How do you cope with becoming chronically ill? Possible functional neurological disorder?
Hi guys, i'm new here. I have 2 disabilities already but they do not really affect my quality of life so much {mild cerebral palsy I was born with and autistic which causes some issues but I now have ways of coping with things]
This issue ive had for the past couple of years though is a different story and greatly affects how I feel about my life...
I would like to know how you deal with becoming chronically ill? I keep having episodes of being unwell along with being okay again. I have had this for about 2 years now.
Basically I have had an MRI on my head to see if there were any issues with my nerves and I have seen a neurologist who had found no issues, it was strongly thought to be an anxiety related movement disorder, i've also been told psychogenic illness; however I must stress that I am not putting on my symptoms or making them happen on purpose. however it effects more than my movements and I have not had movement issues so much anymore but more brain fog, weakness,
I am lately coming to the conclusion that it is not caused by my mental state as such though it may be worsened by anxiety... I have managed my anxiety really well and tbh since the lockdown my anxiety has all gone away besides sometimes feeling slightly nervous at night.
I think I was starting to get some issues of slow movements, difficulty starting a movement and weird feelings when I moved when I was like this as well as numbness in patches on my body but only a little bit. I had my bloods done but all was okay. I eat fairly healthiliy. I went through a break up that I took very hard and had difficulty dealing with; after I started getting insomnia because of anxiety I went to the dr who prescribed me antidepresents which I now know was a huge mistake. I had an adverse reaction to this medication which made all my physical issues I originally had much much worse. I would freeze like a statue sometimes and have pain. I had intense feelings of terror because of the medication and it messed up my sense of time. I stopped taking the antidepressants after just 2 days because I felt awful. I had other effects from the drugs but I won't mention them now. Anyways I started to get fatigue I assume from stopping the medicine and how it effected my body. Slowly over the course of months / year and a bit I started to feel better but it was windows and waves, every day I got better but it was so slow progress.
Basically I get episodes of feeling also the same physical feelings I had when I took the antidepressants but I dont get movement issues so bad that I freeze on the spot but I feel very uncomfortable and then it goes away but when I feel very bad I feel like wow this is too much.
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I am currently taking a year out of uni because although I got better I am still not 100% and it turns out I struggle to do things at the same capacity as I used to. I still work but I had to stop taking on extra shifts because of brain fog, trouble thinking well, weird pain, weakness and fatigue.
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What caused the latest episode and why I am so annoyed: I have been playing the video game just dance with my sister for 3 days straight, was okay. I had a day where I did no physical activity and the next day I did some hula hooping with my sister. Then I started to feel tired so I stopped and I started to get a familiar weird feeling in my body of weakness and weird feelings. I went to rest and it got worse. Later in the day I had a sort of pain when I turned my head and also I was slow to answer questions and had trouble talking so well (this happens too). I assumed i'd be better after I go to sleep but no.... I've been feeling fatigued and I get worse if I do too much physically and its 4 days later. I'm very upset because I do not know the cause of this and what I can do to get better.
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My friend told me perhaps I should accept this as my new normal. I don't want to, but I figure if it is going to be a permanent occurance I need to be able to deal with it so I thought I would ask others how to.
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For those of you who have become chronically ill or have become more ill after a period of being healthy or able to do more how did it make you feel? How do you feel now? What can be done in the way of coping with a new way of life?
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The three posibilities of what I may have:
*I am thinking it is possible that the ssris have caused some permanent damage to how my body works. I have not felt right since then. Could it be the fact I was given neuroleptics while also having cerebral palsy which is by definition damage to a part of the brain already.
*That I may have functional neurological disorder; much of my issues seem similar, I do not have issues as severe as some this this condition but it fits the description in that it is variable, FND patients do not show any sign of injury on MRI.
*Is it possible I could be developing chronic fatigue? This could also occur in FND though. (as it seems to occur after much physical or mental activity).
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I really wish to get better.
@ORANGESLemonsCITRUS
First things, I'm not a doctor, all I can do is tell you my story and maybe help you come up with questions to help you find clarity. Medication can unbalance the chemistry of your brain and that can take time to recover from. I was prescribed Tofranil as a child for ADD and depression. I soon developed night terrors that stayed with me for over twelve years, I was only on Tofranil for 6 months. The nightly episodes stopped 17 years ago. I will suffer one or two attacks a year now. I have had traumatic brain injury that left me with essential tremors and according to my neurologist a sevre chance of Parkinson's. The brain is complex chemistry and thousands of electrical connections. Look into foods that support a healthy brain (I like walnuts and they are suppose to be good for my brain. Win-win). You should also pick up one intellectual hobby and one creative hobby. You need to activate both sides of your brain for good health. Try walks with friends. The motion requires both sides to fire and conversation will require thoughts and memories. Never stop trying everything.
@RealityCzech hi!! Again, not sure how this app works yet but I got a notification of your response and a lot of what you say has interested me. I too, have been diagnosed A.D.D, am on the spectrum and have intense and irrational anxiety. I don't know how to start a chat with you but I really would like to talk to you. You sound like someone who might actually kinda get me and I'm interested to see life through your eyes.
@SlashnDash3 Thanks for caring and for sharing.
@ORANGESLemonsCITRUS
Oh, I don't cope! I fight back! Life is to precious to let a day slide by that you didn't try to get the most out of!
@ORANGESLemonsCITRUS Thanks for sharing.
Hi, I'm new and I saw this post and it really hit a cord as I went through a similar experience. I have had functional neurological disorder/ FND for 8 year now and it very much is a chronic illness however it can be managed. Mine comes and goes (at my worst I've been paralysed down one side and had to relearn everything 5 times like a baby.. which is really not fun!) but I am now stable and able to have a meaningful fulfilling life as best i can :) I don't know where you are in the world but if you do have FND I highly recommend this website: https://www.neurosymptoms.org/ It's written by a leading FND specialist in the UK. (Where I live!) For patients with FND it's really useful and I highly recommend it. FND can seem utterly terrifying when it first hits and unfortunately every person with the condition is different as the condition affects the nerves in your brain - think of it as a software problem in a computer everything is physically there it's just not sending your body the right messages to work properly. Physio therapy helps with retraining the movement and physical problems. However a common side effects of FND are fatigue, brain fog, pain, problems communicating ect. Tips - eat healthy food/balanced diet if you can. - have a graded exercise routine eg have a base line of things you can do every day regardless of how you feel and then gradually increase up or down your exercise/work load depending on how you are. Listen to your body ! If it says rest then have a rest. Lastly you aren't alone! This is actually an incredibly common chronic illness and there are lots of FB support groups out there. Keep positive!