang out for short periods - say an hour. For others like my best friends who live very far away, I did Zoom calls and wrote letters and cards which has meant much to them. My family has not been quite as "there" in their support (not that they aren't supportive, just not a present). I wrote list of my "support teams". A very short list of folks I knew where in my corner - therapist, TMS coach, spouse, few friends, cats, if you have faith it might be your Source, Goddess, Creator or whomever - even people who have passed away but always supported you. Then I made a list of people who were more casually on my team - folks who care but aren't as involved - friends, family, my physical therapist (who's moved up a notch and is on the top list now!) it just helps you mentally to know that the universe is looking out for you!

Eventually I didn't need those sheets, but for awhile, they surely came in handy.

As for meditation, I like Insight Timer which is an Ap that can be either free or paid for - your choice. The free portion is very extensive. My preference is to use the music "Flying" which is calming and repetitive - great for breath focus. There is no guidance but it's offered in various lengths of time. My other favorites are a few by "Healing Vibrations" which start loosely guided and move into just sound baths. I don't like all of their sounds - and have found a few more soothing like their Heart Opening Guided Meditation, Restorative Body Scan and Tibetan Bowls guided breath work (also on Youtube, search for their "guided" options if you like, the rest are only sound baths and bowls.) On Youtube I like Dani Fagan's The Cloud yoga nidra - but it's a LOT of talking and stillness. Stillness will teach you to help you learn to ignore the brain chatter and just focus on the sensations and that's what I'm going for. It has taken a few years to get here.

My EMDR therapist combined some IFS together. They are complimentary in many ways.

You asked at first, how much time to spend doing TMS "things" - I suggest an hour a day of "work" - meaning the emotional work, and reading Sarno. If you haven't come across Claire Weekes yet, you might give her a try too. Small books with practical instruction for dealing with anxiety and related symptoms. Complimentary to Sarno's work. Then separately, about an hour of meditation, and some time to do "fun" stuff - thing you enjoy or used to enjoy. Not only do we tend to block negative emotions, but we can block positive ones too. You need to get some good juices flowing to combat the heaviness of TMS. Do it as routinely as possible to start if you feel you need to "MAKE" yourself do it. Stuff that engages your mind away from TMS - crossword puzzles, puzzles, needlework, crafts, sewing, music, art. Get outside as much as you possibly can, even if its just sitting in front of a window or going on a balcony, porch or deck. Get the sun on your face, look at the clouds, the birds and be part of the world outside of your own little safe cocoon.

 

[Fal]

I had full body stiffness too, whilst im still not fully recovered i made a lot of progress. Like you i could barely walk without intense pain and getting up and down from chairs, beds or anything was hard work and i couldnt even get on my knees to change my daughters nappy. I started fully going ahead with the TMS approach last year on Feb 1st when i realised the NHS didn't have a clue and all tests came back negative. 18 months later its only noticeable in my hands, feet and right hip and i havent done any meditation, breathwork. I just changed my mindset and stopped the intrusive thoughts and putting myself down all the time and worrying about everything.

My only struggle and i wouldn't call it bad one is that i know the end is in sight but i still have some down days during that journey to get there and like us all just wish it was a quicker process as sometimes it feels extremely slow or you go into a plateau where improvements seem to stop.

 

[Janet65]

Thank you Fal! Im happy to hear you have made such great progress!

My doctor told me it was all in my head which i guess technically it is lol. Im lucky in that i dont have much pain but standing up was like i had an 80lb weight draped across my shoulders. After almost a year of somatic tracking, its more like a 20lb weight now. But walking is still hard like each leg is moving a pillar of cement and i have zero balance. My mental health has improved a lot and is the biggest change my family can see. I have some sense of safety in my body now where before i had none and im not as afraid as I was. I try not to worry and focus so much on my symptoms but i struggle with this. Im going to start journaling and see if i can go deeper into emotions that might be stuck. You are right healing is darn slow but at least ive seen some improvement.

Thank you for posting! It helps to know im not the only one dealing with this.

 

[Diana-M]

walking is still hard like each leg is moving a pillar of cement and i have zero balance.

helps to know im not the only one dealing with this.

Hi, Janet! I’m right there with you. I got these symptoms after Covid almost 2 years ago. I’ve been on the forum for 18 months. Like you, many of my improvements have been psychological. I was hopeless when I came on here and now I’m filled with optimism. Some days are harder than others, but every single day is slowly getting better for me. I’ve done a ton of emotional work, encouraged by everyone here. Sometimes it’s hard because they suggest things that I want to deny or I don’t want to do. But it always turns out good for me. I know that I’m going to get free of this. I just don’t know when. The journey is a chance to make your whole life better. There is so much to learn! It takes a lot of courage to live with TMS, especially when it makes moving around so difficult. It’s easy to get down and think life is over— but it’s not at all. I take great courage in knowing that people are ahead of me who made it out. Cactusflower is one of them. Welcome to the forum. I hope you can stick around. It will help you.

 

[Janet65]

Thank you so much CactusFlower! I will look into all you suggested. I was only doing about 20 min of “work’ before but now am doing around an hour. Ive done meditation in the past but it had been a long time. Im shocked at how much it relaxes me. Its like ive taken something for anxiety it relaxes my system so much.

ive started the SEP and read some of Sarno last night. I havent journaled at all so im hoping doing that helps me connect to those deeper emotions. I find Sarnos explanation of whats behind TMS fascinating and i mean it makes perfect sense. His explanation is the only one ive seen that is solely about emotions to heal. In the chronic illness community like Chronic Fatigue Syndrome, they focus first on regulating the nervous system with tools like visualizations, somatic tracking, changing your mindset but deep emotional work comes later after youve had a lot of physical healing happen. And ive seen a lot of success stories with this approach which hasnt worked as well for me which is why ive ended up here. Its like i must be missing something and repressed emotions might be it. I liked how Sarno said some people can heal just by reading his book, thats enough for the subconscious brain to feel safe and stop the symptoms. For others repressed emotions can be multi layered and need more work and im guessing im in that category.

My IFS therapist likes to combine the two when she does EMDR. She feels its a gentler way to do it. Ill talk to her about it next session.

i do have a lot of fun stuff i do like ipad games, i watch a lot of diy craft videos on youtube, i watch shows on my ipad too. I had just started designing cross stitch patterns on Etsy before the neuropathy started. I was able to stitch my designs for 6 months before the stiffness and neuropathy in my hands interferred. Im still designing though but even that can increase my symptoms so i have to pace myself. See now i have a history of negative emotions attached with selling stuff online. Getting sad if no one buys my stuff etc. i keep telling my brain that this time its different and im doing it because its fun and if no one buys anything i had the enjoyment of designing which was the whole point. My brain half believes it lol. This also might have contributed to the onset of my neuropathy.

thanks again for all your great info! I really appreciate it.

 

[Sita]

Hi Janet,

You you have a link to your Etsy shop? It's OK to post it. I'm interested in beautiful cross stitch patterns. Thanks and welcome!

 

[Janet65]

Hi, Janet! I’m right there with you. I got these symptoms after Covid almost 2 years ago. I’ve been on the forum for 18 months. Like you, many of my improvements have been psychological. I was hopeless when I came on here and now I’m filled with optimism. Some days are harder than others, but every single day is slowly getting better for me. I’ve done a ton of emotional work, encouraged by everyone here. Sometimes it’s hard because they suggest things that I want to deny or I don’t want to do. But it always turns out good for me. I know that I’m going to get free of this. I just don’t know when. The journey is a chance to make your whole life better. There is so much to learn! It takes a lot of courage to live with TMS, especially when it makes moving around so difficult. It’s easy to get down and think life is over— but it’s not at all. I take great courage in knowing that people are ahead of me who made it out. Cactusflower is one of them. Welcome to the forum. I hope you can stick around. It will help you.

Thank you Diana! Yeah living with TMS definitely takes a lot of courage and not giving up. What type of work have you done to get into those emotions? Did you try journaling?

crazy Covid was your trigger for your stiffness. I find so many overlaps between my symptoms and other chronic illnesses.

i have hope that i too will eventually heal. I know im on the right track but i just wish it was faster. I decided a long time ago that this healing journey was going to transform me not just heal me. Otherwise what was the whole point. Ive struggled my whole adult life with procrastination on cleaning my house and getting rid of clutter, etc. i know my brain is using it as a safety mechanism. If i get lonely i can always clean, but my messy house prevents me from having people over which would prevent the loneliness. Does that even make sense? Lol. Stuff like this ive said brain get ready because the big purge is happening and if i have to cry or rage or whatever emotions surface im doing it.