January 15, 2013
Niki writes:
I have a question for those of you who have lost a significant amount of weight since onset. I figured as I got smaller my joints would be happier with less stress on them but it seems they are missing their added padding which is making it harder to find a comfortable position to sleep in. Has losing the weight helped your RA symptoms? What has your experience with it been?
Thanks in advance for your help (((pain-free internet hugs)))
What our members have said so far:
Jen – I have lost almost 40 lbs since my diagnoses last February and my personal experience is no they are worse. I think the loss of “padding” didn’t help and I also find myself 100 x colder than before.
Heather – I wish I could lose some weight but now after reading what you have wrote I am not sure…. It will be interesting to see what is written here.
Kellie – My experience is that it’s just bad regardless of what I do
Leah – What kind of exercise do people do??
Julie – Well done for loosing the weight… but you need to make the joints stronger… have you tried weight lifting to strengthen muscles and help support the joints…. it really REALLY helps xx
Aimee – I like a firm mattress, but when I lost weight my joints couldn’t handle it. I bought a 1 inch memory foam mattress pad. It worked wonders!!
Carol -a pillow between your knees when sleeping.
Linda – Especially my pelvis and bootie bone . I am MUCH more aware of each individual bone , joint , etc. …
Shannen – I have lost 30 pounds since being dx I’m losing 3 pounds a month and I really don’t know how of course when I found out a yr ago I changed my diet I thought it was going to make a huge difference but all I have gotten was worse so maybe my body is missing my extra padding as well at least a yr ago I was able to get out of bed with out literally falling over from pain and nothing wanting to move..good luck;)
Jojo – i am in the process of losing 40#’s, i have lost 6 already…i sure hope losing doesn’t make it worse. i suffer so bad right now as it is…Dr said it would make things easier for me.. im still on prednisone and have been for over a yr now….making it hard to lose but i am some…
Jenny – Leah, I do water aerobics / warm water therapy and lap swims. It’s best for least resistance on the joints but can still get a good workout.
Lori – In the past year, I have gained and lost 50 lbs due to prednisone dosing……I haven’t noticed any improvement of joint pain with either
Shelley – Having extra weight on our bodies actually increases the pressure that our joints have to withstand and doesn’t cushion them, but rather causes more damage. I definitely, 100%, without a doubt feel relief when I weigh less and I feel good that I am doing the right thing for my joints. Exercise is crucial too, because the benefits it provides are far reaching for those of us with these illnesses. I personally do any kind of exercise my body will allow on a given day – walking, yoga (ashtanga is my favorite), paddle boarding, kayaking, swimming (kick boarding)….anything, even if it is just gentle stretching from a chair because the pain is severe that day. I firmly believe that when I stop moving is when I feel the worst. Wishing you all the best!
Christy – Walking is great exercise!
Genevieve – definitely better on the knees after weight loss.
Shannon – I lost over 120 pounds, hold on tho…I had the surgery cause I thought all the weight loss would help my condition. Like others above it has only made it worse and I still continue to loose and it isn’t good. I am always freezing and my flares are horrible. I know a few said do some weight lifting, I am not sure where YOU are with your RA, but I couldn’t lift a gallon of milk let alone a weight. It’s hard to exercise when you always feel so cruddy.
Kerry – I have never ever in the 40 years I have had this disease lost weight in a flare, I generally put weight on, even if I don’t take prednisone. I have just lost 30 kg (with another 10 to go) i made the decision 18 months ago after my worst flare in 10 years that I had to lose the weight. I have done it slowly but it wasn’t until about 5 months ago that I really felt better, mixture of weight loss & new meds. I would have to agree with the comment that strengthening you muscles is really important.
Kim – I lost 70 pounds over the course of about 7 months.. I felt the worst I have ever felt… However I have other AutoImmune issues besides RA and Fibro.. For me I needed to loose the weight it took some time and gaining 20 pounds back to feel half way normal again… Plus Changing a bunch a meds and working with Acupuncture…. It may not be the weight loss causing the pain.. When you loose weight your meds need to adjust too so that can also be part of it… I still want to loose weight but not as fast as the last time I was pretty sick for several months
Jen – I have done NOTHING to lose the weight the Dr has actually told me I cannot lose anymore or she will start testing for other problems. The only thing that I can point it on is the disease itself and the methotrexate and enbrel I take.
Callie – I’m so happy to know it’s not just me! I’ve lost 35 pounds in the last few months and I am freezing all the time and my shoulders won’t let me sleep on my side any more. I was getting worried!
Doreen – I have lost significant weight while exercising a lot, and I felt amazing, but I’m weird and love working out. I gained weight back, foot problems and two surgeries, and I felt worse. I think it’s actually exercising that helps my joints feel better, cuz overall I feel better. As for sleep, it’s been an issue since diagnosis. My ex bought us a sleep number bed and since then I sleep great.
Lorena – I wish i was the type to lose weight when ill but no, I am the goodyear blimp now. I gained 50 lbs since diagnosed. I have tried to lose weight. but it is not working. seems like I am getting worse. got an infection and got taken off all meds and the weather doesn’t help me either.
Gretchen – I have lost 40 pounds, 55 to go… Started really working on diet and exercise because I was feeling so horrible, can’t say that loosing the weight has helped, though I now have an official diagnosis and medication to work with.
Kristie – I too have gained weight since my diagnosis. I have tried diet and walking and my weight stays the. Same number.
Carrie – I’ve lost weight, about 85 pounds, and am continuing to lose because of a disease called gastroparesis (GP) that can sometimes happen with autoimmune diseases. So far it’s made no difference on my overall RA health (I’ve been uncontrolled for 2 years now) but I also do find that some positions are less comfortable because the joints are more exposed. I know it’s better for the joints to have less weight on them but it is harder to stay warm and the disease itself (GP) weakens muscles because I can’t get more than 500-600 calories in me most days, so it seems to be causing more problems now. I would still recommend that anyone healthy try to lose even 15-30 pounds with RA as it can help with your lower body joints not having so much pressure on them. You might not see or feel it right away but less pressure over the long haul should always be better.
Brooke – I lost 60 pounds And it was like getting someone else’s knees!!! It did wonders for my osteoarthritis but not Much for the RA part
Helene -I gained around 50 when I first began my meds- pred mtx humira & folic acid. Stayed at increased weight for a few years. I was already large. Then due to blood pressure i changed diet & lost some. Around 50 pounds. Settled in but then had mild heart attack & blood sugar issues. Scared, blood pressure skyrocketed & panic attacks began. Diet dramatically changed & began walking. Lost 50 more fast. Anxiety increased blood pressure increased. Then i fell walking twice in one week. Skinned knees from Halloween never did heal yet. But then in spite of both flu & pneumonia vaccines- first i had- i wound up with my first ever pneumonia. Heck i never ever even had a cold or flu in my whole life. Lost more weight. The pneumonia wasn’t bad enough for hospital but i also still am weak and miserable. I have bad problems tailbone now protrudes & sitting or laying causes it pain & its developing a pressure sore. Elbow lost fat pad sp it developed a sore & bursitis. Skin at my age etc is not elastic as when younger so i now have much empty saggy baggy skin. I finally tried to add some foods back in hoping anxiety & weight loss would stop but so far its not working.
Chelsea – I’ve lost 35 lbs and so far, im noticing its helping out with moving my joints. The pain is about the same but I feel as if it takes less effort now to move, and therefore less time spent in pain. I also do warm water aqua-therapy. It is a godsend.
Jennifer – Get your thyroid checked if you are losing weight or gaining and especially the person who said she was cold all the time. It’s just a thought, but mine was way out of whack when I finally had it checked.
Crystal – I haven’t had anywhere near the weight loss you have but weight hasn’t made any difference with me, with the exception of my lower back pain.
Helene – Now this week battling first ever flu- losing more weight & all joints flaring very bad. One finger swelled so fast my ring 2 sizes too nig got stuck & embedded in my skin before i could get it off & both shoulders & a hip flaring bad have me pretty immobile
Cheryl – I had significant weight loss at the beginning…..many years ago…After several years of meds, etc., I have gained it all back, especially after the prednisone.
Joy – I have been unable to loose any. So I am no help. Before all the meds I was approx 60 lbs lighter. Did weight watchers, Atkins, body by Vi. Nothing has worked for me.
Cheryl – My pain level really was not helped by the weight loss. I hurt so much because I was just getting the meds in my system.
Niki Wyre – I’ve lost 122 pounds so far, 90 of which was last year. I told my Doctor that I expected to have less pain in my knees and back but they are much worse. Maybe it’s just how fast my RA is progressing instead of the cushioning but I’m having issues with my shoulders, hips, hip bones in front, collar bones, and tailbone now. None that bothered me before the weight loss. I already sleep with a pillow supporting my neck, a pillow between my knees and I have to hold on to a pillow pet or my shoulders won’t let me sleep. Am I happy I lost the weight? Heck ya as I feel 100 percent better about how I look, feel less self conscious and it is helping my other health conditions. So it’s a win for that. I actually can’t stand more than 2 minutes before my back starts screaming, can’t walk more than a few dozen feet or lift anything over 5 pounds so it gets frustrating on not being able to workout or exercise like I would like. I’m working on adding more Yoga in Bed positions to my daily habits to try to help in the strengthen departments but lately the pain is so bad I can barely move. I still have 35 to 40 pounds to lose to get down to my goal weight. I am totally freezing all the time too! Thank you all for saying that. I’ve been using a heated blanket like crazy.
Helene – I have always my whole life been too warm but now on my blood pressure med metoprolol yikes hands are always like ice cubes
Rachael – I was on high levels of pred for 2 years and I thought I would lose weight when I got off of it, but I haven’t. I do exercise. Qi Gong, pilates and my ski machine.
Jen – I’m in the process of losing weight. Lost 30 so far but my arms are less comfy n I’m colder
Crystal – I had the sleeve and have lost 75-80 lbs, fluctuates due to water, etc. My weight loss has eased some of my shortness of breathe issues. But as to the joint pain & inflammation I haven’t really seen any improvement. Have had to change dmards and now a new biologic.
Tamara – I always used to struggle to keep weight on, but since using Enbrel I’ve found putting on the pounds is a lot easier. I also find that if I eat less my RA is better behaved, though I know fasting isn’t condoned, it certainly has helped me at times. My ankles are less stressed the lighter I am.
Janet – Niki, what kind of mattress do you have? We have a tempurpedic and it has been fabulous. I’d recommend that. The best version you can afford. It’s a 5-8 year return on investment that is worth what you pay.
Brandi – didn’t notice a difference
Amanda – I’ve lost 80 lbs since August and it hasn’t helped my RA or fibro pain…still got another 75 so hoping that it gets better!
Cheryl – I’ve lost over 100 lbs since dx… and the pain is still there. Even after weight loss, I’ve had both knees replaced, and then redone again because of a misdiagnosis (RA vs. infection). I can only lay cretain ways in bed, my hips hurt so bad.
Chris – i haven’t lost much, just 15 lbs, but even before i lost any my wrist and elbows have lost muscle over them and it is just skin over bone and if i touch them on anything they really hurt. i swear ever thing i walk past jumps out and hits my elbows!
Madhupa – I have noticed that every time my weight goes below a certain number – I get a RA flare. Currently I am overweight – but bot obese – and will have to stay that way. I do not want to be plumper than I am – but neither can I afford to lose any more weight ( frankly it is not too easy to lose weight either) …..
Shannon – I have a memory foam topper that feels sooo good on my aching joints and is more comfortable than any regular mattress I’ve had. I also have a memory foam pillow that feels better the longer I’ve had it.
Reva – I went from 252 to 120 pounds and it seems to have made it worse as I have no padding left.
Stacee – I’ve lost 40 lbs so far, did wonders for the OA in my knees but other than that pain is same, also noticed my injections hurt more because of less ‘padding’ to inject into…. Got another 60-80 lbs to go!
Jan – Yes… my hips hurt but I walk 45 mins each evening (even when I only can walk slowly) and it builds up the muscles in my hips
Marilyn – i lost about 40 since my diagnosis,had all test for thyroid, cholesterol, diabetes, in fact if it wasn’t for the ra, my blood work would of been perfect, tested every six months for that for two years straight,, it’s the ra and also the medication, i’m on Tramadol in the day for pain,it suppresses the appetite, i am also a vegetarian, read red meat aggravates the ra,i do feel better then before diagnosed,i do get my flairs,but at last i can function,in fact my bone density test improved since last one, yogurt every day:)
Lori – I have a down mattress pad on top a posterpedic mattress and have 5-6 pillows surrounding me to prop legs or arms because of pain and numbness.
Bridget -When I lost 90 lbs a while back, the damage showed more and I felt like I hurt more (feet especially). I think the padding does 2 things: hides the damage so mentally we don’t notice it as much, and cushions the ouch joints a little more. Unfortunately, I think the cushion does more damage than we know.
Charming I wish to loose weight but it has become difficult after RA.
Vee – same problem, miss the extra layer of fat on the joints but there has been significant relief so it is a trade off. I swear my hips are just poking the mattress these days. I have Graves dis-eae so cold is a factor in my life. i wear thermals in the winter to keep the joints comfy. I moved south but the humidity takes a toll on me now. Gotta have faith.
Julie – Can’t wait to read the replies to this!!
Julie – No I think its made it worse
Debra – I have a 2 1/2 inch latex mattress topper. It has really helped with my hip joint pain!
Diane – lost 30 pounds choking on prednisone over 2 years. The weight loss was nice in Sept, hip replacement. Getting ready for another hip replacement coming soon, decided to keep weight off due to surgery. The nice thing is no exercise.
Kelly – I am SO happy you brought this up! I hurt MORE since I have dropped over 100 lbs! It is hard to get comfortable and my knees are 85% worse than when I was heavier! WTH?? I don’t understand they say you will feel better taking off the weight!
Heidi – I will only go pm prednisone if last resort.it malrs me gain weight along with other bad side effects lile insomnia, hot flashes. Palpitations and I turn into wicked witch of PA! Lol
Michelle -I’m on prednisolone, and I’m still losing weight. I’m 7 St 10 lb, about 48/49 kg. And no, I don’t feel better for it, I’m a UK size 8, and I felt a lot better, when I was a bit heavier and a size 12.
Liliana – Before I got preg. With the loss weight I was suggested to add yoga to build strength. I found, if I did not stay active my joints would start to hurt. Have you tried natural remedies too? Cucumber and carrot juice to help with the pain?
Ava – I’ve lost 20 pounds since starting methotrexate (not quite the same as losing weight since onset, sorry!) and the only thing I’ve noticed it how much harder it is to find a comfortable position now that I’m a lot bonier. Stupid bones. Why you gotta be so sharp?
Catherine – I’ve always been on the skinny side all my life, but I finally reached a good weight of between 115-120 (5′ 3”) over the last 8 yrs, but now I’m back down to around 102 lbs, what I weighed im my 20’s & I’m now 43! I was just giving my Simponi shot in my leg this morning & my husband is like ”your legs are so skinny!” However, he knows it is because my RA is very active right now. And YES, it is horrible pain when I sleep on my sides. I always end up having to sleep w/a heating pad every night & have to change my position to sleeping on my back, which I have NEVER liked prior to my diagnosis in 1998. And it is like everything jumps out to hit my elbows & hands and it HURTS so BAD! However, I will NEVER let RA get the best of me! I have so many people, including my doctors say that I am such a strong woman & never let anything get me down. I think if you let RA beat you…it will!
Katie – I lost 45 lbs and no change in RA pain……but it significantly helped my hip bursitis especially sleeping at night
Joe – My RA caused me to lose about 20 lbs. This type of weight loss is called cachexia due to an immune disease (or other causes). It didn’t help the pain during my flare-up…after being treated with MTX and Enbrel I eventually gained my weight back…I should have tried to keep some of it off….
Deborah – I have a temperpedic which I couldn’t live without but even it doesn’t help at times. I’ve always been thin and it hurts to lay in bed. I find myself with 4-6 pillows trying to get comfortable. I’ve had neck surgery as well so I can’t lay certain ways. I find using a ton of bio freeze helps me get to sleep.
Linda – I am on thyroid meds and have mine checked frequently and I lost 40 lbs. with the RA and am cold. It took me three months at the lower weight to gain anything back. I was too small. I gained about 5 back and am now comfortable (sort of ) in bed at night. I am still cold except when I have pre-men. hot flashes!
Cherie – I have been both heavy and thin during the years since 1982. The only way I’ve been comfortable when sleeping was when we got a Select Comfort Air bed. I’ve slept great since then.
Sheena – After reading a lot of yall’s comments… just leaves me feeling so sad. I know we all have to be strong and not let having RA get us down but man. You lose weight, you hurt. You gain weight you hurt. It’s like you can’t win
Carol – I spent the money on a mattress pillow topper. It has helped me tremendously and was worth every cent.
Marie – i have lost a lot weight, but that has not helped my pain. recently i have had alot pain in left wrist.
Karen – I am still struggling to lose weight, it is a constant battle! When i try to exercise, i have more pain and then i get totally discouraged
April – I would like to know for those of you having a lot of pain daily, how do you lose weight? I gained a lot of weight before onset of disease and have not been able to lose any because I have no activity level. I was diagnosed over three months ago and am still in the process of getting meds worked out. I am in a major flare and simply can’t do much. On the days I do feel like I can accomplish something, I do whatever, but the next day I suffer greatly. So I’ve basically started the process of elimination or testing my limits. I started this without knowing i was starting it. Last week I got so damn fed up of not being able to do anything, and I had a day of a good amount of energy and low pain levels so I spend five straight hours cleaning out and organizing my daughters room for her. I did this mostly because it hurts my soul as a mother to not be able to do the things for my daughter like I use too. I dread seeing what softball season brings. Anyway, the next day I COULD NOT WALK I HURT SO BAD!! EVERYWHERE!!! So I said to myself you have to find your limitations. So after that initial level 10 pain scale passed (two days) I felt alright or at least better than a 10 so I cleaned out the garage. I spent an hour doing this but no heavy lifting, good bending mechanics, and went at a slower pace. The next day, my knees and ankles/feet, were at a good 9 and now, three days later, seem to be about the same. So even after an HOUR of work!! I suffer. I hate this!!
April – my initial question is how do RA’ers that are at a high pain level for a long period of time manage to lose weight? I need to lose about 30 pounds which is what I gained in the two years prior to dx
RA Warriors Philippines – Since RA dx & onset back in ’04, within 4 mos, my weight was down to 128 lbs from my pre RA weight of 180 lbs which i believe was mainly due to an aggressive RA. So, aggressive medication followed and weight loss continued, after another 2 mos, it was down to 118 lbs. This time I knew it was due to the meds’ side effects. Had my lowest weight at 114 lbs. I am 5’11”, and my description of myself at that time was ‘bones & skin’. I looked like the ‘undead’. One time when I had a chance to be in front of a mirror, I didn’t recognized myself! I asked all mirrors in the house removed. I was so depressed at that time. Aches all over, unrelenting day & night despite of medications. My body is still in deep pain no matter what position, being still nor moving. It’s more painful when moving. RA has a hint of muscular dystrophy and muscular atrophy…an RA co-morbidity (probably), that is still misdiagnosed and simply being ruled as a simple ‘weight-loss’.
Pamela – Have had major weight loss since onset initially went down to 80 pounds due to systemic stomach issues. Got up to 110 with stomach meds but since started plaquenil, methotrexate, and enbrel back down to 85 pounds haven’t been able to gain weight the past year. Believe stomach issues and medication is causing weight loss
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