A Case History of ME/CFS

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A Case History going back to 2014

2019 Functional Neurological Disorder (FND) https://rarediseases.org/rare-diseases/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 Carers who also look after me 7 days a week B & C
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

 HOMEPATHY (Quackery)

  • Lysine ---  Rapha Center  Homeopathic 140 pounds + 65 pounds

  • Potassium_Sulfate_33mg--Magnesium_Phosphate_65mg

  • Silicon_Dioxide_33

  • Sodium_Phosphate_200-Calcium_Fluoride_500ng

  • MultiVitamins + minerals

https://www.quackwatch.org/search/webglimpse.cgi?ID=1&query=Schuessler+

https://www.quackwatch.org/search/webglimpse.cgi?ID=1&query=cell+salts

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 supplements...

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 doesnít work

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 JS   - 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 antispasmodic agent.

  • 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 ...?

https://www.neurosymptoms.org/attack-treatment-2/4594358035

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 your body.

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 medications.

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.

#fibromyalgia
#ME
#functionalneurologicaldisorder

All on top of one another 😔 I truly want it all to end.

I had my appointment with Professor S yesterday from WGH .. he is the top specialist of FND in S.

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 neurological specialists)

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 AC their neuropsychiatrist...

Professor S 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 AA 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 want me,

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 my illnesses...

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

  • 1000ug B12

  • Turmeric

  • Magnesium

  • L-Glutamine

  • D-Ribose

  • 2 DHC Continous 
    2 Paracetamol 
    2 Diazepam
    1 Baclofen
    1 Bromocriptine

 feeling myself go numb just to get me through the night

 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 trying anything!

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 dogs each day is by far the best my days can get 🙏🏻🤗 and yet Iím feeling hopeful.

 

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 apparent reason.

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 question.

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.

 

 Nov25 Iím back on my DHC Continus with Paracetamol, 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 free

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 AA 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

http://www.nhs.uk/conditions/Trigeminal-neuralgia/Pages/Introduction.aspx

 

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 PROLACTINOMA 

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 anxious
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... x

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 to do!

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...

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

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 at night

https://en.wikipedia.org/wiki/Trigeminal_neuralgia

 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

 http://orthopedics.about.com/od/lowbacklumbarcondition/a/spinearthritis.htm?utm_term=treatment+for+spinal+arthritis&utm_content=p1-main-1-more&utm_medium=sem&utm_source=google&utm_campaign=adid-3df0b946-de37-4b06-b768-386fe7ca5406-0-ab_gsb_ocode-23736&ad=semD&an=google_s&am=broad&q=treatment+for+spinal+arthritis&dqi&o=23736&l=sem&qsrc=999&askid=3df0b946-de37-4b06-b768-386fe7ca5406-0-ab_gsb

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

Dihydrocodeine, Diclofenac, Temazepam & Glucosamine Sulphate

 Bromocriptine... Ive been on it for years

http://www.patient.co.uk/medicine/Bromocriptine.htm exhausted, 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

 http://en.wikipedia.org/wiki/Dihydrocodeine

http://en.wikipedia.org/wiki/Endometriosis

symptoms of endometriosis are pain and infertility Dec 2014
Pituitary Adenoma causing migraines nov 2014

Routine operation been waiting on for a while, glad it's over knocked me for six! Stitches

Questions? info@MarinInfo.org