Years Long Battle

[SSV11]

Hi all, So I've had health problems for a long time, mostly without diagnoses. Like my life long Reactive Hypoglycemia that wasn't diagnosed till I was 29. So I haven't had a lot of hope in the US's healthcare system but now facing an FND diagnosis, it's even more precarious to me.

I've had migraines with aura (snow vision, face drooping, limb weakness, numbness, and tingling) on and off since 2013. My memory has been getting worse since then (I'm only 32). Word retrieval/mix up started a few years ago. In 2020 I started having these episodes where I got so dizzy I couldn't comprehend my surroundings or move from wherever i fell to with random confusion or inability to respond accompanying it at times.

In 2021 I started having seizures. When I was told they were "in my head," aka: psychogenic, I refused the diagnosis and chalked it up to the doctors being unwilling to admit that they didnt know what was going on. The seizures continue to this day.

Then in 2023, just about a month ago. I started having days long episodes where I tick, have myoclonic jerks, muscle spasms, and full body shaking. These episodes seem to be even more overwhelming than the seizures.

When I went to the ER for these days long episodes, a doctor gave me the golden words, "Functional Neurological Disorder." Which led me to FND Hope which led me to finally start accepting the potential of PNES and FND after a decade of ER visits, doctors telling me there's nothing they can do, and losing 3 jobs over this health stuff.

Unfortunately my neuro believes in the stigmatization of this disorder and I can't change care providers. So I'm here asking:

1. What self care helps you with your symptoms?

2. What psychical therapy do you recommend?

3. What other advice do you have for someone who has FND that's gotten this out of hand?

Thanks in advance everyone!

[Jofisher]

You might want to check out this American website fmaware.org I have fibromyalgia FND and chronic migraines

[SSV11 in reply to Jofisher]

Ok. Thank you!

[thestorm]

Hi ssv, I feel your frustration, and live in the US also. I am 62 years old, and have had to fight for diagnosis on my many conditions for years. Still to this day, I am passed on from doctor to doctor. I have personally found being on these forums , with all these lovely people, and reading there stories, have given me so much support, love and information. There journeys and conditions, are a wealth of help. I have personally taken notes from others and gone to my doctors. Showing doctors that I am not the only one with such symptoms, and affirming with the health unlocked vast library of medical documentation , that I have presented to my doctors. Helped open there eyes . Doctors are always learning too. As for coping , being here helps very much, self care, of any kind is a benefit, showers baths with essential oils, heat pads, comfortable clothing. Soaking feet baths. Foods you like and some you don't,lol..... Physical therapy, calm is a great app. Working your body gently, lifting light weights with hands, leg lifts while sitting, stretching side to side. There is much more information here at the site. I recommend you search here.st health unlocked .Everything from symptoms and relief, to crafting and cooking. It is here. Lastly, if you can. I ultimately recommend getting a pet. Sooo many sweet people here have found there true self, unconditional love, and purpose through having a pet. If you check out my profile, you can see my Storm. He is my love, my ultimate life line...... I wish you all my best in your journey, I hope this helps ,I send all my love and blessings, The Stormy Sunshine 🌻

[SSV11 in reply to thestorm]

This is a wonderful response. Thank you so much and much love to your doggo Storm 💕

[Jellofabulous]

I’m so sorry you’re having to navigate all of this! The best resources I’ve come across are: FND courage (online skills class for people with fnd). It changed my life. I also am a big fan of Re+active pt. They have a lot of info/videos about fnd and the importance of neuro pt. Doing weekly neuro physical therapy has been the biggest game changer. My symptoms come and go still but I can navigate the ups and downs much easier. Those two resources have helped me more than any neurologist or ER. Hang in there!

[SSV11 in reply to Jellofabulous]

This is exactly the kind of advice I was looking for. Thank you 💕

[Lady4]

I don't know about all the conditions you are experiencing but have been on the Regional Chronic Pain Syndrome and FND journey with my son for nearly 18 months. I have posted a few posts that I hope helped others of his journey so far and this Community is my source of advice and comfort, thanks guys.The best advice is deal with one symptom at a time and don't get too disheartened if something doesn't work or doesn't work every time. There is a wealth of information out there but remember to read links from reputable sites like this one. I started learning with our UK one, neurosymptoms.org and happened to come across this one by researching travel insurance.

Most importantly though stay calm, practice self-love, mediation and mindfulness and brain retraining may help too and try not to stress too much, although easier said than done.

Hugs xx

[SSV11 in reply to Lady4]

Hi there! This is helpful and I appreciate you sharing your path in this precarious land of diagnosis.

Thank you 🙏

[Beexo]

I’m so sorry to hear your struggling , my fnd hasn’t gotten out of hand before and I’ve came to learn that my triggers are when I’m in a state emotionally and my brain can’t handle it so it shuts me down and I start ‘ seizing ‘ ticking , numbness in my legs or sometimes hand tremors etc etc and what helps me the most is gym I think gym is the best physical therapy ever and it helps release endorphins and What neurologist mostly recommend is therapy / counselling , idk how that would work in The US if they offer free therapy but if they do that would be great to refer yourself too