newly diagnosed

[Zomo101]

I was diagnosed with FND a month ago. My story is a bit of a tough one. I got tinnitus from covid infection Nov 22 then woke up with crazy internal tremors and a hot sweat in March 23. It was very scary and no idea what was going on. Over three months my tremors developed in my eyelids when closed, my tongue and jaw. I also seem to constantly feel tremors or shakiness through out my body. All these tremors and tinnitus is constant. I do not get a break at all. I’ve had extensive blood tests, mri, I’ve seen two neurologists, endocrinologists and ent specialist. The 2nd neurologist said I had a positive Hoover sign. I’m now seeing a neuropsychologist and neurophysio. These symptoms I have just seem a bit odd and haven’t really come across anyone else with FND that has these. My mood had been severely affected and now take an anti anxiety medication. I’m 34 years old with a 1.5 year son. The last 6 months have just been absolutely devastating for me. I’m lucky I have good family support and I am in a better place than I was a few months ago but I’m just hoping a I get a bit of reprieve from the tremors. I’m just hoping to find someone that can relate

[Lady4]

I haven't but only been on the FND journey nearly 18 mths with my son. Have you checked out the Hope forums or groups. Can't say I have seen it on the neurosymptoms.org website but always post new articles and links and I am not up-to-date.Its good you have a supportive family to help you with your young child, be kind to yourself and breathe, try relaxation therapies when things ease up a little.

I think keeping your stress levels under control is easier said then done but I watched a video on the Migrane Summit 2023 website and read abit about neuropathways and some being stronger than others at times of stress (flight or fight), so the idea is to re-enforce the others.

[Lady4 in reply to Lady4]

Also thinking of the sensations in non charged language, ie instead on levels of pain, talk about the sensations instead, eg a fluttering or tingling sensation.

[Shimmyaway]

Have you tried myofascial release ? ..... not available on NHS. I have internal tremors, shaking and rib jerking from FND, though not constant. The fascia ( all over body connective tissue) is connected to the nervous system and a good therapist can loosen it. It has helped, but not cured the tremoring. A book called 'fascial fitness' (Schleip) is useful reading on fascia ..the book is not fnd focused but gives you self help exercises to loosen the fascia. Worth a try.

[Corgi_Gal]

Tinnitus, extreme anxiety and internal tremors/vibrations are all very common in long covid. Not sure what Hoovers sign has to do with your symptoms. This does not sound like FND. It's long covid. You'll find thousands of people with your same story on the Reddit long covid sub. You might find better support there.

Unfortunately, doctors have no idea how to treat long covid. For most of us, rest, self care and quite simply, time, are the best medicines.

After my covid infection I had a whole slew of weird symptoms for nearly 18 months including tinnitus, internal shaking, brain fog, speech difficulties, heart arrhythmias, extreme fatigue, phantom smells and more. I had every available test with zero answers.

So I just learned to ignore the symptoms as best I can and get on with my life. Eventually most of the symptoms faded with time.

Five months ago I developed severe neurological symptoms and when doctors couldn't find anything they tried to tell me it was FND. I couldn't accept this garbage diagnosis. I had a suspicion this was a genetic issue so I got DNA testing. Turns out I have Charcot-Marie-Tooth type 2A. There's currently no treatment but at least I know what I'm dealing with. I 100% believe covid kicked off my genetic mutation even though doctors won't acknowledge such a thing exists.

I'm sorry you're dealing with such horrible symptoms. I truly hope they fade with time like mine did.

[Zomo101 in reply to Corgi_Gal]

Thanks for your response. I for a long time thought this was long covid too. Ive been on all the forums and Facebook groups but it got to consuming and I was losing the little normality I had left. I’ve always been a fit well person and now I’m constantly suffering with this awful stuff. I agree with you in the sense that the tremors in my jaw tongue and eyelids don’t seem to fit the FND symptoms. My body also has lost the ability to self regulate temperature wise so in the middle of the night I will wake two or three times with this crazy tremor over my chest and arms and be a full hot sweat. It’s winter here at the moment and I’m ripping the blankets off. Tbh regardless if it’s FND or long covid they can’t seem to do much for me. The only good thing that’s come out of the FND diagnosis is that I’m getting free sessions with a psychologist. Did your tinnitus go?

[Corgi_Gal]

Temp dysregulation could be autonomic dysfunction which is incredibly common post covid.

Autonomic dysfunction affected my heart and gave me horrible palpitations, arrythmias and chest pain. I'm still on two heart meds just to manage.

My tinnitus thankfully comes and goes now. My husband, however, got it after covid too and his hasn't let up two years later. He's just had to learn to live with it. 😞

Therapy can be incredibly helpful. I hope it at least helps you cope.

[Zomo101]

I agree all this shit started happening after my mild covid infection. Day 2 I got bloody tinnitus and I did have some other viral infection just prior to waking up with all this crazy tremor stuff. Long covid seems to be the culprit but FND is giving me more options. There’s no medications that can help me and I don’t want to take stuff that’s not going to be useful. The neurologists just gave me nerve pain stuff which I don’t have. From March to June I was an absolute mess my anxiety was through the Roof and all I thought about was trying to find a cure nothing else mattered. I was a victim to so many so called treatments and I was awful to be around. I can see now that I was just terrified and grieving the old me and was angry that people just carried on with their Normal lives and were not even affected by covid. I’m still hurting and scared. I don’t have that same go attitude and stay home a lot more. I’m bonding a lot more with my son now though and hanging out with friends. Like you said it’s a waiting game and I’m just hopeful that some of these things will ease. Covids taken so much away from me as a person, mum, partner and friend I don’t want it to destroy the little I have left.

[Goodliving]

Hello,

So sorry sounds like a truly daunting task to get through your days, especially with a little one.

There are a lot of unanswered questions with Covid and other viruses that we are now encountering.

Based on my experience and understanding, much of the challenges we face keeping the body healthy has to do with inflammation. So that you can have some control over that. The less inflammation you have in your body the more able your body is able to heal itself. Maybe do what every you can to keep the inflammation down. Gives your body a better chance to fight and recover from whatever it is. Cryogenic treatment maybe (ice bath or cold showers). The more blood flow in your body everywhere, the better it can fight to get and stay healthy. Diet influences inflammation considerably.

Hope that is helpful. Just based on my experience and knowledge.

Cheers!

Pat

[bookish]

Just wondering how your symptoms are now. Are you vegetarian/vegan/meat avoiding and what was your vit B12 level when tested? Did you have nitrous oxide (gas and air) during the birth of your son, or for dental work etc and are you on any other medication/birth control as well as the recent anxiety meds. Did you take folic acid or a multi during pregnancy and do you take any other supplements routinely. Best wishes