Help me help myself?

[Sazed]

Long post ahead:

I am am going to be brutally honest about myself. I need help. I have a great team of medical providers, but that have all failed so far to give me an option that has worked for me.

I'm almost 40. I weigh 400 lbs. I'm a nurse that is struggling to work because of horrific spasticity and due to the spasticity, I'm becoming more sedentary.

My left leg is a mess. I take 90 mg Baclofen, 24 mg Zanaflex, and 4 mg Valium daily as well as 500 of Botox every 3 months in the left leg. I don't get the seizing of the leg any more, but the pain and difficulty bearing weight on some days are still present.

My primary doctor believes me about about my eating habits because we have been through hell and back. My lipids are great, my sugar is great, I have the labs of a 200 lb. runner she told me (minus the hypertension).

I've had MS for a couple years now. Been on Gilenya for over a year and last MRI was promising. No active lesions, few new smaller lesions that may have presented during switchover from other 2 meds I tried and failed.

I work nights. I eat salad with a hard boiled egg and 2 tbsp cheddar cheese / dressing or fish instead of an egg for 1 meal a day. I drink 2 cups of coffee and water only daily. Some days I eat 3 meals and some days it's only the one. If I'm busy at work, I don't eat. If I'm not hungry, I don't eat.

My doctor tells me this may be the problem? I need to eat even when I'm not hungry to keep a regular eating pattern. How do I force myself to eat when I have meds to pass and patients to talk to before they go to bed?

On top of this, even if my leg was up to it, my insurance will absolutely not cover any med for fatigue other than Provigil which gave me bad headaches - so I fall asleep a lot and have such low energy.

I have a young daughter and I want to see her get married some day. I want to meet my grandkids. 400 lb. people rarely do that.

I am open to any advice or opinions.
Thanks.

[marti]

One of the first persons I met when I was dx with MS was a woman who was way over weight. She had diabetes and heart disease. But you sound like you've done all the right things, eating right etc, and still your body is betraying you. Although I can't identify with your problems I do sympathize with you. Just to let you know, being under weight is no picnic either!

I wonder if some of your meds could be causing some of the weight gain. And how long have you been this heavy? Has this been a lifelong struggle for you or did this start with your health decline?

I'm sorry to hear all this about your problem. Surely there is a specialist somewhere who can tell you what you need to know and help you. I'd like to see you at your daughter's wedding some day!

[kelm10]

iinfo

I, too, was in your shoes.

It helped, a lot, to get off night shift. I know this may not be an option.

I would also recommend reading the Whal protocol. Once I started the Whal Protocol I have lost 100 lbs. I, too, ate salads, and fairly healthy. I had the great labs. I bought the book off of Amazon.

The diet/protocol gives you the supplements if you can not convert to the diet right away. They are alpha lipoic acid, acety-l-carnitine, and CoQ10. It does help some for my fatigue. You may not notice it right away, but, if you stop them, you notice the difference.

But, eating the meals that you need is a great idea, also.

Has your doctor talked to you about the baclophen pump for spasticity?

[Mamabug]

Sazed -- Do I understand you correctly? That some days, all that you eat is one hard boiled egg (78 calories) plus 2 T of cottage cheese (24 calories)? Oh my goodness -- no wonder you are gaining and retaining weight. You are starving your poor body and your body is hanging on to every last calorie that you offer it.

Your doctor is absolutely correct. You need to establish a regular eating pattern and eat even when you are not hungry. 1200 calories is often considered a weight loss diet. Yours is a starvation diet.

Please call your doctor, today, and request a referral to a dietician.

I can give you a few specific tips, but you need more than these ideas. A 3 small meals per day plus 3 small snacks per day diet might be a good fit for you. Some easy snacks to take to work are dark chocolate and almonds. 16 almonds is a serving size. If you are not hungry and want to eat less, try 4, or 8, or 12. I eat one or two small pieces of dark chocolate per day. A serving size is 5 pieces, so I'm not getting a lot of sugar from them and they are healthy.

Learn about the "plate method". Take a plate; I prefer a lunch size plate rather than a dinner size plate. Visually, divide it into 4 sections. In one section, place a 2-3 oz piece of meat -- about the size of a deck of cards. In the second section, place one serving of a whole grain or a starchy vegetable (potatoes or corn). In the third section, place one serving of non-starchy vegetables. In the last section, consider a small serving of fruit, a small salad, or drink a glass of milk instead.

If you are unable to find time to eat meals during work hours at night, schedule times to eat during the day, even if you have to set an alarm to get yourself up.

If you are worried about this being too many calories for you, after a week or so of beginning to convince your body that it will be getting enough food, move to doing this two days (one mid-week, one weekend, like Wed and Sun) per week or three and eat less the other days. If you go more than two or three days in a row with too few calories, that's when the body kicks into retaining calories to combat starvation.

Talk to a dietician. I don't agree with Marti at all. Your are not doing the right things; you are starving yourself.

[pennstater]

I was going to say the same as Faith. Your body needs a balanced minimum calorie intake each day or it goes into survival mode and stores fat.

Your insurance plan may cover a nutritionist. It may be worth going to see one. You can discuss the challenges you face at work with eating. One possibility is make ahead super healthy shakes (fruits, veggies, protein( that you can sip on the run). I know in hospital settings, difficult to plan and get time to go to the bathroom, let alone eat!

Good luck.

[marti]

Sazed -- Do I understand you correctly? That some days, all that you eat is one hard boiled egg (78 calories) plus 2 T of cottage cheese (24 calories)? Oh my goodness -- no wonder you are gaining and retaining weight. You are starving your poor body and your body is hanging on to every last calorie that you offer it.

Your doctor is absolutely correct. You need to establish a regular eating pattern and eat even when you are not hungry. 1200 calories is often considered a weight loss diet. Yours is a starvation diet.

Please call your doctor, today, and request a referral to a dietician.

I can give you a few specific tips, but you need more than these ideas. A 3 small meals per day plus 3 small snacks per day diet might be a good fit for you. Some easy snacks to take to work are dark chocolate and almonds. 16 almonds is a serving size. If you are not hungry and want to eat less, try 4, or 8, or 12. I eat one or two small pieces of dark chocolate per day. A serving size is 5 pieces, so I'm not getting a lot of sugar from them and they are healthy.

Learn about the "plate method". Take a plate; I prefer a lunch size plate rather than a dinner size plate. Visually, divide it into 4 sections. In one section, place a 2-3 oz piece of meat -- about the size of a deck of cards. In the second section, place one serving of a whole grain or a starchy vegetable (potatoes or corn). In the third section, place one serving of non-starchy vegetables. In the last section, consider a small serving of fruit, a small salad, or drink a glass of milk instead.

If you are unable to find time to eat meals during work hours at night, schedule times to eat during the day, even if you have to set an alarm to get yourself up.

If you are worried about this being too many calories for you, after a week or so of beginning to convince your body that it will be getting enough food, move to doing this two days (one mid-week, one weekend, like Wed and Sun) per week or three and eat less the other days. If you go more than two or three days in a row with too few calories, that's when the body kicks into retaining calories to combat starvation.

Talk to a dietician. I don't agree with Marti at all. Your are not doing the right things; you are starving yourself.

So sorry.. what I meant was that her labs seem to be on target as far as we know. I don't know much about diets. It just seemed like her blood sugar and cholesterol seem good.

[TinaP303]

I've got to concur with Mommabug & Penstater. Your poor bod is screaming for fuel. Visiting a dietician can give you pointers & help you, a lot.
It's super tough to impossible to lose weight when your body is fighting for every calorie.
Good luck & post again we're rooting for you.

[pennstater]

Forgot. Backing up what mamabug said about 3 small meals with snacks in between. This approach keeps blood sugar's stable and helps optimize your metabolism.

Any chance that while you work on new eating habits and your body gets used to it, that you could take a few weeks leave from work? It may help.

Rooting for you.

[Sazed]

Thanks

I'm not able to take time off. I've exhausted that with 9 weeks off last summer for a really bad period with my leg after a fall and some intermittent days off for fatigue and spasticity.

I had an ER doc yell at me last week that frustrated me into posting this. "You're a nurse. You should know better. Quit eating bread, potatoes, rice. Quit drinking pop and energy drinks. Start eating fruits and vegetables!" The guy judged me just by looking at me and I was so embarrassed. There were 2 other people in the room and it was the same company I work for!

Thanks for all of the tips. It's been a number of years since I went through my nutrition classes. I'll try harder to optimize eating on a regular schedule because I tend to eat healthy and not use filler calories or drink junk.

When I switched to night shift out of high school, I gained 110 lbs. in 9 months. My doctors were very concerned. I had labs drawn every 2-4 weeks after the initial ~40 lbs. was gained. There was never a good reason for it and it just stopped after 110 lbs.

That was 20 years ago. I have since gained about 50 lbs. since the sedentary/ difficulties exercising with spasticity reared it's ugly head 2+ yrs. ago.

A nutritionist is not covered by my insurance, but might be worth the cost for me at this point anyways.

Thank you all for the helpful advice.

[Mamabug]

...
I had an ER doc yell at me last week that frustrated me into posting this. "You're a nurse. You should know better. Quit eating bread, potatoes, rice. Quit drinking pop and energy drinks. Start eating fruits and vegetables!" The guy judged me just by looking at me and I was so embarrassed. There were 2 other people in the room and it was the same company I work for!

...

Sorry you had this experience. Doctors should be aware of confidentiality concerns and when they are counselling a patient and others are present, they should be careful to keep their comments as discreet as possible.

Jumping to conclusions (your doc assumed you were consuming lots of high carb food and drink items with low nutrient value) was also not wise of him. When I see someone who is overweight or obese, I usually "guess" that it's a good possibility that they've been over-dieting and restricting calories and that could be a reason for the weight. Because, a lot of people, when they are overweight, are trying to lose it.

We all have a BMR (basal metabolic rate). Your BMR is the number of calories that your body burns each day to remain at your current weight. Your BMR will be higher if you weigh more. You might want to calculate your BMR and try to eat this many calories at least two or three times a week. Because every pound equals 3500 calories, then, for every 500 calories less you eat per day, you'll lose about a pound per week.

Here's a calculator. http://safedietplans.com/bmr-calculator You might calculate that you need 3000 or more calories to maintain your current weight. Then, on the other days, eat less. When I lost 60 pounds (180 lbs to 120 lbs) 6 years ago, I really found that this "math" worked for me. I averaged 1200 - 1500 calories twice a week, because my BMR was lower than yours will be. And, then I ate less on the other five days. I averaged a 1.0 to 1.5 pound weight loss each week. Some weeks, I didn't lose at all. I kind of "stalled." And, other weeks I lost more. But, overall, every month it kind of evened out to a 4 to 6 pound weight loss. It took about 12 months for me to lose 60 pounds. Not fast, but, slow and steady. That's a good strategy to try for. A slow and steady weight loss. If you try to lose it too quickly, you'll either be starving yourself again and it probably won't come off at all. Or, after you lose it, it won't stay off.

I went from a size 22 to a size 6. I've regained some of that. Am probably in a size 10 now, because of several rounds of steroids a couple of years ago. But, I'm still in an acceptable weight range, after 6 years, so I keep working at trying to get down a little, but I'm OK with where I'm at now.

I've read that weight loss is 75% diet and 25% exercise. So, if you want to add some exercise, consider it. But, I lost my weight with mostly just diet. You've got to find strategies that you're willing to try. Because if you hate what you're doing, you likely won't stick to it. You might be surprised at how good it feels to begin to eat more normally again. Changing your diet, although it might take some effort at first, might end up being kind of a fun strategy since you won't have to be so restrictive with your diet anymore.

[Tia1]

I'm sorry that your struggling. I will be praying for things to get sorted out and for you to start feeling better.

[palmtree]

I confess I HATE trying to lose weight. I can never do it. The key word in the sentence is "trying". As soon as I forget about it, the pounds start melting off of me.

Faith has some very interesting suggestions. I never knew all of that. I always thought the answer was eat less than you burn off.

The only thing that has worked for me is to buy a lot of clothes 3 sizes too big, eat whatever I want, never look in the mirror and NEVER weigh myself. Have you ever bought a dress or a pair of pants that are too small telling yourself, 'I'll just lose some weight so they fit'? Next thing you know, you've gained 10 pounds.

You sound like you are being very hard on yourself. That in itself can make you want to stuff the calories into your body. My advice: pamper yourself, eat what tastes good, relax, be gentle with yourself and love all 400 pounds of yourself.