Overcoming weakness

carolm · Post by **carolm** » Sun Mar 31, 2013 1:25 pm

HI All,

One of our newer members had asked the question in a thread about how to overcome the weakness that accompanies MC. I didn't respond at the time and of course now I can't find the thread! So I thought I would throw this out and hopefully they'll see it.

Weakness is a very real concern and it was one of my major symptoms for at least 14-15 months. It comes on with the lack of food and all the inflammation. For me the Prednisone added to it but I had to have it initially, before I started Entocort. Weakness was a major battle for me, as I'm sure it is for most of us.
Now, 20 months after getting hit with the big flare and diagnosis, looking back these are the things that helped.

1. Calories-- no doubt about it you aren't getting nutrients and aren't able to eat much. I started cooking with olive oil and coconut oil which helped to add some calories. I found I could eat Lays Naturals potato chips and they helped too- I was craving the salt anyway. I found i could eat almond butter and it was easy for me to digest-- another big help. Anytime I was a slightest bit hungry I ate.
2. Vitamins- I found a gummy vitamin at Walgreens-- MultiVites-- that is gluten, soy, dairy, peanut, and egg free. I found I could tolerate them better than a tablet vitamin.
3. Stay Hydrated-- there were times I drank diluted Pedialyte, but for the most part it's been water only. Sometimes I'd put slices of strawberries or oranges in there if I was tired of plain water.
4. Balance resting vs. activity-- All I wanted to do was sit still or lay down. Obviously that's not practical. As I started healing I hit a point where it was obvious that laying around was not going to help me build some stamina. I needed to move so I added walking, some light weightlifting and I adopted a dog (it was time anyway to add another member to the family). I felt a responsibility to Ziggy (our new corgi mix) and I knew it would make me get out and walk him, even if it's just around the block. Besides it was good for me to focus on nurturing an adopted dog than to continually think of how rotten I felt.
5. Chip away at remaining symptoms-- Where most people battle D I am C prominent. I had nausea that was indescribable in it's intensity. It would literally keep me from moving. I knew if I could defeat the nausea, I could get stronger, more resilient, and get more calories. I had Zofran and meclizine but was tired of taking the meds. I tried acupuncture. Holy cow!! within 2 weeks the nausea that plagued me daily was gone. I couldn't trust it but by the time nausea was gone on the 3rd week I was able to relax. It's been months and it's still gone. I really turned the corner then. My last challenge was dealing with inconsistent motility and that is now managed with Amitriptyline. This has given me more day to day consistency in my energy level.

Since then it's been exercise and a bigger variety of foods, after the food challenges, that has helped me get stronger. I guess my real message here is that weakness was a huge issue and at times I felt defeated BUT it does get better. It's a journey and everyone who said it would take 2 years to heal was absolutely correct. It will be 2 years for me in July and I'd say I am 90% back at this point. Don't get depressed or feel like weakness will be your constant companion. While it's overwhelming in the beginning it will subside and you'll have chances to get back to your active routines.

take care (and Happy Easter),
Carol

Lesley · Post by **Lesley** » Sun Mar 31, 2013 1:54 pm

Carol,
I am so glad to hear you are doing so well! What a great post!

carolm · Post by **carolm** » Sun Mar 31, 2013 2:08 pm

HI Lesley,
Nice to hear from you! How are you doing?

Carol

Lesley · Post by **Lesley** » Sun Mar 31, 2013 2:19 pm

You can see how I am doing in my post "Coming back from absentia".
How is your hubby?

carolm · Post by **carolm** » Sun Mar 31, 2013 2:26 pm

I'll be sure to read it.
Brett is recovering well from his ablation. He had some pericarditis (inflammation) again but overall he's doing okay. Today he's complaining about being extra tired. I think that is probably the meds.

thanks for asking,
Carol

SmallTownLady2U · Post by **SmallTownLady2U** » Sun Mar 31, 2013 7:58 pm

Thank you for taking the time to share..... It really help us newbies. : )

wmonique2 · Post by **wmonique2** » Sun Mar 31, 2013 8:42 pm

Hey Carol,

You sound wonderful and that's a very good thing. Happy for you. I am nearly 2 years into this too and I don't feel like I have a handle on this thing yet.

About Elavil...I know you went up on your dose and I wanted to ask you if you're not hungry ALL of the time. I was on 10 mg and I was so darn hungry and I hated that feeling. I stopped taking it and substituted with an antihistamine which took care of the nausea. I am, however, having cramps and spasms. Does it help you with that? Or just motility (you go less? not clear I understand the symptoms).

Glad hubby is doing good.

Thanks so much.

Monique

coryhub · Post by **coryhub** » Mon Apr 01, 2013 11:12 am

Hi Carol,
Thanks for you post. It helped me to remember being so tired I could not get out of bed to shop or prepare a GF meal. It reminded me that I've come a long way. I used to have headaches that lasted days and Tylenol did not help. Today, fatigue and headache are still symptoms that I have been "glutened" and this happens when I let my GF products get depleted or I let myself get too hungry and risk take-out. This weekend, to solve this problem of running out of safe foods, I went to Ikea and bought a shelving unit for my walk-it closet & hung a sign on it: "Cory's Gluten-Free Pantry". I stocked with emergency items: almond milk, corn chex, cans of corned beef, sardines, rice crackers, GF-pastas, beef jerky, Jasmine Rice, GF bread and pizza mixes. I don't want to run out again and risk those headaches!
Cory

carolm · Post by **carolm** » Mon Apr 01, 2013 1:55 pm

Monique-- The Amitriptyline doesn't make me go less per se.... it helps me go daily by regulating the spasms and keeping motility even. Otherwise what was happening was that I'd have one day a week where my gut would spasm and get overactive and I'd have 8 BMs in a 2-3 hours time span. For example, I may get up feeling "off" or tired, then about 7:00am the BMs would start in and by 8:30-9:00 I'd have had 7-8 significant BMs, feel nauseated and wiped out. I'd end up taking Imodium to slow things down and some Zofran for the nausea and going home to lay down until the meds kicked in.
The only humorous part is that my GI Dr's nurse would ask me "on the average how many BMs do you have per day?". After the third time I said 'well if you want to average them out it averages to one per day, except that I'm having a weeks worth of BMs in a couple of hours every week". Once my gut motility became aggressive there was no stopping it. And it didn't take much to get it rockin' and rollin' -- it could be that I was sleep deprived, or that i was slightly anxious about something happening that day, and Wham! Apparently this is not a common thing with LC. When I asked if anyone else had this pattern on our site, no one else did.

As far as hunger that hasn't been a side effect I've experienced. I think my hunger varies based more on how my stomach feels (queasy or not) and how much I've eaten lately. For example, food just did not sound good on Saturday so I ate little, and yesterday my appetite was much stronger and I ate more. I haven't seen it vary with the changes in dosage. And I'm already on Claritin--- it's another constant in my life. About the only side effect I have from Amitriptyline is foggy brain the next morning and that lasts until about noon. On my usual 10 mg dose I don't even have that. I'm happy to muddle through the slight drug hangover if it means I can have more predictability in my day. And it worked like a charm a couple of weeks ago when I had more hospital duty with my husband. I was stunned. I hope I've answered your questions.

Cory, I'm glad my post reminded you of how far you've come. I don't EVER want to go back to those days where I was too sick to get out of bed before noon and a trip to the grocery store was a major accomplishment, mostly because I felt like I could fall over at any time.

Carol

wmonique2 · Post by **wmonique2** » Mon Apr 01, 2013 2:54 pm

Hi Carol,

Thanks for your answer and you did answer my questions. Seems like i have some similar patterns like when I am about to have a flare. It starts with like 4 BM's one day then I start feeling awful with cramps and weakness for like 1-2 weeks and I can't speed up recovery. And it has to run its course even though I go on a soft food diet immediately and limit my food intake.

Yeah, I have the same brain fogginess with elavil in the morning. It doesn't clear up until noon either. Good that it's working for you :-)

Monique

brandy · Post by **brandy** » Wed Apr 03, 2013 4:35 pm

Hi Carol,

Good report on managing/overcoming weakness! I'm about 18 months into heading into healing and have just started feeling better the last 3 weeks. Looking back I think getting enough calories early on is key.

I found I could eat Lays Naturals potato chips and they helped too

These seem to be the only potato chips I can tolerate. I learned the hard way last week when I tried a different Lays product.

Brandy