Fibromyalgia or Fnd?: Hello, my... - Fibromyalgia Acti...

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Fibromyalgia or Fnd?

Hippydaisy profile image
8 Replies

Hello, my daughter was diagnosed last year with Fnd.however I feel her symptoms match fibromyalgia more closely, but having only had one appointment with a neurologist , and pain kicked in after this, it's all unknown and untreatable, leaving my daughter very isolated.I wondered if anyone has been diagnosed with both conditions , or misdiagnosed ? I just feel like I'm not getting the best support for her, it's so difficult.her symptoms are chronic fatigue and pain (all over, but worst in legs and lower back..often burning and unable to be touched), seizures or drop attacks, general weakness, she's currently in a wheelchair and only out of bed 3 hours a day, slurs words at times and brain fog, and can just 'shut down' or collapse, often can hear what's going on but unable to move.im chasing the neurologist, she is under Camhs as suffers from anxiety and they have no idea, and my GP said we have to go with neurologist decision until we hear more.i would just be grateful for any advice xxx

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Hippydaisy profile image
Hippydaisy
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8 Replies
Olivia1 profile image
Olivia1

Oh I was so sorry to read this bout you daughter. I don't have any answers for you but just want to wish you well. Others may have something more to offer you later xx

Hello dippydaisy.

I have just done a check for you and found out that there is a FND site on Healthunlocked. may help to compare the two sites and find out what symptoms are the nearest.

I think that your GP knows best and wait for the results from the Neuro. It can take along time to get a diagnosis of these neurological illnesses. but they usually get there in the end.

Having said that and just to totally confuse you :) Have a look at the FND site and hopefully you will find support from them.

Come back to us if you as often as you like.

Sue.

Could one of the Admin, or someone else whos brain is working better than mine put the Link up please. :)

kjkla85 profile image
kjkla85

Hello, I'm usually on FND forum. So sorry for your daughter. I think due to the seizures etc it would come under FND. I know chronic pain and often fibromyalgia come into FND too. I did mention to my GP last summer I wondered if fibro was more the correct label as pain and fatigue were my worst issues when not having seizures. She said Oh what's in a name! Useful. Sorry not much help. Perhaps similar referrals to pain clinic, physio and OT would be useful. I saw a speech therapist but my issues were much improved by then - I was subsequently diagnosed hypothyroid so much of my pain and fatigue is resolving now. I am seeing my neurologist today tho. Best wishes x

TheAuthor profile image
TheAuthor

Hi Hippydaisy

I am so genuinely sorry to read that your daughter is suffering and struggling in this way, and I sincerely hope that she can find some resolution and relief to this situation. I have never had FND mentioned to myself during my diagnosis, and there does appear to be some very different symptoms with the two, including:

Limb weakness or paralysis.

Blackouts (also called dissociative or non-epileptic seizures/attacks) – these may look like epileptic seizures or faints.

Movement disorders including tremors, dystonia (spasms), myoclonus (jerky movements)

Visual symptoms including loss of vision or double vision.

I want to sincerely wish you and your daughter all the best of luck and please take care of yourselves my friend.

All my hopes and dreams for the both of you

Ken

Fibrolife profile image
Fibrolife

She is in my prayers.

I`m sorry , but what is Fnd? I obviously knew 2 yrs ago when i spoke to you on the fmauk site. It seems that i have now forgotten. :(

Mdaisy profile image
Mdaisy in reply to

Functional Neurological Disorder I think :)

in reply toMdaisy

Well fancy meeting you here my friend. How are you. Me I`m like a ping pong ball being bounced from one hospital to another. :P

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