Hi I have tried and failed with trying to be active and managing pain.
I have stage 4 endo extensive. All organs are adhered to each other.
I also have mixed connective tissue disease and being treated with hydroxychloroquine.
I have been on zoladex and Tibilone for 2 years waiting for a hysterectomy, excision surgery, bladder and bowel resection.
My weight has slowly been increasing over the last 3 years. 😰
I was active until about 8 years ago when my endo flared up. I have been on and off numerous medications for pain and hormone therapies over this time.
Last year I slowly built up my exercise regime again started slowly going for walks etc... and was even managing to run. I wasn't able to lose weight but I did get fitter.
The problem was I would end up with horrendous pain throughout my body and it would take me weeks to recover.
I've started getting to the point now where even day to day tasks are difficult due to pain. Washing dishes, cooking, having a shower.
I have started to do gentle exercise again and the pain my body is horrendous again. I dont eat more than 1500 calories a day.
Im fed up of the pain and weight gain.
Where can I get help?
Im really down. 😭
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sadly, your body may not be able to take exercise. I have spent many years asking the same question after exercise triggered further complications. In Kent we have exercise referral programmes where staff trained in conditions run rehabilitation exercise programmes. They are effective but less intense. I did aqua aerobics which was walking exercises in the pool and it was brilliant. We get referred through the GP. Pilates may be good as generally lying down so not weight bearing but toning. I loved it. But you need someone with a physio background who will know your limits. Many back clinics offer Pilates and rehab exercises.
I have had to learn to love the extra parts of me and rely on walking in beautiful places to prevent the full Violet Beauregard experience but in pink.
Thank you for your reply. Our NHS doesn't have anything like that in my area. I was referred to wellbeing and they just talked to me about what a healthy plate looked like. 🧐😕. Which I learnt many years ago in primary school. Felt really patronising.
I have been chasing my pain clinic referral for 6 months.
I have started pilates with a personal trainer who is aware of all my conditions and he is being very supportive.
Our swimming pools are heaving and cant get to a time during day when its quiet as I work full time. ( not sure how long I can keep that up)
I know the feeling about violet B experience. I'd be a blue version 🤣.
Hi, I don’t have Lupus but have GPA vasculitis and I am on 10mg if steroids and Rituximab every 6 months. I also try to keep up with some sort of exercise, mainly walking albeit with a stick. It is something I have to make myself do, as it is painful doing and painful after as really hurts my joints and yet I never see any benefit, never seem any fitter and certainly not losing weight. ☹️ it is very demoralising; so completely understand where you are coming from. However, how I try to look at it to keep me going is that it is better to do something not just for physical wellbeing, but my mental wellbeing. Sometimes it is about accepting the little wins, which I do if I can get myself out for a little walk as it is very easy to not to. Hold on to your little wins 😊
I’ve come to realise with my immune condition that life changes to varying degrees for each individual. Believe me I was always comparing my situation to other people who posted on this forum, who were maybe doing marathons etc and feeling useless. But I have come to understand that immune conditions like vasculitis and lupus to affect people differently and therefore not helpful to compare, all you can do is what you can do and that is how I look at my achievements each day - sometimes it is a win to even get out of bed, as I am sure you have experienced. I try to keep a regular routine, get up same time, make the bed etc., and then have little goals for the day or the week, so if able to do then it is something to feel good about. It is not always easy as you know and yea I do have days when it’s very difficult to not to feel useless, but then it is when I try to be strict with myself and do something, like a little walk and usually by the end I feel better. 😊
Remember give yourself a break, we’ve been given enough of a crap hand to deal with. Take care and happy 2023 😊
Hello love! Been there! First things first, DO NOT, under any circumstances beat yourself up. It is not your fault you got endo and it is not your fault that it restricts you. Second thing, . Don't give up doing the exercise you can do. Do a bit, stop a bit. I had the most horrendous weight gain. My feet stopped but my belly kept on going.
Here is what I did. Might work for you. I checked I wasn't anemic. Endo can make you anemic and anemia stops your gas exchange working, so any aerobic exercise ends in disaster. You go grey and fall over. I did that over a wall after I tried to run.
Then I did resistance exercise. Slowly and gently. It is much better than hammering a tread mill.
Next and crucially. I chucked out all the stupid diets. No fasting, no cabbage diet, no fads.
I upped my protein a huge amount. Loads of beans, lentils, eggs, veg, fruit meat etc. (not keto.That is another dodgy diet)
Then I cut the carbs right down. Half the amount of potato I used to have. I did that one spoonful at a time. One spoon of spuds off, one spoon of beans on, for weeks until I had more bean than spud. Sounds awful, but I can't eat just spud now!
Then every bit of proceed food went in the bin. If it comes out of a packet don't eat it.
Ban the biscuits. (Not found a replacement yet, heartbroken)
Then just live your life. Do things you enjoy. Do your best.
I have lost 10kg. It took an age, but it has stayed off because my diet is radically different.
And don't buy a tent dress under any circumstance.
Erm... I have a couple of tent dresses too late 🥺. 😂. But seriously thank you. I got to this weight particularly because I tried dieting which I never did before I was 37 to be honest. I went down to 800 calories a day. Then back up then tried cutting out gluten, carbs etc... none worked for me. I was at a point where I was weighing my food before cooking which is ridiculous right 😵.
I've kept a food diary so I know what to get rid of and have been cutting down. Beans/pulses, cauliflower and cabbage dont agree with me. (I look like im having twins with them) So most of my protein comes from fish, eggs or chicken etc...
I dont eat packet food. I try to make it from scratch then I know what I've put in.
Well done on losing the weight! Ill use that as an inspiration.
Hello again. Stop it. . NO Tent Dresses. You are not worthy of THE TENT . Take good care of yourself. You are worth it. Even if it only to yourself!👍😀 Re pulses: Fart a lot!
I don't need to imagine! One serious tip for beans and pulses is to buy them in tins. If like me you do them from dried, soak them over night, discard the soak water , boil them rapidly in a big pan of water on a stove top, give them what I call the banging boil. The pan has to bang on the stove top for 10 mins. Its a really hard boil. That breaks the toxins down that cause the wind. Then drain the beans and rinse them and then cook them slowly in a pan on the stove for about 40mins to an hour. Or an instant pot for about 20 mins on the high pressure. Your gut bugs get used to the beans just about the same time your friends walk out of the door! And get a belt on that tent dress! (give it to charity and let some other poor sucker suffer). You can wear legging.
I usually soak and then cook. Might try the pressure cooker. I made a mix bean soup once was delicious but my belly didnt appreciate it at all. Thank you for that tip. 💜
Hi dearUnfortunately our day starts and ends with pain. I struggle with weight and I try to exercise such as swim or some simple yoga when I can. I am trying to accept my limitations my body shape and be happy in my body. It is not easy but we just need to enjoy our good days and be patient on our bad days.
Please be kind to yourself and take each day as it comes. Xx
Thank you for your response ijeasike. Maybe you are all right and im being too hard on myself. All my life I've been the one that has looked after everyone. Been the breadwinner, raising my children as a single mum. Think my body now has just worn out. So maybe just finding my independence restricted and getting tired from just having a bath isn't how I expected to be when I just turned 40 and feel like I'm 90. 💜
Serious health problems + immobility + trying to watch weight = a complex, frustrating, demoralising equation! I feel for you as it’s flipping hard work!
I follow WW (Weight Watchers) and have done so for approx 30 years….in 2015 I got to my Goal Weight (I’d lost almost 3 stones) and have managed to maintain my Gold Membership since. Pre Covid I went to a local WW meeting most weeks but it closed & unfortunately hasn’t yet reopened.
I’ve got lots of orthopaedic ailments & have had spinal surgery plus I have Lupus so some days I am immobile/incapacitated despite always being a sporty person who enjoys fitness & exercise. It hurts if I do, it hurts if I don’t so when I can I may as well do! I’m a member at a Gym where I swim & use the hydrotherapy pool/spa, I also do Yoga (been doing it 30+ years), walk regularly, cycle & hula hoop ….. No I’m not turbo charged, quite the opposite usually….I regularly struggle with fatigue as well pain all the time….
WW have an App which gives you access to Virtual Workshops which are very popular plus they do various online exercise classes including chair-based for the less mobile. There are different membership types but everyone has access to the community forum called, “Connect” which is a good source of information, support plus various groups for specific interests or like-minded people.
It might be worth you having a look at the WW website to get a better idea as to whether or not it’d be for you.
I havent tried weight watchers yet. I will look it up. I had a weighted hoop which I used to do. But can't really move like that anymore. Might pick it up and give it a try.
Great to hear you lost 3 stone!,thats,an achievement 👏. Will keep plugging away. 💜
sorry to read your problems sounds tough. ? Dr Chandler Marrs has a lot to say on her research on thiamine.apparently it is "the doorway" for most other interactions in the body. This might be a good place to start. You can Google (dr Chandler Marrs, mitachondria's gateway to energy Thiamine) it is on Utube. all the best for you
Don't despair. If you don't like beans and they hate you, don't bother with them ever again. If you do want to try again, you do need to boil beans hard though. They have a toxin in the skin to prevent animals from eating them. This toxin need breaking down, which the hard boil does. Don't cook them in the soak water or the boil water, chuck that out and start with fresh water.
My daughter uses protein powder in soaps, milk drinks and stuff like that. She swears by bananas too. (some one has to like them!)
I hate the thin Facists. They have never had a days illness, never had a painful period and judge everyone else because they got lucky. They are worse that beans for giving you gripe. Don't fall for their nonsense. Your sense of humour and your smile are your best assets and red lippy. Your never too old or too fat for red lippy.
Instant pot will become your best friend ever. Instant pots are life changing. I would definitely recommend one of those. I have two and I would grab them in a house fire.
I do have a pressure and slow cooker. I didnt know about that. Will try again with the beans and throw original water out. I do drain them and wash twice . I've considered protein powder just to keep me full but im just worried about understanding what im eating and how it effects.
I have bellspalsy so red lips are not something that I would ever do! Although I have used maroon 😊 in the past.
Definitely eating soap is not recommended. Protein powder is the whey, like the crumb bits, left over from cheese making, sometimes there is plant protein like soya bean. There are vegan protein powders too but I don't get vegan, so I have no idea what is in it. Don't let bells palsy put you off being a red hot mama! You seem to me to be a great gal, who is just far too down on herself. I have arthritis and asthma. I cough like Woodbine Lil. That is so embarrassing when I go to a restaurant. I was going to buy a pack of Woodbines and a lighter as a prop so people would think I am an excessive smoker! I cough and people dive under the table thinking I have Covid. And of course there is the stress dribble, I am developing a cast iron thigh grip! I bet you can scrub up and look great, as long as you put a belt on that tent dress! 😆. You might not be conventional but who want to look like a fashion clone!
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