Where Have I Been?

So, I’ve been MIA (Missing In Action)…why?

I have been slowly weaning off my Lyrica (see posts below for previous updates) to see if we can find something else that will allow me to feel less pain but with less side effects.

dose last

And I have finally made it to Week 6…

No! I do not feel miraculously better – in fact, I feel horrible. I didn’t realise what the Lyrica had been protecting me from (although it didn’t feel like much at the time). Let’s work from the head down:

  • No respite from the permanent headache
  • Very lazy right eye
  • Cheekbones growing out of my face
  • (Even more) increased sound sensitivity
  • Everything smells pungeant
  • Sensitive teeth
  • Itchy face
  • Aching neck and shoulders
  • Swollen-feeling wrists and hands (without swelling)
  • Costochondritis
  • Stomach cramps
  • Acid reflux
  • Diarrhea (whether I eat or not!)
  • Taut calf muscles
  • Swollen-feeling ankles and feet (without swelling)
  • Inability to remain asleep
  • No inner temperature control

Sounds like everybody else, right? But it seems that the Lyrica had reduced the impact of some of that. I just hadn’t realised how much. But the Lyrica also brought complete and utter fog.

And now I’m back at square 1; ready to start again, in a couple of weeks, to see if we can find a more effective medication regime, that will still allow me to think like a normal person!

Related Reading:

Obsessed with Poo!

poo 1After another uncomfortable visit to the toilet, I decided to Google ‘Focal Nodular Hyperplasia’ and ‘IBS.’ I found absolutely nothing that linked the two but I did find another study that shows that nearly all patients with Irritable Bowel Syndrome and Diarrhea (IBS-D) actually have a different condition!

It was found that patients thought to have IBS-D – a condition which affects up to 15 per cent of the US population (35 million Americans (US study so US statistics – I’m sure the figures apply to other countries, too)) – may in fact have a different condition altogether.

This was the largest study to date and indicates that doctors may use IBS-D as a blanket diagnosis, rather than cite a collection of separate medical conditions.

According to the study, 98 per cent of participants were found to have a diagnosis different from the initial presentation of IBS-D. This study refutes the existence of IBS-D as a single medical entity and implies that this diagnosis is simply a catch-all diagnosis. The findings also revealed that 68 per cent of the participants actually had conditions related to treatable (that means that 68 per cent of us could actually feel better!) bile acid induced diarrhea as a result of gallbladder dysfunction.

A dysfunctional gallbladder that produces an abnormal amount of bile causing chronic diarrhea can be very treatable, as opposed to IBS, for which physicians and patients often search for treatment to alleviate the discomfort, often to no avail.

bird_pooAccording to the study, once patients were accurately diagnosed, 98 per cent experienced a favourable response (that is, the elimination of urgency and incontinence for at least three months). Wouldn’t that be nice? The end of a lifetime of discomfort, unease and frustration!

“The results of this study demonstrate quite convincingly that many patients may needlessly be going through the physical and emotional pain of IBS and functional diarrhea when, in reality, they may be afflicted with something else that is easily treatable,” said Saad F. Habba, M.D., gastroenterologist at Overlook Hospital and the study author.

Test results

  • 41 per cent were found to have Habba Syndrome (a relatively new entity relating dysfunctional gallbladder with chronic diarrhea , which is successfully treated with bile acid binding agents);
  • 23 per cent of the study subjects were diagnosed with post cholecystectomy diarrhea;
  • 8 per cent had lactose intolerance; and
  • 7 per cent had microscopic colitis.

Doesn’t quite add up to the 98 per cent – but it still shows that there is some hope!

 

Intestinal Fortitude

 

My stomach is NOT my friend! I am lucky enough to swing from constipation to diarrhoea in less than the blink of an eye.

Research findings from the Walton Centre in the UK report that the small bowel in FM sufferers (and when it comes to IBS, we are definitely sufferers!) shows overgrowth of abnormal bacteria. The study demonstrated an increased intestinal permeability that produces increased hyperactivity of the intestines. Intestinal permeability means abnormal substances gain access to the body and alter its immune function.

Constipation

According to reports in the Journal of Psychosomatic Research, constipation or infrequent stools occur in 30% of FM sufferers. Constipation is defined as having a bowel movement less than three times a week. Some individuals complain of abdominal pain and straining to move the bowels in conjunction with the constipation.

Diarrhoea

Clinical Nurse Specialist describes diarrhoea occurring in up to 90% of FM sufferers. Individuals describe a pressing urge to move the bowels as well as passage of unformed stool. Diarrhoea occurs along with high levels of anxiety. Reports in the Journal of Nutrition indicate ingestion of probiotics decreases the symptoms of diarrhoea.

Fecal Incontinence

The Journal of Psychosomatic Research reports 2% to 7% of individuals with FM report uncontrolled passage of stool. This fecal incontinence transpires frequently in concurrence with diarrhoea and creates major problems in daily life. If it has ever happened to you, you never want to leave the house again (or, at least, without knowing where the closest toilet is!)

gastroesophageal Reflux Disease

According to the Journal of Psychosomatic Research, gastroesophageal reflux disease describes the condition where food travels backward from the stomach into the oesophagus. The oesophagus is the tube connecting the mouth to the stomach. Characteristic symptoms of gastroesophageal reflux disease include epigastric pain, a sensation of fullness, and heartburn. gastroesophageal reflux disease and other intestinal problems occur in 50% of FM sufferers.

I have tried some (very expensive) probiotics without any improvement. Basically, I make sure that I have a constant supply of Imodium, Buscopan and Durolax on hand, at all times.

Has anyone found something that works (not just on symptoms)?