Newly diagnosed and feeling overwhelmed.

[Beaglemum]

So yeah, I find myself with very poor mobility and lower back pain which has seen me out of work since Sept '14, with a brief return to work in Nov '14 before I lost the use of my left foot in December 2014. That brings me to where I am today. Now for the long history into me and my body!

Painful lower back when upright began in my mid teens and saw a chiropractor for a couple of years for that around early '90s.

Along side this knee pain became an on going symptom/side effect, hurts to have knees bent when kneeling and crouching on floor hurts within 30 seconds of pins and needles in feet and legs which increases to heat.

Damaged lateral ligaments in both knees early 2001 (ran up a flight of stairs left knee gave way, on crutches for 6 weeks and did the right leg in trying to get in a car on crutches!!) crutches for almost 3 months.

Physio at the time got the consultant orthopedic to do an mri which showed also small tear in meniscus. They noticed my knee caps where out of alignment also and was creating a new groove under knee cap. Repeatedly had knees taped up and they gave up after a while trying to adjust the knee caps. They put it down to Chondromalacia Patella and said re adjustments to life would make it bearable..... I was put on various meds over the years, co codamol, naproxen, gabapentin. noretriptyline.

Over the next 10 years I put up with knee and back pain. in 2012 I saw the pain clinic who gave me a left sided injection of steroids and anti inflametaries in lower back and in 2013 he did both sides a lumbar sympathectomy and burnt/cut the nerves to knee.

in the last 3/4 years Ive seen 3 chiropractors who all told me to go to GP and be referred to an Orthopedic team for the back pain. I also saw 2 osteo's who also said to speak with GP about it. Saw GP 3 times about the pain and what other professionals had said and each time refused a referral/referral was never sent.

I can remember around 5 years ago at work I would have trouble with my hands trembling and writing care plans. Difficulty changing bed sheets/duvets as fatigue in arms. I also had the odd sensation of not feeling my left foot below my knee and feeling unsteady on it when going up and down kerbs. At this point I was walking around 15 miles a day both with work and dogs. Mentioned to gp at a review and she just said to monitor it.

1.April 2014 my hands began to buzz and tingle as if I had clapped my hands together very fast and hard. If I put them in water-hot or cold it was like they were burning. Had trouble again with fatigue in arms with showering clients and making beds.

some time in May '14 my left leg began to buzz like a mobile phone was going off in my thigh. This continued daily to October. It was worse when driving and holding the biting point and Id often stamp my foot in footwell to get the feeling back-it wasnt numb as such but asleep??

Along side this my memory was getting worse, couldnt remeber door codes, dates of birth for clients and names of medicines etc.

Never had that in the 8 years previously in the job. I also began muddling up words and saying the wrong word completely not just a similar word but one that made no sense. I also stutter somewhat trying to find the right word and can forget what I am saying mid sentence! Husband notices this the most and I do it daily. He says I get a brain fog. I am more aware of it when I am tired.

saw a Gp in the August '14 she said I needed a neurologist and orthopedic referral. She first noticed delay on reflexes and moving toes upwards on Left foot

Sept 6th had mri, I had been on a dog walk that day and found it very difficult to keep up with the group of us, even a lady who was 3 days overdue was way ahead of me lol!!! First time I really noticed a struggle walking a distance I had done many many times previously.

Sept 7th woke up feeling I had fallen downstairs, my whole pelvis and sacrum hurt as if bruised and mobility was poor. Left leg felt heavy and got heavier as the day went on. By 3pm I couldn't sit or lay down comfortably and leg was almost impossible to move. Ended up A&E and after a cocktail of drugs I could lay flat on my tummy. They noticed the lack of movement in left foot but all they could offer was if I couldnt wee or became incontinent go straight back.

GP signed me off for 11 weeks and prescribed tramadol 100mg twice a day. They took me off the co codamol and gabapentin I had been on for the previous leg pain.

Headaches began 18th sept and I initially blamed the tramadol, came off all meds for nearly 3 weeks to see if made a difference, none made. GP prescribed Sumatriptan which didnt help and Amitriptyline which helped a little.

Back pain on going throughout, leg began to ease up after 6-8 weeks and physio.

Returned to work 9th Nov, leg began to get heavy and buzzing again, by 5th Dec I woke unable to move toes or ankle. Spent 4 days in hospital who ruled out lower disc problems and it was "unknown" discharged and went private to see Neurologist.

It seems Ive had lots of little bits going on over time and each time its got a little worse or lasted a little longer. this time since december is my longest bout of fatigue and pain.

Private neuro did a brain and full spinal MRI. results is no tumour or ms. He has said its an infection which has wiped out body and will take time to recover. Hes optomistic I will recover fully. GP says I may never get better!!

Before learning to drive '13 I had eye test in 2012 and needed glasses for reading and distance was fine.

I had my eyes tested again in July '14 as 2 years were up, no change to prescription.

When I was in A&E in the sept they mentioned getting eyes tested but I cant remember why but I remember telling the optician they had told me, maybe I was getting headaches then?

That optician wrote me a letter to take to gp asking to see the ophthalmologist but that never materialised and when I saw GP last thursday (12/02/15) she found the letter that had previously been missed by the gp and promised to send that asap and chase up mri report. 2 days later they had sent a letter and I am booked in to see the eye clinic team on 24th Feb at RSCH!!

Neurologist noticed eye issues but didnt explain them he just kept repeating the tests of focusing on his fingers and moving things.

On his report letter I got he wrote "both discs pale, unsustained gaze evoked nystagmus to the right also seen on fundoscopy"

Went for another eye test on 30th Jan after seeing neuro who agreed with what he has written in letter and to discuss with GP.

Ive noticed cars jump when driving and things moving cause me to refocus a lot and can be a little hard to judge distance. I see things out the corner of both eyes jump around such a phone screen or stair gate bars. If I wave hand in front of face it seems theres several hands in slow motion causing a shadow effect. I cant read this text with just right eye its too blurry but left eye is crystal clear. Optician said im no longer allowed to drive.

I saw GP again (19th feb) and she says i am puzzling and she needs some time to go away and really think about what to do next or treat this. So for 2 weeks ive to keep (another) diary of everything I can and cant do. my pain score and mood. Then see her again in two weeks and go from there......

My biggest concerns are no one knows what is wrong other than saying its an infection. But they never say WHERE it is or WHEN i got it. They say its since I woke up in dec but what about the weakness is September? They havent treated me with anything for an infection and Ive had LOTS of bloods tests and not one has shown infection. Including whilst in hospital.

Ive had to quit my job as a carer as I cant drive and I am now needing a wheel chair if I leave the house as I dont have the strength to walk far and my back pain is too intense. I have to sit leaning forward to ease it. I also cant raise legs properly to walk, I shuffle and swing my pelvis side to side rather then hips frwards and backwards (normal walk)

Im 34 years old and a mum of a teenager and this has changed all our lives. husband has to fill in the gaps for me when im strugglign to think and speak and he needs to remind me about meds and support me with household tasks.

GP sent me a letter saying she thinks my blood glucose is fluctuating too much and causing all my symptoms and if I get that controlled I'll be fine!!! So now is it no longer an infection and its insulin based???? I am so fed up. I kept a diet diary for 3 weeks and saw her yesterday where she decided my diet and glucose levels are not related at all to my symptoms! Hallelujah

She has upped my pain meds and I did find a difference in the strength of the pain yesterday. Now I am just waiting for the neuro physio appointment on the 24th. I am hoping they will have more of an constructive diagnosis and be able to help. But im not getting my hopes up yet!

My biggest fears: This is as good as i am going to recover. That it returns, it returns worse.

Its changed my life dramatically and i am struggling to accept that, Ive always been mentally strong and thinking something may actually beat me makes me cross/frustrated/scared. Gp acknowledges my mental strength, she knows some of the things ive been through. Im often told by people they wouldnt cope with things ive done/been through but I dont know any different so I cant compare it to them.

I also think theres nothing I can do to change whats happened or on going, I cant control others and their actions I just have to live with whats going on and either let it beat me or fight it. Maybe I have a stronger fight mode? Maybe im too logical lol.

So far, life has thrown at me: losing two friends when i was 15, one to suicide, another in a freak farm accident where I kept my horses.

Becoming a mum at just 17. Living a very destructive and chaotic 7 years in a relationship with my sons dad. Watching him destroy himself with drink and drugs. A suicide attempt by him pushed me into leaving. Fighting him with solicitors and moving away from my job and friends was awful. Coping with a 6 year old angry with the world.

Embarking on an infertility journey which lasted around 7 years and was unsuccessful. My biggest failure to date.

Losing a very very good friend to cervical cancer when she was just 26 made me appreciate life so very much. As does my Sister in law who lost her battle with skin cancer and eventually a brain tumour after a 3 year fight. She never moaned, she just charged at each hurdle and had the **** it attitude that sparks me on into digging deep and carrying on.

I lost both step brothers aged 18. One to suicide and the other 3 years after in a car crash.

Ive "survived" my husband having a battle with depression and finding out he had affairs. We separated for a year and I "survived" living on my own whilst these health problem began last year.

Each time one of these events have happened its just been a case of I cant change any of it, get on with it. Its almost like reading a book when reading those back, it doesnt feel like my life. But since I was 16 its been a rollercoaster and maybe life has caught up with me?

There seems to be a battle of the wills. Between my stubborn streak ( I will call myself this numerous time, Its my strength and weakness) and my can do attitude. I am, at the best of times, my own worst enemy. Equally of strong voice is my spine and its constant whinge in my inner psyche. It can either whisper in my ear last thing at night, Im hurting. Or it can yell so loud that no other voice, thought or feeling can over ride it.

At 4 am this morning, I found that voice screaming so loud, I laid there trying to describe pain in a real format. The only likeness I can give it is this.

Its like standing in a arcade, the type you recall as a child. Loud machines everywhere you look, alarms wailing and bells ringing to make everyone look at the winner.

Each machine is lit up in neon colours, huge light bulbs flashing and blinking, almost trance inducing.

No matter how much you screw your eyes tight shut and cover your ear's, all your senses are overloading. You cant escape the noise all around you. Even if you curl up tight in a ball. Its still there, waiting for you to open your eyes.

Thats what chronic, unrelenting pain is like in your mind.

Its all consuming and you can't shut it off or out. Its exhausting.

There's neon signs flashing, arrows pointing inwards screaming pain, its as if you a third person looking in.

Maybe its the wine I had with dinner talking, maybe its the hours ive sat here thinking of ways to describe it?

Dh is snoring beside me, for once I'm jealous rather than cross. I wish I was asleep.

Ill post the remaining bits in a new post. xx Sorry its SO long.

[Beaglemum]

Which leads me to yesterdays appointment with my neuro physio. I jotted it down yesterday in my blog so i have copied it all across:

If this doesnt make much sense its cos my head is rather foggy at the moment. A combination of really being pulled about (in a nice way!) with the physio and being made to carry out tasks etc and pain going off like a siren in my head and the meds ive just taken to try and ease it.

I am also a snuffling,snotty mess as I feel a lot of things have come and hit me like a bus today. So a good old cry will solve everything.

I came away from the appointment feeling once again dismissed and let down almost, she gave a different opinion and even the letter the neuro has sent her is different to the copy I got!!

He's not mentioned the infection at all as a diagnosis. Instead he has said its Functional Neurological (or something functional I cant remember) She wrote down a web address to go home and read and she felt I would connect with parts written.

I text DH the link to the website Welcome - neurosymptoms.org and after a few minutes I got a text back saying Its me, the entire page is exactly me and everything I have ever said or mentioned. All in one place under one name.

I didnt believe him but I have sat down and read through all the symptoms and all the knock on effects of each and its like reading things ive posted here, things i have said out loud-Dh particularly pointed out the spasms I get which I liken to the feeling of someone walking over my grave is written exactly that way.

"Most people have had the experience of jumping or jerking as they are dropping off to sleep. These movements are called 'hypnic jerks'.

Most people are also familiar with the random body 'shudder' that some people get. This is sometimes described as 'walking on someones grave' because of the way it moves quickly through the body". this is what I get daily. Ill link the video of it later.

It lists everything,

the eye problems

gait problems walking with one stiff leg being heavier

the small steps taken as if on ice

the left hand side being the more commonly affected whilst the right is uneffected.

functional tremors

dissociation and zoning out

pain

fatigue like CFS

headaches

slurred speech and forgetting words

Fleeting sensations - including twitches, buzzing sensations, electric shock sensations

to mention just a few! all the above I have mentioned on here previously.

I cant begin to describe how it felt reading something which people are now thinking fits what I have and that it actually fits better than "infection" I just burst in to tears. Ive said to gp I feel u all think its in my head, theres a whole section on this website that says you feel it is BUT it isnt. Its very real. The pain is real the symptoms are real.

Its all the symptoms of a real neurological disorder such as ms or stroke yet physically theres been no damage to the brain or nerves. But the brain (for unknown reasons) interprets the body in to thinking it has and giving u the symptoms.

It also mentions how to deal with people and jobs/benefit applications with this disorder.

It may be that your main problem is fatigue in which case calling the problem 'Chronic Fatigue Syndrome with functional neurological symptoms' may help define it for everyone.

If your main problem is pain, calling the problem 'Chronic Pain with functional neurological symptoms' may help define it

I kinda wish I had known this prior to the applications sent off but I will call them tomorrow to update.

She also pointed out GP really should be following the neuros letter re the medication and up my amitriptyline massively. She said that would make a big difference. Shes also said to ask her to be sent to a pain clinic. So I will write a letter to gp and pop it in tomorrow. I dont see the point of another wasted trip to her when I can just put it all in a letter and ask. Ill keep a copy as well so if this referral or meds doesn't improve I've got proof I asked for it as well as neuro.

She kept focusing though (this is my one complaint, admit it, you knew there was one coming lol) on saying i waddle like a penguin as im convinced my body is too weak to hold me up and im scared of falling?? I said thats not something ive ever thought would happen.

Sure my legs feel like jelly but as i said to gp I dont feel ever to the point where i would collapse or fall. But she kept insisting I was adjusting my walk to protect my leg?!

I said Ive walked with a waddle 5+ years.

It used to take about 3 miles before it really kicked in with pain and fatigue or by the end of a really busy shift but not once was it fall related its always been pain.

My knees were sore I walked funny which hurt my back..... nope she would bring up the "dont be scared you'll fall" speech when standing. Even mum tried to explain it but she was fixated on it. The orthopedic I saw some 5 years ago said its my back causing my unusual gait. Hey ho. She was shocked when I told her it was one of the orthos from the same hosp we were in....I also got slightly shirty when she said the pain i had in foot which has now gone has left me thinking i need to walk funny to avoid hurting it ( my foot never hurt) and if I had been seen sooner it could have been corrected before it got this bad......I pointed out ive waited 14 weeks for this appointment and not through want of trying either.

I dont really know what to make of it all. Ill just keep digesting it I think for a few days and go from there. Knowing what I have going on is real is a huge relief. Knowing it may or may not improve and has turned my life upside down is harder to accept long term.

1. You have something common – you are not weird

2. You do have something genuine – you are not imagining it

3. You have symptoms that are potentially reversible

4. Its not your fault that you have these symptoms

5. But you will need to put some effort into getting better

The principles of rehabilitation in this situation are to recognise that you probably are doing a bit too much on the good days and not enough on the bad days.

Set yourself a modest task, it might be a walk to the shop, it might just be a small job in the house. Make it something that is a bit less than you would do on your best day but more than you would do on your worst.

If you stick to the SAME level of activity every day, hopefully you'll find that after a while, perhaps a few weeks, this SAME level of activity may make you just a little less tired than it did before, or cause just a little less pain.

You will still have days when you feel as if you're "back to square one". But if you're improving slowly overall, thats the main thing

So, Ive been given some more core strengthening exercises to try and do 3 times a day. I see her again on 7th April. In the mean time, who knows! I just feel so overwhelmed x

[cathys20 in reply to Beaglemum]

Hi, Just read your post. So glad there is comfort in knowing you are not ALONE. I remember how I felt when I learned I too was not alone. And YES it is real. It is the why that is hard. From reading your posts I believe the predecessor to this was your back problems at a fairly early age. I believe there is always a predecessor, we never just get this without something having set it in motion. It is not the same for all of us. Infection, spinal problems, brain injuries, something always sets it in motion. What I would love to hear is a story of someone who got better from it. Still have not heard that from anyone. Prayerfully one day, not much hope at this point that it will be in my lifetime, But I know someday I will get a new body, one that is completely whole again, that is when I go home to heaven. Must say I long for that one, this one is worn, but still moving and Praising. God Bless you today, Cathy

[mvrsports]

"1.April 2014 my hands began to buzz and tingle as if I had clapped my hands together very fast and hard."

showoff

[geordie-girl]

I know what you are going through, I sympathise with you. Have you been on the FND sight there is alot of people oin the same boat who would love to chat with you. If you want to talk I am here for you. Take care, Sending you love and gentle hugs

[VivienneWaterworth]

fndhope.org and also the FNDHope Facebook site at facebook.com/groups/4461419... ... there are also a number of other good Facebook groups...check some of the out and find one that suits you.

Unfortunately your story is so typical of a journey into FND. Infection, lots of trauma in your past (tho not for everyone!), being the strong minded, often well educated professional who just gets on with life in spite of all the setbacks, niggling medical problems, including some that imitate auto immune or neurological issues, overwhelm, meltdown. Hmmm...that sounds like me too. Welcome to our world.

Of course that description describes only one of many groups within the FND/CD group. There are also the younger people who have an entirely different history, so for anyone else reading this, please don't dismiss my description when it doesn't describe you.

I have seen a number of people who have 'recovered' or had several years of respite from this disorder, including myself. I got it in 1996, was never diagnosed with anything, though I suspect the medicos were labelling me with Conversion Disorder behind my back.

I recovered 1999/2000 when I closed my business and moved interstate, and also had numerous 3-in1 Concepts (kinesiology) sessions and also taught myself EFT (Emotional Freedom Technique - free instructions all over the internet). I stayed clear of any hint of CD/FND for 6 years until everything fell apart (husband in hospital for a month almost dying of an obscure rare lung disorder), both daughters laid up with serious medical issues (back injury for one and serious late stage pregnancy complications and living in my home and requiring a lot of assistance with the care of her toddler for the other) and me getting a diagnosis of uterine cancer, all in the space of 4 months. I had no-one left to look after me when I came home - I still had to be the strong one for everyone else...and I caved in.

I then recovered again when a faith healer I didn't know stayed in our house for a week (he told me that he didn't once pray for me to recover, but I did anyway!)...and was Ok for another two years until I had an extremely painful recovery from anal repair surgery. I passed out 30 times in 7 days, every time I passed wind or anything else. I coped during that week, and for the next fortnight even though I had frequent flashbacks to passing out. When I starting having flashbacks to the flashbacks, I lost it (PTSD) and my seizures came back with a vengeance.

So. yes, you can recover. You can also have your symptoms reduce to a manageable level so you can get on with your life. Unfortunately you have to give up your unsustainable previous kind of outer strength, and learn to develop a different kind, one that doesn't rely on adrenaline, constant awareness of your surroundings or the insides of your body, etc.

CBT and Mindfulness exercises can help you to cope with your new life, and help make the transition to a healthier attitude to your current situation. Look for a change of direction, to a calmer, more peaceful lifestyle and career. I hope you can find the help you need to make this transition.

[Beaglemum]

Thank you all so much for taking the time to read and reply, that does mean a lot x

I extend my thoughts to those also walking this path and going through the minefield of the health professionals. Its a comfort to know I'm not alone.

I think its also good for my family to be able to read this forum, it helps make what I have more real for them and maybe more understandable?

I'm feeling much more positive today, I dont feel I'm grieving for my old life as much anymore.

Now I know what lies ahead I can adapt and move forward. If only its as simple as that sounds hey....

I know mentally I was in a low place in 2012/13 when I lost 3 favourite client's in the space of 6 months, I was their end of life carer after being their carer for 5 years, day in and out. They were like grandparents. In those 6 months I also lost my nan and sister in law. 5 funerals in 6 months and 3 in one month alone.

Ive applied to join the fb

groups, so that will be good. I dropped in the letter to gp so we'll see what happens next. Thats it really. I'm trying hard not to push myself, its the guilt that goes with it though isnt it? When people have to do things for u and I feel guilty how much husband has to do for me which makes me do more and then prolongs this 'down time' vicious cycle isnt it.

Take care each and everyone xxx