My CFS and appendicitis story

Hello all. I'd like to share my ME/CFS story here and hopefully it can be of some help/interest.

In March 2009 I came down with awful fatigue and muscle pains along with severe mental/physical exhaustion, delayed post exertional malaise etc. Was diagnosed with CFS/ME after six months or so of blood tests that all came back normal. From there I was very disabled for years unable to lead anything close to a normal life. Felt like I was dying, being slowly poisoned the whole time yet doctors always told me it was stress or anxiety related since all my blood work was 100% normal all the time. Had all the classic mental/physical symptoms of CFS/ME - although without the normal sleep disturbance issues. So I had to adjust to living a severely limited life and was barely able to able to do anything at all for years - until it was all resolved in late 2011 (we will get to that later).

During this period I also had ever increasing heaviness and aching in my lower right abdomen which eventually spread to the lower left area. Also I had really bad bowel problems with constipation, gas, etc. Also every three to six months like clockwork I would get really sick for a day or two, unable to eat, fever, throwing up, etc, which would go away as quick as it came on so I put it down to stomach bug or food poisoning every time. Now I put all the general digestive stuff down to 'IBS' and doctors told me it was stress related and gave me loads of laxatives which I took for months and they did NOTHING. Furthermore I was steadily losing weight the whole time. before I got ill in 2009 I was 86kg and by mid 2011 was 73kg - despite eating constantly and barely moving. Strangely enough I always had a massive appetite still.

Then in late 2011 the horrible aches turned into the insane stabbing of acute appendicitis and I was rushed to hospital to have it removed and the day after the op I woke up and everything was gone. It was like being reborn. The doctors told me it was one of the most infected appendixes they'd ever seen - I was kept in for an entire week on constant IV antibiotics because they were so worried about infection spreading afterwards. Bear in mind most cases of this people are discharged the next day with a few oral antibotics.

Its now taken me the last six months to even begin to get back to anywhere near the physical/mental fitness of before I was ill. I would say I'm about 60-70%. But everything is GONE - I can push myself really hard and never suffer more than standard tiredness/aches, can walk miles, can read for hours, all things I could only do for incredibly small periods while being ill. Can put on weight too as normal.

Thing is, I had textbook ME/CFS - including the very distinct delayed exhaustion pain after exertion (sometimes of up to three days until the 'payback' kicked in). Has anyone ever heard of a case like this? I've searched through the internet and cannot find any instance of someone having it all go like this. My working theory is that all the energy in my body was going towards keeping the appendix from bursting and that's what caused everything else. Doctors tell me appendicitis in chronic form doesn't exist but they are clearly wrong.

Anyway, sorry for the length, I just wanted to get this out there and maybe someone will read it and it can help. I should have pushed for a CT of my abdomen or something, no doctor ever thought of scanning it to see what was going on. So I guess I would encourage everyone out there to consider all possibilities and not let IBS type symptoms linger without checking everything down there.

Thanks for reading!

HoldingOutHope: that's what I think msut have happened too, somehow it was bringing me down inside. But then all my blood work was totally normal the whole time as always seem to be the case with CFS. Very confusing. Thing is I never had any scans of the abdominal area (until I ended up in hospital...) despite complaining of quite severe heaviness and discomfort down there for years. I'd recommend anyone with even relatively minor things happening there to push for every test and scan there is.

I'm still not up to my the level of energy and fitness I had before being ill for three years, I still get tired really easily and feel mildly ill most of the time with cold/allergy type things, so there maybe is something the matter still. But the post exertional exhaustion and pain as in CFS is just gone.

Hi, I am not usually in this forum my usual hang out is fibro or chronic pain. I was surfing about reading posts and this one caught my attention. Holy diver did you experience the terrible pain in your appendix area I have even told it is excruciating? Did you have constant fevers as associated with infections? Was your blood work always normal? I am confused how your appendix could be so infected and doctors and testing failed to show a problem.

I truly hope your problem is over now. Thank you for posting its a good reminder to us all just because they say all the tiredness and pain is in your head continue getting check ups you never know.

@grandmaroses

I had a really constant extreme heaviness and lump like feeling there. Occasionally it would get very painful, but it only went to the point of lying on the floor screaming type pain on the day I ended up in hospital to have it out.

My blood work was always totally normal. I am confused as well and really have no idea how this is all possible, but the pieces fit. I did get a low grade fever and sickness every few months which I always thought was a stomach bug, which would last 2 days then go away. Most telling thing for me is the weight loss - how could I keep losing weight over those years with always eating and never moving, unless there was something very wrong...

Its all very strange and I'd love to speak to a medical academic specialising in these fields to see what they would think about it. Does seem to defy common medical thinking.

LaDuchesse said...
Holydiver, are you quite sure your CFS diagnosis still stands? Could it be that you only ever had chronic appendicitis?

I don't know to be honest. The post-exertional malaise (i.e. defining characteristic of CFS/ME) has literally been gone since the morning I woke up after having the appendix out, it is 100% beyond doubt that the years of illness were caused by the appendix. Yet really did seem to fit the bill for CFS though, everything seemed to point to that. so maybe I somehow had appendicitis causing a CFS-like state due to the stress on the body of keeping it from killing me? If this is even possible...

Its a medical mystery, need Dr House on it for sure

Hi - in case anyone is still reading this, I have a theory.  I had the exact same thing - a year of awful fatigue having previously been a junior international athlete.  At the end of that year I was taken in for emergency appendectomy and the surgeon said my appendix "had been a problem for some time".

I too got dramatically better after the operation and pretty much back to my old self.  That was around 20 years ago.  However, things have slid and I am back to a similar situation, having also had to battle with an amoeba infection, late diagnosed coeliac disease and other issues, which now include fatigue and extended exertion after exercise.

My theory is that I have an underlying infection such as Lyme's disease and that the only time I feel better is when I happen to have been on antibiotics for another reason.  Hence, why I felt so much better after the appendix op - it probably shifted out a main part of the infection through getting out the problem appendix, but even more so by the intravenous antibiotics.

It's just a theory, but there has to be a reason why my muscle strenght and cheerful disposition return when on antibiotics..

Best wishes, Carolyn

LaDuchesse said...
@holydiver
I've been formally diagnosed with Chronic Appendicitis (by the GP who had assigned me with CFS) I'm getting my appendix out tomorrow and hope that this toxic feeling and the feeling of low frequency vibration (best description I can use for it!) will disappear... I'll try to report back, I know reading your post really helped me, thank you.

Hello LaDuchesse, could you elaborate a bit on your "vibrations" sensation?? I have been struggling with the feeling that my limbs tingle like a tuning fork since an episode of appendicitis last year (it was "successfully" treated with antibiotics), and it is driving me crazy. Doc thinks it is anxiety, but I am not so sure, it so purely physical and constant. Plus I am experiencing lower R abdominal discomfort again, dull this time. I am wondering if it is chronic appendicitis. How did you feel after your surgery? Thanks!

Sorry I have been away.... Catching up with my life, I'm sure you understand!!! Things have been good, really good! I hope by now you are very well also! I do have residual annoyances, so to speak, ex. My right eye still droops when I am very tired, and I have mild facial spasms that persist....uncomfortable, but I'm not complaining!!! Only I know that they are there. Other than that, I work out everyday, I am very active with my grandchildren, I am traveling again........just enjoying my health again. When I look back, I am amazed that I survived all of that. It was truly the most horrible illness to deal with 24/7. I was convinced I was dying. I couldn't believe that I was that sick and no one could find what was wrong with me. My abdomen was the only part of me that was not scanned...I wish someone had picked up on that and just ordered a scan for that reason!!
Anyway, life is good and on a positive note, I do appreciate every single day, even more than before! I hope you are doing as well!!

Hello,
From the age of 18 to 28 I suffered from a chronic appendix. When I was 18 my weight slowly dropped about 10kg. I ended up 56kg. Not much when I'm close to 6 feet tall. Lots of fatigue. Still ate like a horse. My sisters had hasimotos so I thought it must be that. I even went and took my sisters tablets for 6 months.
All that did was stopped me getting drunk on 3 drinks. I could drink all night and not get drunk at all. I got tested and that wasn't the answer. Being that skinny during that period of your life was pretty tough. So I staggered through, mainly in an alcholic blurr. Every year or so I would have these really bad stomach attacks. Doctors put it down to food poisoning or bad water. These attacks would last for 2 days and with lots of pain and vomiting . Eventually after ten years I had a massive attack.
Even then it took the doctors 8 hours to work out it was my appendix.
Hooray you bloody ripper they took it out. With in one week I had put on 20 kg and felt a lot better. I still felt fatigue but not all the time.

How are you now Holydiver,
Are you completely better. The reason why is I think I know why I got the chronic appendix in the first place. I have found out I have parasites of the gut Helicobacter Pylori, Blastocstic and Dientamoeba fragilis. I looked around and one study said chronic maybe brought on by parasites inside the appendix. Now it's been 20 years since my opp my symptoms got really bad
---rock hard stools followed by the runs
----feeling of fatigue
----not wanting to do anything
----really bad memory
----bad oints[sorry no -ay on my key pad
----mucus in stools is a give away
lots of other symptoms basically mucks you up big time

Not all people react to the parasites like this only some. Sometimes they don't show up in normal tests so need special tests. Treat with antibiotics that's maybe why Carolyme was feeling better on antibiotics.Has very similar symptoms to Lymes desease. Hope this helps

Can I please contact you more privately somewhere holydiver? I think this MIGHT be what's been troubling me for years, not sure though. I had appendix pain with regular intervals when I was young, it always passed after a few hours though or after I'd slept. Then at around 12 years of age I got chronic fatigue and at 15 my appendix ruptured. They didn't take the appendix out though they just drained the abscess that arose and gave me antibiotics. Can I please talk to you somewhere? I need help :(

Cycle mom said...
This was like reading about myself! I too have recently recovered after a nightmare lasting 3 yrs. 2 months. During this time I was so ill, I thought I would die. No one could find out what was wrong with me, all my tests and blood work revealed a healthy woman. I was anything but. I lost 35 lbs., I had a right eye ptosis and facial droop and too many terrible symptoms to list here.
This illness robbed me of over three years of my life, as there was no quality left, I just had to manage to get through each day. Over the years I got worse and worse and then a couple of weeks before Christmas, I had stomach pain which I ignored for about a week because pain and suffering was just a part of me. My appendix finally ruptured. The surgeon said that a portion of my intestines, about 6 inches, was necrotic and removed! I did develop pneumonia, unfortunately, with other complications, so I was in the hospital for 2 weeks. I was on a lot of IV antibiotics, I was even in ICU for a few days. But while recovering from all of that, I started to realize that I didn't have that awful, so sick feeling.....it was gone! I honestly think that I was slowly being poisoned by the toxins in my body and that my body was in overdrive trying to protect me. It was so difficult to describe my symptoms, I only knew that I was very, very sick.
I have already weaned off of the antidepressant that I was on for years. And I am in the process of weaning off of Klonopin right now. I am concentrating on living and loving life again. I never thought that I was going to recover! And I too had every test there is, as I had all the signs of Myasthenia Gravis, CFS, Meiges syndrome, dystonia, etc...But I never had a CT Scan of my abdomen!
To anyone in this condition I say....Never give up! And make sure that you listen to yourself. You know that it is not in your head, you know that you are ill! Good luck to you!

Old topic but thank you for your post what describe is what I been going through. Did every image test at least 7 times yet nothing was found. Friends and family say its all in my head ibs but its all bullcrap crap I know its my appendix or ileocecal.

I have found this thread after visiting my GP today. For almost 10 years I have battled flares of 'not feeling right', feeling toxic, having terrible lethargy and fatigue, along with pretty much all of the other symptoms you guys gave discussed. Most important, a nagging pain to the right of my belly button.

I have been fobbed off with anxiety, IBS, had a thousand blood tests which all come back normal.

This has caused me to have severe health anxiety and I have had no choice but to pick myself up and carry on as best as I can, doctors have been no help. At times I can feel strong and well, as if it has totally gone, but there's always a dark cloud looming that I could wake up feeling terrible again and who knows how long this will last.

To add to the above, I have tried many diet changes and ways to improve my health.
I always have this lingering dull pain to the right of my belly button. The GP pressed it today and I asked her what is this pain I always get, whats under there. She said appendix and a loop of the bowel.

She has referred me to gastro/digestive diseases but said due to the pandemic "it could take a while"
After reading a lot today I'm almost convinced it's my appendix thats poisoning me. Knowing my luck the scans will come back 'normal'

It seems to have been getting progressively worse over the last few months and at times I can eat and end up doubled over for a while until it passes.

Stool sample showed mild Inflammation, then a retest was normal. Crohns was ruled out by low F.calprotectin levels.

I'm feeling pretty hopeless about the whole thing.
I know this is an old thread but I just pray I've found a possible cause of my years of misery!

Take care and I hope you're all doing better!

Ben