Overcoming FND?

[TurquoiseTime]

Has anyone overcome FND? I have a Functional movement disorder with flare ups. At times I’m wheelchair bound. I’ve dealt with symptoms for 10 years. At one point they thought I had MS due to brain lesions but an MS specialist ruled it out. I’m eager to find a solution because it’s too life altering. Thank you!

[cocoferraro]

I think i am right in saying there is no cure for FNF, sometimes yoou get better completely, sometimes you get better then relapse and sometimes you never get better at all, but, youknow what, would rather have FND and all that it brings than have cancer, as FDN is not life threatening. We must just all adjust keep in touch with our GPs and learn to live with it, Sometimes if you embrace it, it gets better. Much luvxxx

[TurquoiseTime in reply to cocoferraro]

Thanks for your response. I go back and forth trying to accept this disruptive condition or pretending that there is nothing wrong me so it will go away only for it to come back again. Onward and Forward!!!

[cocoferraro in reply to TurquoiseTime]

I am so glad that you keep trying, just like me, and it may get better!, I have accepted that sometimes I cannot speak, the words are there but I cannot get them out, went to pick up my repeat prescriptions 2day at the chemist and all of a sudden could not talk--it was so embarresing, my husband took over for me! so hay ho, I was embarressd, THEY WERE NOT. so have to get on and live with it. Thats my lot , there are worse things in life, Keep safexx

[TurquoiseTime in reply to cocoferraro]

Thanks for responding!

[-132 in reply to cocoferraro]

This happens all the time to my partner, he gets embarrassed but it has never embarrassed, don't be embarrassed 😊

[cocoferraro in reply to -132]

THANKYOU XX

[ragerty3 in reply to cocoferraro]

I totally get what your saying about cancer and FND yes one might be life-threatening but the other drains the life out of us plus no-one seems to have any answers

[cocoferraro in reply to ragerty3]

I know that there are no answers, because this is a fairly new condition to the medical world, even though it may have been present for a long while, nobody knew what it was.

Yes, It does drain the life out of us, but the right medication does help and a good gp does help too, its only recently that our gps have been actually recognising what we have and putting a name to it, and still, but reading peoples accounts there are still gps and surgerys who dont recognise this, which is so frustrating, I understand.

In another 10 years they will probably have more understanding of FND and it will be widely recognised, but as for now, it is up to us to make them more aware.

I know this does not help u at this precise moment, but if are offered drugs to make you feel better and have a somewhat normal life then take them, BUT KEEP TELLING YOUR GP OF ALL THE SYMPTOMS, and let them work it out, as long as you are pain free and get through the day, then thats all we can ask at present. the syptoms make us feel bad, eg, shivers, tremers, speach difficulty, aches, muscle spasms, brain fog, rashes, anxiety, heart palpetations, swallowing issues, belly and colon issues, taste, and smell, etc, etc,etc

NO pain means u can at least try to get on with each day, what do you think?

Take carex

[Stanleyleonard12 in reply to cocoferraro]

Being a two time cancer survivor. One of the cancer’s being stage 4. I would say without question FND is worse.

[MONIREN]

I think it depends on how bad your symptoms are and what other health problems you are dealing with. FND rarely comes by itself. I try not to think of what will come next. All the best.

[TurquoiseTime in reply to MONIREN]

Thanks and take care!!!

[Keeponfighting]

I wouldn’t say that I am healed completely but certain symptoms are not as bad as it used to be, I no longer take meds I tave vitamins instead and I am working after 10 years of not being able to work. Sometimes even at work I will suddenly stutter which can be embarrassing being a social worker but I am just happy I don’t have to depend on the headache the benefit gives to people with FND for survival money only because they don’t understand what the condition is about

[TurquoiseTime in reply to Keeponfighting]

I’m glad you’re doing better! What vitamins help you?

[Keeponfighting in reply to TurquoiseTime]

Vitamins B12 and B complex to help with extra strength and to beat fatigue, CoQ10 these vitams was actually recommended by the FND Hope website which has helped me a lot with the feeling that part of your body is absent, I take multi-vitamins too. I take them at the same time every morning before going to work. FND Hope recommended another one for tremors called whey protein which I will be buying too. Check on their website. I hope you are doing better though.

[efnd]

Hi there! Yes! I am getting better. Seven months ago I started having symptoms. Oh couldn’t walk, and a bunch of other stuff that comes with this nasty disorder. But, it’s been 6 months since treatment started and I am overcoming FND. For starters, I can almost walk normal. And the horrible brain fog that I had is slowly going away. I have had amazing doctors and Mayo Clinic help me get past my disorder. I believe it is truly possible to get rid of the disorder and go back to normal life.

[Neo117 in reply to efnd]

What treatment did you receive to get your walking back on track? I’ve been struggling to walk properly for over three years now and I feel like I’ve tried everything! Would really appreciate any advice you could give.

[TurquoiseTime in reply to efnd]

That’s wonderful! It’s must be great knowing you will completely recover! Keep up the good work. Do you have any take always you can share?

[efnd in reply to TurquoiseTime]

Hi! Sorry for the late response! I think that you should never give up. That is my only take away. Anything is possible, if you believe you can be cured than I think you can. The only other advice I have is to find a group of therapists that you trust. I wish you well and I truly overcome this disorder!

[jlbiggs in reply to efnd]

I just read your post on another post please let me know which Mayo clinic you're going to And what you are doing?

[efnd in reply to jlbiggs]

Hi! Sorry for the late response. I went to Mayo Clinic in Rochester. I went there once for physical therapy and then another time for surgery (I have another illness as well) `The first time I went I worked with their physical therapists, and they gave me exercises to do at home, That's all I've really been doing with Mayo Clinic. But my physicals therapist at home is amazing and I have been working with her and I am slowly getting better. I really wish I could help more, and I truthfully hope that you get back to perfect health.

[jlbiggs in reply to efnd]

When I asked them what they would do for FND they said nothing.

[efnd]

One thing I've done is work with a physical therapist. My therapist is Godsent and literally pushes me to walk. Also as I mentioned above I went to Mayo Clinic and they have a program called the Best program I think. I never did the Best program but I did go to Mayo three times and every time I worked with their also godsent physical therapists. They helped me a ton and am the reason I am getting better. I wish you the best and hope you get back on track!

[Di01]

Hi i'm just finding out about this condition atm would like advice on the matter ive been given meds to control a bit of my symptoms however messes with my brain that much that i feel like im fitting off them really dont understand why i cant take any kind of meds even having trouble with just paracetamol anyone else like this ?