How I’m Healing from FND: Hi friends! I... - Functional Neurol...

Functional Neurological Disorder - FND Hope
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How I’m Healing from FND

angelina22
angelina22
14 Replies

Hi friends! I really hope that you’re all managing okay & being gentle with yourselves.

It’s been a little while since I’ve been on here, but I wanted to report back and make a post detailing the progress I’ve made since January ‘19 in hopes that it may benefit some of you. Heck, even if one of you take something away from this, then mission accomplished.

So back in January I was at my worst and my symptoms were becoming so unbearable that, truthfully, I was feeling deeply suicidal. I was sobbing at every given moment, barely getting a wink of sleep, completely unable to eat without being in agony and generally felt that my life was over and my suffering would be eternal. Dramatic, yes, but it felt so real at the time. I felt that the person I once was, who I actually liked, was withering away.

In February, my symptoms do what they often like to do, which is ease up a little bit, allowing me to perform tasks such as washing myself with slightly more ease. I was by no means better, but I’d take whatever I could get. During this time I made the decision to start doing some extensive research. I’d given up on searching for FND specifically as we all know how little information there is on the web.

I came across a lot of different information, all beneficial. I’ve talked here before, briefly, about discovering Anthony William the Medical Medium. I purchased his book about healing from chronic and mystery illness. Read it in a single sitting and felt like a light had been switched on in my broken little brain.

I started following his protocol. I was already following a vegan diet for a couple years and vegetarian for over a decade, but quickly realised it was time to cut out anything processed. This includes (almost) anything that comes in a packet essentially, as well as oils, natural flavourings, citric acid, gluten, MSG and more. Basically, a fully plant based, whole foods diet. I also started drinking celery juice first thing in the morning on an empty stomach and have incorporated juicing and fasting into my life.

I also done some research into alkalinising my body. I’m having a huge intake of fruits which have had the biggest impact for me. Sometimes I’ll eat raw, but not permanently - just incorporating raw foods into my diet. A huge amount of leafy greens. Less fats, but I’m enjoying avocados as my main source of fat. I also stopped drinking tap and bottled water and got a water distiller. I’ve dramatically increased my water intake. I’m taking digestive enzymes daily and am looking into incorporating sea-moss and some other herbs and supplements too.

I’ve made some changes for my mental health too, after reading a lot about the mind-body connection. This is worth reading about. There’s also a documentary on Netflix called Heal, which doesn’t provide answers necessarily, but which had an impact on my feelings towards trying to get better. Some things I’ve incorporated for mental clarity:

- Daily journalling, not just writing down symptoms, which I felt was fuelling my focus on them in the end. I write down what I’m grateful for, affirmations for each day, what I’ve done in order to help myself, even if it’s something tiny like managing to wash myself.

- Practicing gratitude. Partially related to journalling, sure, but taking the time to think of what I’m thankful for in this life, even when I feel worthless, like I’m suffering, and undeserving of not being sick. It turns out, there’s always something to be grateful for. Family, friends, somebody on the internet who makes you feel less alone. Your pet, some music, a warm bath. The first bit of solid sleep you’ve managed in weeks, fresh water, food on your plate. The sun shining. Anything at all.

- Meditation. This is an important one. I kept convincing myself I couldn’t meditate because my symptoms were overwhelming, painful, uncomfortable and impossible to ignore. But I kept at it and realised I didn’t need to be free from any of those feelings in order to get the benefits of meditation. Meditation can start to help alleviate some chronic pain, as well as help to overcome your negative thought processes. I feel more connected to my body again, and less like I’m against it, or it’s against me. I’ve realised we’re a team and that my body doesn’t want to be sick and that’s it doing everything it can to function normally.

- Grounding. Trying to get outside even for a moment and just get some sunlight on you. Try being barefoot and feeling connected for just a moment. Keep trying it as much as you’re able to. Perhaps I sound like a tree hugger (I do like a good tree), but after doing some research, I’m solidly set on grounding being an integral part of healing and even just coping in our lives.

Folks, I cannot believe the changes. The progress I’ve made is undeniable. Don’t get me wrong, I’m not cured! Not by any means - but I’m on the road to healing, I can feel it. MM says it can take around 2 years to heal from neurological issues & to heal the nervous system. It’s only been a couple months, but here’s some of the progress I’ve made:

- My digestion has improved to the point that I can thoroughly enjoy food again.

- My bowel movements have normalised and flow easily and are regular. No more diarrhoea.

- No more bladder dysfunction.

- Less head and eye pain.

- No more earache or tinnitus.

- 95% of my tingling has stopped. I get it for about a minute every now and then, but it’s decreased dramatically.

- My heart has normalised. I am no longer taking medication to slow my heart rate as it is naturally functioning normally. Less palpitations, less chest pain. I still get some pain, but it’s so rare.

- My foot pain that was preventing me from being able to go out, walk normally/comfortably or take part in things I used to enjoy has become much more bearable. I can now walk with much ease and have enjoyed numerous nature walks ever since and feel like I can say YES! whenever somebody wants me to go out with them. The pain went from a 9/10 to a 3/10 - not perfect, but wow, I’m happy with that.

- No more nausea or appetite loss. No more vomiting.

- No more globus sensation, which was upsetting me a lot when I had it. It made swallowing water uncomfortable and I felt like I couldn’t breathe properly.

- Less breathlessness. Yesterday I done my first 15 minutes of actual, intentional gentle exercise. I’m going to slowly build up and get myself strong again.

- Less numbness. I can feel all my fingers, toes & legs. Sometimes I’ll get a little spot of numbness on a random part of my body, like on my head, but being able to actually feel my limbs again is heaven on Earth.

- No more stiffness. My jaw was especially stiff and painful and that’s gone now. Sometimes I get a little stiffness in my neck/shoulders, but it’s improving.

- I’m no longer struggling with heat intolerance or excessive sweating. My body odour doesn’t smell as bad anymore and my body stays cleaner for longer.

- Not entirely relevant, but my hair is healthier, shinier and has had a massive growth spurt which everybody has noticed.

- Less mouth and tongue sores.

- My hands and feet are no longer ice cold 24/7.

- My internal tremors have completely gone. I never shake anymore.

- Less heartburn/acid reflux.

- Feeling of pressure in my eyes has subsided.

- The painful bruised feeling I had over my body has gone.

- Less itching, but I still get some. It’s not driving me crazy anymore.

- No more burning sensations.

It’s been crazy. I’m so happy. The reality is that it’s going to be a bumpy road. My symptoms have not been entirely alleviated. I still get some redness specifically over my face/cheeks and on my right arm sometimes. A little bit of itching. I still get some unusual sensations on my scalp, for example, a little tingle that makes me scratch my head and then afterwards I can still feel where my fingers were, as if they’re still there on my scalp. I’m not getting headaches anymore, but I’ll get the odd sharp pain in my head, it’s just that it doesn’t bother me or actually have an effect on my daily life at this stage. I’ve lost 2 stone in weight, but INTENTIONALLY, not because my brain is malfunctioning. I want to lose some more weight and get myself down to a healthier one and start building some muscle. I have less weakness now and am prepared to make myself stronger, fitter and faster. These changes have allowed me to get to a stage in my life where that feels achievable.

Intermittent fasting has been a huge help. Many of my issues subsided through fasting. There’s so much more I need to share but this post is long enough. If anybody has any questions please feel free to ask.

By no means am I saying any of you will benefit the way I have, but I refuse to sit here and give in. When I read posts on here, hearing how you’re all suffering, I can’t bear it. I have many doctors and nurses within my family, but it’s clear that medical professionals do not have the answers yet. I will not wait around for them to figure it out.

I also want to say cannabis helps hugely for specific symptoms. CBD too. Those of you struggling with tremors & seizures, stomach pain, nausea & appetite loss - look into it. It won’t work for all of us, but it may work for some. It’s worth a shot.

Perhaps I’ll come back here and tell you things got bad again, or maybe I’ll come back and tell you I’m not sick anymore. We’ll see. But I’m so grateful that I’ve had this opportunity to feel like myself again. Even if it’s temporary, it’s been worth all the effort.

Much love, friends ❤️

EDIT: There is more information in the comments if any of you require it!

14 Replies
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AjaStar

Thank you for your post! It is inspiring and gives the rest of us hope. May I ask if the doctors prescribe you medication? And please what supplements have you taken? I’m on B12 iron and vitamin d. My mom wants me to try St. John’s wort but I don’t know. Oh and the hair is relevant because my hair is brittle and been thinning for years, what do u think helped with that, celery juice? Also reading about your experience makes me wonder if what we are experiencing is a severe form of allergy that affects our nervous system since you were itching before and because of a change in diet you are feeling better. Hmmmm makes me wonder.

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angelina22
angelina22
in reply to AjaStar

Hi sweet, thanks for your response! The doctors didn’t prescribe me any meds at all, I was completely left in the dark with my pain and left feeling like I was entirely on my own. They only said about seeing a clinical psychologist to “re-train” my brain & left me scared as the neurologist told me that “part of [my] brain has shut down” no MRI, nothing. So the information I’ve shared here may not be relevant to others, but I feel it’s important to share nonetheless, as you never know who may benefit.

Currently I’m taking digestive enzymes for my digestive issues that started up. I seem to be digesting food completely normally now. I’m using a b12 spray despite my b12 levels coming back normal, as more can’t hurt.

Since making the changes that I’ve listed in the post, I’ve managed to come off propranolol that I had been using for 7 years for palpitations, as well as my antidepressants (fluoxetine) which I was on 60mg for 7 years. I managed to come of all medications within a month after struggling to get off them for a long time. I don’t recommend anyone else coming off their meds so quickly, or without support - my mum’s a mental health nurse so I had a lot of support around me & help if needed. I just felt so many changes in my mind and body that made these things possible.

Some supplements/herbs I recommend looking into: seamoss (can be purchased from eBay), bladderwrack (should also be on eBay, just be sure to search for these things in their purest form, organic ideally), black seed oil, sea buckthorn... Keep taking vitamin d3, start magnesium, I-lysine, lemon balm, cats claw which is apparently great for alleviating neurological symptoms - I’ve heard many success stories but have yet to try for myself. If I remember any others, I’ll put them here. Spend some time researching foods that can help brain function. Walnuts are great - they even look like a brain. Start juicing celery. It doesn’t taste great, but it’s had dramatic results for me and many others. Look up Medical Medium - he has free podcasts, an entire page on his website about healing the neurological system. His books are on eBay/amazon, also in many libraries, but if you want them and can’t get them, let me know and I’ll buy them for you/send them to you. As I’ve said in the post I can’t promise anything, but it’s all worth trying ❤️

EDIT: Look into Dr Sebi too & research alkalinising the body.

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AjaStar
AjaStar
in reply to angelina22

You were taking antidepressants before your FND? Do you think it started it or did your FND start before? My doc prescribed cymbalta but my insurance denied it, I was scared to take it anyway. I’d rather not use meds since my brain should learn to function on its own. It does feel like part of your brain has shut down, it’s frightening. I get palpitations from time to time and PVCs which is an abnormal heart rhythm, went to cardio and of course heart looks normal, which is good so I guess FND affects the heart rhythm too. I can’t walk more than a block and physio helped with my dizziness some but it seems the more focused on my legs strength during therapy the harder it is for me to recover and after the last session I have felt worse for the past week. She had me doing leg step exercises I guess I’m gonna have to not do it anymore. There is no set standard of physio for FND as there is for stroke and MS because our disability is different even though the symptoms are similar. Do u know of any particular exercise that helped you with functional weakness?

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angelina22
angelina22
in reply to AjaStar

Not sure if my reply went through to you, but check for me as it’s showing on here, just not as a reply but rather a separate comment!

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angelina22

Not a clue - I brought it up to multiple doctors, asked if they felt the antidepressants could’ve played a part, as I was on a high dosage for a very long time, but all of them denied it, said they think it’s “very unlikely” but I’d be an idiot if I chose to trust their views any longer. I’m not sure I’ll ever know what has caused it, but I’ve realised I’ve spent far too much time trying to figure it out - now, all I’ll put my energy into is finding a way to get better. I have nothing against medications, don’t get me wrong, but I really am starting to feel that many medications cause more problems than anything else. Rarely does a medication actually CURE or HEAL us of something, but rather, cover it up temporarily. For example, my dad has a heart attack and has been told he needs heart meds for the rest of his life, but that they won’t prevent future heart attacks. So what’s the point? Why don’t we attempt to tackle the root cause - diet, exercise, lifestyle, toxicity in the modern world and stress instead? I suffered hugely from heart issues when my FND started and had multiple medical professionals telling me I was being dramatic, that it was just anxiety. I was distressed, not because of an anxiety issue, but because I felt like my body was shutting down. My heart was not functioning as it should. But these changes I’ve talked about have my heart back to normal. Normal rhythm again, only gets high when I move faster or try to exercise. Still a long way to go, but for such incredible changes in only a couple months, I truly feel the only way is up & that if I can go into some form of recovery, even if it’s only temporary, then many (if not all) of us can.

I didn’t do any exercise for functional weakness. I was bedridden for weeks and have only just started doing intentional exercises this week. I’m doing exercises to strengthen my body, just basic videos on YouTube, 15 minutes a day to start myself off with. Originally I could barely stand up, the room would spin like I was drunk, but now I can run up and down my stairs. For me, the changes started with drastic dietary changes. I was already on a vegan diet (no meat, dairy, eggs, honey or beeswax) but took it further by cutting out oils, sugar, soy (this includes meat alternatives), MSG, natural flavourings & citric acid. All this information is on the Medical Medium sources I’ve shared - the website, podcasts & books, as well as his instagram profile. I had no appetite, so started by forcing myself to drink lemon water first thing in the morning, then celery juice 30 minutes later. I done 1 week of juice fasting, there are many recipes online for alkaline juices. I would fill them with leafy greens, dates & started to thrive from the natural sugars. My bowel movements started to improve and normalise. Gradually over weeks I was able to eat normal meals again, but I’ve been strict about my intake, only eating vegetables, some legumes & fruits. I feel great and am still incorporating regular juice fasts. Do some research into the benefits of intermittent fasting too and mucus removal from the body. Start getting yourself onto a whole foods plant based diet with the help of medical mediums info, his recipes he shares (many online available for free, even videos on YouTube) and if that feels too much, start juicing. Start juicing either way. ESPECIALLY the celery juice. It is healing people from a multitude of ailments, from autoimmune diseases onwards. If you go onto MM’s Instagram he posts peoples direct success stories (that they’ve posted themselves) every single day without fail. If you are not yet able to do anything else, start with the juices. That’s what I did. And now I’m here. Put all the energy you have into consistent research. You may need to find what works for you. But I’m absolutely certain that there will be something. You need the dedication and willpower to make changes that may take much longer to show results. Many people don’t report results for months, even up a year. The neurological system and nervous system can take the longest time to heal, but it CAN heal.

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AjaStar
AjaStar
in reply to angelina22

My PVCs were also attributed to anxiety which I thought was bogus since sometimes I was just reading a book or watching TV not thinking anything negative at all. I did notice that walking a lot especially in hot weather would cause panic attack like symptoms like hand tremors weakness dizziness paleness feeling like you are going to faint and heart palpitations and I was having a good time before not upset about anything so was that FND attacks all along? Anyway I am always happy to read when someone is feeling better and glad you are on the mend and hopefully others will feel benefit with your experience and knowledge.

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angelina22
angelina22
in reply to AjaStar

It sounds like it! I started struggling with major heat intolerance. If I walked into a shop that was warmer than outside, I’d get dizzy and sick and struggle to continue walking, I just felt so weak. In the winter I remember going out in a t-shirt to stay cold so I could walk around somewhat normally without feeling like I was going to faint while everybody else was wrapped in hats, scarves, gloves and coats! It was horrible. But my temperature feels much more normal now, like it’s behaving normally/reacting normally to my environment. I still feel a little warmer in shops and initially it throws me a bit, but not to the point that I get unwell from it. I really hope you give a few things I’ve written about a go, as you never know what may help you and I personally can’t imagine the doctors coming up with a sudden amazing treatment just yet. Try to figure out if there’s any way you can help yourself. But if things don’t work, never blame yourself for getting sick and being sick... what we’re going through here is a very difficult thing. Here’s hoping we all find a way to heal ❤️

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AjaStar
AjaStar
in reply to angelina22

Definitely going to do the juicing and get some supplements. I don’t like it too hot either and in the cold I start twitching. I need the temperature just right.

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angelina22
angelina22
in reply to AjaStar

Great, take things slow too because it can be hard to make big changes. Wishing you all the best

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232426

Wow, you are on the exact same protocol as my daughter, after nearly 2 years of getting no-where with doctors. She’d love to get in touch with you.

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angelina22
angelina22
in reply to 232426

I would love to speak with her too! Really nice to hear she’s trying something different for herself too.

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Keepstrong

Hi Angelina.

I'm so very happy for you and wish you continued health abundance.

I will look into that guy as you suggested to see if he will be over here in Dublin Ireland at some stage.

I can't try the CBD oils as they kick off my migraine and lower my blood pressure and it's a struggle to keep my blood pressure is as it is

Thanks so much for your information and I wish you the very best. Keep strong. :)

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angelina22

Hi lovely! Thanks for your reply! I’m really sorry to hear the CBD doesn’t work for you, but I really hope you find something that does. I think a big part of this is recognising that even though we may all have the same diagnosis, we are still all individuals who will react and respond to various forms of treatment differently and we essentially have to try and figure out what works for us by ourselves, but also alongside support from each other. I’ll be making updates regarding anything else I find that I think may be helpful to any of us here in the future. If you’d ever like to talk, feel free to PM me. I have a few folks on here I need to email still and really strongly think that being here for one another is an integral part of us all making it through this. Lots of love friend, wishing you all the best on your healing journey.

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Keepstrong

Thanks so much. Your totally correct and I'm blessed to have found this site and to have met you. Thank you very much. I look forward to reading your updates. Blessings always to you and everyone here. :)

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