This FND is kicking my @$$: For the... - Functional Neurol...

Functional Neurological Disorder - FND Hope
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This FND is kicking my @$$

AjaStar
AjaStar

For the past few days I’ve felt like a robot running out of batteries. Slurring my speech, blurry and double vision, some dizziness and moving slow and when I exert any energy I feel a warmth and pressure on different parts of my body especially my head. I also noticed I’m a little swollen all over. And my therapist asks so what emotion was I feeling when this happened and I said I was fine until I started feeling bad. I get angry and depressed when my body starts to shut down. My emotions don’t affect how my body feels, it’s the other way around. The only thing was I was more active a few days ago. The more physical I am the more severe my symptoms but then sometimes I can just be laying down comfortably and have an episode. This unpredictability is so hard to adapt to, I don’t want to fight anymore, I’m so tired of this. ☹️

26 Replies
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I’ve also noticed the more physical and the more you fight it the worse it gets, I now try and take things gentle as much as I can .

AjaStar
AjaStar in reply to Renwick1

I am taking it easy this week and I’m f ing angry about it. It’s summer and I wanna go and drive or even walk on the promenade next to the water like I used to but I can’t and I am so MAD!!! And I get so resentful because my husband just said he’s going out with his friends while I stay home again watching stupid YouTube and Netflix cause that’s my life now. Sorry for my rant I just can’t put on a brave face anymore

HiddenThis reply has been deleted
AjaStar
AjaStar in reply to Hidden

I disassociate a lot as well and when I’m laying down my eyes don’t really focus on anything

Louyse
LouyseFND Hope UK

Hear you. This disorder sucks. I get several seizures per day. Sure I'll get more or more painful ones if I "push" myself (although I wouldn't say I was doing much) but they still come even if I rest. I have not been able to exercise (I run) since February and my fatigue levels have gone through the roof. So I'm confused about which way this "relationship" works. Hang in there - and that's not meant flippantly as I know it's a struggle. Me - dragging my dead arse to the running machine at the gym today.

Cheers

Lou

AjaStar
AjaStar in reply to Louyse

It’s not flippant coming from u cause u know how it is. But when I hear my husband, oh you know it’ll pass soon enough or just rest and you’ll feel better I wanna smack him.

Hidden
Hidden

Im right where you are. American, young (probably under 40) dont tell me, and angry and confused of is this really something psych like they tell me?

Well i'll tell you. Im on your side I watch you tube and netflix all day lol nothing wrong with that. I can't drive to the store because of my tics and jerks. I can't normally anymore and it's just so much struggle and sufffering just standing for lots of time. I have such an old house that the front stair railings are unsafe they just wobble side to side and one of em breaks off. On top the front path way is lifted so walking on a flat surface is a bust. The driveway is all broken up im basically driving off road (fun activity). My driveway isnt wide enough the pavement is at the wheels so when I get out of the vehicle i stand on an incline steep enough my stance and balance sucks. My walker or cane isn't helpful because of the steep grass. Oh what else. Oh yah I Sit in the shower because I cant stand on my own and I have fits even when I bath.

Lady lemme tell you im super frustrated with my life. I've seen your posts They seem you're looking for answers, I think everyone is. When I walk or do a lot of physical activity I have higher problems. Its not mental only its not the source. Try this, a test or experiment. Take two points go back and forth and count to 100 see how you feel in your head and body. Relaxed or stressed? Another is take your fingure (it still happens) and place it on your chin or nose. Look at something and not move your head. Move your fingure to that spot on your left side. Now try right side.

Doing that for me makes me wig out. I wake up and ive felt cramp and muscle twitches in my lip and calves, anywhere and everywhere. I don't feel happy and hope all the time. Today like you im frustrated and angry. I ask why me? I ask who can relate and not just give a stupid LIKE on my post or reply. I want to hear it I want to read just how crapy their lives are too. Shoot your hubby leaving and you stay? Nope if I was him I'd lay with my wife and I would do what I can to have her get up ad live life without her being so down.

Tell more of your life I will speak about mine too. Plus just how much mental health isn't so grand.

I just gave you a stupid Like lol 😆 Misery does love company doesn’t it. I’m so tired today that I can’t even sit for too long I’ve been laying down all day and I tell my husband I’m so tired and he said you’ve been in bed since before I left for work to when I got home you’ve been resting all day. But he doesn’t have what we have he doesn’t freakin know that even though it looks like I’m resting I’m not actually rested. I am fighting an invisible battle and the freaker doesn’t see it. This is freakin torture. I can’t believe how much we suffer. I started cognitive behavioral therapy. They said emotions are playing a role in my symptoms. I told them stress makes any condition worse but that’s not what’s causing this. He is trying to give me helpful tips of how to handle my episodes but I find this therapy so lame. It’s actually making me angry. And moving my head side to side and trying to focus on an object messes me up too it happens to me all the time in physical therapy that now I’m taking a break from that.

Hidden
Hidden

That'll tell you something right? That if it was emotions than emotions could cause that and not when you're just chillin out. Emotions huh. So that means if I'm happy or just indifferent it would also play are part too then. Funny how they wont say anything about those ones just the bad ones.

Listening to others about what I have is futile they dont know what we experience so in actuality they cant help. We just go to help ourselves not them help us.

Best thing to do is find a new purpose for you. I had to give up working on cars and trucks and eventually will need a wheelchair but I really do a great job at pushing myself and do things I can do rather than sit and waste away.

Since you YouTube lookup Larissa Anderson and Functionalenny. They both are awesome at helping people like us. I learned to "do what you can when you can when" and about the hubby. Sit his ass down and share as much as you can if he really cares he'll listen to you. And that's coming from a man himself

My hubby is not the touchy feely type and is not too sympathetic. It sucks but it is what it is. At least he hasn’t left me and is taking care of me financially and let’s us order out since i get exhausted standing while cooking. As for finding a purpose. I’m not there yet. I’m not done with the grieving process, I still can’t get over how I can hardly function and that this is my life now. When Spring came and I was able to walk a little bit in the park and see the cherry blossoms I was in a happier place and thought I accepted my condition but as summer came and my family and I realized how limited we were I felt like a burden and became angry. My husband had to push me in a wheelchair at Hersheypark amusement and he got so tired he couldn’t do all the rides he wanted and kept saying how tired he was because he had to push me. I cried I felt like $hit, we still haven’t adjusted to this or accepted that things are so different now. My disorder has made him more aware of his own mortality and age that he has become angry and depressed too. I see my psychologist tomorrow but so far this therapy isn’t working for me. I guess I have to give it more time since there is nothing else I can do. I’m subscribed to those you tubers as well and Larrissa’s husband seemed so supportive in the beginning and now they are separated. It makes me wonder what will happen with me. Oh well have to take it one day at a time.

Sorry you are feeling that way I definitely understand that’s my life as well you tube and Netflix can’t cook or clean as well as enjoy summer either and the fatigue is nuts. It is so nice to know we are not alone with all the people on this site but I also feel sad anyone else has to suffer with this disorder. Best wishes and Hopefully some good days are ahead for you soon.😃🧚‍♀️💐

AjaStar
AjaStar in reply to Greeney

Me too I’m glad there are others like us only to feel validated and know that we are not crazy but actually sick. And It makes me sad too that there are so many of us who suffer in silence. This is a safe place to vent our frustrations and to look for support and tips. I’m currently watching the series dr Quinn medicine woman in amazon prime for the fifth time on my tablet. And been looking at videos of people owning snakes lol 😂 on YouTube. Was thinking of getting one since they don’t require much and only need to be fed once a week. I have two parakeets and a hamster I call Eevee. Sometimes when I feel bad I watch them go about their business and it makes me smile and gives me a distraction. Would like a dog but kids are allergic ☹️

Greeney
Greeney in reply to AjaStar

I love that show I used to watch it weekly when it first came out but I don’t think I finished it to the end so I will definitely do that. As for the snake it would be much easier than my two dogs one is a German shepherd about a year old loves to play which is good on a good day but there haven’t been many since April 😕 also they do have certain dogs that are better for people and kids with allergies not sure if you looked into that if you were interested

AjaStar
AjaStar in reply to Greeney

We are fortunate to have entertainment at the tip of our fingers anytime we want. Because distraction is the key to dealing with these symptoms. I’m sorry u haven’t been too well for the past few months, if u don’t mind which symptoms are u experiencing lately?

I have very extreme fatigue, pain everywhere blurry vision my eyes jump in my head if I don’t close them as well as tremor and balance my head jerks very fast to both sides and I look like I dance like Elaine on a Seinfeld episode as well as fall over and bang my head off people and objects I am by when trying to walk

The fatigue for me feels like I’m a slow zombie trying to cling on to life. I still can’t believe that all my resting doesn’t rejuvenate me. Sometimes I try to walk more and then my limbs feels a thousand times heavier like gravity increased and I become uncoordinated. I go lay down and then can’t get back up because I’m temporarily paralyzed. It’s not everyday thank God. Right now my eyes are bothering me the most it’s hard for me to focus and I get a bit dizzy and of course I’m tired. Are you doing anything right now that helps your symptoms?

Greeney
Greeney in reply to AjaStar

That is what my fatigue feels like too. I am on pain meds to help with the pain cause that makes it worse although I really try not to take it because I already feel like a zombie and I am really sensitive to pain meds they make me itch everywhere and throw up and they don’t wear off very well I take a lot of showers when my husband is home because I can’t take one alone I will fall out when he isn’t around I take a bath but have to be careful about getting in and out without falling and I sit because walking and standing makes it worse as well. For some reason my tremor is connected to my knees when the doctor hits my knees with the hammer my head jerks no matter what knee he hits lol. I also have brain fog and memory problems. I have a neurologist appointment in a couple of days been waiting since April and it’s a new neurologist so hopefully they will be able to help fingers crossed. The last time it was this bad it lasted for 3 years but that was when they were trying to figure out what was wrong with me.

Greeney
Greeney in reply to Greeney

I also take celexa for anxiety and ptsd

I take showers too sometimes two three times a day. Hot so it can massage my muscles. My muscles get very tense and I get a lot of headaches and the shower sometimes helps. I also get forgetful and sometimes I get a dumb feeling in my head like I’m stupid or slow like drunk almost and then I slur. That’s the symptom I hate the most.

Greeney
Greeney in reply to AjaStar

I do and feel the same I also have headaches and extremely tense shoulder muscle but I had neck surgery for discs pushing on my spinal cord had them removed and my neck is fused with metal and screws 3 thru 6 so it’s range of movement is limited with my jerks sometimes my head tries to go further than it can I swear if it could go all the way around just spinning like a top it would and it tries to frequently lol

AjaStar
AjaStar in reply to Greeney

My jerks are usually in the arms and legs, I’ve had it only a couple times in the head and it was way more annoying.How does the Celexa feel? Do you think it helps your symptoms? I was prescribed hydroxyzine to help me sleep and it’s supposed to be very mild but I got a reaction to it. Around my mouth and tongue got a little numb and I got heart palpitations. I was so mad because I was really hoping that would help my sleep. Oh well the only thing I can handle is Tylenol.

I was also wondering how old your kids are hopefully an easier age to not need constant supervision and they can also maybe help you a bit?

AjaStar
AjaStar in reply to Greeney

One is 16 the other 10, and my oldest was able to take my little one to school in the mornings thank god

I am not so sure the Celexa didn’t cause my relapse as it takes a full month to get in your system and start helping with the anxiety and my relapse started when I started my 2nd month. But my Gp and therapist said no it wasn’t the meds when I asked them to get me off of it and unfortunately it’s a med you have to be weaned off you can’t just stop taking it.

Those meds change your brain chemistry and ours are already messed up so I was always hesitant to try the antidepressants especially now that a mild anti anxiety med hydroxyzine caused me side effects. It’s helped some people and others not. Do you think you’ll stick with it or wean off? How was your day today? I was a little stronger today so I cleaned up the bathroom cause it needed it lol. My walking is a uncoordinated now and I’ve been yawning a lot. And I also experience this weird sensation of when I’m weak and I sit down or lay down and for a bit I feel like my body is sinking. I wonder if anyone else feels that.

Greeney
Greeney in reply to AjaStar

I am gonna talk to the neurologist and try to have her take me off the celexa. I put off taking it for a year when they first suggested it but gave in when they wanted to have me do Emdr therapy and memory testing because I figured a pill would be cheaper than all that and only my husband works and they promised it was very mild one and I am on the lowest dose anyway. Kind of feel woozy today but am able to walk a bit here and there before my balance and jerks and tremors start again and tolerable pain today so both huge improvements. The other day I sat and cleaned up my husbands cluttered bedside table and was proud I accomplished that lol. I only experienced the sinking feeling when I tried a couple of puffs of marijuana to see if that would help my anxiety and tense muscles and pain and even that I can’t tolerate at all. I have been thinking about the Cbd oil since they say it doesn’t make you high but still thinking on that one.

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