RA and Weight Gain?

Ok, have any of you lovely people out there gained weight due to lack of exercise, and also because if the type of meds we are on ? I was told by someone with RA that if we take Arcoxia, that it slows the metabolism? Since I've been on all the meds and barely any exercise due to this Insidious Disease, I've gained weight, and I'm not happy, FATigue is horrible, pain ridiculous,and I've changed, my personality has changed dramatically! I'm almost a recluse! don't want to go out! my hubby is fab, so supportive and helpful! but I don't have any desire to go out....I'm happy with it though, but it isn't me....before this rotten RA I was out going, I'm the opposite now........oh well I do put it down to the meds, FATigue, and the pain......that is why this Site is important to me, I've had this Disease since 1985/6, and I'm still learning new things about this dreadful disease and the B12 deficiency, Ridiculously low Serum ferritin......the list goes on and on.......ok will stop rambling.....anyway, any comments will be greatly received :) Jill

44 Replies

  • Gosh you Jill! ! Lol !!

    Yes I totally agree with you, I have struggled with my weight since I got blooming RA! I was given steroid drips, steroid jabs, dmards, biological etc etc and put weight on, also I used to go and do lots of walking, hillclimbing, cycling, swimming and then it went from that to line in bed for a lots of days on end.

    So my Rheumy nurse told me right at my diagnosis oh u r the worst type to get severe RA! And gosh was he right. That's my IM always so grateful to the site as it kept me company until I was well enough to go out at first in the real cheer or in the scooter and eventually with my crutches but fonly for short time outside, but I try to stay positive by planning in advance, now I know I look nothing like I used to look, but inside I am still same person, so therefore people can in my view either accept it or not, it's their choice.people see an old fat lady with crutches, my family see well. Me! And if anyone wants to be judgemental when I am out bring it on, my hubby and kids would have something to say about it!

    I used yo get embarrassed going to meetings but somehow developed a bit of a thick skin, I just thought I can fit inside in pain or go out and have a life in pain lol. John Lennon said life is what happens to you when I r busy making other plans, don't know about you but I sorta agree with that . I think do it, don't lose the wonderful contact with friends and family xxxx

  • Been lucky so far even steroids have not put weight on.I do swim once a week and try to take a short walk again once a week. The meds we take i think do cause problems with our bodies. But what to do if i don't take meds i don't function.As for the going out still do a bit but nothing like i used to its this dam fatigue it just comes from no were !!! Christine xxx

  • Hi Allanah and Christine.....thanks for your replies....Allanah your so right....I do stay positive.....lost a lot of friends with this rotten RA....they always asked me to go out.....I struggled, so stoked and eventually they stopped asking, slowly lost contact with them....now have one best friend, who's got fibro! buy she's like she has RA.....anyway.....ya both right Girlies.....and it's good to hear it's not me just being a lazy fat greedy pig lololol.....seriously though, I'm getting worse RA wise.....thought by now it would all be settled.....but like you guys, I have it severely....Eeeeek.....and otherconditions too grrrrrr.......great yakking with ya both xxx

  • Ye I lost friends too, they didn't have patience to wait on me following them into a restaurant 5 mins behind them or think to offer to drive ! But their loss , what upsets was one had RA and I spoiled her rotten before I got mine ! Oh well nought so queer as folk as they say here In the north xx

  • Ive found this too one by one friends stop calling then all of a sudden theyve given up on you when you need them ... Im also gaining weight just had x-rays and bloods to see if I can start Cimzia will know more on Monday after seeing nurse will let you know x

  • I lost all my friends too.....I was in too much pain and the fatigue was just crippling. For nearly two and a half years I stayed in the house. Once I started on the biologicals there was an improvement in the pain but I had lost all my confidence too as I walk with a limp now.

    When I first started dealing with this disease I went from a size 16/18 down to a size 10! Now I'm back to a 12/14 so I'm happy enough with that. I do watch what I eat and I walk the dogs everyday in the park. I always put on weight easily all my life so I know what to do and what not to do.

    Recently if fell in with one of my old friends only to discover that he has bee diagnosed with this terrible disease. He has lost a load of weight too but he is in the early days so he may put it back on. We talked for hours, he vas so glad to speak to someone who knew exactly what he was going through.........just like this site...

  • Me too! Last year before everything flared up I had joined Weightwatchers as 14 years in a desk based job and a knee operation a couple of years ago had turned me into a heffalump. It was really, really difficult but in 6 months I had lost 2 stone. I was so pleased with this slow steady weight loss as I thought I stood a better chance of keeping it off. Anyway then my RA ramped up and earlier this year I was put on Pred and gained 3 stone :-( My hips and back are so bad I can hardly walk now and have no idea how I will ever shift this latest weight gain, let alone all the blubber I was already carrying. This is a detestable, despicable disease and I hate it with a passion.

    Ooh sorry, I got a bit carried away there when all I meant to say was Yes I have gained weight too!

    JoJo xx

  • I yo-yo'd the first few years with steroids but once off them managed to lose all the weight - so there is hope Jo-Jo :-} I've just had to accept that each time I need to have a big course of steroids my weight will rocket up but that I can lose it again afterwards. Two surgeries and 3 courses of steroid this year have had the needle swinging upwards again at the moment. The lack of exercise is a big problem, I always managed my weight by being very active before this disease - running, gym, martial arts. I'm currently using a pedometer again to encourage myself to be more active, even though it is just slow walking around the house - find myself wondering if I could count the crutches hitting the ground as steps as that would double the total! I do find that it makes me competitive with myself though and I have increased the number of steps each week:-} Once all the surgeries are over [1 more to go] I'm going to go back to a Pilates Class that is run by physios for people with spinal problems at the local Nuffield hospital as that made a big difference to my core strength and therefore my tummy. It was recommended by the spinal surgeon when I last saw him. There is one physio to every 2 people so they really make sure that you get the alignment right and there are only 8 people to a group.

    I do empathise as it's undoubtable demoralising and makes things worse for our joints carrying the extra weight:-(

    Whatever your weight and size it doesn't reflect on you as a person - remember that, you're lovely inside and out:-}

    Cece x

  • Go ahead JoJo.....you just let rip if that is what you want to do......we have all been through it too.....XX

  • The passion in your posting Jo Jo, you let it out girl LoL!

  • I totally agree Jill - I've put on over a stone since being diagnosed with RA a couple of years ago. I used to be outgoing and had a great social life and loads of friends but now I don't normally have the energy to do anything other than go to work. I am fighting back though and have just started an evening class so I have more to fill my life other than work and RA! It doesn't do much to help with my weight but does make me feel better in myself - which is half the battle for me....

  • I put on four stone in as many months due to knee problems. I have lost friends who couldn't be bothered,people who i used to work with don't bother with me now. This site has been a blessing for me as there has been like minded people who know what i am talking about. I rarely go out at night now as i am too tired all the time. I use a scooter now as walking is difficult for me now.. I can't shift the weight at all as most of the time i am soooo fatigue and ache so much so how am i supposed to get out to exercise when just living is such hard work.xxxxx

  • There are diets out there for people who can not exercise . I follow one by the British heart foundation . It works!!! I lost 3 stone a couple if years ago and kept it off. It is an on going battle but does benefit RA sufferers .

  • I have lost nearly a stone by following my version of low carb dieting. No sugar is allowed in the house, not even the bits in low fat yoghurts or in ketchup. And no refined carbs like white bread. It took a while to get used to, but now its automatic. (I can't exercise at all, except for surfing online or on the sofa!)

    Worth a try?

  • Do you have a site I can go to for that diet, I live in Ireland.....

  • I discovered the Harcombe diet through someone on this site, I think it was Paulywoo. You can find out about it by looking at her lectures on Youtube for free - Zoe Harcombe - she wrote "The Obesity Epidemic."

    The thing is it isn't really a diet as you don't have to be hungry. But you do have to change your habits.

    I have learned a lot from Youtube!

  • Thanks Phoebe......I'll have a look. I'm a veggie and as most veggie tend to be thin I have a terrible sweet tooth.....battling it all my life!!!!!

  • yes I have gained weight as well due more to lack of exercise I think but defo think meds have a lot to do with it as well. take care michelle :) x

  • Yes I have also put weight on with this horrible RA, I keep telling myself that I must loose weight but due to lack of exercise and fatigue I find that I don't want to do as much as I did before this RA !! It has changed me.... aaaaarrrr I hate it but there is nothing I can do about it, I have it and still have difficulty exepting it !! like Harpy I have joined a club just to get me out of the house, I have also joined the local arthritis group and now starting a NRAS group, but unfortunately all this is not helping me loose weight, so people will just have to accept me as I am.!!

    Take care Wendy xx

  • Its sad to see friends dropping off, I don't remember the last time someone popped in to say hi :( Even my girlfriend who I used to go overseas with (before RA) hasnt contacted me despite my leaving messages.

    As to the weight, like you guys, I wasnt too bad till I packed it on with the steroids

  • Hi Jill like yourself I'm well overweight mostly due to the steroids and as i have stepped them up again to combat the RA constantly attacking me, Some say they starve themselves other try various diets but i need help now I've went from Mr Blobby to Yokihama the Suma Wrestler any advice would be nice.Mattcass

  • Matt check out Dr Michael Mosley's 5:2 diet - the original Horizon programme is on U Tube - 2 days a week you restrict what you eat to 6OO calories [men] the other five you just eat what you want [within reason]. You lose steadily but don't feel hungry and the science bit explains how all kinds of positive changes happen in your body chemistry - there's a book as well. It's ideal if you're not able to be very active. My GP recommends it to folk and has taken it on as a lifestyle change herself due to the number of hours that she spends sitting behind a desk in clinic.

    Cece x

  • Sounds fab Cece :)

  • Hi matt as

    Thanks for your reply...Cecelia has sent you a fab post, think that's the way o go....for me, I always counted calories, none of the starving, waste of time and not good with the drugs we take.....maybe when your off the steroids, perhaps you can write down the types of Good and bad foods you eat.....once you see your food diary! cut out the bad! don't buy it! don't eat it....but make sure you give yourself a lil treat now and again.....think it will motivate you.,count the calories etc,also, you can buy a book that count the calories for all the foods there are....hope this kinda helps, but your not alone ok :)

  • Hi, I too can't be bothered to go out now..I have two very good friends, others just dropped off, I don't think they understand the complaint at all...the effort to do anything as you say the fatigue is horrendous. I seem to be mentally unmotivated, I can't seem to want to do anything. I have a wonderful family but even a couple of them are not very helpful....I think they see it as arthritis only and not aware of all the other problems...and Oh Boy there are a lot of them...it has changed me completely, I used to work for animal welfare now I can't even have an animal...I used to go horse riding now ...I might be able to get on with help.....but I.d be up there for days unable to get off!!!! My knees give way when I walk....Oh My listen to me!!!! Stop Mary enough!!!! All I wish is that I had motivation it seems to have flown out of the window...however, I am starting an Eng Lit degree with the OU...terrified? Yes I am. I just hope I can find some mental "get up and go" at the moment it's very thin on the ground. I understand exactly what you mean...I don't even think I'm the same person inside anymore...I still have my humour so that's something I guess. Let's brave the world in any way we are able! !!!!!! Maryx

  • Have a look at butyoudontlooksick.com.......get your family to have a look at it too.....it explains better than we can.

  • Thank you very much I will...because as you know we don't always look ill...many people say to me..."but Mary to look at you, you.d never think you were ill". I will def look that up. Thank you. Maryx

  • Have a look and let me know what you think......if it helps you pass it on to others who are like us.....outwardly looking grand, even healthy but inwardly in terrible pain and distress. All the best. XX

  • Yes still have my humour, thank goodness....congrats on doing your degree, well done!! That will give you the motivation to do it....I'm not the same...but thanks sooo much for your reply, means a lot to me, seems we all have the same kind of life with RA...mines got worse as the years roll on.....grrrr....oh well, plod on we must lol xxx

  • I think that's all we can do but some days I do wonder why???!!! It sometimes seems too much for me to cope with, then I feel ashamed as the stories I've heard on this site are far worse than mine....yet another day I'm quite upbeat. I suppose everyone feels like that no and then...I just want the old Mary back...I just can't be bothered to do anything..it's dreadful isn't it..I really should "buck up". I do tell myself that every day but some days I guess I just don't hear it!!!! Take care and as you said...let's plod on waving our banner. Maryx

  • Hi Jill

    Everything you have pointed out is me 2. I hit 40 then RA came along not long afterwards, was of work for 9 months was only back 5 months then a flare up which is now in its 5th month now waiting for a synovectomy.( managing to work with been able to sit when I need ) This disease is so depressing, I was so glad I didn't join the gym in May, but I'm determined to get there as I've had enough of not been able to play my sports and join in with my 2 young boys with there rugby training. I here yoga and swimming or aqua aerobics is good for us. Hope you get sorted soon. X

  • I hope you do too. I'm meant to be going up to the horses this coming Sunday...that should be a laugh...if I get on, I might try to go a bit faster than I did last time.....I.d only allow him to walk!!!!! And I.ll make sure I dismount correctly. I'm my horse riding days I always got off by swinging my leg over the horses head...tried it the last time leapt down off a 16.2 hands horse straight over the head!!!! My God...my knees cracked and I couldn't get up...how funny is that...you could actually hear my bones crack...I couldn't walk for days!!! So if I do get up on him, I shall make sure I get off in an appropriate manner!! I wish you the best with your gym...go grab that rugby ball !!! Maryx

  • Hi Terri

    Thanks for your reply....swimming actually Hurts my joints, so I can't do any swimming as such, but I love being in warm water, use to use a Jaccuzi, but the gym closed down....Aqua is hard, did that for a year, but again it takes it's toll on the joints, believe me.....yoga seems best....I want towish you all the best with your op, please let us know how it goes ok...:) xx

  • Mary

    Omg! hope you have a soft landing on Sunday fingers crossed X going to join a gym with a pool, swimming isn't my thing but ha ho have to change the way we think and adapt. Hope the weather changes for the better good luck. Xx Teresa

  • Hi Jill, when I was first diagnosed, I became quite inactive which was hard going as I was a regular at the Gym. I was so keen on exercise I took a gym instructor qualification. Obviously my exercise stopped for a while but my calorie consumption didn't decrease so I gained half a stone. I eventually lost the weight by focusing on a type of greek food diet. Lots of good fats - oily fish, unsalted nuts, olives. hummus, olive oil, combined with vegetables, salad and fresh fruit smoothies. I did have some red meat and chicken. Carbohydrates were brown rice, wholemeal bread etc but I had the carbs for breakfast and lunch, not dinner.

    Apparently the greek food diet is one of the best types for people with RA. I'm now able to exercise again but I find I can gain weight easily but your metabolism slows down, especially when you get older too, so wouldn't say that is just RA. I also believe now that 6 smaller meals a day are better than 3 large meals as it keeps metabolism going.

    At the start of the RA, I was very affected by weight gain as I have had eating issues in the past, I didn't know what was causing the most stress - the weight gain or the joint pain. However I eventually accepted that I needed to get the joint pain under control and then I could focus on the other stuff.

  • Fab comments, honest, your so right, guess part of me gave up....another Big problem for me is that I have Gastitis....my stomach lining gets inflamed with lots of types of food! I can no longer eat fruit! except for. Bananas. This has devastated me because I loved my fruit.....I'm allergic to dairy products, can't do the Greek diet because I either don't like the food, olives, hummus etc, and my stomach has to have bland boring carb food.....I live on chicken and Non oily fish, rice, porridge, bananas, cereals.....veg....that's it I a nutshell, can't eat pasta, as it hurts my tum due to bloating, Infact it don't scoff, don't like cakes, cream etc.....hardly touch bread.....oh well...I will work on it tho, you have all inspired me......also your way of eating is brill... Small meals instead of three meals....Thanks so much xx

  • Hi jill, i think it's just finding something that works for you and easy on your stomach. Everyone is individual and also like Cece said it's.how you feel on the inside as well. For me, i exercise as much as i can as it makes me feel happier and calmer.

    we are all in different places and the RA is affecting us all at different levels.

    i read what you said about being new and fitting in on the site. I completely understand, I'm quite new myself and it feels like everyone knows each other so well. I don't always post very often but i do read everything quite regular.

    It has taken me a long time to want to talk with others basically because i was scared of reading the experience of others and fearing whether that will happen to me. If truth be told i find it quite difficult on this site as I'm reading about things that scare me and what the future may hold. I read posts about people in pain and i don't know how to respond. I even question my diagnosis as i have never felt that bad. I'm just taking each day as it comes. You seem to be benefitting a lot from others and i like the fact you can be so open and i think the site will benefit from your input. Best wishes.

  • I feel for you - I've yo-yo'ed during the 13 years I've had RA - I was in size 8 three years ago then shot up to a 22 and now am around a 16....my wardrobe is extensive! I've been making an effort to do stuff like lay off bread and biscuits and chocolate and wine and just doing those things have made a difference - not cutting them out completely or I'd go nuts, but just slowing it down a bit and over 2 months I've dropped two jeans sizes - more work to go though. By just measuring portions or not having that extra biscuit, it soon starts drop, whether you are exercising or not. Though maybe you could try pilates? Its gentle and although you'll feel it in all the right places tomorrow, it doesn't actually hurt and if it is, you're doing it wrong. Its not only about carrying extra weight, its the misery we all feel when we look in the mirror when we don't see us but someone with an illness.

    I've had just about every drug and have now been on a settled regime of monthly Actemra infusions for around five years or so. They would normally also prescribe MTX with that but mentally, I just cannot do that drug anymore and I am managing. You have to treat every day as it comes and remember if you can resist an extra biscuit, looking a bit better in your jeans will make the disease that bit bearable next time you look in the mirror. I understand wha you are talking about, I am in the same situation, and please know there are lots of people who feel the same. Sending good thoughts x

  • Thanks for posting this thread Jill as reading it gave me the kick in the backside I needed to fight back against my RA again. People who know me on here are aware that I've lost a lot of weight since diagnosis in 2012 but the weightloss hasn't been as a result of the illness it's been through calorie counting and exercise. Even when in a flare I've pushed myself to at least go swimming and walk my 2 dogs. It's not been easy and sometimes I admit I've shed a few tears in the process as I've been so sore and felt so old and frail. Lately I've been giving in to the RA as I've been feeling so tired but then I read this thread. It made me think how good it feels to put on a pair of size 14 jeans instead of a size 22. It made me remember how I used to struggle to tie my shoelaces not only because my fingers were stiff but because my belly was so fat. It also reminded me that I started exercising because I was advised it would help with pain and stiffness and it did. I find the less I do the more fatigued and depressed I become. So here I am having a rest after doing my 40 minute walk with the dogs and a half hour swim, my first swim in a few weeks. Feeling motivated again :-) x x x

  • Soooo pleased...we'll done....keep it up ok xxx

  • To All of you that replied to my post...ALL OF YOU THANKS FOR YOUR COMMENTS......they mean a lot, know I'm not alone with the experiences of RA and other linked conditions.....to date I suffer with...RA, Osteo, DDD,Cervical spondy,Gastritis,B12. Deficiency,Aneamic, Very low Serim ferritin, making me have Possibly Pernicious Aneamia, need another blood test for that, and chronic fatigue!

    Bursitis, Tendonitis and coping with a recent spine op.....will stop rambling now LOL....that is why I have had enough, so many other illnesses along with chronic pain!!

    Take care all, and a huge Thanks again xx

  • What's DDD , your bust size? Lol :)

  • Hi Jill, I totally agree with you...I WAS a bubbly person who loved going out and socialising, not any longer. I have had RA for 5 years now and within the last year I have noticed my personality changing to someone I don't recognise any longer. Just talking to people exhausts me, so I have a tendency now not to make the effort, never mind doing anything else. I feel I am becoming a recluse, and because deep inside this is not me I am getting really depressed. I know it's not nice for you too feel like this, but it gives me a little comfort to realise this is not me 'imagining' feeling like this and others are experiencing the same.

    I have to admit, if not for these forums giving other suffers opinions you would go crazy thinking you where the only one with your smyptoms.

  • I got RH in the summer of last year, didn't know what I had could hardly move and basically stayed in bed for 3 months only getting up when I had to - finally went to dr. Found out what I had. I weighted 130lbs i am now at 100-101 lbs. I refuses to take the meds the dr gave me to many bad side effects, the only think I take right now is aleve and I take a dose of apple cider vinegar every day. I turn 54 on Tues. I stay tired and my hands hurt but I keep going -

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