I just got out of my appointment with my rheumy about pain levels and, as per, I had to bring up the 'Why is it everyone just wants to talk about my weight' conversation. I mentioned getting a wheelchair, had new crutches and was rather proud of how I was moving around, but no. He wants me to be free of all aids and healthy forever! Which, ok, it's a nice goal, glad he's really dedicated to it and wants to tackle the pain from all angles.
But then, he said 'It's maybe time to talk about surgery'. It took me a bit to realise what he was talking about. Apparently there have been studies which show RA and Lupus respond well to weight loss and inflammation, and therefore weight loss supposedly helps. That's all well and good, but when you're too ill to work out and lose the weight, what's the alternative? Surgery apparently.
Now, I knew someone who did this surgery...and to be honest it looked like a nightmare; eating tiny meals and never being able to enjoy really simple, easy foods for fear of the dreaded 'dumping syndrome' (exactly how it sounds!). Supplements for the rest of your life - none of which are cheap - pureed foods and almost a third of people who have the surgery done just put the weight back on again, only this time they've got a collection of fun symptoms along for the ride...
Ugh. I honestly don't know what to think right now.
Anyone had this done? Can anyone give me a bit of insight on it - does it actually help, or is this just another thinly veiled push to go after anyone over a certain BMI, as per? I'm on the fence, but I could be convinced, if only because I know if I weighed less, my arthritis and other symptoms would actually get treated as stand alone issues, rather than being told if I lose weight everything would magically stop being a problem (and I know that shouldn't be happening, but it does, and it probably won't change any time soon).
Bleh.
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Silvergilt
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It is a difficult decision. Like you I am overweight and struggle with walking etc, and like you I have been spoken to about weight loss as if that is all I need to do to become well. Really???
I too have heard that you can cheat with bypass surgery and then I think what's the point?I even cheat on the 5-2 diet by eating as much as I can before and topping up after the two days. I know some of my health problems could be eased by losing weight and exercising more but I have yoyo dieted for 40 years and always gained more than I lost.
It is hard when steroids increase your appetite and physical exertion brings on palpitations. I feel like I am between a rock and a hard place. I eat well, lots of fruit, veg, porridge, lean meat, and I do know that it is the size of the portions that let me down, and the sheer pleasure of eating of course!
I think most of us who have a problem with weight know what to do, it is when we are looked down upon by medical "experts" that I really want to dig my heels in and say no!
BTW my first diet started 3 months after the birth of my first child, when the gynaecologist lectured me about losing weight. I was breastfeeding and weighed about 9 stone. I have never been any where near that weight since, in fact my husband jokes he now has twice the wife he had then, too true!
If losing weight was so easy, how come many health professionals are overweight, (and they should know better!)
Because dieting doesn't work, plainly. And brutal truth, not even the surgery seems to work very well - the results for the first few years seem good, but look into cases after 5+ and the weight eventually came back, only this time with a big slice of needing supplements/complications/etc as an extra. It may work for some people, but it certainly doesn't work for everyone. A bypass won't fix my metabolism.
Sigh. I think I've got a plan now however, so we will see what happens.
Yes it can help weight related issues to be between the optimum bars on a chart but it doesn't make you a floppy happy health bunny.
Sorry just struck a nerve.
I have the opposite where I have lost a lot of weight and struggle to keep it on due to the gastric effects of lupus and Ehlers Danlos.
Guess what they say if I could put more weight on it would give more body mass and help with inflammation and immune system.
I don't have an answer as only you can decide whether you want to give losing weight a good go and if surgery is best in your case.Maybe give a slimming club a last attempt knowing that surgery is the only other option before accepting bypass.
Quite a few with Ehlers Danlos have dumping syndrome or similar symptoms without surgery and it is not nice ,not nice at all .
There is a dumping syndrome diet you could try before surgery just to see what that would be like to live with.If nothing else it might spur you on to achieving any weight loss you wish to try as a goal without the big decision of surgery.
The issue isn't my eating; that's the biggest issue I try to get through to people. I don't eat - like hardly at all! It's the only way my metabolism doesn't pile on pounds. If I try the diet those slimming clubs push I pack on weight because eating anywhere over 1600 cals a day is guaranteed to make me gain weight. Of course, no one wants to hear that - they just assume I'm eating an entire tin of biscuits at 2am or something!
I think I might have a game plan right now; I'm getting a scrip for some new NSAIDs which hopefully will dull the pain enough I can start exercising again. Anyone who knows me would know I LOVE working out with weights, and I miss it immensely. I've had to go through a huge grieving process that I could no longer work out like I used to, so I am very leery of working out again because I don't want to lose something I love so dearly for the umpteenth time when I have a flare.
BUT my strategy is if I show I can lose weight with appropriate pain management (which is my entire issue right now), then maybe they'll stop assuming I'm just a naughty fat woman who can't control her urge to eat an entire cake at one sitting, bless her. *seethe*
Yeah, it's hit a nerve for me too. I sincerely doubt giving myself eating complications for the rest of my life is going to make everything better :/ But now if I don't at least jump through the hoops in some way, I'll be seen as a 'problem patient' and I can't cope with being denied treatment because I'm seen as non-compliant. It's such a horrible place to be in. Rock, hard place. Ugh.
I hope you didn't think I was inferring you did the face first into a gataux daily diet.I was actually trying to point out that when it comes to weight doc's never see you as an individual.
They think if they give me a high calorie, fat filled diet sheet I will put it on whereas actually I would be violently sick and lose more and didn't want you to suffer from possible post op complications just because you feel guilt tripped or pressured into the procedure.
I used to work out with weights and be incredibly strong as previously posted I was a trapeze flyer so to now be this broken faulty returned goods type of individual ticks me off big time.
I hope you can do some weights as the feeling it gives you is amazing and yep does boost your metabolism and happy dolphins (endorphins ) at the same time.Suppose its a bit like the trying relationships after a painful break up do you don't you .......
Wishing you luck and confidence in whatever you do .
Oh wow, trapeze work! Mad respect from me, that looked so amazing. No, I get what you're saying, I just tried to fill in more background but I'm lacking the ability to brain today. So writing in a stream of unconsciousness
I too am overweight and suffer with Lupus sle, pelvic pain and osteoarthritis, and whenever I go to any appointments they always bring out the overweight card. It's getting boring now as you think you're not being listened to by them as all that's on their mind is me losing weight.
It wouldn't be too bad but I've been on weight watchers for 2 years but now they've changed the point system I've now gone over to my fitness pal, I've cut down my portion sizes and now eat my main meal off a side plate, yet my weight is going up and down. I lose 2lb the next week I put on a 1lb, and I've now put on a whole stone from where I was a few months ago.
So I'm doing the best I can, yet you know when you go to your next appointment they will bring it up again. When I go for my steroid injections for my knees, I now ignore what she says about my weight, as they are not going to give me a knee replacement as I'm only 44, so it doesn't matter as far as I'm concerned because by the time I'm the age to have one, a lot could have happened between now and then.
Just keep telling them you are doing the best you can and they can't ask for more than that, at the end of the day they can't force you into having surgery, it's your decision.
One thing I've been saying OVER AND OVER again is my family has a penchant for un-detected hypothyroidism. As in, ever single woman on my mum's side of the family is hypothyroid. My mum developed a goitre before anyone believed she had an issue, and I remember her iodine/salt cravings were so bad she would salt her crisps because they weren't salty enough for her! So I bought some Norwegian kelp tablets as I've always suspected my thyroid function was sub-par, and when I went into the clinic it turns out I've lost about three kilos since I was last in - and my diet hasn't even remotely changed (if anything, during the holidays I tend to just eat as I like as I know it's only a week!). So that helps.
But I know my body and without working out HARD at least 3-4x a week in addition to a very strict diet (which I don't mind, tbh, I used to do this for fun!) there's no chance I will lose a single gram. The main problem is if I'm too flared/fatigued/in pain to move, and without adequate pain relief, it doesn't get better.
So the game plan now is to try this new pain meds I've been given, get back into the diet and try a workout routine I can adapt to suit various pain levels, and then in two months get on the scales. If there's an improvement, I may have a stronger case to argue for pain medication as an option and NOT invasive surgery. Nothing else will do - no matter how many diaries on my 'no, seriously, I didn't eat breakfast or lunch and only ate tea because I started feeling faint' eating I do now, I'm accused of lying. My boyfriend can't believe how little I eat, it worries him! If I can't show people directly that I know PRECISELY what I need to do, I just need the tools to do it, they're not going to listen.
So now, I guess I've gone from shocked and resigned to angry, but it's anger I can use!
Have you told your doctor about the Norwegian Kelp tablets? It's a good idea to run any supplements past your doctor before you use them as they might interfere with other medications that you've been put on. They could also potentially have a harmful effect on your lupus so please do be careful.
Thanks, I am keeping a close eye on things as I was a herbalist for 20 years and did a lot of research, as well as following contra-indications, so I'm all good in that regard. As it stands if I don't take my supplements (and I take a fair few of them) I get worse - so I was pretty much told 'whatever you're doing, keep doing that!' as grip strength has improved, my iron levels have stabilised and I'm no longer deficient in Vit D, but I agree, people taking supplements and herbs willy-nilly is usually a bad plan!
I wish you all the luck and hope you show those "professionals" that think all you do all day is sit and eat that they are wrong to pressurise you. I wish I had the anger I feel now about my weight to have told that doctor 40 years ago where to put his diet!
I know someone with fibromyalgia who had bariatric surgery she was about 29 stone. She had been on the tablets that take all the fat out of your diet for 3 years and put on weight but she would eat cheese by the kg curries by the pot load and kept the local pizza take away going all while on the tablets.
She had to loose 5 or 10 % of her weight by diet before she had the operation she did this and has now had the operation, she is loosing weight but is so miserable because she can't eat like she did before.
It is a big step and if you can do it by diet that is the best way good luck
Had surgery prior to fibromyalgia .....great weight loss....yucky body image due to loose skin folds ....but then fibromyalgia following major lumpur flare has really restricted ability to exercise, had to take early retirement due to ill health and have steadily put on over 3 stone....about half of what I had lost due to severe lethargy which makes exercise impossible .....I can barely do what needs to be done on three or four days every week.....there is no magic.....constant battles ...so pick the ones you know you can realistically attempt
I had GBS prior to my diagnosis of undifferentiated MCTD. I lost 140 lbs and remain at 120 lost for 13 years. The requirements for this surgery are several appts. with specialists and Psych eval to make sure you are in the right mindset for success. Once you have the surgery, you have been given a new life and you control the future. I couldn't walk a half a block before due to breathing, knee and low back pain. I no longer have knee or back pain and I can walk most days even with my COPD. It is totally worth it if your glass is half full rather than half empty.
My Mother had this done a year ago and she is 120 lighter and looks completely different.The diet to prepare is hard its liquid but she said its worth it.She could barely walk before now she can go everywhere.She is more active then I'm with the lupus.She said you get used to the smaller meals take your leftovers home from restaurants and can enjoy that meal 3 times.She loves that she had it and is trying to encourage my sister in law to get it.Before the surgery she had acid reflux and would throw up every morning .She could barely walk she was 350.She still has weight to lose but she is a lot better after the surgery.
Yes. I had the op Feb 2016 and things have gone worse. Not sure where you are (geographically speaking) but if you already have Lupus diagnosis, you will find that surgery is out of the question. I had mine in UCH in London, and was told that if they knew about lupus diagnosis in February, the surgery would have been cancelled. This is due to leakage in abdomen which is (so I have been told) more common with lupus patients than others, I.e. The risk is too high. I've regretted it as it made my lupus worse. BUT the good bit is, I had diagnosis simply as I could not use "I'm unwell because I'm fat and unfit" scenario. I've been unwell for 10+ years and everyone put it down to my fatness rather than investigate properly for other conditions. I was not huge, fat, but not huge; I lost 25kg and went from size 18 to 10/12 and my diabetis has been reversed as it automatically does with gastric bypass. Not band or sleeve, just bypass.
Happy to discuss more, so let me know if you need more info, etc
Thanks for the advice - it does concern me that I'd have to actually physically alter myself to fit someone else's 'worthiness' to be treated, and I've decided to refuse the procedure. They can treat me as a human being, fat or not! And it seems that I am potentially going to get another diagnosis...and said diagnosis may mean that surgery such as this would have been life-threatening, if not lethal. So I'm rather glad I refused the treatment.
It honestly wasn't anything I wanted to do. I wanted treatment, not to be told I'm just too fat. Now I have a change in medication I'm walking more and being more active, and I feel a LOT better. I wish they had listened to that first rather than suggest I drink a small cup of sludge for the rest of my life before I was worthy of treatment!
Hi, i’ve had gastric bypass because I was told it would relieve my symptoms (I have uctd). I’m okay with the smaller meals and taking the vitamins etc but my symptoms got worse. Maybe it’s just me lol. I chose to have the surgery because no matter what I went to the doctors for it always got directed to my weight.
I’m glad I had the surgery, it’s good to be in 34 inch jeans.
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