My 11 year

[Mum06]

My daughter was diagnosed 2 years ago with fnd and has been a wheelchair user since as unable to weight bear she also has a load of other symptoms but one was chronic fatigue. She was sleeping up to 18 hours a day but was also on 30/40mg of amitryptiline at night which I felt contributed to her sleeping so much during the day but I was told from a gp that taking that much amitryptiline wouldn't have contributed to her sleeping so much but she has since stopped taking them and has been awake enough to go to school but sleeps the rest of the time. Has anyone else experienced issues with sleeping while taking amitryptiline? My daughter is 11 and weighs around 5 and a half stone. Thank you for reading.

[Jofisher]

Hi Yes your g p is wrong sorry for some people Amitriptaline makes you do exactly that I was on 75mg at night and it used to know me off something dreadful. My mum was on 10mg and she couldn’t keep awake at all so your absolutely right for for people they can’t tolerate this medication at all. I put on a vast amount of weight on this drug as well I would never take it again. Does your daughter have fibromyalgia chronic fatigue syndrome or M.E. As well ?

[Mum06 in reply to Jofisher]

Thanks for your reply. They won't test her for any of that just keep telling her she has fnd but fnd is all a made up illness and its all in her head. My daughter put on quite a bit of weight while on them also but I feel I am constantly fighting with them to get them to believe her. They just keep telling us that amitryptiline wouldn't make her sleep that night and the next morning and early afternoon as it doesn't do that to anyone . Thanks

[Mic67]

Hiya yes even 10mg Amitryptaliene makes me tired. I really think you need another opinion. Can you ask for a referral to a neurologist or a CFS/ME clinic? This is terrible.

[Gemmamumtodane]

Hi my son is 12 he got diagnosed with FND in August 2020 . He got ill in October 2019 just after his 11 birthday with a cold . He never got better . He suffered pain , weigh loss and weakness . The ability to move his head and sit for several months .

They found syringomyelia in jan /20 which they said was causing it . Did lumber to reduce pressure on his spine . He became wheel chair bound after this as he couldn’t feel his legs and no muscle movement .

They then said it wasn’t the syringomyelia that was causing it and gave the diagnosis of FND .

He has been like this for a year ,then 5/6 weeks ago got some movement back (he’s doing good in the way of movement when he’s got it )but still most of the time is paralysed .

He is on 10 mg 2x per day of amitriptyline , it wasn’t helping with pain but it was helping him eat a bit more and put weight on . He was 3 stone 5lb when he went on it and a few months ago got up to 4stone 11 lbs .

He then was put on fluoxetine 10 mg morning and versatis patches 12 hours a day on spine to help with pain .

He does not sleep until around 5 am in the morning ,but once he goes to sleep it’s hard to get him up . He does not get up until 2/3 pm and he really does not want to .

I also keep asking if the medication could be affecting the way he sleeps but I get told no . They blame it on the pain , but I think it’s partly to do with the medication too .

He has not attended school in nearly 2 years . His weight is now back down to 3 stone 6lb , his sleeping pattern has got no better and my son is just feeling more and more sad .

I hope you get the help you need for your daughter to start living a more fulfilling life , I really hope I can for my son too .

I also suffer from fibromyalgia and chronic fatigue syndrome so I do wander if I have maybe passed on some sort of gene that’s caused this but don’t think I’ll ever know .

[Brokendeer in reply to Gemmamumtodane]

Hi first of all there is no evidence that Fibromyalgia or Chronic Fatigue Syndrome are genetic, so please do not worry about having past those onto your Son.

Secondly, as he had a cold/flu like episode then these terrible symptoms - have you tried seeing a Rheumatologist? They deal with pain management and inflammatory diseases and I knew a lady once with Rheumatoid Arthritis brought on by having a flu like infection.

Again like with the other worried Mum06 - your sons problems do not immediately shout obvious FND symptoms?

Look for the calm in the storm

[Brokendeer]

Hi I was shocked to read your post as I thought that children would be fast tracked and fully investigated far more than adults. It seems not?

Amitriptaline is a drug that has been used for over 40 yrs and considered `safe' for most pain or psychological issues - I think that is possibly why GP/Doctors prescribe it and are not willing to try something else perhaps more volatile in children. All medications are tolerated differently by people as we are all different, I myself only had 10mg doses and found I was wide awake at night and excessively sleepy in the day affected my ability to go to work- I stopped using them!

I know you do not want to go back and ask anything more of your GP, excess sleeping, weight problems and muscle control issues are not typical FND symptoms that I know of and I have met a few varied versions when an Inpatient.

You need more blood tests and monitoring for a longer period to have a condition like this be diagnosed properly. My thoughts are perhaps a Thyroid or another Endocrine problem, because they affect the metabolism, weight, sleeping and can affect muscles too.

You might want to in the meantime try an elimination experiment with his food as well?

Yeah not actually as crazy as it sounds; because many years ago a lady was so bad she could only use a wheelchair and had go into sheltered accommodation in her late 40's with terrible fatigue, muscle weakness etc - the Doctors on the board of Governors for this charity supported housing were unhappy as the lady was not technically of eligible age. They took it upon themselves to assess her and followed up with testing, eventually found out she had a severe Wheat allergy - so worth trying for a couple of months just to see if anything improves? Luckily there are many alternatives to most things inc.Gluten these days, he need not go hungry.

Look for the calm in the storm

[Brokendeer]

p.s A Neurologist could look into : Myasthenia gravis (MG) is a long-term neuromuscular disease that leads to varying degrees of skeletal muscle weakness.

p.p.s sorry for the mix up in pronouns - meant She not He was reading two posts in sequence.

Look for the calm in the storm