Fibromyalgia sufferer

louisejones39

hi

Anyone have fibromyalgia? I have gained 5 stone and am struggling to lose it. Tried slimming world and weight watchers and cannot seem to
Stick to anything. Am also struggling to exercise when I have a flare up, have 9 wks until I go on holiday and am Now panicking, any advice pls?

star1407

Hi yeah, I've got fibro among other things. I've tried every diet going
I am sticking with mfp for life! I have 1600 calories a day. I'm losing 2 lb a week and I've lost 2inches off my waist and 2 off my hope too

Read through all the stickies and get started! Lots of support here. Good luck x

Hollywood_Porky

Yep! Diagnosed 20 years ago. We should become friends - I have some great advice for you.

manicautumn

I have fibro. I recommend walking. I have a fitbit and it counts my steps and adjusts my calories to match. Walking and drinking water (and reducing alcohol) helps me a lot.

I eat 1200-1500 calories a day (I'm also short and within 0.1lb of my healthy weight range) and aim for 10,000 steps a day.

It's about learning to deal with your body. Weight Watchers and Slimming World, unfortunately and among other reasons, are not the best place for those with fibromyalgia. They assume a standard. With fibromyalgia, we don't have the luxury of standard. We have day-by-day. Some are going to be better.

Learn your triggers for eating. (i.e. I love eating a ton of pasta because it's warm and comforting but now I eat vermicelli instead.) Understand that not all days will be ones you can put in energy. Make the most of those that you can. Walk as much as possible, with others or alone/slow or fast. Every movement counts.

Calories in/Calories out is the formula for basic weight loss. On more active days, you can eat more. Log everything.

I hope this helps!

(I went from 150 to 135 by just cutting back drinking. Then, between May 2014 and August 2014, I went from 135 to 115 with this. I gained back to 132 over winter due to overindulging in alcohol and moving too little.)

meggrose1985

Not fibro, but I have Lupus, and the symptoms are very similar. Diet was the biggest factor in starting me losing. I lost 10lbs without even lifting a finger, just by logging my foods and eating less sugar, carbs and processed crap. I also started eating lots of anti-inflammatory foods like cherries, blueberries and ginger to help alleviate my symptoms. Once the first 10lbs were gone ( I started at 221) I felt a lot better, and my symptoms started to dissipate. I've since moved on to the Couch25k program, and do yoga as well.

tschlach

Yes, I also have it. Diagnosed 3 years ago. I knew long before the DX that I had something along that line. I gained 64 pounds in 8 years. I've been going to the gym and working out and counting calories since the end of Feb. I've list 15 pounds as of today. There are days I don't feel like I have the energy to go but I push myself. You can do it. Count your calories and push yourself to exercise. You can add me as a friend if you want. Best of luck.

chassan805

Hi I've just joined this.I have Fibro and Rheumatoid Arthritis.I had my second Spinal fusion in 10 months on the 5th of March.Ive gained 3 stone in 18 months and I now want to focus on getting fit and most importantly getting healthy

star1407

I think there's quite a few of us fibro mites on here!
Are you all familiar with the spoon theory? Originally by a lady who has lupus. They keep testing me for lupus but my ana comese back normal
Feel free to add me

tschlach

star1407 wrote: »

I think there's quite a few of us fibro mites on here!
Are you all familiar with the spoon theory? Originally by a lady who has lupus. They keep testing me for lupus but my ana comese back normal
Feel free to add me

Never heard of the "spoon theory" what is that?

AztecKermit

I gained a similar amount of weight due to Fibro medication. I have been managing to slowrly lose the weight by using MFP to keep track of my intake and a FitBit Flex to determine my exercise calories. I can't do anything high impact so just leave the FitBit walking calories as my exoercise calories with no other adjustments. It's working well for me so far. Spoon Theory is the best explanation I've ever seen.

The Spoon Theory
by Christine Miserandino www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

Cartoon image of Christine Miserandino holding a spoon
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.

© Christine Miserandino
- See more at: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/#sthash.oVWF5yNH.dpuf

debubbie

Fibro fighter here too! Feel free to add me.

I have found that losing weight and eating less fast food and more fruits and veggies have been a big help for me. Another solution has been to receive regular chiropractic and massage therapy that focuses on myofascial release. It hurts during the massage and I am sore afterwards, but a lot of my pain seems to dissipate and I am able to function again and get some sleep. I try to do this about every 5-6 weeks. I started with light exercise by riding a stationary bike for 20 minutes about 3 times a week and increasing slowly over the last 16 months to the point that I jog a half mile everyday now. Recently, I have purchased a long foam roller and do foam rolling exercises for about 15 minutes twice a week. It helps to target some of the trigger points that my pain seems to stem from. Hopefully some of these ideas may help you to alleviate some of your pain. Wishing you the best.

PeachyCarol

I have fibro, was diagnosed 10 years ago. I also have psoriatic arthritis. I've tried many different ways of eating to address it, none of them significantly improved my symptoms.

I know it's difficult at times, but the only thing that honestly has helped me is to exercise.

I started out walking with a cane, and was in a lot of pain. I just kept going. I only went a little bit the first day, but gradually was able to go for longer distances and times and ditched the cane. I've now also incorporated strength training.

Losing weight helps also. You can do that by creating a calorie deficit.

I do find it helpful to moderate my carbs to manage the fatigue I get with both of the conditions I mentioned. This is just what works for me. It might or might not be helpful for someone else, since everyone's body seems to react differently to things.

Except exercise. It really is probably the only thing proven to help.

kleighsamboer33

Any Fibro fighters feel free to add me. I was diagnosed a few years ago but have had Fibro since I was a kid. I recommend the ketogenic diet. I have tried many different kinds of "diets" and this by far, is the best and easiest way I have found to lose weight and deal with some of the fibro symptoms. Like I said, feel free to add me or ask questions.