Fnd and me

[Elephant756]

I’m so sorry to dump all this on you all. I need to say this to anybody out there who may listen and for once not my lovely family.I was diagnosed with fnd almost 18 months ago.my life has completely turned upside down. My problem first started with right hand weakness my arm and hand and my leg. I was working full time and doing spinning classes at my local gym. Since this I have lost nearly all my sight in my left eye ,I’m awaiting a operation to have hearing aid implants in both ears as I now have hearing problems. I’m also having a spinal op on Tuesday to help with my mobility. They have found chari malformation which as still got to be addressed. I have depression and lack of energy . I’m unable to take information in on a regular basis. If it wasn’t for my devoted family I don’t know what I would do. I can’t drive anymore so I’m very dependent on my husband taking me places. I feel like screaming most of the time. I now have trouble swallowing my food sometimes so eating which I really enjoy is not a pleasure anymore. I really thank everyone from the bottom of my heart who takes the time to read this, from a fnd sufferer who simply needed to download. Thankyou Ann xx

[Resiliant]

Hi, firstly good luck with your surgery, I hope it will be very successful and, after recovery, will at least ease some of your burden. It is tough, I have had symptoms for 3 years,was misdiagnosed for 6 months (was told to get my affairs in order as I was dying) & then told I would live but with FND. I have 39 years of constant pain already(nothing to do with FND) + other medical issues & operations, so I was already at my limit. I also tried to remain positive but yesterday I just got overwhelmed by it all. I still have no real plan, help medically yet & that makes it harder especially when my symptoms have worsened. I too worked, studied etc even through my chronic pain and am now in the midst if another diagnosis. My head is spinning & I think I am screaming with you!(in support) Just know that I am rooting for you & wish you all the best. You sound determined & strong and that is what gets up back up after the rough times.

[Elephant756 in reply to Resiliant]

Thankyou for your kind words. I feel like cancelling my operation and putting my duvet over my head and forgetting everything I’m normally so strong. What’s up with me.????

[Eunomi in reply to Elephant756]

Hi, I can relate to your symptoms.only had symptoms since February. When returning from a walk, I couldn’t get my balance.Was admitted to the Stroke unit. Had numerous tests, endoscopy for difficulty swallowing, MRI, CTScans, X-RAYS, all normal.

Attended ophthalmology for blurred and double vision.

Had a allograph in my Left ankle, having polio as a child, which impacted my

walking and balance.

Now waiting for a second opinion in January. My neurologist said it was a manifestation of stressful events and discharged me.

I am now registered as sight impaired with Macular Dystrophy.suffer from peripheral neuropathy in hands, very painful with loss of eye hand coordination.

I believe the diagnosis is FND. Having a medical background.

Feel the NHS is totally broken from when I trained in 1965.

All systems are fragmented. Now trying the holistic route ,

Private psychotherapy acupuncture and massage. Have lost faith in my

Medical colleges.

Thank you for sharing your story with us, I know the group has helped me to be supportive to each other and increased my learning of FND.

[tabey]

A massive hug sent to you FND is so cruel best of luck with your op.We are always here and never judge just surport

All the best

TABE

[HenriettaPoultryfoot]

Elephant756

You are not alone. It is good to reach out. I find this group helpful. I was diagnosed with FND last July at age 63. It certainly turned my life upside down: from fully functional, confident full time professional to medically retired. I was not emotionally or mentally prepared for that. I have some of the same symptoms as you. My life consists of PT, OT, Speech and Psychotherapy. PT and Speech are twice a week. OT once a week and Psch twice a month.

Your swallowing symptom is most concerning to me. This is dangerous because of the choking hazard. Do you have a Speech Therapist? They handle swallowing issues; it’s not just speaking. I have difficulties with swallowing too. I lost my gag reflex and have clinically choked twice, requiring the Heimlich Maneuver. I have a Modified Barium Swallow Test scheduled for next week. I eat very soft slippery foods, mashed foods, or diced foods with applesauce, yogurt, or gravy. No bread, no potatoes, no rice.

Please seek medical intervention. I could have choked to death twice. I was very fortunate.

The other symptoms, as awful as they can be, are not as life threatening.

Worried about you,

HenriettaPoultryfoot

[Elephant756]

I will take this on board about the choking thankyou

[Westie_1]

Hi Ann, thank you for letting out what you needed as FND is not easy to live with it’s an awful dx with lots of different symptoms but we all develop our own coping mechanisms in time. Some therapy works and some doesn’t but I believe it depends on the individual. I also suffer with depression and other chronic conditions and my hearing is the other way I can’t cope with noise…and we do sometimes feel alone and wonder why us? But like a lot of us on here unless you have it does anyone really understand? I am truly happy that you have got the support of your lovely family that helps immensely! I hope your operations are a success and you start to have more happy and positive days. I know we are strangers but I am sending you a massive virtual hug Xxx Loads of love to you please take care of yourself.Ps like Henrietta said get your swallowing looked at as soon as you can X

[Elephant756 in reply to Westie_1]

Thankyou so much I send you a big hug too xxx

[BORROW11]

🫂💕

[Lorinda1]

Hi Ann. I wish you all the best with your surgery. Your situation sounds exceedingly difficult. Lori

[Elephant756 in reply to Lorinda1]

Hi Lorrie lovely to hear from you. Thankyou for your kind words, now had my surgery so hoping for a good outcome sending you lots of love take care Ann xxx

[cocoferraro]

Hello sweetie,I am here and reading your email.

I was diagnosed with FND 9 years ago, and understand all the effects on your body that go with having FND,

I am 55 yrs old and still battling it, I understand all the things you are going through and my heart goes out to you,

Whatever you say here, there is always someone to listen to you.

I do wish you all the best of luck, try to go with it, dont fight, gook luck

much luvxx

[Elephant756 in reply to cocoferraro]

Thankyou I’m really trying hard. I was as strong as a ox but now very weak . I’m only 57 and should now be reaping the retirement My husband and I so was looking forward to . Thanks again Ann xx

[Fireflygem]

Hi, firstly good luck with your op, I myself had my life flipped September last year I can only describe it as being put in a boat and pushed out to sea with no oars as they gave me 2 websites and sent home. Just know your not alone with silent screaming as I understand your frustration. Its difficult to go from being independent to rely on others and I personally felt a burden to my hubby and children more than once. I hope all goes well with your op xx

[Elephant756 in reply to Fireflygem]

Thankyou so much for your reply. I hope that one day we can come to terms with what’s happened to us. I just want to do the normal things again. I worked full time as did my husband and we had loads of plans for our retirement now all that’s changed. I tell my kids to have fun and spend your money while you can enjoy it. All the best for the future love Ann xx

[Leesaloo]

Hi, I am 7 years in, nearly 8 now. So glad you have your family, I have lost my daughter and my mother now, they have no interest in me anymore as I’m unable to run my mother about and she thinks I don’t try hard enough, my daughter doesn’t have time for me as too busy. I never thought I would lose my family over an illness that is beyond me just getting over it, I think as it isn’t life threatening they just aren’t interested. My partner is my life saver, he has never given up on me. In my 7 years I have progressed until I overdo anything, walking, talking, listening, concentrating, noise has a really detrimental affect, two people talking I don’t hear either, telephone is still really hard work. I’ve just had an operation for a cancerous lump removed from near my eye, more then 10 stitches put in yet my family have no interest at all. The operation caused a non epileptic seizure and I struggled to leave the hospital on my Parkinson’s legs, the constant not knowing when overdoing stuff is relentless and I’ve noticed the seizures affect my mood, leaving me very depressed. I’m thinking of you and hope your operation is a success, ranting on here where people actually understand why your the way you are is a huge help and help realise your not alone. Big hugs to you and your wonderful family 🤗🤗🤗🤗🤗

[Elephant756 in reply to Leesaloo]

Oh my darling, I too had a misdiagnosed skin cancer in 2019 when they realised it was skin cancer I lost half of my nose. I’m so sorry that your family are not interested anymore, This is a illness no one can see so it’s really hard for people to understand. My husband is my main carer so he puts up with the tantrums and tears he was a self employed plumber and I worked full time but that’s all changed now. All my love to you Ann xx

[Resiliant in reply to Leesaloo]

Hi I am glad your partner is so good and is supportive...you deserve it!! I too lost my family, ironically I was first told that I had ALS (MND) - wribngly - like my mum & aunt and not only did my family not show any care, I actually spent that Christmas alone. It turned out to be an incorrect diagnosis (i went thru 6 months with it all first). Now I am diagnosed with Cardiac & most recently FND and 2 of my sisters don't even know, as it would not change anything. So I care for myself & do it all alone. And yet when people say your family must be so scared for you or I bet they spoil you, I just smile & shrug. And yet out of all the medical strain, the lack of care & concern from them is the hardest pain. I have accepted it and am just moving along but it is such a waste.... So i can really relate.......You sound like a loving mother & daughter so I really hope your family will truly see your strength & goodness and realise what they are missing! Take good care.. Best wishes

[BlueSkies1]

Hi there,

I am so sorry to hear about the many many struggles you are having to live through. I’m so glad you shared your story. This diagnosis is just awful-no one knows about it, the symptoms are so debilitating, help can be hard to find, and to not lose ones mind is a daily struggle. I can really relate to the wanting to scream!☺️It is scary for me too, to think that if my family abandons me, Will I end up on the street? I can’t even believe this illness exists??? I can’t believe what has happened to my life???

I wish you so much luck with your recovery. I am not sure if you have stopped everything, but I would highly recommend it…. Climb into bed. Plan on doing nothing for the next several months except therapy and staying sane. And slowly, in the tiniest increments, I hope you see your life coming back to you. I’m sending you lots of ❤️❤️!

[Elephant756 in reply to BlueSkies1]

I do hope that my mobility is going to be a little better after my op. I find myself planning things in my head and it’s things that I know I can’t possibly do physically but it makes me feel better for a little time. Thanks for your reply love Ann xx

[Greyrainbow]

Hi Ann, I done just that a few weeks ago on this site. I am sure that along with myself and many others, we know exactly what you are going through and how vile it makes you feel. Good luck with surgery. I too have brill family but its not the same as someone who has experienced it. I wish for the future we could have small support/meet groups in our local areas, I think it would be amazing to go and have a coffee or tea and let off steam with someone who really knows how life-changing fnd is. We all know others say stay positive but I bet even the positive ones have the odd melt down day! Said more than I was going to today, perhaps I don't feel as good as I thought I was today. Thankyou for reading. Take care xx Sally.

[Elephant756]

Thank you so much , how can you feel so isolated when you have a fantastic family support. Great idea if we could get together. Xx

[Elephant756]

Now had my spinal op to hopefully help me to walk better. Thankyou to everyone that replied to my whining. All my love to you all. Hopefully one day we will be able to understand what fnd is really all about. Tatar for now xx

[Lorinda1 in reply to Elephant756]

Take good care.