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Posted 7/13/2013 8:28 PM (GMT -7)
Hi! I am new here...needed someplace to rant and air my frustrations as well as hopefully find some support. I'm 34 and was diagnosed with FM officially about 4 years ago after many years of unexplained symptoms and millions of tests and doctors. While having the diagnosis is great in some ways at other times it can be frustrating.

I don't know if this is true for anyone else but when a "new" symptom pops up I struggle with is this "just" a new super fun twist on a FM flare up or do I need to go to a million doctors/under go a crap load of tests (stress=more pain) to find out if something else is wrong with me? For example, this time it started with diarrhea/changes in BMs and other GI issues. Of course an extreme escalation in my more typical FM flare up symptoms (pain, fatigue, etc) followed. So, after a few weeks went to my pcp who gave me some antibiotics which the side effects pushed me waaaay over the edge. Then follow up appt with gi dr and possible colonoscopy on the horizon. Probably will boil down to FM in the end but now, of course, worrying about the worse.

So, again, just looking for support and reassurance during a frustrating time and wondering if any of you have ever experienced GI symptoms as part of a flare up. Thank you for letting me vent!
Posted 7/14/2013 12:14 AM (GMT -7)
Welcome sunshine! I am glad you found us because it's a great place for support and to learn to manage your fibro better. Sorry your going through GI issues. I have been down that road many years ago. Many of us have issues with GI problems. I bet many others will be able to help you here.

I would say if your insurance covers your GI Dr. I would go see them. It could be fibro causing some of your problems. The GI dr's have so many tools to use these days to get a proper diagnoses. Sometimes fibro does cause irritable bowel. But it takes a diagnoses to get meds for it. If your not crazy about a colonoscopy then have them do basic test and simple treatments first. Then if it's not better then do the colonoscopy. Sometimes I think some Dr's don't try simple things first before they do so many invasive expensive test.

Have you been tested for lactose intolerence? Many here are lactose intolerence. Mine has got worse. I know looking at your diet when having GI problems in a huge factor. I know others here on the forum have great ideas on that. I am just learning to change my diet some and it has help. Do you have GERDor take meds for reflux problems ? Did your Dr. do blood test to check if you have a bacteria in your stomach? Sometimes that is why they put you on antibiotics. Sorry so many questions. Can't you tell I am a nurse. Lol

I am not sure if you read books on fibro. I have found them so beneficial to my managing fibro. I was amazed how much info was in them to help me. I hope they can find out soon about your gut. I hope to see you around the forum.

Post Edited (ak angel) : 7/14/2013 1:17:05 AM (GMT-6)

Posted 7/14/2013 7:38 AM (GMT -7)
Hi, Sunshineray, and welcome! Many with fibro have IBS. There are others with intestinal problems like ulcerative colitis and Crohn's disease. I have Crohn's and it is a separate issue from fibro. UC is also but not necessarily IBS.

I have two suggestions before you start undergoing a bazillion tests. Number one....keep a food journal. See if you are reacting to certain foods. We can develop allergies and sensitivities at any time...all people. Not just fibromites. There are certain foods I need to avoid. Also chemicals like MSG. That makes me nearly faint. So pay attention to what you eat.

Number two, antibiotics kill all bacteria...the good as well as the bad. You can get diarrhea from this. I suggest that you start taking a probiotic and see if this helps. I was on antibiotics for three weeks last month. I finished them all and thought all was well. Well, several days after I finished the antibiotics, I felt like something was on my tongue. I got a mirror, stuck out my tongue, and my eyes became saucers! The back of my tongue was black! I thought what now! I started googling black tongue and saw that this can happen with poor dental hygiene and that definitely doesn't describe me. So I knew the only thing different I had done recently was take an antibiotic. I googled the name of the antibiotic and there it was! Black tongue was a secondary infection that could be caused by this antibiotic. I bought a month's worth of probiotics, started taking them, and my tongue was back to normal in four days. I will finish the month of probiotics to make sure I have plenty of good bacteria back in my system.

Be sure to read Fibro 101...the first thread on the forum. There are links to good I of about fibro and you will learn a lot there.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine
Posted 7/14/2013 8:00 AM (GMT -7)
Hi SunshineRay,

You sound like me! I have been to so many doctors and most of them don't take me seriously especially with the Fibro! I have a laundry list of symptoms and illnesses. I was diagnosed with IBS and lactose intolerance many years ago. It is a good idea to have a food journal to see if a certain food/s are bothering you. I can't eat fried greasy foods, gassy vegetables or cream sauces. I also can't have milk. I have many other symptoms also and it seems as time goes on I get new ones which make me very frustrated and depressed. My doctors just throw pills at me but due to the Fibro, I am very sensitive to alot of meds and get side effects. This frustrates my doctors that they just throw their hands up in the air and basically tell me that I have to manage symptoms and live with it. I hope you find something that works for you!!
Posted 7/14/2013 9:32 AM (GMT -7)
Definite on the colonoscopy. Bowel disease or IBS needs to be diagnosed. It might just be a pain in the butt, or it might be a real issue that needs addressing.

Agreement with Sherrine here. A food diary is a place to start, but along with colonoscopy.

And, yes, when experiencing bowel issues, your fibro will flare. I had a similar reaction to antibiotics last fall. I have had UC for some time, and then recently diagnosed Crohns on top. When your gut feels lousey, so does everything else.
Posted 7/14/2013 9:56 AM (GMT -7)
Thank you for all the kind words, pointers, and advice. It is great to know that I am not alone in how I'm feeling. I know all of the tests are a must. It just gets exhausting and I'm ready to feel better and enjoy summer! Thanks again!
Posted 7/14/2013 10:48 AM (GMT -7)
Welcome Sunshineray

All good advice.. I too always wonder if any new symptom is fibro related.. that is how I found this forum !!

Now I do searches on here after reading the info in fibro 101..
Posted 7/14/2013 11:39 AM (GMT -7)
As DianeB says, all good advice.

I developed gastritis after taking an NSAID for a while after surgery. Even while in the hospital following the surgery, a nurse, dietician, and the surgeon all told me at different times to eat lots of yogurt and take a good probiotic (Sherrine mentions probiotics here). They can really make a difference as to how your stomach feels, but of course, diet in general is important too. And as others mention here, food sensitivities or allergies are not at all uncommon. Sometimes it pays to be a food 'detective.'

I have a book written in 1992 by DeLamar Gibbons, MD called "The Self-Help Way To Treat Colitis And Other IBS Conditions" and it was very helpful to me, when I developed stomach issues. It's likely still available, if you do an online search. Very easy advice to follow.

Would you believe I developed chronic diarrhea in 1994, and it wasn't until 2011, when I had an upper endoscopy and also a colonoscopy (yes--worth it!) before a doctor would finally tell me it's how my system now functions, for some reason? I thought I had a horrible disease for a time, because nothing was really checked out.

I highly recommend those two tests. The prep is the worst, I think, and they basically walk you through the tests (I practically slept!). If your doctor recommends it, it's probably a good idea and might help pinpoint what exactly is going on, and alleviate any anxiety. Best wishes and keep us posted.

BTW, I love your name--so cheerful sounding---and welcome!! yeah

Posted 7/14/2013 12:41 PM (GMT -7)
Hi
It is interesting reading these posts, as I have read that fibro sometimes starts after a virus or illness. I had gastritis years ago and followed with strong anti biopics, then I got shingles, lost my sense of taste (shingles sits in middle ear I was told by ENT specialist) then got a few bouts of severe vertigo, then the diagnosis of fibro, which I tried to ignore until this last flare, which led me to this forum...one thing that I have used for many years whenever I get gut problems is slippery elm bark powder.it. Is very safe, you can buy it in tablet or powder, which you miss with juice or water. It is a very old herbal remedy and it soothes any inflamed mucus membranes ie the lining of your gut.

And to everyone in this forum, your posts have helped me to take this more seriously and to think about changes I need to make to care for myself better and not push myself too hard.

Thankyou
Posted 7/14/2013 1:05 PM (GMT -7)
Elkhart: I took slippery elm bark tea for months, and yes-- it sure did help my gastritis! I also took about a tablespoon or two of aloe vera gel from GNC and mixed it in a glass of water every day. Too much will cause loose stools, but just a little every day helped me, though I read on the gastritis forum at another website that some people can't handle the aloe vera gel. I love the natural remedies, when they work. So glad you mentioned the slippery elm bark powder here--it was very helpful!
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