I don’t post very often but always look at how you all are coping with this horrible disorder. I’ve been nearly 9 years with funcational gait disorder and done almost everything the gp, consultants, and phiso’s have done. The disorder is easier as I’ve learnt to manage and just get on with life as best as I can. My hubby and son are very good and look after me well, but our son has seen me like this most of his life and that’s the part that really hurts me.
As I’m coming up to my 9th anniversary when I lost the feeling in both legs and my body from the chin down, it’s a case of getting in and doing what I can to help when I’m up to it.
The last few weeks I’ve been suffering with my walking even more and now the stairs are becoming horrendous! I tend to put things that I need on the stairs and when I need to go up I will take something with me.
As anyone else suffered this long like me? I just wish I could walk down the high street, go around the shops not worrying that I cannot get in that shop with my Mobility scooter.
Your thoughts would be so good? Many thanks in advise
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lorettapalmer
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Hi I feel you , stairs are the worst ! I try to stay positive but I feel I've been left to get on with it having not seen my consult for near on 2 years !
Family are great but I want to live a normal happy 48 year olds life !
Hiya, I was very lucky in that my big hospital 20 miles away had a multi agency for mental health issues and I was with them for nearly 2 years. Seeing them every month, but since they said that they couldn’t do any more for me., just have my very good GP who looks after me.
I worry what the pills are doing to me, take 15 pills a day. From muscle relaxants to back medication.
I wonder what would happen if I didn’t take them all - but then worry for the family!!
Many thanks again for your messages. Was feeling particularly low yesterday and just needed to reach out!! Take care
Morning lorettapalmer stairs can be difficult to the point I sleep in dining room on those bad days, all the tricks you do like put item on the stairs and make the effort worth while I do, I have a scooter which is a life saver as it keeps me independent, I hardly drive now as to painful and vision not good especially on a bad day, I try and focus on my new way of life and move forward, I have accepted that besides family an friends there is no help, especially from professionals, but I also understand is what could they do? As this is not a disease, it definitely is the brain and body not connecting, and when they do the signals are all messed up, I also believe for myself it is like my body warning me to rest as it is not coping with the poor signals, I have a lot of scaring and back problems up and down my spine and I believe when I first got the horrendous viral it affected my whole nervous system and with all the other problems wasn’t able or could not heal properly, (this is only for me and my opinion as I now have a better understanding of how I work. I can honestly say that if I didn’t have this condition I would be like most people and have that look of “really “and disbelief, a horrible but truthful thought, outsiders do not understand but I understand why again this is helpful (she is mad your thinking) , there are more and more believers and people getting involved to support us, just not enough at the moment to go round. but I believe the professional who take on this challenging condition will come through for us and for many they have the support of family and friends, for those of you struggling on your own remember you are the strongest help for yourself so be strong and listen and work with your bodies, you may feel alone but you are not there are thousands of us surviving every day take care . X
I also get pain in my legs when driving but I was not sure if it’s due to my FND or my bursitis in my hips. May I ask what kind of pain you experience while driving and how you know it’s from the driving it self?
Morning survivor, really don’t have answers to your questions, I do no pain is pain no matter where it arises from and it is a message from our brains to our bodies as a way of letting us know , always get any new pain or symptom checked out-by your GP . For me I my body doesn’t like sitting in certain positions so it sends painful signals down my legs and cramps in my feet, I don’t think it is any one symptom but I do believe it is a cumulative bunch of problems all at once, my back has always had problems and I know where I just marched through and carried on I did my self no favours, I do try not to pin point the cause as it cannot be cured and isn’t help full to me, this again are my own thoughts. Take care and be strong
Morning Threewhitewesties, thank you for your kind email, and it so helps knowing that your out there. I’ve rebuilt my life and now work part time in my work that I fell ill at 9 years ago. People ask and I always say it’s the body and the brain not talking together is the best way to describe it.
This does at least keep me as sane as possible, and we need the money as a family. I always feel horrible knowing that the boys at the home do for me, but couldn’t let this thing wipe me out completely.
Thanks again for messaging, means the world to me!
I’ve been at this illness for 11 years now and all your points are valid. It’s tough suffering, but you’ve got to applaud yourself too for managing a difficult hand you’ve been dealt! Working and raising a family with this are quite a feat!
My counselor this past year helped me except it better when it flared extremely bad disabling me with extreme fatigue (at least before I had high energy for my 3 kids, working, running, etc) She said honestly it’s no different than MS, Parkinson’s, chronic fatigue, etc. Those people wake up & want their bodies to work like it used to as well. Accepting a “new” normal is something an FND survivor has to do to move forward with their life.
Like you I’m able to at least work 9-2pm at a different job while my boys are in school, it’s not my dream of going back into dietetics. I live with this literally one day at a time since it’s an unpredictable illness. Give yourself credit and know it’s ok to get depressed sometimes from being sick-that’s normal. What you are experiencing are normal feelings & expectations! Hope this helps.
Btw I’m testing the keto diet (plant based) as 2 FND friends on here have had good success with it and there is new research showing we may have excessive glutamates in the brain and this can balance those. I’ll let you know how it goes-it’s only been 6 weeks.
Many thanks for your email. Do you find the more tired you get the worse the symptoms are? A friend of mine, has just managed to get better with chronic fatigue and now has come out the other side. So very interesting about what you say about cfs.
How are you doing the diet? I’ve been on a permanent diet to lose wait for over a year now. But it’s not very Successful, and only lose a few pounds a month as not mobile. Would love to know what the diet is and do you lose weight from it?
Please keep in touch as would love to know how you are getting on, and haven’t found anyone suffering as much as us.
Honestly Loretta I’ve found no correlations with my symptoms when they got so bad in 2018. Some days I’m minimal, then another I wake up with my nerves in my legs on fire, muscles mis-firing and shakey and those are the rough days where I usually have to rest in bed as soon as I get the kids from school at 3pm.
Before this my symptoms used to be tied to a night of terrible sleep, I would wake in the morning thinking “did I even go to sleep” and sure enough sometime that day by left-sided facial movements, blesphorasm (sp?), seizures would happen with blurry/normal patterned vision.
The diet is high fat (I try to get from nuts, seeds, olives, fish, avocado, coconut as much as I can) 75-85%fat, 10-15% protein, and 5-10% carbohydrates. Women tend to do better with higher carbs due to our hormones, but you might need a keto monitor to measure how “high” you can go. I keep mine under 50 grams of carbs/day, but I’m 6’1.
An app on your phone makes it easy to log the ratios, I use carb manager and it’s free. Yes, you typically lose quite a bit of weight on it while maintaining muscle mass. (i’m a registered dietitian btw) I lost 20# unexpectedly and am a little too thin when I got sick last year, so I try to eat extra fat to maintain.
It’s a very brain healing diet, there is new research showing it can prevent Alzheimer’s if done in a Mediterranean-keto fashion (which means low-mercury fish, olive oil, olives, nuts/seeds, and tons of veggies) I keep mine easy due to fatigue, so breakfast is a veggie/1/3 cup of berries with rotating hemp seeds, chia, or a nut butter. Lunches I have shipped to me from Pete’s Paleo online I take to work. I whip up a batch of fat bombs of some kind (PB/dark chocolate are my fav) keeping in freezer for snack and keto dinner recipes are all I really have to cook. Good luck if you try it report back. Btw at first you feel rough from body switching from glucose burning to ketone burning, but sugar free electrolyte drinks help. Now I feel better after 6 weeks.
Hi, I don’t know if I proved the glutamates link, but I know there is good research on that recently. Yes, it has helped my symptoms. All my muscle twitching is now gone and before I had it every morning. I can lift weights again too!
I don’t get any pain whilst driving because I have my hand controls on my motability car. So basically I use my hands for what the pedals do. I have a push and pull system in which this is are Excelerator and brake.
I have had fnd for 23 years. It's always been a huge struggle, but it tends to come and go in waves. I have periods of 12-24 mos when symptoms are incredibly intense and I get hospitalized on average about 3 weeks per year. But I have years that are pretty good, too, and I have been in therapy for 35 years. In the last 5 years or so I have become much more skilled at taking care of my mental health, and while I still have very serious symptoms ("strokes," falls, PNES, dysfluency and dysknesia), I'm much better at dealing with them when they happen. A big step for me was honestly just accepting this is part of my life even if I don't like or understand it. Can't walk? Walker, wheelchair. Can't speak? Work out a way to communicate when I'm non verbal. Get an apartment without stairs or carpet. Shower stool, grab bars in the bathroom. Asking for accommodations at work and school. Effective meds. Educate my providers about what is going on and how to support me. Effective meds. Leaving my W2 job and becoming self employed (thanks to covid, remote work is possible and I've been fired before for not being able to come in to the office). I mentioned elsewhere my service dog was very important. Learning to recognize triggers and avoiding them or make them less triggering. Losing the shame around being disabled. Getting a car I can put a wheelchair in.
I have never met anyone who said they completely recovered from fnd, although I have read if it's caught and diagnosed early (I started having seizures in my teens and for a very long time people told me I was faking etc, and I really wish people had known and helped me back then) it's possible.
But you can learn to manage. It's when you get to that point that it stops being some big monster you're fighting against and starts being something you can problem solve. But everyone is different.
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