FND

[Chimbelina]

I saw a neurologist yesterday about constant intermittent pain of various presentations such as widespread unexpected stabbing pain, intermittent pain of sections of veins and arteries, dull pain that comes in waves after walking and last hours or days, general painful stiffness which is constant, touch sensitivity, sound sensitivity, itching and restlessness, widespread pressure point pain with residual after pain, weakened muscles that feel like both concrete and sponge, stumbling, fumbling, cramp in toes and arches of both feet, painful spasms in neck, fatigue, cognitive fog. The pain is both sides of my body, and widespread.

So is Fibromyalgia FND? Functional Neurological Disorder?

[TheAuthor]

WOW! That is a tough one and I am going to be completely honest with you and say that I have no idea? I had never heard of FND until tonight. I have looked it up on the most reputable websites that I know and the description of it is the same as Fibromyalgia but by another name.

I want to genuinely and sincerely wish you all the best of luck with finding the answers tho this question.

All my hopes and dreams for you

Ken

[Chimbelina in reply to TheAuthor]

Thanks. . . yes it was news to me too... sounds like a holding station and a blanket answer for all symptoms that are as yet a mystery to doctors.

[Chimbelina in reply to TheAuthor]

The site neurosymptoms.org is pretty comprehensive in describing FND and both Fybro and CFS are both included on it. They also try to dispel the myth that these illnesses are 'all in the mind' but rather a software malfunction.

[TheAuthor in reply to Chimbelina]

Thanks for the link it is a very interesting read. I like the idea of it being described as a software malfunction! I have been diagnosed with both Fibro and CFS although my GP does not think that I have CFS as i am always active.

[Chimbelina in reply to TheAuthor]

Aah. . My son has ME/CFS and is largely house bound which is hard for a 21 year old who was previously physically active. I have Fybro and other FND symptoms including fatigue but the fatigue is not as severe as his. Yes I thought the Hardare/software analogy was good. And they also describe the mind/brain symbiotic influence on ill health. In the great debate on ME/CFS people loose sight of this and polarise to one side or another while I sit comfortably, with an open mind and observe how the debate unfolds 😐😏

Like you my son is always active but in a sedentary way. Limitations of energy have forced him to work with what he now has so that if and when he recovers, he can re enter the mainstream well prepared. He keeps positive no matter how I'll he is feeling. I notice you are very active on the site helping others 👍🏻. I think I was one of the earliest members when it first started!

[TheAuthor in reply to Chimbelina]

I am so genuinely sorry to read that your son also has this, and I truly believe at such a young age that it must be worse emotionally for him? I really did enjoy reading the link as it gave what I thought was a balanced / open approach which you would not find on other websites.

Thank you for the compliment it is sincerely appreciated. I have noticed a lot of changes since I came along to the forum just over a couple of years ago, and now with Emma gone it is all change!

All my hopes and dreams for you, and your son.

Ken

[Chimbelina]

Thanks for replies so far... its all a mystery

[Joanna1973]

I've just been told that on top of fibro and arthritis that I have neurological damage to the pain receptors in other word no idea or I've been misdiagnose or have all but took me changing doctors to find out he asked me what was wrong with me and I said no you tell me you got my file .

Now I'm being sent to Manchester pain centre to see a whole new set of doctors and starting from scratch .

I was having pain injections in my lower back shoulder neck and in my scalp then the NHS stopped it all now I'm on fentynal patches 100 micro gramm as well as a cocktail of other meds just to get through the day .

I'm lucky I have a new doctor who is kicking ass and it was his suggestion to join this group and if I phone when I'm bad he phones back I don't have to stress having to get to the surgery .

And thank you all so much for welcoming me xx

[Chimbelina]

It sounds as though you are in a difficult place right now. I do hope the pain centre in Manchester can help you to manage your pain and the new doctor is able to reduce your symptoms to a tolerable level. Take care

[kittyfisher]

Hi chimbelina i haven't been on the forum for a long time but noticed your post when i did go on. I was diagnosed with fibromyalgia august 2013. 10th of april 2014 i went to bed as normal and woke up the next day a completely different person. Tremors, pain, co-ordination completely off as well as my balance and walking. After a stay in hospital and an mri scan of my brain done I was sent home with steroids and told i would be fine. If only that had been right. Things didn't improve had to use crutches to walk, went through a year of physio which did no good and test after test. I had a top neurologist who I will say was absolutely fantastic with me. He was stumped and sent me to a neurologist even higher than himself. I saw him more tests done, examined and a lot of talking. He told me he would be in touch and true to his word a month later I finally after nearly 2 years was diagnosed with FND. I was told the messages from the brain dont work as well as they should. Things have been really tough. mentally was actually the worst and I've only just recently come to terms with it all. For me i needed a reason why but they just dont know. I was a very active person battled through whatever was thrown at me and I tried my hardest to do the same through this but some days it got the better of me. I am in a wheelchair though there is days I can walk about the house not very well but I do whenever I can. I can't walk outside its completely different from indoors. I take each day as it comes and battle on nothing else for it. I can't write like I used to which is something I always took pride in, I suffer alot of numbness in my arms and legs, alot of pain but the worst is the feeling of my limbs being on fire. I could go on about it all day but I won't. It's so good to talk as nobody around me really understands how hard it is. I'm now waiting to go into the royal hospital in Belfast for a stay where their going to try intense physio etc but the way i always look at things is telling myself there's always someone worse off than myself. My inspiration to carry on as best as I can is my mum whose been battling cancer for 2 years now. She goes through her day the same as she did beforehand and I will do the same. It can be very tiring and today i have no energy but i am hoping to start a new jigsaw. My mum got me into them to pass my day and now I'm hooked. I hope your doing ok chimbelina. Take care. Kittyfisher xx