Not getting enough calories

[Frieda]

Medications can really mess ya up. They may fix one thing, but in doing so, they can mess up 10 other things. The side effects of some meds can be horrible for some people. If I were you, I'd research the side effects for each of the drugs she's taking or has taken previous to current problems. You might find some surprising connections.

With malabsorption, you can be putting the right stuff in, but the body just isn't able to absorb and use it, or it does so inefficiently or only partially. http://emedicine.medscape.com/article/180785-clinical

Your mom may not need a probiotic. If she does, she may not need it forever. Maybe just something to boost her gut flora? I don't know. Digestive Advantage makes a shelf-stable probiotic that's reasonably priced. I took their Intensive Bowel Support formula for just two months and saw improvement.

I'm glad you're there for your mom. You two stay positive and expect to find the answers you need. They're out there.

I'd like to see her off of all of these meds, and I know she would like that as well. But I want to be sure she does it safely. That's part of the point of the lifestyle changes we are trying to make.

We bought a probiotic for her today, thank you. I will let you know if that seems to help.

We are both stubborn. It's been 7+ years, but we still aren't ready to give up. We've pissed off a lot of doctors (even been "fired" by two with accompanying nasty letters), but I don't care. They're not the ones who have to live with this.

Thanks again for your help.

[Frieda]

To the OP and her daughter, I wish you both all the best. Don't stop until you get all the answers you require.

I wish you both all the best!

Thank you!

We will stop when we hit our graves.

[knitwit]

Thanks to everyone who has shared their stories and great useful information. You are a great group and very supportive.

My daughter deserves the "Daughter of the Year Award" - every year. She has been through all of this with me - the good, the bad, and the ugly. She has researched and talked to people and works really hard trying to find solutions to my conditions. She is my cheerleader when things get down. Plus my Granddaughter is right there with us. I am very very blessed.

We are going to figure this out and will not give up until we do.

[Frieda]

Thanks, Mom. You try so hard and never feel sorry for yourself or complain--you make it easy to be supportive.

Agnes, thanks to the links you gave us, she tried a partial blended diet. She has been able to wear a belt for the last two days! I can't remember seeing her in a belt since the 70s!

We joke around and call her Thug Granny because of her saggy, baggy pants, but that may all be changing!

[lmggallagher]

Hi Knitwit and Frieda:

I have fibromyalgia too and had terrible stomach issues also. The issues with my intestinal tract were always lumped with the fibro as one of it's secondary symptoms of IBS. Which they tried to treat with drugs to no avail, causing additional problems for me..

The most helpful thing I found to understand what was happening there was reading Dr. McDougall's book "The Digestive Tune Up". I found that book very helpful and it gave me a better understanding of what was causing my problems and what I needed to do to alleviate these issues. Honestly clearing up those issues IS THE FIRST STEP TO CLEARING UP FIBRO -- IMHO!

I have to agree with you I found the medical exams and doctor's caring but of no help and took upon myself to figure this out. The elimination diet is exactly the right thing to do. I found for me gluten is a terrible problem, as is soy. Another thing was I hadn't actually given up coffee and I cannot do anything that is too acidic - I really have to watch it with fruits that way too or I can have issues.

Once the "gut issues" cleared up - and really it took only a month or so for that to be completely behind me - the fatigue and pain started reducing noticeably! Several people here have put fibro behind them and say it's this WOE. I still have fibro, but it is no longer keeping me housebound - I can exercise and participate far more than I have in years!

Other issues that you mentioned or others have - cognitive issues, huge for us and apnea. This is important and often not tested for - in fact 10 years after my fibro diagnoses I was finally tested for APNEA and Upper-airway Resistance Syndrome (URS). I do not have apnea, I do have ARS --AND ARS HAS THE EXACT SAME SYMPTOMS AS FIBROMYALGIA.

I actually had double fibromyalgia and no one had ever thought to test me for URS, which is something they should always do with our symptoms. My current Doctor who got me screened was simply aghast I had not been tested. Essentially, I had not because when I was originally diagnosed with fibro I was normal weight!

After being put on a CPAP my sleep increased from 2 hours per night to 6 per night and the cognitive function, pain and fatigue issues literally reduced within the week by half.

As for trying to get enough calories in you seem to be finding some things that you like and work for you - a really good way to find out how to maximize your calories is the Chronometer program online that Jeff recommends to us all. Try things in it's database like looking for the most calorie dense starches, maybe it's corn (oops not corn I see it's one of your trigger foods!) sweet potatoes or squashes to increase the calorie intake. Just adjustments like that can add the calories without really increasing the fat too much.

So saving the best to last, I have absolutely put all stomach issues behind me, and a lot of the fibro pain as well. I sleep wonderfully now easily 7 or 8 hours a night (especially if I avoid added sugar) which helps immensely. I absolutely think this is the way to go for fibro folks. With improved sleep, an hour of exercise daily and at least 1/2 hour meditation daily (very important for me brain fog wise) I am now taking no drugs or supplements of any kind except B 12, and am so much better that I am able to do things I haven't in years.

Mind you, I literally had tried everything and the last thing was a 10 week pain management class given by my medical provider. I had a team of doc's, nurses, psychologists, phys therapists, pharmacists and nutritionists evaluating me specifically and there was not one thing I hadn't tried (especially drugs and supplements to no avail and often with hugely bad consequences) except some accupressure techniques and nutritional changes.

One day during class when the nurse instructor recited the inflammatory foods we should consider avoiding - I laughed and said out loud "Well., that's so much food to give up that I might as well go vegan!" . This caused all 45 of us to laugh tremendously, but boy was I right about that - who knew!!!!!!

I actually started reading about that and found "The China Study" not long after. I am so thrilled with the results I actually called Nurse Barbara and told her to keep pushing that list, just when she was wondering if anyone actually ever took her advice!

I am wishing you all the best as you go forward with this Knitwit and Frieda - and I am certain, that like me, you'll just keep tweeking away until it works for you.

Take care and don't get discouraged, life takes patience and tenacity in large doses - and starches and veggies in huge quantities too

Best wishes - Michelle

[knitwit]

lmggallagher,

What a great post. I am so impressed that people on this group are so open about their problems. We can learn so much from each other. Thank you!

I know I am on the right path. Funny you mention sleep apnea and URS. I have an appointment with a sleep specialist in 2 weeks. I never heard of URS but I will sure ask about it.

Years ago doctors told me everything was in my head. Very discouraging. Now every time I go to a doctor whatever is a problem they blame on Fibro. Makes you want to laugh. Amazing what doctors and their teams can learn from all of us who are actually walking the walk.

I will let you know how things are going and I hope you keep doing better and better everyday in every way too.