Losing weight with Fibro and CFS

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I've had fibromyalgia and Chronic Fatigue Syndrome since 2005. I've also had two children in that period of time. I have gained about 50lbs since 2005. I haven't been able to find an excercise that doesn't hurt or cause me to be bedridden for days or even weeks after. Has anyone been able to find a way to lose weight while also having fibromyalgia and CFS?? I would really like to get this weight off and I know it will make me feel a little better.

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  • Posted

    Hello,

    Just to say you are not alone. I have gained nearly two stone and it's really getting me down now. Even if I wear wedges for an evening out I pay the price the next day.

    The worst part is that I havnt even had a disgnosis. The doctors are not interested at all. I've just been put on gabapentin ( two three times a day) and paracetamol when needed. They have told me that due to the cancer scare, slipped disc and general stress that's gone on over the last few months it has affected my nervous system and should improve! It hasn't and I'm miserable. I'm signed off work and due to begin uni in January to do a nursing degree. I've worked so hard to complete an access course which I'm scared may be for nothing.

    I'm so sorry I've gone on talking about myself instead of supporting you. I just feel so desperately low.

    I have looked into getting the wonder core smart fitness aparatus. It is a small compact thing which exercises every part of the body and you can do as little or as much as you want in your own surroundings and at your own pace. If you google it, it should come up.

    I'm really sorry I've not been any more help but I am here if you want a chat. Anytime!'

    Take care and best wishes

    Vicky xx??

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    • Posted

      Victoria, I am looking that wonder Core Smart Fitness Aparatus right now. I hate the way this sounds but hearing how hard it is for you make me feel a little relieved that I am not the only one. 

      I didn't know that I was diagnosed with Fibromyalgia at first. The Neurologist said nothing, just started me on botox injections, vicodin, Klonopin and Provigil for the chronic fatigue. I was a mess. I started forgetting things at work, couldn't sleep at night at all, felt woozy all the time and I didn't feel like I could care for my children the way I want to. I weaned myself off all those medications, ESPECIALLY the botox which eventually made my shoulder bones (scalpula bones) fall/sag. It took months of physical therapy to fix my back and it hurt like nothing I've ever felt in my life. It wasn't until I had all of my records sent over to my primay care physician that I found out that I had been diagnosed with Fibromyalgia. I fired that doctor by the way. Unfortuanately, my doctor put me on Cymbalta which I haven't been able to get off of because the withdrawal symptoms are so severe.

      I really want to lose weight. It's becoming depressing so I appreciate your response. No apologies necessary VIctoria. We are in this together.

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  • Posted

    does anyone else get really severe back/leg pain walking up a hill so that you have to stop all together ? 
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  • Posted

    I'm the same, I went from a size 16 to a 22, I begged doctors for weight loss surgery but they referred me to a weight loss course, but they were just telling me things I already knew. So I had athritist in my knees also so excercise was difficult, however I started myself on a strict diet and I have a Saturday off. I've now lost 12 kilos, it's took a long time, but I'm starting to notice I can now do more, even just walking around the house. It's going to take a good long while but you can do it as well, once you start being strict with yourself, you will get there. I hope this is a bit hopeful for you. Xx I really know how you feel.

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    • Posted

      Thank you so much Trisha, how often did you excercise at first and what did you do? My right knee hurts real bad when I attempt to go up stairs and when I get in and out of the bed but regular walking doesn't seem to bother my knee just yet. My pain is definitely more in my upper body, torso, arms, hands, neck, shoulders, head, and lower back at times. My legs feel like they are bruised but only when I press on them. Walking seems fine in terms of pain but I can't get far before I have to stop and rest. I get winded and feel like I have been walking miles when I have only passed about four houses from my own.

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    • Posted

      It's mainly just doing some housework here and there, sitting down for a break, then getting up and doing something else, it was more my whole eating plan I changed, now I've lost a bit I can do that little bit more, however I try not to overdo it. I also take a Saturday off from my diet and eat what I want.

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  • Posted

    Hi jennakiah, the good news is you don't need to exercise, weight loss is 80% diet and only 20% exercise. 

    The weight loss without exercise is slower but it's not impossible. I was put on a medication that made me gain almost 3 stone and i was so unhappy so i did a lot of research on weight loss while on a medication that makes you gain.

    I lost 18lb in 6 months 

    I can't exercise at all with my fibro either because i blck out if i over do it, then the usual pain and misery.

    I used something called the harris benedict equation (i found it on google) and all it does is taking your heaight,weight and exercise capability (i'm sedentary) then tells you how many calories in a day you should be eating for maintanace of your current weight, then you take away 500 calories for 1lb a week weight loss.

    Again i will say my weight loss was slow but it's not imposible.

    A few friends of mine have had real success with groups like slimming world etc but i didn't want to go so just found my own way.

    and i'm sure you will find yours, just know you're not alone in this and losing the weight is not impossible and theres no need to exrcise to acheive it.

    Good luck.

    xx

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    • Posted

      Gill,

      This is great!! I am going to calculate it now. The strange thing is that the Cymbalta makes me lose my appetite but I still don't lose weight. I think my body goes into starvation mode and stores fat. But I'm not really sure. I am going to try this starting today!! Thank you so much!! 

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    • Posted

      Good luck, just be patiet and just make sure you count and weigh  everything every calorie counts so count cups of tea, coffee, milk, even ketchup.. your calculator and kitchen scales will be your new best friends and after 6 months you will know the calorie content of everything..lol. 

      but you will discover loads of low calorie treats too.. my favs are weight watchers caramel cake bars, so nice and only 80 calories for a chocolate fix, yum.. i can also recommend  danone light & free greek yogurts 58kcal a pot and ambosia lite rice pots with a squeeze of tesco squeezy strawberry jam 100kcal. great sweet fixes and go to snacks, if your a crisps face like me then french fries are the way to go. 

      The best way is take what you normaly love to eat that isn't so good for the waistline and substitute it for a lower calorie version.. also bread, Hovis nimble bread is only 51 calories a slice instead of the standard 134 a slice of normal bread. it is smaller slices but you will get used to it. (the ambrosia lite rices are on offer in tesco's 8 for 3 quid.) 

      xxxx

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    • Posted

      ooo i forgot one, tesco's ice lollie/ice creams, in fruit flavours 6 for a pound and only 65kcal per lolly.. ice cream for 65 calories.. bring it on!.

      x

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  • Posted

    Hi jennakiah,

    I'm wondering if you've you had your Thyroid levels checked.  I gained over a stone and couldn't understand why as I was hardly eating, due to being so totally exhausted, as all Fibro sufferers will know.  Anyway, blood tests showed that my thyroxine dose needed to be changed and within a month, my weight was back to normal.  Just a thought. 

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    • Posted

      Hi Sukes,

      I've had my hormone levels checked and I have a condition called PCOS which does affect my weight but not to this extreme. It's been quite some time since I've had my levels checked so it wouldn't hurt to do it again.

      Thank you for your input that was helpful.

      Jenn

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  • Posted

    I am just starting the gym yes it dose couse me lods of pain and im only there 20/30mins atm but its a start is they way im looking at it i can only go 2 times a wk as the first day after im in bed the second i try and get out third either back at the gym or still reasting if i cant go i try not to beat myself up but its not easy but every time i go i think its more that what i was doing even though it puts me in more pain i have been told it would work. How young r ur children is it that they r still young u cant have bed ridden days?
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    • Posted

      Hi Kezzers,

      My little ones are 5 and 9. My oldest is 20. Unfortunately, my two youngest children have learned to do a lot for themselves and know when I am unable to get out of the bed. We always keep food around that is simple to make for my children and lots of healthy snacks. I wish I could say that I don't have those days but I definitely do. My 5 year old will come sit on my bed and "read" to me or show me something she's made. My little one tells everyone that she is going to be a doctor one day so she can heal me. How horrible it is to see my children feeling bad because they know their sweet hugs hurt me. 

      They are both currently in Martha's Vineyard for the summer with my mom. She begs me to take them each summer and it's hard to say no when I know I can't do the things with them that my mom can do during the months that there isn't school. I miss them and talk to them each day in the morning and again at night to hear about their day and say prayers before they go to sleep.

      I'll be honest, I do beat myself up over it at times. The worst feeling in the world was when my youngest fell when she was three and I couldn't pick her up. I literally dropped myself on the floor and held her because there was no way I could lift her without fearing dropping her. On my good days I know I overdo it because I want my children to have fun memories with me. I will take them to the pool but I can only swim for a short period before I feel drained. They beg me to come back in the water but sometimes I just can't. It's depressing.

      I use to be a runner. I loved it. It's been so long since I've been able to run. I miss it terribly. I use to go bikeriding, rollerskating and swimming with my oldest daughter often. My little ones can't believe I ever rode a bike or rollerskated because that is not their experience with me. It makes me sad.

      Jenn

      xx

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    • Posted

      Hi JennaKiah,  

      I have tears in my eyes after reading your very moving post.  

      Most of us with Fibro will be able to relate to that terrible, totally drained feeling that completely takes over the whole body, but reading about how you beat yourself up over not being able to play for very long with the children, made me feel so sad for you.  It must have been so frightening for you when your then three year old fell and you were unable to pick her up.  I know that feeling well, if I fall, I'm not able to get up without help and I feel so vulnerable.  How lovely that she wants to be a doctor so that she can heal you - bless her heart.  

      I've had Fibro for years, but actually didn't know what it was until the Rheumatologist explained it to me just a couple of years ago.  I thought that all my pains were to do with the Arthritis and the Spondylitis.  It's a horrible condition and I may be wrong, but I believe only those who have experienced it, can truly understand what sufferers go through.

      Your children know you are not well and they love you unconditionally. Mine are grown up with children of their own, who are almost old enough to be parents themselves - God I am really old aren't I   wink

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