looking for someone to chat with about functional disorder ive had it the last 2 years and it just seems to be getting worse? my doctor doesnt feel theres any tablets that can help me. Am taking full body muscle spasms along with right sided facial droop that I have now everyday with no movement in my face. its getting worse i used to have some good days were my face was 'normal' but they have totally gone now!! feel lost and just dont feel theres any hope at this point. my neuro doc is running behind on clinics just a waiting game to see him. anyone any pointers for me that suffer this disorder too?
ruth
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Ruth_lderry
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Any questions you have, please don't hesitate to write here and I'll do my best, along with all the other folk on here.
My wife Kim has had FND since 2012, after collapsing when she was 34, in the NEC Arena in Birmingham.
It's a long road, a day at a time, ups and downs, tears, joy at times but always one day at a time, so please fire away and if we can help then we will.
Your Neurologist may suggest Baclofen, which Kim takes daily, and is a relaxant for muscle spasms.
thank u for your reply. what way does it affect u kim?
I have faical droop every day now its like my face is forgetting to wake up when I wake in the mornings. I am on baclofen the last year and a half, took along time for them to start me on it after far to many ambulances being phoned they did give it to me just dont know if its doing any good when am still taking the spasms.
Its really been the last 6 months that I seem to be getting worse, and with the waiting lists for appointments at the clinic running behind I just dunno were togo from here. what treatment plan r u on?
Ive tried everything they have asked an am still getting worse. Ive asked for my mri to be updated. I used to lose my bladder control when taking the spasms am so scared that it will happen again when am in spasms.
Ive had alot of headaches that are so unbearable sometimes. Sometimes I feel theres only so much the doctor can do as its not really a very understood condition. Part of me hoped when I was told what it was he was going to give me another drug and all would be ok but thats defs not the way. I also suffer with lupus, fibromayliga, IBS, kidney dieases so am on plenty of tablets and treatment as it is but I really wish there was another to take away this. I was due to get married two years back but had to put it off as I couldnt cope with my face being in a droop, and now by the looks off things I really just dont know when I will get married.
Kim get's affected in many ways, from leg spasms, neck spasms, eye spasms and also arm and hand tremors.
She has IBS, and also her bladder is irritable just like you have Ruth.
She has EOE, which is a throat disease, for which she takes a spray for and also Myo Pericarditis, which is fluid and inflammation around her heart muscle.
The Baclofen helps but it was trial and error as regards getting the right dosage.
Thankfully Ruth, Kim's Neurologist from Salford Royal and also her GP, have been very good.
She,just like you, also has the face drop issue and it looks like a stroke at times.
I must finish here, as I am about to go to work, so please forgive me.
Hi Ruth, I've never had a migraine in my life, my friend suffered with them for years so I do know what they entail. When I got ill 2 and a half years ago, I ended up with continuous spasm which eventually ended up in my head. The pain was so bad it dropped me on the floor in agony. My partner paid for me to see a nuerologist privately as my dr would not accept that I didn't have depression and anxiety. The nuerologist said my pain from the sciatica I'd had , had been allowed to run riot as my dr wouldn't give me anything other then co codamol which never touched the pain in my back and leg. The Nuerologist was so disgusted how I'd been left he gave me a greater occipital nerve block to the brain for free. When he gave me the injections into my brain I was in so much pain for so long that they didn't hurt. The good news , I've never had that pain in my head since, bad news was that the spasms just dropped down to my neck and shoulder and into my left side of my face. It still beats the horrendous pain in my head though. Best wishes Leesaloo 😊
Hi Ruth, I know its horrible isn't it you feel like your losing yourself. I've had it for about 4 years now and I'm getting more bad days than good. I went 18mths without seeing anyone as they forgot about me !!
I went for an assessment to see if the FiND programme would benefit me, just waiting to hear. I was on a really good day though so they didnt see me at my worst.
You mustn't give up though Ruth I know it's was to do but you gotta keep fighting xx
what is the find programme? Yes i feel like am stuck in my own body. Somedays I could just keep the blankets over my head and stay in bed but thankfully I have a great amazing partner and incredible family that keeps me going.
My neuro consultant rang me yesterday so he knows now whats going on with me, so hes hoping to see me soon and see where we can go from there. Ive asked for a updated mri scan as ive got other medical conditions such as lupus, fibro,IBS , kidney disease. So keeping tests updated for me is key. PLus am suffering alot of headaches. Hes happy to do that and going to look into other things for me also. Am just the type of girl that wants everything done yesterday ha.
hi sorry been a while my head has been engaged in activites that didn't include my body !!
FiND is a programme to help with the symptoms of fnd and how to manage them , i start on Monday so i will start regular updates for anyone who might want to read them, i am not really sure what goes on yet all i know is its a long day with a long commute for someone that some days barley knows her own name so fingers crossed it helps me !!
Hi Ruth, I am so sorry this is another thing that you need to go through along with you have already. FND is not a fun thing to be going through. I have dealt with this for almost 9 years now, and I am actually having some improvement thank goodness, unless I over do it. I haven't had to deal with the drooping of the face, (have they checked for Bells Palsy? I hope they have.) The meds my doc has me on are: Divalproex or Depakote, Aptiom and Ropinirole HCL. The Depakote is supposed to help with the headaches as well as many other symptoms.
I deal with myoclonic jerks and muscle spasms from my face down to my toes, non epileptic and epileptic seizures, dystonic posturing of hands and feet, IBS as well, The symptoms that have calmed down a bit for me lately are muscle drops where my legs become weak and pull me down, rapidly blinking eyes, facial spams, the dystonic seizing, messed up gait, haven't needed a chair, crutches or walker in a while thank goodness, headaches, depression, and very messed up speach etc.. That's not to say I still don't have issues with them, but they have calmed down which I am so grateful for.
FND has a way of changing our lives that is for sure. I left my job of 20 years- 3 years ago last week, and haven't been able to return. I would love to get back to working, but I think doing something else would be nice. I used to play co-ed softball every summer for the last 31 years, but had to give it up when my hands were curling up, and walking was becoming so difficult which made me very sad. That was something I loved to do and looked forward to doing. Instead I have found my love again in drawing and painting and trying to be there for my family as much as I can.
I wish you the best in this, I hope your Neuro is able to see you soon and get you the help that you need. The docs here in the US in my State unfortunately don't help much at all. They pass us on like we are making it all up cause they don't know what to do with us. The one doc I had that diagnosed me with this about 7 years ago said I can diagnose you, but can't treat you. He sent me off to do studies all the way across the US. In some ways it was nice because I was able to see parts that I never have before, and they paid for it, but its stupid that I have to go so far, and still not get treatment. Then I had the opportunity to get treatment again almost across the US but my insurance wouldn't help cover it. And I just found out last week, that they just treat us for Conversion disorder, however they do say they have a 78% success rate of overcoming this. Maybe some day I can make it back there.
Hugs to you for having to deal with all you do, and may you find your answers. Keep smiling and don't give up ok!
hi cheryl thank you so much for your reply. yes they have checked for bells palsey. Thankfully my neuro phoned me on friday and is hoping to get me in to him soon as. I need some kind of help. I hate it am 29, hate seeing new people, cant go out much as i dont know when my spasms will come. Ive lost my bladder a few times when they happen, its awful thankfully i have a fab partner and family that keep me going. Ive asked for my mri to be updated as ive new things happening to me, blurred vision, swollen neck, my jaw is killing me with pain with the droop somedays its so hard to eat. Not that its a bad thing I could lose a few pound ha. If we didnt laugh about somethings we would cry(which I seem to do alot).
They are trying to stay away from giving me meds but i wiish there was a magic drug out there and all would be returned back to normal for me.
I worked my ass off all the time loved my job in retail, but with my lupus, this and other illnesses i had to give up work also. I loved being social but thats out the window now, so ive found new hobbies I love my patchwork, dressmaking and doing nails for my family. Am happy now with my material sewing machine and a glass of wine lol how times have changed for me. Do u get out much now?
Am glad to hear u r slightly improving, I always find in a ok day i try do everything in that day then suffer for it but am sure we r all the same.
Oh Ruth, I am so sorry you have to go through so much with this. I find it really interesting how everyone with this diagnosis can and are so different from each other. It just doesn't make sense. You have definitely been through the ringer for sure!
I definitely think we have to laugh as much as we can with this. It totally beats the alternative, however, there are times where you just have to release that valve and let it all out so that you can continue so you just don't burst. I struggle with that most days. I repress crying too much and its not doing me any good. I need to just let it out, go and pound a pillow, take a bat to something just to let those frustrations out.
I too wish there was a magic drug that would take this away and return our lives back to normal, but unfortunately, I don't think that wish will come true. I think we just need to keep fighting, and trying everything possible to get back on our own. I am grateful for a good Neuro who believes in me, and doesn't think this is all conversion disorder like is said, as we found out when testing for epilepsy.. The docs all said," No its non-epileptic seizures" because they were testing me during the day when my body wasn't acting up so much.. But she listened to me, and did a 3 day test, and found out I am having both. She also feels the same as I do.. There are so many people out there that have gone through the same things as I have or much worse, that don't have these problems. So why me, and not them as well. It just doesn't make sense you know?
I am grateful that there are a few things that really help me like drawing, painting, and thankfully I am able to get out, I just have to over look the shaking/jerking, wobbling, facial issues etc.. and go and do what I want. I am able to drive which actually focuses me like the drawing and calms down for the most part. I have only had a few times where I didn't feel safe, but was not around traffic, and could stop.
I wish you the best. If you would like to chat more, you can email me: cgarff1@gmail.com
Cheryl
ps.. anyone know how to add pics on this site. I would love to share some of my art..
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