Pt2. 7 Weeks in Hospital
So I’ve been meaning to post this for a while, but only just got around to it. Due to a massive worsening in my health end of Nov 2011, I was in 2 different hospitals for 7+ weeks. Came home late Jan without solid answers, basically struggling to survive.
As you’ll know if you’ve read my story, I’ve had partial secondary adrenal insufficiency since late 2008 requiring hydrocortisone (HC) since. 2011 was hard as I had 3 major flus
which all lasted months each at a time requiring higher doses of HC. This was likely very damaging to my gut & immune system, as HC can be.
During the 6-7 months before my major crash in Nov, I felt my stomach worsening with the reflux etc + eventually completely crashed. Had a great worsening of digestive symptoms, but something new – a severe tingling in the brain, body & muscles, with severe muscle weakness, major worsening of systemic muscle pain and so on. Also all my allergies, intolerances, asthma and chemical sensitivities got drastically worse within days!
I have felt like my detox system basically just bottomed out completely, and now I’m like a bubble boy reacting to everything. Quite a few practitioners more familiar with toxic conditions etc, that I have been working with via Skype & phone, agree my problem sounds very much like a constant state of toxicity, where my systems cannot mobilize the toxins out of the body properly.
Since Nov, I can barely think for the whole day & night, my muscles are so weak they barely work for sometimes 4-6 hours at a time.. an almost paralysis type thing. My Nerves tingle with pain systemically. Have Weird skin rashes & breakouts that have become rampant since then.
My immune system has basically bottomed out also. I have just had one constant virus after another. Also bacterial throat, chest and skin infections, fungal infections, etc. I seem to not be able to fight anything off and am just permanently sick. I’ve also lost 8-9kg or so.. that precious weight I finally gained in 2009, and which felt so much better to have. Once again I look rather underweight.
I’ve had to restrict foods down to almost carbs only. For some strange reason, high protein foods such as meat/eggs flare up the brain/nerve/muscle pain severely. Most proteins do it though to a degree, even beans / veggie protein. I’ve been living on rice and veg, veggie juice, rice cakes, etc. Not an ideal diet for too long.
Even after those meals, but more so after decent ones, my brain shuts off into a weird almost coma like state for a couple of hours & my muscles can become virtually paralyzed. I can become wracked with pain in my muscles and all my tiny joints around the torso, ribs, back/spine, neck, shoulders, elbows, (basically everywhere), which crack upon movement. Some of these things have improved a little since Nov/Dec, but not much.
Interestingly, if I *only* drink water or veggie juice for 8-12hrs straight, most of the symptoms die down a lot. I have more strength & control of my body & muscles, have much less pain feel a lot less toxic, and much better mental clarity. However drinking water alone is not very conductive to life for long, is it now!
Being in hospital was really difficult. A lot of the staff didn’t understand severe CFS/ME at all, but some were good to me. Because most tests were relatively normal, some of them even seemed to be kind of angry with me, which was very hard & frustrating.. being this weak and unwell. I guess they were frustrated too though. Not sure how they didn’t find much, even with the obvious external signs that something is very wrong, such as the obvious extreme weakness, rashes, very pale strange skin tone (see my hands next to normal ones), constant colds/bugs & so on.
The lights were so bright & the noise so loud with clanging, banging & yelling nearly all day & night. The sensory overload was horrendous, even with eye masks and ear plugs. This world wasn’t built for people with severe CFS/ME I can tell you that much for sure.
The second half of my stay was in a rehab hospital to do physiotherapy. I hoped it would help. However, because nothing major was found or improved for my gut, immune system, nervous system etc, where the weakness and energy loss was/is coming from (likely severe mitochondrial disruption from immobilized toxins & constant microbial activity), I found the physio very hard to do. I did a very light program, and did it almost every day. However, each time I did my ‘workout’, I was absolutely wrecked, nerves buzzed and shaky for most of the rest of the day & night, energy just flatlined out. I was basically sent home at the end as they didn’t know what to do for me as it wasn’t really helping.
I have been trying SO hard to improve things since coming home with a long list of supplements, and doing activity when I feel more able to do so. I have at least become somewhat stronger than I was in hospital. Likely due to being able to sleep much longer, and do activity within any small ‘energy envelope’ that I can.
Also been trying to do various detox therapies, such as bentonite clay baths, etc. However most detox therapies now cause a 24-48 herx, flaring up all the symptoms, before finally giving a short window of feeling better, perhaps a day or so.
My brain is kind of buzzing constantly now. My ears are screaming with the loudest tinnitus, which used to be mild and transient, but now its so loud I can hear it above anything else even during the day in louder areas. I wake up suddenly in the night with strange brain ‘jolts’, and theres a constant ‘whooshing’ noise/feeling like my head is full of fluid/rushing water or something. My nerves are buzzing through my whole body almost constantly. These things have only worsened over the last 3 months, and are scary as hell.
This has been insanely frustrating to say the least. I have been on some of the best possible things I know of, and other practitioners know of from both here in Australia & around the world. Even brilliant ones that have been in practice over 40 years & written many books. I have been so appreciative of them, because otherwise have been doing it alone.
I certainly hope & pray for a better answer than what I’ve got so far, as I’m just hanging on to my life. Life I love so dearly, people I love beyond comprehension.
To recover and help thousands of people out of difficult situations, would be a most amazing & rewarding experience, and I absolutely want to do this. I need time, the precious thing I feel there may not be much of.. without a miracle. Whatever happens I’ll never stop fighting, for the beautiful people and the life I so desperately want to live.
Much love.. ~Chris.
Click for My Story: | Part 1 | Part 2: 7 Weeks in Hospital | Part 3: Heart & ER | Part 4: Hospital Again – No Answers | Part 5: Long overdue update! 2012-2017
CFS Journey 
Oh, sweetie. I wish there was something I could do! You inspire me to never stop fighting, as well. ❤ I must keep looking stuff up… maybe we can find something to help. *big hugs* and *lotsa positive healthy vibes* from the zoo and me.
Thanks dear, appreciate muchly. I am fighting too, always will. It’s so insanely hard and one becomes so lost when there seems to be no more help to be given. However can only keep trying as long as we are breathing. I just wish I had lots of time for research and treatments and so on. Hugs.
Hi Chris, I feel for you so much because my poor husband has been extremely ill with ME/CFS for over 20 years, and completely bedridden for most of the illness. Almost every single symptom you described, he has been through as well. I want to talk with you some more to share what actually helped him (after nearly 24 years of severe illness and disability). But I’m not too good with computers and so first, I have to see if this message will make it over to you, and then I’ll write more.
Sandy
Thanks Sandy. Yeah it is a terribly debilitating illness. I have tried nearly everything myself too. It’s not *just* cfs/me for me, but the digestive problems which are at a much worse level than most. Sure i’ll msg you so you can write back. ~C.
Hi Chris,
I happened upon your post whilst researching OneCode4MCS4EHS (I’m both of these but mostly EHS) and it sounds like you could be Electrosensitive as a lot of the symptoms you give match. Eg digestive problems (if I am in WIFI I can’t digest my food/stomach literally screams loud noises), also when I eat there is this coma type effect I liken it to narcolepsy where I’m out cold, also the tinnitus and brain jolts – which are linked to receptors being overloaded & can be helped by the right neurotransmitter supplement. I am seeing a Kinesiologist & doing detox for heavy metals. All these detox methods must be done in the right order and if your liver is not ready for it yet you may need to work on something else. But the main thing is if you are Electrosensitive you need to be away from mobiles, wifi, cordless phones (and your neighbours) also SMART meters which are really bad for health. I can pass you details of Organisation in your area if you wish. It’s a hard thing to get your head around but once you do you can start to manage your health and you will recover in the right environment. Wish you well. Keep the Faith you will get better. Elemental
Hi there. This doesn’t seem to matter to me at all. I’ve heard of people being electrosensitive but I am not much. The only things that bother me are electric blankets, or my ear gets sore from too long on the mobile. I do not feel any different health wise from being away from wifi or most other electronic devices. I am fine if I’m on a mob with headset, and PC’s are my life. I have tried turning everything off/being away from it, no difference at all. It seems to be a real thing for some, but for many I think it’s partially a psychological or paranoia thing. Unlike being quite sensitive and intolerant to foods and chemicals, or being burdened with heavy metals and other types of toxins which really do jam up biochemistry.
Just speaking to friend who is acutely MCS and this is her advice – to take Symprove which has a lot of helpful things for the gut, & she really things Symprove is the best thing you can take or Slippery Elm but advices caution with both of these due to possible allergies & also make sure no fos in them. Also you might want to think about Biocare liquid minerals and something called Metagenics Metabolic Clearing programme. She got the picture that your liver is very weak and really feels a liver flush would be too powerful for you. Of course we are not Doctors, but we have been through similar things. It seems that you are so hyper-reactive to everything that your best bet is to stabilise your digestive system (i.e. Symprove), get some minerals into your system. Apparently lamb and also pears are the least allergic foods. Please think about seeing a Homeopath as conventional medicine doesn’t know how to treat MCS/fatigue/Electrosensitivity and being in a hospital you will be surrounded by mobiles, WIFI, high electrical spikes but more importantly TETRA Airwave Emergency Radios (most probably on the roof of the hospital) all these will weaken the system. Hopefully you will be at home but make sure you are not exposed here. My friend Julia sends her very best wishes for your recovery. We are very moved by your posts. We are here as individuals and as a network of people struggling with MCS/Electrosensitive supporting one another. Take care Elemental
Thanks again. Symprove seems like a multi strain probiotic. Not sure about it myself as I haven’t tried it, but I’ve tried many of the worlds best probiotics. Unfortunately for me and many CFS patients, probiotics do very little to actually improve the condition. I take them because I know they can be beneficial for the gut, but there are many other thing that matter way more for a CFS type condition, such as high dose vitamin C, Sam-e, and active B complex. Homeopathy also does absolutely nothing for me and many CFS patients unfortunately. Many of these things are just too mild to make a difference in such severe conditions. Colloidal minerals are very beneficial though that’s true. They helped many symptoms for me and many others. Chemical avoidance, a clean diet that suits ones system/particular problem, and certain supps really do help.
The one food that is lacking within the cell of the liver. Glutathione is a powerful chelator of Heavy Metals. Heavy metals enter our cells in the same manner as chemical toxins. Fortunately, they can be removed from the cell by a process of chelation, and glutathione is one of the cell’s most powerfu chelating agents.
Yes it is indeed 🙂 Unfortunately I cannot tolerate glutathione directly but Sam-e indirectly helps raise it. See my page on CFS and detoxification (link on the right).
Hi my son suffered similar symtpoms. He is doing better now. He saw a doctor in Perth who helped. Please contact me if you’d like more information
Hi Marisa. Glad to hear your son improved. Feel free to let me know via the contact section on the website. 🙂 Cheers.