Worsening FND Symptoms and Stess

Good evening! I need your guys advice. I am now losing my ability to walk. I found out today that I need a walker. I was using a cane but now cannot even use a cane with assistance. I was recently in the hospital for uncontrollable seizures. My wife is overwhelmed now and not sure what to do. I am now stuck in bed or a chair until my walker comes. The last few weeks have been stressful. How do I comfort my wife? How do I function like this? I know others have been through this. Sorry if I seem to be dumping my problems on you but I need to vent. The good news is my family doctor is willing to help. We are checking my psyche for triggers but we are thinking it is a functional problem. I have spent five years looking for a trigger but there isn't one. Again, I am sorry for dumping on you but I need some input from other sufferers. Thanks you in advance.

17 Replies

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  • Oh my gosh, this system doesn't like me, this is the 3rd time I have tried to write this letter to you. So I will try to make it short and sweet. First of all, don't give up, keep looking for help, triggers, even simple ones. Use your GP to help you get therapy, weather it be talk, physical, occupational, rehabilitation etc.. Keep trying, don't give up, because if you do, this disorder can and will take you down, and everything you love with it. 2 years ago I had to deal with a walker, crutches and even a wheelchair to get around, however I was fortunate, and had many days where I didn't need it, but I never knew when I would or not. One of my triggers was cold. Walking past the freezer or cooler section in the grocery store is not a friend of mine. It will make my muscles freeze, and drop me to the floor easily. Keep a good attitude, keep fighting, and get help. You wife will need it too. Someone to talk to, and with help. I am fortunate to have a great husband to help me, and a wonderful family and good friends that are willing to help when needed. Don't be afraid to ask. Keep trying, and if you or your wife would like to chat, I would be happy to talk with you, and share my experiences via email. Best of luck, and keep smiling and keep trying. You can do it, you just need to have faith in yourself that you can overcome this, just don't give up! Best of luck

    Cheryl

    cgarff1@gmail.com

  • and don't worry about asking for help on this sight, that is what we are all here for. We are all going through this together, who better to ask than those that are going through the same hell as you are. We are here for you, rant away, ask questions, and keep searching

    cheryl

  • Expect an email from me or my wife.

  • Hi, my daughter is 16 and has recently being diagnosed with Fnd after 8 months of symptoms, she collapses and has lost strength in her legs and is currently using a wheelchair.She is devasted as wanted to study performing arts and now can't dance.As her mum I feel guilt, despair, unable to help, sadness...many feelings as I try to support her and wish I could just swap places with her to take away her symptoms, as she also has pain , extreme fatigue and seizures.I have reduced my work hours so I only leave her 3 mornings a week, but feel guilty when I go as I feel I'm leaving her alone while I continue a 'normal' life.

    The positive news is before diagnoses in October , during the summer holidays we took a step back , took each day at a time , let her rest but had one hour out a day..shop, library, round the park...and she slowly recovered slightly...she went from being unable to sit up unsupported in June and I was dressing her etc, to walking short distances in September! Unfortunately going back to start sixth form she has relapsed..school and exams are her trigger...so we are starting again, she can just about walk round the house and manage 2hrs out of bed a day for schoolwork/seeing friends.....it's really hard but I do have faith that taking it steady she will improve again.Theres good days and bad days, so we plan little things daily and anything extra is a bonus.Also I research/Google as much as I can, speak to the GP, and do anything I can so I feel I'm helping her.theres Facebook groups I've joined so I can see how other people are dealing/coping/feeling so I get a better understanding.

    Enough of me! I just wanted to give you an idea of how I , as my daughters carer deals with this.It is stressful...you both need support.Keep speaking to GP for support....I've found mine brilliant.Keep looking at all possibilities..my daughter has had severe anxiety for past 2 years, so we've been to papworth due to chest pains, a&e with seizures etc before finally saw neurologist who gave us Fnd diagnoses and explained why it was this and not ms or other conditions.Now I feel I can accept and move on to some degree...and I look at Cfs/fibromyalgia support groups too as it seems to fall under the same umbrella.There is no quick fix and no guaranteed happy ending, but I try and take positives from each day and not look too far ahead at the moment,

    Wishing you and your wife all the very best, keep talking on here or Facebook sites...you are not dumping problems by any means

    Take care x

  • Thank you for your kind reply.

  • Sorry to hear that it is so upsetting for you.

    Hope that one day you find the trigger and stop this silly symptoms

    Good luck

    X

  • After five years, we still do not know what the triggers are. They are there but I have not been able to find them.

  • Hi, you said you couldn't find a trigger, but you mentioned one, stress can be a trigger. Some foods, as I got garlic as mime. I have been there as well, I've had to reduce my hours at work. My worst time is morning and after working. Be sure to ask more as it could have more than one problem, as I got symptoms of fibromyalgia as well. You will get through it and it will get easier to deal with. Wife shouldn't worry as it rubs off on you, just stay positive. Even though it can be hard at times.

    Good luck

  • First and one of the most important is that YOU SHOULD NOT BLAME YOURSELF FOR BEING ILL. If your diagnosis had been say, a brain tumour, would you feel the same?

    Secondly try to take what my counsellor says is the "Helicopter View" and look on things as if you are looking at someone you were to meet, you most likely would feel compassion towards them and certainly would not say they should feel guilty.

    Third, stop trying so hard to make big goals. It opens you to more feelings of failure, puts you under unnecessary stress which will, in my humble opinion lead to more frequent seizures.

    It is obvious that you care and love your wife dearly and don't want to place too much on her shoulders BUT WE NEED TO BE OPEN. I think she would hate you to bottle it all up and not share how you truly feel.

    Why am I saying this, because I have been feeling the same as you. Because I didn't talk and explain how I felt I started to become really angry with the world, the treatment and the whole flipping condition. It resulted in arguments, frustration and angry outburst against those who really cared about my wellbeing. I needed counselling for anger management amongst other things.

    I am now starting to accept just where I am, hate the loss of control from my life but have started to ask for help. FND symptoms ARE REAL and we are as entitled to assistance as much as other conditions. Use the walker and look on it as a positive way to get back on your feet and rebuild the strength. Take any aids they offer and when you improve you can set them aside. Think of them as a means to an end.

    i and those on this site feel and understand how traumatic the effects are on all aspects of our lives. I may have sounded a little uncaring but my heart goes out to you and yours.

    Take care and as I say a little self compassion is a very important step.

  • I like your advice, sir!

    Doug

  • Are you able to tell me what your doctors have advised

    I am in the same problem and my symptoms have also become worse which means that I cannot work due to health and safety reasons.

    My doctor is unsure when I will get well but what does your doctor say

    I am in therapy

  • Ask your doctor to test your nervous system functions. Your doctors need to see if there anything abnormal in your function of the nervous system. The therapy will not help you at all if the cause of the FND is not from psychological.

    From FND Hope

    Yes, both are listed as the same illness in the APA diagnostic manual known as the DSM-5 and both are typically used interchangeably with one another.

    No, Conversion Disorder [CD] and Functional Neurological Disorder [FND] are theoretically different concepts. CD is the theory that symptoms are the result of suppressed psychological trauma converting to physical symptoms. Studies have found many do not have a history of major emotional traumatic events, or major depression/anxiety. Even if a patient does have mental health issues, now or in their past, there is no quantifiable way to confirm a correlation to symptoms. The change in criterion now makes it easier for physicians to use the CD/FND diagnosis, where in the past they couldn’t when they found their patient did not meet the criterion standard and there was no “converting” of symptoms taking place. Because there is sometimes no identifiable mental health issues, the need to identify one was removed. However, there are some patients who do identify with the Conversion Disorder theory.

    We advocate that patients receive respectable and equal care based on their needs.

    Read this page:

    fndhope.org/fnd-guide/diagn...

  • Thank you for your reply

    My diagnosis is PTSD with associated conversion disorder

    As a result of a trauma therapy may help as this is psychological however there is a belief that conversion disorder is neurological and not psychiatric

    Thanks for your comment

  • I believe conversion disorder is a term not used so much these days and aFunctional Neurological Disorder is much more appropriate. The term conversion will I think in time become redundant as we find more about this dreadful condition.

    Better days are coming.

  • You may be right. Most of the older doctors in my area think FND/CD is emotional suppression. Sad but better days should be coming hopefully.

  • I am now off work as a result of conversion disorder however I am seeing an occupational adviser whom I am working with with a list of jobs I maybe able to do with my injury.

    Then I will see a medical doctor who will confirm to see whether that job will be sustainable.

  • Best wishes!

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