update on recovery progress and therapies

[Zozo87]

I thought I should share some hopeful news. It’s been a year since my last post.

I am 2.5 yrs post onset & diagnosis.

Functional movement, fatigue, brain fog my main symptoms and issues.

To be clear I am not fully recovered just experiencing better quality of life and feel more in control.

I have abstained from alcohol as advised.

I have a Physiotherapist who does joint releases and provides safe simple exercises. Meet monthly. The exercises are challenging enough and focus on correcting where I still struggle (like stairs and walking on uneven ground and regaining core strength and balance) I got an exercise bike for home and I ride gently for 3-7mins a few times a week. I stretch gently Daily.

The biggest impact has been obtaining an Occupational Therapist.

Mine is based in Sydney AUS (Im in Brisbane so we do online appointments) Beyond Pain is the company.

She assessed my abilities, we did about 5 educational sessions and then I started a pacing program increasing the amount of time I can do something by 5-10mins every 4 weeks.

I am managing much better, I am not going to bed each night in pain.

2wks ago I walked my dog by myself around the block (700m 9mins) this is a real win as hes Medium sized and strong and its taken 2.5yrs to get to this Im very happy and so is he.

I joined a gym and use the pool rehab lane for hydrotherapy (walking and other movements) and their sauna. I do this 1-2 x a week.

With the OT In the pacing program I am doing what I want but just for short periods: read my book 10mins then a break, fold washing 5mins then a break, walk 15mins then have a sit down.

Its not been easy, and I need guidance on how to progress and manage this going forward but I am so hopeful.

back when I was in bed all day, light and sound hurt and weakness was constant I was suffering so badly, looking back I can see my brain needed so much rest, I just needed the basics of safety, sleep, hydration, nutrition and love and care.

This phase is different I am not at mercy so much to my symptoms.

other additions have been:

CoQ10 daily supplement - I believe this helps reduce fatigue

Magnesium and Vit D

Implementing many aids to alleviate any discomfort or strain: weighted blanket, wearing prescription glasses (only .75 but worth it), heatpacks, ear plugs, massage gun

Next items to implement and try:

Tinted glasses specifically yellow and pink lenses for help with dizzy, perception issues and light sensitivity.

Tens machine to see if muscles respond well.

Looking back I can see now HOW individual recovery and therapy needs to be. FND effects many of us differently and I have needed a host of specialists and therapies and ideas just to get to here.

The Ebbs and Flows of FND are treacherous. Much of it invisible to those around us.

Slowly slowly I am getting better… at this rate maybe another 2years. I am hopeful and I have hope for you all.

[Lady4]

I am really happy for you, thank you for sharing.

Sometimes we realise we have been doing too much and we need to slow it down and possibly poor interoception is why sometimes the brain just takes control and makes is slow down.

My son still sits there with two or three devices when not experiencing current vision symptoms/headaches, I try and take them away (as currently has my laptop as his is broken). I read that flipping from one thing to another affects the dorsal region of our brain but to try and convince a teenager is nigh on impossible (and a super smart one at that).

Hopefully your OT is following re-active as they have some fun rehabilitation techniques. Its good that she has introduced some sensory elements to help, esp weighted blanket useful for grounding (dizziness). I also found in the UK (think it was York) a company did light therapy for light sensitivity, not sure if you have anything like that in Brisbane.

[Poseypink]

Thank you so very much for this update! And so thrilled for you and your progress.

It is so helpful to know that slow and steady can win this race as long as we don’t give up, have patience and seek out what help we can. You’ve also given me some tips to incorporate!

Wishing you continued improvement!

[tabey]

that’s is great to hear

[Shimmyaway]

Thanks for your message of hope Zozo. I have been looking into the company 'Beyond Pain' and to my surprise we have a clinic of that name in the UK, in Bristol, No idea if they are related, or if the inspiration came from the book mentioned below. A lot of what the Bristol clinic offers in terms of practical ex, is on Instagram, which I shall be trying out. If I were able, I would visit this practitioner, who seems to have a lot of flexible tools in his box...but maybe only for the fitter ones amongst us. Thank you for the lead, and all the best for the rest of your tedious journey...remember the tortoise who won the race? That will be YOU.

Beyond Pain: Conquer your pain, reclaim your life : Ratnachandra, Anjelo:

[Zozo87 in reply to Shimmyaway]

Yes Angelo is the founder and director

[Shimmyaway]

That's interesting to know. So it looks as if the UK Bristol clinic is not linked as the practitioner there (an acupuncturist) draws inspiration from a book by Alan Gordon and Alan Ziv, called The Way Out. Nevertheless this practitioner seems to think outside the box , and may be able to help UK FND patients. esp those who are suffering from pain. All his reviews are 5 star. I am sure I am not the only person on this forum who has been rejected by private bodywork practitioners when they hear the words 'FND.'