SSRI withdrawal induced neuropathy

hi Sita. Here is my link. https://www.etsy.com/shop/AcadiaStitchery

thank you so much for asking!

 

Oh yes, it does! I’ve let my house get really rundown and so I’m embarrassed to have people over. It’s an excuse to keep people from coming over. But recently, I’ve started fixing up my house (not me personally—hiring people to do it). I realized the big blocker has been me not loving myself enough to give myself that gift. But, like you said, this journey is overhauling my life.

Yes, journaling is really big for cracking you open. But you have to stick with it for a while because it’s kind of like you’re thawing ice. I didn’t realize how frozen my emotions were— I actually thought I was an emotional person, but there are so many things I suppressed. Anger is my most difficult emotion to feel. I also had no clue that you feel emotions in your body. I’ve only ever really felt them in my mind. These are all the things I’m learning these days! If you do the SEP, you will learn a lot about this.

 

Note that watching videos etc is a distraction. Participate in the fun things. Observation puts you on the sidelines - it’s about others, not about you. Participating gives you opportunity to live, space to feel the feelings while watching is more observational and doesn’t always allow for “life” watching quick videos etc is more about escaping life. Doesn’t mean there isn’t a time or place but I find that they aren’t really fun. Just things to pass time. You want to feel some joy.
We go on short road trips a lot. It’s something I do well with. We listen to music, but it tends to zone us out. So we also often play banana (yellow card) and end up laughing and talking more. It’s kinda like that.

 

It took me a few months of TMS healing to realize that my emotions were frozen, except for fear and anxiety. When you unconsciously suppress your emotions, they get suppressed! After months of meditation, I finally started feeling my emotions. 8 years later, I still have to make an effort in order to make my emotions surface. Keep focusing on calming down your nervous system through meditation, try different styles and methods of meditating until you see which one works, and then stick with it. Most importantly, make sure your meditation sessions are at least 45-60 minutes each, otherwise, you are not likely to see results.

 

I hear you Cactusflower but interacting is hard right now. I hope to do more of it in the future. I used to love to go on car rides with my husband. We would go down to the shore and sit and talk. Go down roads we hadnt been down for awhile. It was fun and i miss it. Because im in a wheelchair i have to weigh if the stress of getting me into the car is worth the ride. Right now its not.

Thanks for your wisdom though and i need to think more about trying to interact more. Being in a wheelchair to go anywhere makes it difficult.

 

Thank you TG!

im doing 15 minutes 4 times a day currently. Im finding yoga nidra are becoming my favorite. They allow me to connect with my whole body and not just the parts with sensations. I can work on slowly expanding my meditation time. Do you think its better to do 1 45 to 60 minutes meditation session per day instead of multiple shorter sessions?

Thank you!

 

Janet, you can try a longer meditation and see how you feel. Or, you can just continue the 15 min/4 times a day practice. The intensity counts too, not just the length.
I liked the big house/peace near the sea cross stitch design of yours

 

One uninterrupted 1 hr, no doubt. Confirmed by several other people to deliver results.

 

You can still interact with physical media? I mean also using physical things like pencils, paintbrushes, etc.

If you live in a metropolitan area, you may qualify for transport in a mobility bus. My father used a wheelchair and we went to museums, art galleries, and even picnics on our city wheelchair transport. Where I live now there is no good option except for an all female volunteer crew who use old schoolies within our neighborhood to transport other women with needs. If you haven’t looked into it, you might try.

 

Yes but it has to be smooth like my apple pencil and my ipad screen are smooth. Because of neuropathy my hands and fingertips are very sensitive to anything with texture. Even smooth things can bother if i handle it enough.

i dont live near a metro area but its more about internal strength. If my system gets over stimulated it ups my symptoms. Even talking too much revs me up.

Thanks for the suggestions though. Im looking forward to being able to do those things again.

 

Thats what im going to do. Ill add a 20 minute in today and if that goes well ill keep adding. Its crazy how much just the 15 min relaxes me. I tend to want to fall asleep though by the end. Which maybe thats more proof its working.

Thank you!

 

exactly Diana! I bump my boundaries every day just being. Many times ive gone too far outside my "window of tolerance" and had to back off. Less is more when your ns is hypersensitive. Many times ive tried to exercise my stiffness away and paid for it so ive learned if they say to hold a stretch for 30 sec, 5 sec is good for me to see how i respond. Its hard pacing but like you said it is a good lesson to learn for a healthier life.

 

I still have symptoms, and they definitely increase when I am challenging the *whatevers* - at some point, you just have to go with it. You just do things even if it causes symptoms and count the fact you were willing to do it as a win. This is exactly how I was able to communicate to my mind and body that I'm safe. My nervous system caught on pretty fast ... as did my brain. An example is my needing new glasses prescriptions. This is something that definitely impacts me. At one point I'd have a major setback but now I'm dealing with some increased symptoms, going about my day being confident it will settle down again. The most important thing in my recovery was knowing when to stop "turtleing" as I like to call it. Crawling back into the shell. Of course there are times you back off, but you don't back off for long. You don't retreat and hide out again for weeks or months. You keep working at it even if there are symptoms. My mantra used to be "not dead yet!" to let my mind know that nothing was killing it!

 

I hear you cactusflower. Every self healing program ive been in says this and i plan on doing more of this when my system calms down a bit. I have to be careful if i ramp up my system i can become fearful which i feel defeats the whole purpose. So its a balancing act.

for instance. I tried to add vit D, just 30 iu a day i did fine for a few days but then my legs got so stiff i could barely lift my legs to take a step. I kept going with it for probably 5 more days and it did not get better and by the end i started being afraid everytime i had to get up and walk because my legs were so stiff i kept losing my balance even with my walker. I have outside help that helps me with meals but i HAVE to be able to walk to my commode. So i cant just say “bring it on" and lose my ability to walk at all. So i stopped the Vit D and a few days later my legs went back to baseline. I would love to be able to just push through but my system hits back so hard its impossible at times and i just have to stop and try again later.

This doesnt happen everytime and i dont know why some things my system will accept after a few days but there are those "sticky" things that it just wont let go of. Ive had issues with Vit D since the beginning. I know once my system gets calmer it will accept it because ive been here before.

 

Me too! I think people are all different. Some people can push and still stay safe. Some people can push, and they literally will be in danger. If I push too hard, I’m unable to go up my steps (And even on a good day, it’s pretty interesting how risky it is. I try not to think about it!) But the point is, I can still “push” in ways that stretch my limits— they’re just very small ways. I always think of seeing a snail on the sidewalk. You see one and you think “that poor thing is never going to get anywhere.” Then an hour or so later, you look again, and the snail is all the way past your house. How did he do it?! The trick is to never give up. Never ever give up. That’s what keeps me going. When I compare myself to where I was a year ago, I’m far. When I compare myself to others—I can get depressed.

 

A lot of people in the chronic illness healing community(chronic fatigue syndrome, advanced lyme disease, long covid, etc which is also TMS) have to do baby steps. A lot! It works and is gentler to your system. I like your snail analogy ☺️

there are a lot that can go faster too. Im hoping eventually when my symptoms ramp up they stay in my window of tolerance and then i can let it ride. Until then i have to chose when to push and when not to.

 

I greatly sympathise and empathise! I have big issues with my brain's reactions to vit D. This is some of my story to include what I am doing about it; if nothing else, I thought that maybe knowing you're not alone might be of some consolation to you...

At one time I was for a long time bed bound (and then housebound after that) with severe general mind/body symptoms... in my case wide-spread muscle pain and muscle stiffness and chronic fatigue. Blood tests showed, and still show, that I am clinically deficient in vit D, at one time extremely deficient. As well as increasing general body-wide stiffness to a very disabling level, my brain also causes a severe inflammatory reaction in response to vit D every time I have tried to supplement with it, even with just a low/'normal recommended dose'. It causes/creates severe mastitis (both breasts majorly red and swollen, irritating my breast ducts which cause bloody nipple discharge, and fever, requiring antibiotics and on one occasion surgery to remove a breast duct). Each time this happened, it sent me down a rabbit hole of being investigated for inflammatory breast cancer and other breast disorders (biopsies, scans etc).

The mastitis occurs every single time I have tried to supplement with the 'recommended dose' (which is far less than needed to correct my deficiency). I expect you'll already know that vit D is actually a hormone, or more accurately a steroid hormone precursor that the body converts into an active hormonal form, calcitriol. However, I remembered that when I was younger I could tolerate a 'recommended dose' that I took over the winter months so, albeit I'm post menopausal so my hormone levels are obviously different to then (as I'm not and never have been on HRT), I decided to take a 'baby steps' approach to 'go under the radar' and not frighten my 'lizard' brain into creating symptoms...

Instead of supplementing, I very gradually introduced more vit D containing foods into my diet (oil fish, like mackerel etc) and after doing that I've added taking vit D 10 µg (i.e. drops marketed and used for babies) and very very slowly increased the dose, increasing only after many weeks of upping the dose just a little bit each time. So far so good, although I'm not yet up to taking even the 'recommended dose' for those who don't have a diagnosed 'clinical deficiency' who just want to prevent deficiency over the winter months, but I believe I'll eventually get there and beyond, to the point of correcting my deficiency, as I am obviously concerned about thinning bones at my advanced age. (In case anyone reading this wonders... I can't get vit D from sun exposure as I'm very fair skinned and have had actinic keratosis on my face which are pre-cancerous changes to the skin, that needed to be treated by a dermatologist.)

I wish you all the very best with your baby steps approach. I've gone from bed bound to functioning pretty well by comparison by using 'baby steps'. (Taking 'baby steps' has been the only way that I have been able to improve my lot; anything greater than that and my brain reacts badly and hobbles me.)

P.S.
@Janet65

Tamara (aka @TG957) has written a really good book about her recovery from mind/body symptoms to include about meditation and how it helped her https://www.amazon.com/Defying-Verdict-Defeated-Chronic-Pain-ebook/dp/B0834Q46SM/ref=sr_1_1?crid=38E9SCALUG7ZL&dib=eyJ2IjoiMSJ9.4qz4YMpSTchAdA3qUEAt5oK90H1A8CS0O4SOEmlOZsC_fDVBagkm1CI6NTK_L5J_.Ax911YxJl9-OcxdkEr1b4Yzw3MMYIQKlLvwR2V0VgXY&dib_tag=se&keywords=defying+the+verdict&qid=1756559205&sprefix=defying+the+verdict,aps,151&sr=8-1

 

I love Tamara’s book! I read it often. Really inspires me. Especially since she had my ( our) symptoms.

 

Thank you so much for your reply BloodMoon!

Before SSRI withdrawal i could take 2000 iu of Vit D a day no problem and i did it for years even after menopause. In fact before withdrawal i had never negatively reacted to any substance in my life ever, this includes 2 major surgeries and numerous other tests i had done in my life. To start reacting to everything including food has caused me incredible trauma.

I am extremely deficient in Vit D confirmed by a blood test. Like you im not supposed to be in the sun as i have a history of skin cancer. i can tolerate an egg now which does have a little D in it. I felt brave for even contemplating trying D lately and i know that once my system calms down a little more ill try again and it might not be as reactive. I too use baby drops. I drop it on a saltine cracker and then cut that drop in 2 to get around 30 iu, which is the lowest dose i have found to try implementing. I was also very deficient in Vit B12 complicated by the fact that for 5 months i could not tolerate meat at all, it gave me extreme burning nerve pain. My doctor thinks low B12 is involved in my neuropathy in my legs but not low Vit D. Thankfully I can tolerate B12 shots. I was terrified when i had to start shots but i knew i had to and i find that i can tolerate medications and supplements thru IV and shots much better than ingesting them. To be sensitive to these 2 vitamins is not that uncommon for people injured by withdrawal. Ive been having B12 shots for 18 months now and im convinced at this point my neuropathy is more TMS than B12 deficiency.

Before my 2 setbacks i had successfully reinstated about 120iu of D a day with the baby drops. I am hoping the new relaxation in my nervous system im getting with meditation will let me be able to try again soon.

Thank you so much for sharing your story Bloodmoon. It does help to know im not alone in this and gives me hope that i can get there with my Vit D too.

I will check out Tamaras book. Another poster recommended it too.

 

It certainly sounds like it. What with you being able to tolerate the B12 shots, it seems to point to mind/body/TMS.

I've never had any medications or supplements via IV, but that really doesn't surprise me. I mean, for instance, it's weird that in my case, I can't take a normal dose of vit D, but I can eat mackerel and other foods containing vit D, which helped me realise that it's all down to my lizard brain. With regard to other supplements, I went on a diet to lose weight and thought I'd take a multi-vitamin and mineral supplement to make sure that I was getting all the nutrients my body needs, and really didn't think anything of it or anticipate any problems because it didn't contain vit D, but I had to stop taking it because I became so stiff around my haunches and in my lower back and thighs that I could hardly walk and getting up from sitting to standing was extremely painful too. After I came off it, I went back to what is normal for me these days - not pain free but able to walk, weight-bear and get up and down from a chair or couch just fine.

Practising meditation sounds really promising for you. You've inspired me to start meditating again!