Illness and weight loss long post!

steffflawton
steffflawton Posts: 21 Member
in Health and Weight Loss
So i'm 23, 24 in may and since being a kid/pre teen i've had muscle, skin and joint problems. I normally ignore my health problems because i dont want to know whats wrong with me but as issues have gotten worse over the years it looking like i might have a rare genetic disorder called EDS i'm not sure which of the 13 types i have as i seem to have a huge range of symptoms of all the types and it can happen where you have such a mix you dont fall into any practicular one making it more rare and even rarer if your only one in family to get it which seems to be the case so far. I need to tell my doctor that this is what i think it is as even though most tell you not to say what you assume it may be with EDS you should always say if you think you do due to not many docs even knowing what it is or how to deal with it. Its incurable and gets worse the older you get and some of the types are fatal even the milder of them all can cause deverstating paim and make life hard and disabling. What was shitter to find out is most people thag have EDS can also develop MS which my younger sibling has at only 20yrs! Im pretty annoyed and upset learning all this of course. But what i want to know is does anyone else have a illness that makes loosing weight and exercisering harder! Anyone else have EDS or joint and muscle condtions (syndromes/dieases/disorders) As mine makes me generally cry from pain sometimes and get depressed when seeing old people do what i cant anymore or never could. That just being poked leaves me bruised or my balance is off of my joints are snapping/clicking/creaking/cracking/popping!!! My joints sublax which is semi dislocating!! My muscle come out of place too and so doing certain activties make my body literally want to fall apart be nice to know what works for others with same issues and what works for you guys!!!! Share away and lets help and be there for one another xx

Replies

  • steffflawton
    steffflawton Posts: 21 Member
    I have been going hospital appoinments quite a bit now, its not self diagnosing as i never say i have it more so i feel it may be that. One of my siblings has MS and one has a connetive tissue disorder which the illness EDS falls under and like i say sadly not only is it incurable it has not much help for it no meds are given yojr told to manage it the take it more seriously if you have the high chance fatal ones but what most doctors don't know is alot of the people that have it develop MS which means i could end up with both, which is more likely now due to sibling 1 having MS and sibling 2 having a connective tissue disorder. My mother has been disgnosed with a range of illnesses so its a high chance us kids got these problems from her which no mother wants to hear sadly. It was them that have been pressuring me to go to the doctors all these years. The frustrating part is knowing in your mind what it is because it all adds up but your doctors not having a bloody clue and trying to blame them on one thing that seems more obvious but EDS is all about looking for whats not obvious and that sometimes its not what you were taught to look for or think of first in med school and that it can actually be something completely different.

    This post is to talk to like minded people who are also in the dark of what to do with their health when their trying look good and get fit with something that makes it feel impossible.

    But thank you for sending hugs and trying to help with suggestions i know you ment well x

    I just feel like theres not many people i know that understand what i'm going through due to the illnesses they have or dont have are very different or it feel like it becomes a competition with some people on who has it worse or people make you feel your invaild because other illnesses are "much worse" than this one and that one. Those comments make you feel alone and like no one cares or your pain isnt that bad, or if your not dying there and then your not worth listening to, or its borning to someone who doesnt have it or if someone has there own illness they dont care about any illness other than their own and i just want us to feel heard and vaild and this is a safe chat your not alone, i'm not alone and there is no judgments or competition because no right minded people wanna be a winner of that one!!! Its not about who has it worse or better its about being there for one another and helping eachother out, sharing advice and pointers. Feeling listened to and we can learn from one another. Im tired of feeling like im being compared to and like my feeling dont matter and my illness isnt as bad as this one or that one. You cant compare illnesses because no illness is exactly the same nor is it the exactly the same for any two people with a different illness or the same one because they all suck *kitten* they all cause problems and pain or misery!!! nobody of sane mind wants to be ill or dying or in pain we want to have fun, live and be happy!!!

    So for all those who just want to help one another grow and live and learn this is what i started this chat for 💚
  • JeromeBarry1
    JeromeBarry1 Posts: 10,179 Member
    I did this search for you and found some posts that might have useful info. https://community.myfitnesspal.com/en/search?adv=&search=genetic+++EDS+&title=&author=&cat=all&tags=&discussion_d=1&comment_c=1&group_group=1&within=1+day&date=
  • steffflawton
    steffflawton Posts: 21 Member
    Thanks you jeromebarry1
  • nowine4me
    nowine4me Posts: 3,985 Member
    OP - google Whole Food Plant Based diet or talk to an expert on it. It’s very possible that what you’re eating is aggravating your issues. Maybe not, but it’s worth exploring.
  • steffflawton
    steffflawton Posts: 21 Member
    Nowine4me....Im pescatarian i only eat fish, veggies and fruit. I dont eat other meats or dairy. I eat junk food now and again but most of what i eat is vegan based and vegetarian based. I'm lactose intolerant so cut dairy out. I have been pesc, vegan and veggie in the past but pesc works best for me due to defeciencies i get when i vegan i tend to get very ill though im planing on being one again one day when i can afford all the right foods to do it perfectly
  • Deviette
    Deviette Posts: 978 Member
    Hi, my aunt and cousin have EDS.

    The first thing you need to do is speak to your doctor. Yes I know it can be frustrating because EDS isn't very well known, however, you must speak to them. You need to fight your corner and work hard for that diagnosis. Trust me, it's worth it. Aside from the obvious support that you'll be able to get with that, you'll also be able to explain to friends and family why life is tougher for you. Without a diagnosis, there will always be a nagging thought in the back of some of their minds that you're just self diagnosing and it's really not that bad (especially if you have siblings with similar conditions)

    Also, there is medication available. Yes not a cure, but stuff to help you manage the condition. Things like pain management, physio, that sort of thing is invaluable, so don't shy away from help just because there's no cure. Also, something I'm going to have to say is that you're going to have to accept that you're a spoonie now. There is no getting better from this condition yes, but you can manage it. Embrace things that make your life easier, things like wheelchairs and mobility aids. These are not giving up! These are things that make your life easier and will make it so that you're able to do more, not less!

    Look for specific EDS based groups, facebook is a good place to start. In addition, there are loads of groups for those with chronic condition around and individuals on social media who are great support (may I suggest following Annika Victoria on instagram, she's an amazing youtuber who is also spoonie and activist. She talks quite candidly about what it means to have a chronic illness, and how she manages with it)

    Back to your original question: Losing weight will be hard. You'll not be able to rely on exercise at all, so your food intake should be managed much more diligently. In addition, you really cannot make mistakes with this. Cutting out too many calories and eating too little will completely floor you, instead of taking a day to recover from that mistake, it could take days if not weeks. You also need to take extra care to make sure you're getting all the relevant nutrients. This is something that your doctor should be able to help you out with.
  • ruqayyahsmum
    ruqayyahsmum Posts: 1,513 Member
    I have arthritis and am in the process of being tested to see if it's rheumatoid arthritis since my hand swelled up then decided twisted and clenched is a great position

    If your having issues with movement push to see a physio, some specialize in EDS

    Pain management clinics can be good for learning coping strategies and making sure your on the right medication regime

    I've had to accept that for now I can't be as active as I would like and as I used to be.
    I'm 36 and it's not fun but it's the hand I've been dealt

    Oh and for me it's likely come from my father
    He had arthritis is his early 40's and now in a wheelchair with anklylosing spondylitis as well as the joint problems

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