Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
Hi guys,
I have been diagnosed with Disbyosis for about 6 months now. I had been diagnosed with IBS for over 20 years, but something, in fact, a lot has changed in the symptoms and the type of pain I am experiencing.
To address this serious changes I have gone from an Anti Inflammatory diet, to include Gluten-Free eating, which has now expanded to include organic Grain and Sugar Free eating, yet I continue to experience serious gut pain. I was put on the GAPS eating protocol with the consideration that my pain might be caused by Leaky Gut (or a porous intestinal lining that is leaking undigested food particles and toxins into my blood stream.)
Here is something that I would really like your feedback on. With each of those diet changes I experienced a level of symptom relief, but then, as if my body (or the thing causing the pain) adapted to the change, It became able to continue to cause damage (or the pain) despite the change.
I know it sounds very strange, but this is what is happening. Have any of you experienced this situation?
I have been examined through and through (if you know what I mean) and here is what the GI specialist has said. "Except for some Diverticula, a Hiatal hernia, and an Umbilical hernia, everything looks normal." They said none of these things explained the pain I experience, that they are minor and that I should not worry about them. Ok, but...the pain I experience is getting worse and it is like nothing I have ever felt, and there is a very scary weakness connected to these gut associated pain attacks. And as you all know, we who live with Fibromyalgia know pain very well.
Any thoughts are welcome.
I have been diagnosed with Disbyosis for about 6 months now. I had been diagnosed with IBS for over 20 years, but something, in fact, a lot has changed in the symptoms and the type of pain I am experiencing.
To address this serious changes I have gone from an Anti Inflammatory diet, to include Gluten-Free eating, which has now expanded to include organic Grain and Sugar Free eating, yet I continue to experience serious gut pain. I was put on the GAPS eating protocol with the consideration that my pain might be caused by Leaky Gut (or a porous intestinal lining that is leaking undigested food particles and toxins into my blood stream.)
Here is something that I would really like your feedback on. With each of those diet changes I experienced a level of symptom relief, but then, as if my body (or the thing causing the pain) adapted to the change, It became able to continue to cause damage (or the pain) despite the change.
I know it sounds very strange, but this is what is happening. Have any of you experienced this situation?
I have been examined through and through (if you know what I mean) and here is what the GI specialist has said. "Except for some Diverticula, a Hiatal hernia, and an Umbilical hernia, everything looks normal." They said none of these things explained the pain I experience, that they are minor and that I should not worry about them. Ok, but...the pain I experience is getting worse and it is like nothing I have ever felt, and there is a very scary weakness connected to these gut associated pain attacks. And as you all know, we who live with Fibromyalgia know pain very well.
Any thoughts are welcome.
Thanks for responding. Funny you should ask, I just had a physical today and my GP preformed a pelvic exam but is referring me to a Gyn for further examination.
I have always been prone to cysts. I have had several in my breast, ovaries, and other parts of my body, and was told I have fibroids 2 years ago after a CT scan.
You think this could be connected to the intestinal pain?
I am sorry you have cysts. I've had a few ovarian ones, and I have fibrocystic breasts which are painful about half the time, so....Many gentle hugs.
To answer the actual question? When my endometriosis flares up every month? I have horrible GI issues---GERD, constipation (sorry if TMI), cramping in my GI tract---b/c the endometriomas themselves are in my pelvis AND abdome-n---up against my intestines. So to me it seems like common sense that would be a rpoblem---- you get swellings of nasty stuff against your intestines, your poor GI tract can't do the job. IT's getting all compressed and irritated from the outside. Just my two cents. (I go liquid diet for that special time of the month thanks to endo.)
Hugs,
Leo
I never thought of endometriosis. I'll look into it.
What about the possibility of infection? I don't KNOW anything about this, but your mention of adaptation made me think of virus and bacteria that adapt to changes in conditions (antibiotics, environment) and bounce back. There was a very interesting article recently in the NY Times about our biomes (some such word). It is the composition of bacteria, viruses, and xxx?xxx that are part and parcel of our body. Their health and balance can mean the difference between illness and health, life and death for us. There is even the case of people who have been saved or restored to health by a fecal transfusion (implant?) from a healthy spouse. The whole field is very interesting because there are scientists who suggest that our move away from the rural environment, away from close contact with the animals/nature is hurting us seriously. In other words, over the millennia our bodies have developed symbiotic relationships with farm animals, nature, that we are no longer providing. Our food is too clean of good bacteria and too dirty with chemicals. I find it a logical argument.
Maybe you live close to a university that is looking into this and can participate in a study or get treatment?
I am sorry for all the GI problems you are having. I know how painful and limiting that can be.
I have some similar GI issues, sort of- I had C-Diff for just over a year, so my GI tract is healing. With any diet changes I get some benefit initially and then my body adjusts and I do not notice any benefit. If, when the pain initially comes back, I go liquid - 2 Ensures (I cut them with water) and maybe some plain oatmeal with applesauce mixed in at dinner for a few days, I stabilize .
I also have Endo like Leo, and my GI symptoms flare up with my Endo, so if I go back to the liquid diet for a few days, again, I stabilize.
Don't know if this helps, but I also have a hard time absorbing nutrients from food, so I am occasionally put on RX shakes to drink, and for some reason, Ensure, or RX beverages are so much less harsh on my GI system.
Last thought...If you have been going to the same GI doc for all your testing, I might suggest a 2nd opinion at another hospital. I had C-Diff for over a year and was given the wrong treatment, and was not diagnosed properly-if I had gotten a 2nd opinion sooner at the better hospital 2 hours away, I could have been feeling better so much faster.
Hope you feel better,
LuLu
It doesn't seem likely it is simply fibro, because fibro is muscle pain. Fibro co-morbidities (like IBS) are separate conditions requiring separate treatment.
I sincerely hope you are able to be more comfortable soon.
They put me on protonics and pepcid. Now I just use prevacid every morning and I am pain free. I think inflammation is a huge problem with us, so good for you for restricting your diet already. I might suggest going to a GI person that knows about fibro. I did and he told me the whole leaky gut thing was bunk. I have followed his instructions and now have my IBS pretty under control.
Regarding the ob/gyn, I agree with some of the others. Definitely get checked out, even with an ultrasound because they cannot detect endometriosis unless they do a laperoscopy. Just the first of this year my really good gyno put me on depo provera and I am happy to say now I am in menopause!! yea, never thought I'd say that.
I really hope you get this cleared up. Stomach problems can take you down! Good luck and prayers be with you.
I had to take my poop into the doc who has male and really good looking!! LMAO, will never live that one down.
I TOO HAVE FIBRO, PLUS A LONG LIST OF OTHER AILMENTS TO ADD TO FIBRO PAIN..
MY WIFE HAS FIBRO,TOO, A FEW YRS AGO SHE HAD A HYSTERECTOMY, IT WAS A SEVERE PROBLEM AFTERWARDS, DURING HER 2ND SURGERY THEY HAVE SEWN A MESH INTO HER TO KEEP HER BLADDER UP WHERE IT BELONGED, THAT FAILED HER NOT LONG AFTERWARD, HER BLADDER KEPT FALLING OUT OF HER, WHEN WALKING,LAYING DOWN,DURING BATHROOM DUTIES & OUR PERSONAL TIME.
SHE HAD A 3RD SURGERY TO CORRECT IT AGAIN, IT TOOK A YR. & A HALF TO GET THE 3RD SURGERY DONE.B/C OF INS. & TRYIN TO GET APPOINTMENT.
SHE LIVED ABOUT 3 YRS. BATTLING THIS PROB. TOTAL,
EXTREMELY PAINFUL FOR HER.
1 DOC ACTUALY SAID IT'S NOT PAINFUL AT ALL.
OBVIOUSLY 'HE' HAS NEVER HAD 'HIS' BLADDER FALLING OUT OF HIM EVERYDAY.
SO HE WOULDN'T KNOW THE PAIN IT CAUSES.
EXTREME EMOTIONAL & PHYSICAL PAIN.
WALKING IN STORES, DOCS OFFICES, OUT IN PUBLIC WITH HER BLADDER FALLING OUT OF HER.
HOW CAN THAT NOT BE PAINFUL?
BUT SHE DID GET IT FIXED & IS FINE NOW, WE ALREADY HAVE CHILDREN, SO WE'RE FINE WITH THEM.
HOPEFULLY YOU HAVE YOUR PROBLEM FIXED ALSO.
.