A Medical History of a 43 year old diagnosed with Functional Neurological
Disorder (FND) after Chronic Fatigue Syndrome, Fibromyalgia & M.E Myalgic
My second spinal lock of the night and Iím in mortal agony with it!!
😡 whatís the point of coming off a drug that actually helps you with no other
reason than you gain an average of 6lbs every 5 weeks!!
Health comes first, I get that but thatís a lot to cope with while trying to
stay a relatively decent size 😪 both Lyrica &
Neurontin (pregabalin & gabapentin) the only 2 nerve pain suppressors
available make you put on weight!!!
My Dr of WGH seem to think our bodies have some sort of "reset button" and if I
come off the majority of the meds that are doing the work of relieving my pain
for me then my body "might" reset itself (which I would love to believe it to be
true but I believe him right).
So in the meantime, while I drop and drop, slowly but surely my nerve pain is
going to go through the roof, my spinal locks will continue and get even worse
and all to hope for a reset button 😕 I don't know if I have enough fight left
in me to do this as I know the amount of pain that's going to come alongside
this "experiment" it'll be hell on earth.
Feb 20 Disassociation attack and not only was she able to supply me
with the right medication and shove the nozzle into my mouth lol to swallow my
tablets! But her talking to me about specific watches and all things nice, my
attack had quickly passed within just a few minutes leaving my body quite limp
Jan 23 As I regulate my Pregabalin
back to my usual dose, my spinal pain seems to be reducing which is excellent
Iíve got an ulcer at the back of my mouth. I normally get ulcers in my mouth and
under my tongue which are quite painful especially when I bite them. --- (My
throat has been ďclosingĒ slowly since the beginning of the week, it first felt
like I had a ball of stuff stuck at the back of the throat whenever I swallowed,
fast forward to today, I find it hard to swallow, Iím sounding hoarse and I
cannot eat a banana simply because of its size 😰 I checked this first on the
FND Hope FB Group and it
would seem a normality for many people who choke as they are eating!! )
Jan 14 2021 I have an Occupational Therapist
(OT), they are applying to the panel to make alterations to the house
that will make it easier for me but the alterations they are deciding upon like
a through lift from one room ie: living room into bedroom for 2 people and a
wheelchair is just crazy! The outdoor lift as well they are talking £34,000, we
are hoping if we create an extension in our garage to use as a bedroom with
ensuite wetroom we could use the value of the rest to go towards that, it's a
lot of money!!
Iíve come to the end of my journey...
No more hospital bed and mattress as they sadly donít work for me and my spinal
locking and temporary paralysis 😖 up to 7 episodes in one night.
No more OT intervention, Iíve got a V
pillow, a foam wedge, a perching stool and a hand rail/bar to help me out of bed
No more Support Work as my care package has been completed, 31 hours a week over
7 days care.
My GP cannot change my medications as Iíve literally been through them all 😰
Professor J from W G Hospital and his team couldnít or wouldnít treat me...
My Husband works long hours and he worries for me every day, I love him dearly.
Iíve never set foot out the house since sometime last year.
I know there are plenty of people perhaps with less than what Iíve been given
but itís just a massive shock to realise thereís nowhere left to go, no one left
to ask for help, Iím completely on my own now and I feel absolutely devastated
and frightened 😱 itís a feeling of hopelessness...
Iíve exhausted all NHS apparatus and thereís no more help to gain 😓 this has
put me back a lot and I need a social worker to help me/ fight for me/ maybe
increase care hours etc anything to help -- a self referral -- keep phoning to
ask for a re-assessment -- hoping to hear back sometime next week
Feb 2020: I had 7 episodes of spinal lock,
night before last (the most Iíve had in one night) each time leaving me
temporarily paralysed until I can move the
electric bed to get me out of the painful lock position... the bed isnít
fulfilling my needs in fact itís making it worse so sadly it has to go back and
Iím going to have to buy something for my spine in my old bed
Functional Neurological Disorder (FND)
ē I spend 98% of the day in bed
ē I never or rarely go out
ē I cannot walk far without a wheelchair
ē I have the appetite of a sparrow
ē I cannot watch TV or read a book because of sensory overload (this is when my
brain starts firing back shocks and is so painful)
ē I become both light and sound sensitive
ē I have an AMAZING Hubby who does all he can to look after me
ē I have 2 amazing Care Givers who also look after me 7 days a week
ē I am no longer able to walk my dogs (any distance)
ē I am in excruciating pain each and every day
ē I struggle with balance, muscle weakness, nerve endings firing back and speech
on a daily basis
Lysine --- R Center Homeopathic 140 pounds + 65 pounds
MultiVitamins + minerals
Dec 2019 With a little help from my beloved friends - I had a private
biological hair strand test done and they have advised me of having
glandular fever caused by having the
Epstein-Barr virus 🦠 (please note this is the
second time in my life so its non contagious) destroying my immune system
leading to symptoms of ME/CFS but also going so far for so long itís now causing
a neurological disorder ---
taking the corrective
Dec 2019 Went to an osteopath and
got a twisted vertebrae and rib repaired!
my electric wheelchair goes back today simply because of a new symptom founded
under FND Iím falling asleep immediately even when eating S has had to wake me
up when Iíve had a mouthful of banana when I have fallen fast asleep
When I fall asleep I wake up sometime later choking
I canít breathe and I have a large ball of phlegm in my throat thatís too big to
cough up and too big to swallow immediately you can hear the sound of my throat
as Iím trying to get Air into it I am wheezing and sometimes it can take awhile
before I can finally rest and then the phlegm starts to subside but it is so
scary I am now afraid to go to sleep at night because I know itís going to
happen through the night Iíve counted five episodes in the last two weeks I have
my hospital bed raised to help me breathe normally through the night but it
Aug 2019 Apart from small steps round the house I am a permanent
wheelchair user because of my third diagnosis
FND or Functional Neurological Disorder I see the head of neurology dept
Professor - I had 2 Drop attacks and non
epileptic seizures... ---- a whole new set
of drugs this includes
- Oramorph morphine -- stopped Dec 2019
- fentanyl patches Ė 25 mcg/hr Ė
increased to 50 Dec 2019
- Pregabalin put on Ĺ stone treat
epilepsy, anxiety and nerve pain. Stopped Dec 2019 too much weight gain
- baclofen muscle relaxer and an
- Citalopram treat depression increased
from 40mg doubled Dec 2019
- versatis medicated plasters. ( relieve
the skin pain - contains lidocaine, a local analgesic)
- ? for Thyroid
My primary illnesses are Fibromyalgia & ME
But I don't understand what sets my seizures off ...?
Read about and watch the Conference video segment at 5hrs 10min: --
OI (Orthostatic Intolerance) Standing Upright
vs lying down -- symptoms include Syncope (
a temporary loss of consciousness) -- so lie down as often as possible --- and
readily treatable with various medications
Living like this is hell on earth (for me) I know there are many people out
there who are dying or are suffering much worse, trust me when I tell you that I
think of them every single day...
On one hand I am blessed to have a life and to be able to wake up every single
day but imagine waking up every single day and on that day you relive the terror
and the horror that has torn everything from you, leaving you with severe
debilitating pain, electric shocks that make your muscles spasm and tremor and
allow the nerve endings to fire back creating a wave effect of painful
electricity running up and down your legs and by morning you realise the damage
itís caused because of the pain of pulled muscles you feel everywhere all over
By the time the next day arrives, if youíre lucky you havenít had an all over
body wobble or uncontrollable shaking that you cannot stop that exhausts you to
the point that you are simply unable to move or even talk...
On the last day before it all starts all over again you find yourself so weak
and tired that simply trying to get up to relieve yourself becomes an absolute
mission, your body so incredibly weak you are unable to talk let alone lift
whatever it is you need to eat just enough of to be able to take your
Now if Iím very lucky there may be an extended day sometimes two almost to the
point where I feel I could maybe get up and do something crazy like housework!
To then bam 💥 it starts all over again because of over exertion, yep that
laundry load I put into the machine has caused this one, sometimes I donít even
need to do anything before bam 💥 it starts all over again and again and
again.... and they call this living? I call it only existing! Would I put an
animal through any of this? No way Iíd do the humane thing and put it down.
All on top of one another 😔 I truly want it all to end.
I had my appointment with Professor yesterday from WGH .. he is the top
specialist of FND .
I spent the full hour re-capping on everything his lovely colleague LD had asked
me, (she assured me that I would be under their team of
He said his colleague, as great as she is, is sometimes too quick to tell people
that they will be under their team.. she had already referred me to Dr A C their
Professor advised me at the end of our session that their diaries were all full
and so is Dr Cís therefore he would be referring me to the A Ae Clinic (the
general clinic with at least half a year waiting lists) he spoke about receiving
psychiatric treatment on a one to one basis and GRADED
EXERCISE THERAPY with a physiotherapist as ďthatís what they doĒ ...
I was in floods of tears leaving his office, he didnít stop for one minute to
ask why I was crying or if everything was alright?
Towards the end of our session I could hardly sit upright or even speak so he
knew how much it took for me to even manage that appointment...
I had such high hopes given to me by his colleague only to be shut down,
discharged and sent elsewhere with a long long waiting list, basically he didnít
I had a lot of debilitating illnesses that all overlapped each other
Fibromyalgia, ME & FND which he confirmed the diagnosis of 😓 he advised me to
come off my medications slowly, itís taken
me 3 years to find the right medications that finally seem to help at best with
I left feeling fobbed off Iím no longer part of their elite team of specialists
it was nothing short of heartbreaking
Taking 400ui of folic acid
These are the natural supplements I
take already to try and combat the symptoms of M.E & Fibromyalgia:
Magnesium: contributes towards normal muscle function, nervous system and the
reduction of tiredness & fatigue.
L-Glutamine: anabolic support.
Probiotic Max: improves digestive health.
Omega 3 Fish Oil: helps combat inflammation.
Ribose: helps to restore ATP the bodyís natural energy source.
Fultium D or Vit D: helps the body absorb calcium.
Folic Acid: helps the body produce and maintain new cells. In
particular, red blood cell formation.
I am about to also try this Turmeric supplement and I am up for
2 DHC Continous
feeling myself go numb just to get me through the night
What is a flare? 🔥
My whole body starts to burn up 🔥 itís such a horrible feeling, then my muscles
will get so incredibly painful and weak Iíll be unable to move them without
causing severe pain and Iíll have no strength 😪 and then itís the inability to
think properly or string a sentence together that follows ... Iíll be unable to
stand or remain upright for any length of time, things like light and sound will
really effect me badly too!
This flare can last anything between 1-3 days consecutively 🔥 where Iíll remain
bed bound only able with the help of my husband to go to the bathroom or wash.
This is a flare 🔥
This is Fibromyalgia & M.E combined.
How do I cope? During the 1-3 days initially I take enough prescription
medication to knock me out but when I wake again the flare is always still there
🤬 it decides when it goes, nothing other than continued complete bed rest rids
me of a flare, the bed rest also needs to be for a further 2-3 days... 🙄
But I know after a few days of rest the flare will ease off and I will have
better days again 💕 these better days consist of being able to move around the
house or into the garden, being able to do my maximum 30 mins of light
housework, bathing or seeing to the boys each day is by far the best my days can
get 🙏🏻 🤗 and yet Iím feeling hopeful.
Nov25 Iím back on my DHC Continus
Diazepam (emergency use only) & Voltarol Gel
tonight and Iím already feeling so much better the
morphine wasnít for me, so emotional, anxiety
was through the roof and the pain unbearable but Iím lying here now almost pain
Nov23 Iíve been really emotional today I have a flare up of fibromyalgia (due
to me damp proofing the bedroom) so thatís my own stupid fault but my
endometriosis is kicking in
Nov22 morphine 5mg slow release tablets
and liquid morphine 10mg for breakthrough
5ml liquid is every 4 hours
Nov9 Chronic Fatigue Clinic at A A Hospital
Nov6 I have large lumps at the
base of my spine which you can feel through the skin.. the majority of my pain
lies within these ďlumpsĒ
Itís like my lumbar region is bonded together and unable to move freely
Hospital tomorrow (Rheumatology) Iím in for
2 hours itíll be test after test
Hospital Thursday afternoon for Endocrinologist
And my GP Thursday mid morning
For an INCREASE in pain relief -- Iím averaging 3-5 hours sleep
Oct 18 Dihydrocodeine 60mg twice a day
she agreed they were painful lipomas but to
have them removed would damage nerves and muscle tissue and cause me further
pain and also they would only grow back again
5% pain from abdomen -- 85% from back
Oct 5 2 months ago my GP had put me on
Citalopram (anti depressant) they increase
PROLACTIN in the body and what do I have in my brain??!! A
taking completely natural supplements
like Magnesium, 5 HTP, Omega 3, d-Ribose, Apple Cider Vinegar, Vit D & Aloe Vera
Juice allowing my body to finally detox from prescription meds.
Sep6 2017 I've reduced my dihydrocodeine
from 8 tablets a day to 2/4
I've reduced my pregabalin (is a
gabapentinoid or anticonvulsant ) from 450mg to 350mg
My diazepam is only in an emergency not even
once a week
take some Diazepam(valium) my whole body is
having muscle spasms it's so painful
aug 2017 this is the first time in a long time I am taking my
Bromocriptine medication regularly
Aug 2017 I understand about ATP
etc I just got to find ways to help myself
I'm on Citalopram (antidepressant ) now I
find it's helping me
Trying to self lower my pregabalin (to treat
epilepsy, neuropathic pain, fibromyalgia, ) due to horrible night sweats
I'm still on diazepam when I'm feeling so
I'm also on a combination of dihydrocodeine
and paracetamol for the pain but it comes at
a cost of severe constipation
thankfully I've been awarded PIP it's a form of benefit
which is indeed helping us greatly, after a medical assessment I've been awarded
this for 5 years with a review in 4 which is a long time for this...
July 2017 I've been diagnosed with Fibromyalgia & M.E Myalgic
Encephalomyelitis -- I can hardly take much more,
My cause is most probably chemical imbalance (pituitary
adenoma) or bereavement (I lost a dear friend last October)
Since March I've been either house bound or bed bound , there are days I'm in a
lot of pain or I have no energy to move, it's been so tough for S
I burn up all of my energy in a day just bathing!
I've laid in bed crying unable to move, S is at work and there's nothing I can
do about it.. it's been what can only be described as hell to me, I've been
through some tough times in the past but this really takes the biscuit...
It's all a big learning curve... I am on Pregabalin, Naproxen, Dihydrocodeine, Diazepam for the pain and
muscle spasms caused by Fibro, there are days the flare up is too much that my
pain isn't completely taken away by these drugs
As for the Fatigue, I'm learning or still trying to learn about my
limitations, it's going to take nothing else but time ... with 1 good day in 7 I
decided today was going to be the day I went for a walk! I decided just 2 miles
would start me off and I got to the end of the road and had to turn back about
fainting as I was trying to push through my tiredness and it's not a good thing
I don't feel drowsy as such ...
the best way I can possibly describe the Fatigue
feeling on a physical level would be to imagine wearing a knitted all in one
suit of some dense wool, covering you from head to toe, then jumping into a
river so that the wool becomes drenched in water, now imagine how heavy your
body and your limbs become as you struggle with the weight of the wool trying to
get out of the river, it's almost impossible to lift your arm or move your leg
because it drains all your energy trying to do it...
2016 Gabapentin similar to
Carbamazepine Normally 300mg 3 times a day but
she's starting me off on 100mg 3 times a day so I'm not "spaced out". Yes that's
a drug to treat epilepsy? It's cause is due to an already underlying condition..
a tumour. 3 times a day working up to twice
I've got a kidney infection and infected
fatty lumps! Lol the joys... Strong
antibiotics, 3 times a day for 14 days, if I
have another night like last night double over in pain
Oct 2016 Bromocriptine and sometimes
Dihydrocodeine, Diclofenac, Diazepam for back
pain... been in and out the GP for almost 3 years now.. tingling, painful legs,
fatigue, dizziness, frequent urination and 4/5 day constipation. I seldom take
the meds as I need to be alert I'm lucky if I take them 1 day out of 20. It's
like a dead leg sensation
Jan 2017 Osteoarthritis of the spine it
is a degenerative disease and it cannot be reversed.
Aug 2015 for almost a year now I have had chronic pain in my lower
back/spine, this has progressed to joint pain in my hands and wrists and hips
and knees with inflammation.... The pain I have is constant, it started off as a
5 and is now quite frankly an unbearable 9/10, I wake each day very stiff and
sore and it takes longer than an hour to "warm up" or ease the joints as I go on
through the day Ė Dihydrocodeine, Diclofenac, Temazepam
& Glucosamine Sulphate
Bromocriptine... Ive been on it for years
symptoms of endometriosis are pain and infertility --- Dec 2014
Pituitary Adenoma causing migraines
--- nov 2014
nauseous and dizzy for weeks now, low energy too ----- Mar 17 2014
May 2015 A full day wiped out thanks to
Bromocriptine! It's supposed to make you feel better not worse
http://en.wikipedia.org/wiki/Mefenamic_acid for endometriosis
Routine operation been waiting on for a
while, glad it's over knocked me for six! Stitches
What itís like FMS & CFS FLARES -
Symptom flares are an unavoidable part of
life for a lot of people with fibromyalgia (FMS) and chronic fatigue syndrome
(ME/CFS). Both illnesses can include flares when symptoms get significantly
worse; and remissions, when symptoms recede to lower levels. (However, not all
cases feature flares and remissions.)
Sometimes, you have a pretty good idea a flare
is coming. Symptom-triggers such as the
holiday season, your menstrual period, busy times at work, and seasonal
temperature changes may be easy to predict and prepare for.
On the other hand, things like the flu, a car accident, bad news or a sudden
stressful event can take you off your feet without notice, at a time when you'd
expected to be feeling about "normal" (whatever that means for you.) Sometimes,
a flare-up may strike out of the blue for no
During a flare, symptoms can be seriously
limiting or fully incapacitating. Severe pain or fatigue may leave you unable to
leave the house, prepare food for yourself or even take a shower. That means
things like grocery shopping and running to the pharmacy are out of the
So you're not left without necessities when you need them the most, it's
important to be prepared for a flare-up to
hit at any time.