IBS preceding ME

[digital dog]

I read that approximately 30% of people with ME had IBS before they had full blown ME. This is certainly true for me. I had very bad stomach issues for eight years before full blown ME.
How many here had IBS prior to their diagnosis?

 

[trails]

Define IBS?

 

[digital dog]

Bloating, stabbing pains, gurgling, nausea, feeling like you have rocks in your stomach, flatulance etc.

 

[minkeygirl]

IBS has constipation, diarhea or both. What you describe may just be gut issues

"An intestinal disorder causing pain in the belly, gas, diarrhea, and constipation."

http://www.mayoclinic.org/diseases-...bowel-syndrome/basics/definition/con-20024578

 

[digital dog]

Have had diarreah for twenty years. It has got MUCH better since going gluten free. Never had constipation.

 

[minkeygirl]

There's is IBS-C which I have, IBS-D and IBS-A, alternating

Eating Gluten free had made zero difference. The only thing that helps me not cramp and bloat is staying away from dairy, fatty foods, caffeine. Even with huge amounts of fiber a day I have problems

I did not get mine until 15 years in.

 

[Farley]

I and real bad problems with my gut and bowel when I first become ill. I remember having an Endoscopy, Sidmoidoscopy, and a Colonoscopy. Of course they found nothing.
I found diet,probotics, perbiotics and stress management all helped, something I read once about the gut being a window to your health.
To me it make some sense as it is the first thing to react in a real stressful situation, like how you feel sick instantly when exposed to shock.
Having this illness is sure 'stressful' and a massive shock to the system, I know it was for me and that's how I see it.

 

[Bob]

I suddenly developed severe IBS, soon after a major adverse turn of events in which I seemed to develop a new acute episode of ME involving a range of new symptoms such as IBS & pain. Before that, for the first ten years of having ME, I didn't have any IBS, or any other complicated symptoms. Now the IBS seems to be closely related to the ME, as the symptoms of ME and IBS seem to affect each other reciprocally.

 

[Thomas]

Yup!! Always had classic "IBS" since teen years. By IBS I mean frequent bowel movements throughout the day, food sensitivities, sometimes constipation. But it was all very much related to ANS and anxiety. Like if I were chilling at home I'd be okay for the most part. But if I had a first date or a meeting, or mall shopping then bam, my gut would start spasming and I'd need to find a washroom fast. It gave me a sort of PTSD and really affected my quality of life. I barely traveled and road trips were terrifying.

I'm yet to get this under control. Although in year 2 of my ME my gut chilled out because my immune system was in a strange place - I was sick with viral like symptoms but my ANS was too tired to to get the anticipatory anxiety that lead to the IBS spasms. It was wonderful but horrible at the same time.

I was shocked when I got ME to learn that it was only 30-50% of people that had IBS before they got sick...I thought it would be WAY higher, but it seems like most people's "gut" problems have nothing to do with gut symptoms specifically, more like theories of dysbiosis or leaky gut. People would tell me how messed up their guts were but then say "oh I don't have IBS or any gut symptoms, I just think I have a messed up gut because I have ME". My IBS is sometimes as frustrating as the ME and unfortunately I feel are two sides of the same coin.

Ring a bell @digital dog ?

 

[meandthecat]

Within 3 months of the acute flu like illness that began what I think of as ME, the gut issues that had plagued me for 10yrs dramatically decreased and over the next couple of years went completely so that I can now eat apples again. Apples were the first food to cause a reaction and the last to go which is good as they are my favourite fruit and I manage an orchard...

My symptoms where mostly bloating, gas, loose stools but never pain, it had 2 modes, one was fast, within 10mins and the other would come on the next day and last for a few days. Unpredictable, seemingly endless, nothing helped as I tried anything and everything, it seemed unaffected by any emotional issues and these only emerged with the ME.
Rice cakes were one of the few foods I could be sure of; they make excellent firelighters which is how I used up my bulk buy. After 2 years of rice cakes I will never touch one again.

I guess it was a good grounding for the abuse I was to receive once labelled with CFS because doctors treated me like shit then too.

I came to see this as creating the conditions for the ME and have found nutrition vital in the long road back to an improved resilience.

 

[mermaid]

I was diagnosed with IBS at around the age of 20. I then had stomach problems for the next 40 odd years or so, moving on eventually in my late 40s to upper gut issues with gastritis.

I was not diagnosed with ME/CFS until I was in my late 50s, and by then I had begun to sort out my chronic gut problems by changing my diet drastically, (at one time, no grains, no sugar, basically Paleo), introducing digestive enzymes, kefir, a variety of digestive supplements, and eventually seeing a medical herbalist.

In the past year I have been able to reintroduce fruit, and some grains (not gluten), and at long last my stomach functions the majority of the time without pain, diarrhoea or constipation. I still have ME, though it's not severe, but I am very limited in energy and have to pace. I also have immune problems though the herbalist has improved things for me.

 

[acer2000]

Yes, and it got much worse in the months preceding the "sudden onset" CFS illness that I got.

 

[helen1]

I had IBS for 30+ years, but cured myself with acacia powder which really improved my quality of life. Then came down with ME a few years later.

Dr Kaufman told me that 80% of his ME patients also have SIBO.

 

[Thomas]

I had IBS for 30+ years, but cured myself with acacia powder which really improved my quality of life. Then came down with ME a few years later.

Dr Kaufman told me that 80% of his ME patients also have SIBO.

You cured your IBS with acacia powder? What do you think it was in it that cured it? I'm guessing your IBS isn't anxiety related or the way mine is as I described above...

 

[acer2000]

Dr Pimentel has published a lot on how he thinks SIBO *is* IBS. He thinks it is often secondary to GI infection due to the development of auto-antibodies that impede correct function of the migrating motor complex which then leads to SIBO. I think they have identified the antibody recently.

I am 99% sure I have SIBO but I have been unable to treat it successfully. I do better on the low FODMAP diet. But before I had CFS/ME I didn't have a problem with FODMAPs.

 

[helen1]

OK, there was a bit more to it than the acacia powder, now that I think back. I also started eating soluble fibre at the beginning of each meal and cut back on insoluble fibre greatly. I got a lot of other IBS diet info from Heather's website:

http://www.helpforibs.com/diet/trigger2.asp

which I followed pretty strictly and where I also bought the acacia powder (not that I'm promoting her business).

I think the acacia powder was so helpful because it's mostly soluble fibre. It also has a bit of prebiotic (which may or may not be a good thing). It's also apparently very soothing for any mucous membranes.

@Thomas, my IBS was the C variety (constipation), with lots of bloating, gas, pain. I was out of commission most evenings for decades, unless I ate nothing, which is what I did if I went out for the evening. Definitely related to social anxiety, as I'd often have an attack even on an empty stomach, definitely if I ate, if I was out socializing.

 

[barbc56]

I didn't get it until a year after getting sick. My PCP says she sees it a lot with FM.

 

[ryan31337]

No significant gut or dietary complaints for me prior to or within the first 10 years of ME. Recovered to a high level of functioning but then bad food poisoning preceded increasing food intolerance and subsequent IBS, alongside a major relapse. GF/DF diet + probiotics saw intolerance & IBS reduce significantly, recovery to high functioning level again followed. Maintained that for about 5 years before history is now repeating itself. Can't be certain the gut problems cause the relapse rather than just being an associated symptom, I don't think its unreasonable to assume that the dysfunction is at the very least hurting my ability to recover though.

 

[currer]

I only developed IBS a long time - about ten years - after my ME started.
By IBS I mean constipation, bloating, and gas especially in the upper GI tract. This is not the same as some of the other reports of IBS above.

My ME started gradually over about six years. Even when I was very ill, I had no IBS. The IBS only began once I had recovered from being bedbound and housebound to being fairly mobile and able to go out. I have no idea why the IBS developed when it did.

For many years IBS was a misery. However it stopped completely once I began taking Immunovir and I have had no problems for three years.
I wonder whether this could be because imunovir may have antidepressant type effects in me, because it also produced a marked and immediate improvement in my mood.

If IBS can be caused by reduced serotonin in the gut - maybe the immunovir was raising this in some way?

I recognise these are individual reactions in me and that others may not get the same response from a drug.

 

[currer]

I have sometimes been able to help my gut by using 5HTP tablets. These also elevate serotonin.