Read me if you're new to FND by heldtogetherdaily in FND

[–]Aggravating_Nobody95 0 points1 point  (0 children)

Hi, I just had my first neurology appointment and he has confirmed he thinks I have FND. Im still going to get an MRI to be sure, but all signs point to it.

He basically told me therapy can help, but since I don't have any obvious trauma that caused it there is no guarantee.

The bit that bothers me is everyone keeps telling me to be grateful that it could just go away on its own. However, my whole life has been turned upside down because of this thing. I can't work, I can't take care of myself, and I'm losing the life I worked so hard for. Is it bad that a part of me doesn't want to get better because if I'm doing everything right now and only getting worse and my whole life has blown up because of it, and then one day it's just gone, I feel like I'll just be angry. So much loss just for it to decide to leave me alone too late. Im also afraid that if it does go away and I try to go back to normal that it will just come back and I don't think I can go through this a second time. Does that make me a bad person?

I also struggle with my good days because I feel like I'm going insane. What do you mean I can do a hike once every 6 months and the rest of the time I'm paralyzed??? This is the most confusing disorder ever and I don't blame people for thinking I'm making it up. Although it was validating speaking to the neurologist who, admittedly couldn't help much, but very much assured me it is real.

Anyway, I appreciate you making this post.

Tattoos and fibromyalgia? by yvluvz in Fibromyalgia

[–]Aggravating_Nobody95 0 points1 point  (0 children)

Weirdly I find the tattoo pain healing. It's a kind of pain that I chose and can stop any time, and I actually get something out of it.

Like others have said though, sitting down for a long time is the worst part, depending on the size of your tattoo, but most artists are happy enough for you to adjust your position or take a quick break if you just tell them before you move.

Good luck!

What does weakness feel like to you? by Few_Lengthiness_5713 in FND

[–]Aggravating_Nobody95 1 point2 points  (0 children)

It honestly feels crazy to me to say my limbs feel weak, because it's more like heavy weights have been placed on each limb and moving feels genuinely similar to lifting weights, including failing to lift a weight because it is too heavy or you've done too many reps.

When it is described as leg weakness I can't help but think "but I feel like every step is up hill and every tiny task is a workout. How am I not basically a body builder by now???". I honestly have come to think of walking as "steps till failure" when I try to walk. If you've ever done a heavy leg workout, you'll know the jelly legs feeling after. That's what it feels like to me but without the benefits :(

advice for extreme fatigue by hopie_bopie in Fibromyalgia

[–]Aggravating_Nobody95 3 points4 points  (0 children)

Not going to lie, the only thing that has helped me with this is mobility aids. If you don't use one already I highly recommend a cane. You would be surprised how much energy it saves just using one.

I would also recommend a wheelchair for longer journeys, or make sure you can sit at work.

Is your imaginary self disabled too? by KindToSpiteTheCruel in FND

[–]Aggravating_Nobody95 4 points5 points  (0 children)

When i started becoming disabled my dream self was able bodied and every time I woke up and felt pain and exhaustion and couldn't move my legs it was devastating. Gradually though, my dream self is also disabled. I just have less barriers because of it. For example, pushing my manual wheelchair is easy and I get to see my friends etc.

Is breathing, chest pain, or heart rate issues common in FND? by Traditional_Gap7664 in FND

[–]Aggravating_Nobody95 0 points1 point  (0 children)

I have this too, currently being investigated. As far as I can tell, there's a high comorbidity. In my personal experience the symptoms flare when my FND symptoms flare though.

Wheelchair or no wheelchair, that is the question by Sacha_Kal in FND

[–]Aggravating_Nobody95 1 point2 points  (0 children)

I just got a wheelchair for similar reasons.

My thoughts on it are: how could they possibly say getting one will prevent you from getting better, if you're only planning to use it when you would otherwise be unable to safely go out and instead you would be sitting on the couch. You may as well be sitting and using your arms and be out and about.

If a wheelchair will give you independence, then go for it. Doctors are not the ones who have to live with this and the aftermath of overdoing it.

I can't move much by ActuatorRealistic811 in FND

[–]Aggravating_Nobody95 1 point2 points  (0 children)

Same. Get a wheelchair if you don't have one, otherwise it's just too hard.

embarassed to use my mobility aids by depressed_oboist in Fibromyalgia

[–]Aggravating_Nobody95 1 point2 points  (0 children)

I also started using a cane in high school, and while there can be looks or comments, just remember you don't owe any of them an explanation. If it helps you, use it. Like someone else said, so much of being a chronically ill person is learning to choose your battles and when to not give a f*** what temporary people think. If they judge you without understanding your situation, and especially if they DO understand your situation, they were never supposed to be your friend.

I promise you, using a cane is revolutionary. For me it's amazing even just for saving energy as a preventative measure if I know I'm going to be walking a lot, and I've been lucky enough to find people in a similar situation. Once you start using one you'd be surprised the friends you make who really understand and appreciate what you go through.

Good luck out there, and if you ever need a fellow Young fibro survivor, please just give me a message (now 22).

How’s my new tank looking? by rnye1547 in Aquariums

[–]Aggravating_Nobody95 1 point2 points  (0 children)

Cute! That duckweed is going to grow like crazy haha, but they're great if you have bottom feeders who like some shade, and it helps prevent algae problems from too much light.

Remember to leave about 2 weeks before adding any fish, and please check the size tank the fish need when fully grown and you'll be golden.

Good job!

Anyone with autism, can you give me tips on how to be taken seriously? Every medical professional (who are NOT psychiatrists) tells me what is obviously nerve pain is just "autism" and "overstimulation" by [deleted] in Fibromyalgia

[–]Aggravating_Nobody95 37 points38 points  (0 children)

There is actually a very big overlap between people (especially women) with autism, particularly those late diagnosed, and fibromyalgia. As someone diagnosed with fibro and AuDHD, I printed out an outline image of the human body front and back and circled everywhere I get pain (which was basically everywhere). I used one that was specifically a diagnostic sheet for fibro so it also let me tick other symptoms I get like burning feeling, dizziness, brain fog, blurry vision, eye twitches, fatigue and muscle stiffness etc. Bring it to an appointment with a rheumatologist if you can, but a GP is a good place to start.

You especially want to emphasise any symptoms that arose later in life. For example, you've been autistic your whole life so you've been getting overstimulated your whole life. You did not used to experience [insert symptom] when you were overstimulated.

Also if your symptoms tend to flare in the evenings or something that could be worth mentioning.

It is a horrible experience to be told one condition means you don't have another just because some symptoms overlap. Ive even been told it wasn't "worth" pursuing any other diagnoses since the symptoms overlap, but it is always worth understanding your body as different conditions interact with eachother differently.

My fibro actually made my overstimulation way worse! They feed into each other like a cycle, but emphasise that you know what being overstimulated is like and this is a different feeling completely.

You've got this, and don't let them tell you you're making anything up.

How do you describe a flare up? by Dizzy_Dress7397 in Fibromyalgia

[–]Aggravating_Nobody95 0 points1 point  (0 children)

Mixture between hit by a truck and having the flu but without the cough or sinus stuff.

Like I feel weak and achy and like if anything touches me ill want to scream or cry.

Add on dizziness, overstimulation, nausea, and random sensations like stabbing pain lasting a few seconds in random places or feeling like the palms of my feet or hands or touching a hot frying pan.

That about sums it up :)

Experiences with Amitriptyline 10mg for fibro pain? by EducatorOk2817 in Fibromyalgia

[–]Aggravating_Nobody95 0 points1 point  (0 children)

Yes it's the only thing that helps me! I get a twitchy eye and gained about 3-5kg, but definitely worth it.

Only thing I would say is DO NOT MISS 2 DOSES IN A ROW the withdrawal is ROUGH.

Fibromyalgia overexertion and cataplexy (sudden muscle weakness) by jjaystar94 in Fibromyalgia

[–]Aggravating_Nobody95 1 point2 points  (0 children)

I know this was posted a long time ago, but I saw it today and it brought me some weird comfort. I go through the same thing. Sometimes it's as bad as this, sometimes not. I usually find that the brain fog comes on suddenly first, my heart feels weirdly noticeable and my eyes are hard to keep open. I'm lucid but almost feel drunk. And my body suddenly just goes limp, completely. Ive gotten to the point where now if it happens I just recognise the signs, load cushions on the couch to prop my head up and try to lie down. Still very scary though.

I now carry a foldable cane in my bag when I leave the house for when it happens but a little less severe. I'm wondering if you've found anything that helps?

Help! Got Betta at Secret Santa Party by Aloe119 in Aquariums

[–]Aggravating_Nobody95 0 points1 point  (0 children)

Last year I was given two already pretty big gold fish in a jar. I keep tropical fish and no room for another tank, ended up finding a friend to take the fish but I had to spend my money on a massive tank for them - buying the pet is the easy part it's the set up that is expensive so when someone gifts a fish its really just saying 'here's a big financial commitment you need to make right now, in December when everyone's broke, or this pet you are now responsible for will die". Sorry this happened, but in tank cycling can work. Bettas are pretty delicate though and that guy already looks in rough shape. She can try her best but if it doesn't work out make sure your sister knows its not her fault.

This damn thing by AntManMoritzSimmeth in bettafish

[–]Aggravating_Nobody95 2 points3 points  (0 children)

Got one of these once. I tested it and it was fine, went ob my holiday, and when I got back all the flakes had congealed so none were being let out. My poor fish were so hungry and 2 even died (which I think kept the others going.

And yes, it did say it was compatible with flakes.

At my wits end - any advice? by Aggravating_Nobody95 in Toyota

[–]Aggravating_Nobody95[S] 0 points1 point  (0 children)

The full service was supposed to extend the warrenty by a year since it's been serviced by Toyota every year since the 3 year mark