I have posted before about my daughter’s FND diagnosis and her journey. I appreciate all the feedback and the well wishes. She continues to do well and her behavioral therapy visits have been cut back to once per month. Until yesterday, her symptoms were less and less with just some shaking legs when she gets anxious or upset. She has learned to relax and deal with this on her own. Just yesterday evening, her right fist clenched into a tight ball and she can’t unclench it. Now her arm is bent at the elbow and occasionally she can unbend it but the it locks up again. She had this happen with her foot at the very onset of this disorder for a brief period of time. I’m not sure if I should take her to see her general doctor or not as there would be nothing she could do if it’s FND. I’m waiting for a call back from the therapist. Has anyone else experienced this?
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Tharris610
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Hi there. I’m sorry to be responding as a stranger to your story. I’m sure others who are familiar with your story will come on and reassure you and advise.
Meanwhile I wanted to tell you my story just in case you feel it’s relevant to your daughter.
I myself have only provisionally been diagnosed with functional overlay/ FND - overlaying a rheumatic disease which causes severe fatigue due to high inflammation in my system. This is due to a connective tissue condition which affects the moisture production/ secretions throughout my body - which in turn affects my tiny nerves, skin, joints and muscles.
My GP only found this out because he knew I already had a common type of autoimmunity affecting my thyroid - which has only been diagnosed and treated for about 15 years but started when I was young we now know.
I’m not sure how old your daughter is but I have read of other people describing exactly this problem you describe - which I too have a milder version of - as part of chronic fatigue syndrome (CFS/ ME).
For me this occurs too when the fatigue is physically overwhelming and my left elbow starts to spasm and twitch and my wrists furl inwards like a fern.
The difference is that I can stop them from locking if I have had plenty of good deep sleep. But I’m very prone to insomnia and always have been. For me it is more like an instinct to curl up than a entirely involuntary spasm. I use hard night resting splints to allow my arms and hands to relax without curling inwards and this helps me. These were made for me by an occupational therapist so they fit my arms perfectly.
If it were me I would not assume this is FND related but I would see her GP and request various tests and a referral for a second opinion neurologist perhaps - or even to an endocrinologist or rheumatologist - if the GP thinks this might be more appropriate. There are specialist paediatric rheumatologists who might be helpful alongside her therapist.
I suggest this because I am very aware that some rheumatic conditions such as Lupus and Sjögren’s (mine) can include a chronic fatigue/ neurological element which a neurologist may not be the right person to determine. When my Rheumatoid Arthritis first started 8 years ago I had quite a similar problem in my knuckles - where my hands would curl overnight and then be excruciating to unlock. Later my knees would do the same and then my wrists and elbows.
This was caused by high systemic (ie in the blood and tissue) inflammation for me -which it turns out I have had since I was a child. However my late mum had always assumed it was psychosomatic and never took me to a doctor about this - apart from when I was sometimes too sick to go to school and my hair fell out (alopecia aerate). The GP and my mum then assumed I had school phobia - which in retrospect was incorrect because I loved my primary school! We now know that it was actually autoimmunity caused by my Sjögren’s and an under-active thyroid.
I recently had my physio confirm that I also have hypermobility, which I suspect is EDS, which I think could well account for a lifetime of connective tissue related symptoms. Unfortunately there are no specialists where I live who can confirm or exclude this but my neuro physio is aware and tapers my exercises accordingly.
So- although I would say that what you are describing sounds like muscle rather than joint related spasms - I would definitely want a doctor to take a look to exclude other possibilities, including CFS/ME, other neurological conditions such as Ehlers Danlos Syndrome (EDS)and rheumatic ones too.
Once diagnosed there is a risk of assuming symptoms are functional when they could possibly be organic, as they were and still are for me.
Sorry if you’ve already been through all this and already seen these other specialists and have been assured that there is no underlying condition causing these spasming symptoms. I just wanted to relay my own story just in case it’s helpful - and to check that these organic possibilities, such as hypermobility disorder, have already been excluded for your daughter.
First of all thank you for your response, for sharing your story and for your recommendations. Since I had not heard back from the therapist I took my daughter to see her regular doctor. He is not quite sure what could have caused this and suggested that we try ibuprofen. He also suggested that she could be having a reactions the IV that she was given a week ago when when we admitting into the hospital for stomach issues. I’m going to look into some of your suggestions and bring them up to her doctor. I’m also going to reach out to her neurologist, whom she hasn’t seen since she was diagnosed with FND. I wish you well and I thank you again. I feel like the doctors are using her condition against her so to speak such as they like to blame everything on the FND. It really pays to do your homework and advocate for yourself and your loved ones. Hopefully it will pay off soon enough.
PS it is very important that your daughter has good stomach protectors (prescription Ranitidine or PPIs) if she takes any anti inflammatories at all - especially with a fragile tummy -hope you know this though😊
Oh my! She she been getting any help at all? How is she handling school? My daughter’s school has assigned her an assistant who writes things down for her. This is all too much!
Can you both tell me what was the outcome of this and how you treated your daughter? My daugther has right foot drop (and no sensation in her foot) and after a car accident this weekend can now not open her first (clenched and bent wrist). Any insight you could provide even thought your post was from a long time ago, would be very much appreciated! Thank you, a very concerned and scared mom
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