Not yet had a full diagnosis of FND, but my GP has suggested it, along with a general medicine Dr and after literally ruling everything from autoimmune diseases to HIV out, it's looking like that that's the one, so-to-speak.
My question today is: ever had days, or even moments during a day where you just don't 'feel right'. You can't quite put your finger on it, but you just get a sense that something feels off?
I woke up this morning, actually felt nowhere near as bad as I had for a few days. I'm off work on sickness at the moment, have been for about 3.5 weeks. So I called my mum, had a long talk about various things with her, sent a few messages to my wife at work, did a few 'chores' around the house and ate breakfast. Then I was standing at the sink in the kitchen and just got a sense of not feeling right. Weird. Happens some times.
Of course, it could be part of the wonderful 'side' of mental health issues that come along with this. I'm not an overly stressed or anxious person, unless my symptoms are really hitting low levels.
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DaveT81
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Sadly this is the new norm. I have learnt when I get a “wave” of a funny feeling to stop and rest. I have the feeling of being hungover a lot of the time ( I can hardly drink now 😞 very cheap 😉) sometimes the feelings for me are a reminder to slow down and others are when a relapse is coming. Last week was my worst bad feeling as I then lost a lot of movement and felt like crap... The one thing I will suggest is a diary if possible. Record these moments and if anything further happened. This way you can let doctors/ specialists know and help them understand your body. It is finding triggers eg for me that day we worked out that I had a meeting with people and my son who was supposed to go for his license had dramas as his logbook not checked so couldn’t take test. Thought I was ok but the stress was my trigger... As most of the time nothing shows up on tests, for many of us this can be our only indicator if like me the memory goes a bit.
I hope you get the answers you need and if you get a chance look up pacing... sorry for rambling.
You say your doctor has ordered all the autoimmune tests, but has he ordered the autoimmune panel for antibodies that cause autoimmune encephalitis or dysauntomia? Have your thyroid antibodies been tested?
Don’t let any doctor tell you you have FND without the right tests and then get another opinion from a doctor that does not know you were diagnosed with FND. That seems to be the new diagnosis that you’ll get when they can’t figure out what’s wrong with you!
Hi, had auto-antibody screen, thyroid panel (full screen) and was actually treated with thyroid meds for 3 months to no effect because my levels were (although in range), low enough that we agreed it would be worth trying out.
Same doctor also put me on testosterone injections because the thyroid meds affected my testosterone levels. I must be the only man in history who literally had no response to high levels of testosterone haha.
When I say I've been investigated for everything that this could possibly be, I mean it. I've paid for blood tests, CT, MRI, spirometry, chest x-rays, heart echo, HIV, celiac tests, allergen-tests, you name it. Nothing.
At this point, the only thing that makes sense is FND, to be honest. I'd love it to be something else, but all indications are that I have some sort of unexplainable neurological problem.
You sound like what my son has been through. He also went on testosterone and it didn’t help him at all. His thyroid panel was always “normal” but he has always had multi nodules. Today he is having his thyroid removed because one of the nodules testes possibly cancer. I’m hopeful that will clear a lot of other problems.
The Endocrinologist at Mayo told us that when your testosterone is low, and you also have low or low normal LH and FSH, that means that the low testosterone is secondary, meaning it is being caused by another problem and not directly a testosterone problem.
On the antibodies test, you can still have different problems like autoimmune encephalitis or dysauntomia without antibodies. Pots is also something where people complain of not feeling just right. That comes under the dysauntomia umbrella. Hope something here helps.
Hi Dave 👍🏼 it sounds a bit like dissasociation. It's very unpleasant. It happened to me at work but i think it was due to freaking out about all the symptoms i was happening at the time.
Try some distraction techniques to help maybe, wiggle toes and feel them move inside your shoe and everything about how weird it is that you're actually doing that and laugh. That helped me when i was dealing with anxiety, give it a try.
You might also need to learn limits now, it could be your trigger of FND that your doing too much. I know it sounds stupid when you consider the little amount done but that's the frustrating side of FND.
Hope you get a diagnosis soon, it will help you to have that and you know what you're working with.
Thanks, Lee. It's weird, because I'll often get a funny/strange sensation preceding this sense of just not 'feeling right'.
You're right though, I just need to get a diagnosis first. I think if I could get that starting point, then I could go on from there. After going back to work for 2 months (after being off for 4), I crashed badly about 3 weeks after going back full-time. I've since been off for another month. Some days I can walk 10-15 thousand steps, other days - like today - I can barely find the energy to go outside at all. Hopefully a diagnosis comes soon!
Hi Dave 👋, definitely a solid diagnosis would help you, so you have some concrete information to work with. Any news on that front?
Yeah, i hear a few people taking about the warning signs, like weird sensations, tinglings or twitching before an episode. That's the early warning system for neurological conditions. The body and mind can be nice at times but it's certainly the signal to slow down.
Sometimes it's not and option but maybe part time is all you can do for now. Check with your work and explain to them the situation, they should be accommodating, at least i hope so.
I had an appointment with a private neurologist at Spire in Liverpool last week.
He did his own examinations and looked over my rather extensive notes. He said his diagnosis/advice to my GP was that I had 'unexplainable symptoms'. Apparently it isnt that rare..
I don't really know what to do from here other than I'm seeing my GP this week to discuss how to tackle my symptoms each individually!
Sounds like their advice isn't taking you out of the dark at all. Keep pressuring them and ask for your health records. It isn't fair to do that to anyone and you need concrete answers to move forward in life with the right information.
Have you saw a movement specialist yet? If not, that is your next step. That is the one who diagnosed me with 5mins. 5mins in what no one else could see in 4years. It's crazy.
Sweetie it sounds like FND to me, of course I’m no doctor but my doctors don’t know anything either lol. I’ve done all those tests and the lumbar puncture and there’s no explanation found. Yes I get that weird feeling everyday ☹️ We are just not ourselves anymore. Something has gone wrong in our brain and most of us feel it everyday. My body feels off as if my limbs have been transplanted and it’s not really mine. It’s like we’ve been disconnected from our body at times and the severity and durations is different everyday, it’s unpredictable. I go along about my day cause that’s what you have to do but I can’t believe this is how I function now, constantly glitching. But you can still have good days as long as you listen to your body and know when to slow down. Today was a beautiful sunny day in Brooklyn NY, I went to the park with my kids, they went on some inflatable rides, we ate popcorn and cotton candy, took a slow walk by the water promenade and sat on the bench eating ice cream cones, went to pick up some essential oils for natural healing remedies, then picked up some food and had a picnic at the park, took off my socks and shoes and grounded or earthed bare on the grass since I read it suppose to restore our balance 😀 And I still felt off at some moments but I had my family and other pleasant distractions. I am thankful my symptoms weren’t bad that I was able to enjoy the day because there are days that even distractions can’t help you. But today was a really good day 😁
Yes I too have days when something just doesn't feel right. A usually I know this is not going to be a good day. Remember this is s physical issue and not a mental disorder, so listen to your body Regaining control hit it right.
Hi Dave, I know what you are describing.. I have several medical conditions including cardiac, chronic pain, digestive & diseased organs so I have a lot going on never mind FND ...but at times I get this feeling of just being Ill, sick all over but could not say it is my heart or spine etc... Despite a 40 year illness & no break in pain ever I too do not have anxiety (except when it comes to paying the medical bills) but that overall sick strange feeling is nearly worse. I try to move through it but it kind of sticks for a while. It is nearly harder than other things... So I completely get what you are describing. I wish I had an answer for you but the best I can do is say you're not alone in this.....stay strong, sounds like you already are! Carol
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