New to FND but not new to its devastating effects

[tinkerbelltina]

Over the past few years I have been noticing a range of symptoms-- but I have seen an escalation in symptoms since the birth of my son 20 months ago. The past 2 years have been excruciating. At first everyone tried to tell me that it was related to the birth-- but after a while that excuse was no longer valid.

Everyone thought I had MS (my GP, neurologist, family & friends). However, when my MRI came back normal that diagnosis turned to FND. I have to say this was absolutely devastating. I was praying for MS. For a defined treatment and prognosis. I even got illness insurance that would help me financially. Its a believed condition and has so much love and support with people rallying to raise money and research. FND however, is met with so much stigma and I have personally had so much of that already in my life that it has really put me into a depressive phase. I hate that I dont know what to say to people. I hate that the first thing that comes up on a search page is mental illness and conversion disorder. My neurologist believes that it is real and I am seeing a complex care physician-- but my family doctor believes its related to my anxiety and does not believe in the condition. Just seeing her last week- her reaction was horrible and it sent me further down the rabbit hole. I am currently off work trying to learn how to deal with all of this.

My symptoms have been evolving. It started with my left arm going numb with constant pain and intermittent muscle spasms (very painful) and numbness and tingling in the arm. Over the course of a few days it spread to my right arm. For about 6 weeks I could not pick up my infant son without dropping him due to numbness and weakness. After a while that went away, but I still have difficulty at times. I have a left leg droop at times and it sometimes does not come with me when I walk. I have problems with balance and gait.

Recently, I developed allodynia-- extreme pain to lightness of touch. My clothes hurt sometimes and my skin feels like it is trying to separate-- it is so sensitive. Does anyone else have this? Have any medications helped?

I am depressed, anxious, have problems with stuttering sometimes (which resembles a stroke), my chin/mouth go numb at times, cog fog, and restless legs (SERIOUS). I am feeling pretty alone-- so I came to this group to see who else is out there. I am just at odds at what to do.

THank you for reading.

[FNDfun]

Hi Tinkerbelltina,

Thank you for sharing your story. Firstly - your FND is real, the symptoms are (unfortunately) very real; secondly - you are not alone.

I was interested to read about your symptoms (although, obviously, I feel for you so much, going through this). My symptoms are very similar (my first post on here was a couple of weeks ago, entitled "Bizarre & Random Symptoms - my FND Story" - have a read and I bet you'll recognise yourself in my story too!) The numbness that you mention in your chin/mouth is something I experience daily - a bit like going to the dentist & having an injection, but without having to go anywhere! Mine can last anywhere from a few minutes to a few hours at a time. The stuttering speech is also something that I suffer with sometimes - I just can't get my words out properly sometimes, yet most of the time I can speak "normally". The pain, numbness and tingling in limbs is another daily one for me - sometimes it's just one small area (e.g. a finger, or a hand), or a couple of limbs, or sometimes every bit of me hurts. It is all so very random and unpredictable. The cog fog that you mention gets me too, as does limb weakness (my legs sometimes give way so I end up "curtseying" to people!) - a memorable one was when I got out of our car and my left leg just didn't seem to be there, so I fell against the car we'd parked next to. I must have looked drunk! (I wasn't!!) I managed to scramble back into the car and then burst into tears.

I don't have any medication for it, except for tablets to stop me getting desperate for a wee urgently and regularly (bladder problems have also been an issue for me). That helps one symptom. Otherwise, I have been told that there is nothing I can have medication-wise and no treatment/help - unless I wake up one day and can't walk, then I can apply for physio! Really??!! The only things I have found helpful are :

1. Yoga - I do this in the privacy of our home using a DVD (Barbara Curries "7 Secrets of Yoga" that I bought online a few months ago). I find it relaxing and calming, and when I am focusing only on yoga I can balance! (whereas balance is an issue for me normally). This particular DVD is broken down into 10 minute sections, so you don't have to do a huge long session.

2. Pacing myself - I've learned to slow down a little and pace myself. I know that's not always easy (especially as you're a mum!), but, given a chance, take a little time out to relax.

I feel really angry that your GP is so unsupportive. Have you got several GPs at your local surgery? Could you make your next appointment with a different GP, in the hope of finding one who is more understanding? I know exactly what you mean about almost wishing that you had MS; I felt the same while I was waiting for my diagnosis. At least people have heard of MS (although, obviously I am not dismissing the effect MS has on people; MS sufferers and FND sufferers are so similar).

I know how hard it is, coping with an "unheard of" condition, especially whilst trying to look after your son (my son was 3 when I experienced my first symptoms, 10 years ago). However, the plus side is that children can be such a positive distraction during tricky times - I hope the joy of having your Little Man will help you through the toughest times.

Please feel free to get in touch again on here if it helps. Meanwhile, hang on in there!

Sending very best wishes.

[Adhoc2]

Hi tinkerbelltina, alot of what you say resonates with me. I've had various symptoms 10 years+. Last year I was hit with loads of new symptoms. I've also wished for a different diagnosis for the same reasons as yourself. I've had years of listing symptoms and no name to call it. I then get FND and still no one has heard of it. Compared to other conditions FND appears to be poorly represented. Good luck x

[andreasimonne]

I too have FND with very similar symptoms to yourself which have gradually worsened - every day is a challenge as nothing comes naturally any more and I can honestly say I feel very depressed but I try and tell myself "it is what it is" even though I hate that expression! The condition is starting to get some recognition now and was featured on Lorraine Kelly's show last May and I have started to see some articles about it published in newspapers and magazines recently - I am sorry your GP is so ill informed/ignorant about it!