Hey everyone… I am a little concerned right now with my sister who has MS. She has had MS I would guess getting on for 4 year… When you she got MS she was a big girl (as are all my family, well I am obviously a big boy lol !)… She weighed in at over 15 stone…
Now she weighs just a little over 8 stone, and she is still quite top heavy (even enquired about about a breast reduction)… now I am very proud about how well she’s done to lose all that weight… But I now worried she’s addicted to exercise, and how she is always beating herself up emotionally when she eats anything…
She currently gets up at 5 am every morning, and exercises for 5 hours !!! She is doing 5 hours on a tread mill/running machine… burning off 3500 calories a time… and even then when she has the smallest of treat, she feels like she’s ruined it all !
Originally she wanted to get down to 9 stone, then it was 8 and half, and she’s currently 8 stone 1, but she’s still exercising, even though she admits it’s causing her pain… she still fights through it and continues with the exercise…
I don’t know if this is doing her MS any good, or actually runs the danger of causing more harm, I want to speak to the doctors and nurses who she sees, but she and my mum don’t as they are worried it would effect her benefits, which they do rely on.
She is looking really pale, and her face is becoming very withdrawn (mum tells me it’s the same for the rest of her body) and she is also experiencing loose skin. But I guess that’s a separate issue.
Any advice greatly appreciated… as any one else experienced this or know of someone who went through or is going through the same ?
On the one hand, it’s a really good thing to lose weight, and to strengthen ones body as without decent core muscles any future relapses or disease progression is made worse.
But, on the other hand it sounds like it could be anorexia.
One of the symptoms of anorexia is over exercising. The other is of course not eating enough. And feeling guilty for having any kind of a ‘treat’ is typical. The other and possibly more worrying symptom is purging (either vomiting or taking laxatives).
The trouble is that your sister is an adult, so is responsible for her own health. And for all I know, she’s just exercising a lot and has lost a lot of weight, and it’s nothing whatsoever to do with anorexia.
If she doesn’t want you to speak to her Doctors, then I’m afraid you can’t. That’s the prerogative of an adult patient. But I’m not sure what it has to do with her benefits, nor why your mother isn’t as concerned as you, if she’s that thin and unwell seeming.
Regardless of whether her exercising and weight loss are healthy or not, the fact that your sister has MS may be irrelevant. Obviously, it’s likely that the diagnosis was the catalyst for her starting to exercise and lose weight, but to be honest, if there is a problem I wouldn’t think it would make her MS better or worse.
Perhaps the best thing you can do is talk to her about your concerns. Stress that you’re worried because you love her and don’t want her to be unwell. If there is a problem, then maybe she should see her GP.
I think you are quite right to be concerned about your sister’s well-being.
Whatever the official view on her state of health might be, it does seem likely from what you have described that she is in the grip of some sort of disordered eating/disordered approach to exercise. Such link as existed in her mind between good health and food restriction/exercise seems to have been lost or badly distorted along the way. And you’re quite right: that isn’t going to be doing her MS any good whatsoever.
Maybe it’s a reaction to the MS and everything that goes with it? Maybe she has told herself that if she can just get thin enough/fit enough then the MS will go away. Many of us who have MS (me included) will probably have a wry smile about that sort of magical thinking - we’ve all been there in one form or another!
There is a risk, of course, that it (perhaps) started that way, or something similar, but now some other disease process - an opportunistic eating disorder - has caught her at a weak moment and seized her in its iron clutches. And that would be a serious matter because such things really can ruin lives - the concerned tone of your post suggests that you are well aware of this.
I cannot really advise because I don’t know you or her. But from what you have told us, I think that you are a good person for your sister to have in her corner, and that you should keep up the steady encouragement to seek professional help. As for benefits, if a person has the misfortune to have acquired a new and serious psychological disorder, that is sure more likely to support eligibility than to threaten it. Maybe working on your mother to persuade her of this point would be a place to start.
Good luck with your efforts to help your sister. I wish you well.
I would say your sister has a real problem, she sounds like she has anorexia, with the over the top exercising, the thing is though they have got to realize themselves they actually do have a problem and thats not easy,its very hard for loved ones to watch and not being able to help. Have you tried to talk to her about it?
Hey Sue we did kind of have a chat yesterday, myself, mum and my sister Lee… She ironically was on the running machine whilst we were having this conversation… I had spoke to my mum previously about this, and I did say it sounded like Bulimia, which apparerlently can also include excessive exercising as well as using laxertives or making yourself sick (purging)…
The problem is we’re not a rich family by any stretch of the imagination… in fact the opposite. My sister is worried if she told her doctor she was exercising as much they would report this and her benefits would be stopped. As a family unit this would cause problems and I don’t know what my sister would do if she lost her benefits… I believe that’s the main reason she won’t talk to a doctor, or maybe she’s just using that as she knows the doctor will tell her she’s doing too much, when she seems determined to continue on the path she’s on…
She fights through pain to do the 5 hours a day she’s doing… she admitted that it hurts but she just works through it… it also takes a lot out of her, and she’s usually tired afterwards (understandable) I’ve made a couple of suggestions to her, and have asked her to try doing a week of 2x 30 minute sessions, whilst staying on the same diet, then weighing in after a week and seeing how she has done… I said to her even if you’ve put a pound or two back on it wouldn’t be a bad thing… and she barked at me saying she didn’t want to put a pound back on !!! This highlights to me there’s a problem…
She is down to 8 stone 1 pound… with her being top heavy, it’s way too low… I believe if she had her boob reduction, she would be down to under 7 and a half… I think she needs to be at a healthy weight, I think 8 and half to 9 stone was the weight she would be, but she’s already way under that and not slowing down… it feels like she’s addicted.
Thanks Alison… as I said in my post above, for me she is displaying the symptoms of Bulimia… with the excessive exercising… She doesn’t really binge eat mind, but she does love her food… all our family are eaters, and big people lol… I can’t remember when Lee exactly started the dieting… and the exercising probably as only been the last 18 months to 2 years (well to my recollection anyways) So I don’t think it was an immediate association with her diagnosis…
I think in regards to the benefits, both my sister and mother are worried that the relevant benefit agency would say if you can do 5 hours a day on a running machine, then you can do a job… and stop her benefits. There seems to be a lot of things being said about disability benefits right now with the government so I think that’s what scares them…
I am definitely going to be there… and hopefully at least be a ear/shoulder for my sister to confide in, always good to have someone to speak to… I mentioned above a little deal we’ve come to… fingers crossed she will follow through with the deal and do a week of only 1 hour exercise only… I mean with the 5 hours she’s doing now she’s burning 3500 calories a day, and only eating about 1500-2000 max…
For some reason however, not that I argued the case… she wants to wait until the Royal Wedding !!! Again it feels like just an excuse… I mean she’s not going to the wedding… so why does she have to wait the couple of weeks till then… I think she wants to go under 8 stone… Which to me is crazy… As I said an addiction, don’t get me wrong I have periods of my life where I also lost weight… and I know how addictive it can be, but I have never seen it to this level… she is addicted… wakes up and is down on the machine by 5 am every day… does 5 hours every day… I doubt there are athletes who do that kind of intense training…
Yeah had a couple of chats… but as much as she says she will do less, she then makes excuses to when the reduction in exercise will take place, we came to an agreement for her to do just 1 hour a day (2x 30 min sessions) for a week and to continue with the same diet, then weigh in and see where she was weight wise…
However she’s now saying she wants to do that after the Royal Wedding… Not sure why her exercise routine as to wait till after the Royal Wedding… she’s not attending it or anything, so it just seems like an excuse to get under 8 stone, and sorry that would be crazy… she already looks gaunt and withdrawn… and always very pale (even more so after her 5 hours exercise)
Now I understand why your sister and family are concerned about her benefits. The problem is that anorexia/bulimia is a psychological condition. That on its own could cause her to be too unwell to work. The other thing is that a GP wouldnt make a report to the DWP that she’s doing all this exercise. So I can’t see that her benefits would be at risk, certainly not as an immediate thing. I suppose it does depend on what benefits she’s getting. If it’s ESA, then that isn’t an immediate risk, if it’s PIP, that might be a different problem. For example, if she gets PIP for mobility but is able to do 5 hours exercise on a treadmill, then it could be seen as a reportable change in her circumstances. But assuming it’s just ESA, you could try again to get her to see her GP.
As far as waiting for the royal wedding, that to me is a straightforward delaying tactic. She doesn’t want to agree to your suggestion, so is using an excuse to continue the weight loss / exercise routine. Making the point that she could do with putting a pound or two on and having that sort of reaction does sound quite worrying. But, that is typical of the anorexic view. Perhaps she might agree to slightly less exercise rather than what must sound quite scary to her, going from 5 hours to 1 hour per day is fairly drastic (to the anorexic mind). She might agree to reduce her exercise by an hour a day and maybe revisit it after a week??
Keeping a close, loving, caring relationship is probably key to trying to make any changes. She needs to feel like you and your mother are on her side and not ‘ganging up’ on her.
Which to me is crazy… As I said an addiction, don’t get me wrong I have periods of my life where I also lost weight… and I know how addictive it can be, but I have never seen it to this level… she is addicted… wakes up and is down on the machine by 5 am every day… does 5 hours every day… I doubt there are athletes who do that kind of intense training… 