I’m so sorry you suffered such terrible side effects from those injections. I followed your links and those are terrible side effects and so many! You’ve been through so much and yet you continue to give your all to this support group. A big thanks to you!
I hope never to have to be on prednisone because when I gain weight it’s such a painful strain on my knees. It’s like my knees have a weight limit and if I exceed the limit there’s a fine to pay. Pain.
Yes it is annoying when others don’t understand what we deal with on a daily basis and you just wish they could walk in our shoes for a day.
Tez_20 said:
Hi keepkeepinon,
it’s so unreal the fight we all have on our hands and it really annoys me when people think we’re ok, sometimes it does make you feel like saying HERE HAVE IT.
Well when i stated i was 18st it was through these two steriod jabs which they had me on in large doses which caused brain damage to me in the end besides tablets and besides the weight gain they caused milk to come from the breast and i had to keep wearing womens milk pads for hen they’ve had babies as my breasts kept leaking that bad.
They may help alot which members have mentioned but after having the above and what they did, when they offered me prednisone i totally refused it, through weight gain i can’t cope with carrying weight…so i feel for so many of you wanting pain relief but having to suffer the side of weight gain which is still extra pressure on the body.
I think many with lupus including myself, can so relate to your post. I just got diagnosed with pre-diabetes and have been told that I need to lose 20 lbs. I have the same issues that sometimes my exercise actually induces a flare.
What I have realized during this trial and error time is this:
1, it is better to exercise shorter periods of time about 10-15 minutes at a time. walk maybe divide it into 2-3 times a day.
2. avoid hard impact exercise. Walking is still the best exercise for low impact moving.
3. make sure you have shoes that have alot of impact absorption in them.
4. use ice and ibuprofen for wherever your body hurts at 15 minute intervals on/45 minutes off for a 24 hr period if parts of your body flare up with ibuprofen every 6 hrs as well, if your doctor says that is good.
5. listen to your body. I may be unable to move one day and as soon as the next day I will feel that I can tolerate some exercise the next day.
Oh don't be sorry mate it's happened and there's nothing i can do now but i took proceeding with solicitors when it happened...what made me laugh with those injections was the Modecate was surposed to carm me and never did then the Dipixel was surposed to do the same and that sent me more violent at the time and the dosage was sick 250mg every two weeks...i felt like a walking elephant and how you say your knee's feel the strain it was back pulling on me and the size my boost went to was sick a 48 dd, melons could'nt out beat them and what was worse being small framed all my life your body can't adjust.
I won't be offere prednisone again as the doctor who offered it me was the one i saw in the day unit for my kidneys...there's no help for me and my rheumo's been straight so i have to depend on paracetamol to try and help me.
Oh i dow half wish some people could try what we have for a day never mind a week because what we cope with daily, loads out there who are ignorant would'nt cope for a start off :) xxx
Keepkeepinon said:
I'm so sorry you suffered such terrible side effects from those injections. I followed your links and those are terrible side effects and so many! You've been through so much and yet you continue to give your all to this support group. A big thanks to you! I hope never to have to be on prednisone because when I gain weight it's such a painful strain on my knees. It's like my knees have a weight limit and if I exceed the limit there's a fine to pay. Pain. Yes it is annoying when others don't understand what we deal with on a daily basis and you just wish they could walk in our shoes for a day.
Tez_20 said:
Hi keepkeepinon,
it's so unreal the fight we all have on our hands and it really annoys me when people think we're ok, sometimes it does make you feel like saying HERE HAVE IT.
Well when i stated i was 18st it was through these two steriod jabs which they had me on in large doses which caused brain damage to me in the end besides tablets and besides the weight gain they caused milk to come from the breast and i had to keep wearing womens milk pads for hen they've had babies as my breasts kept leaking that bad.
They may help alot which members have mentioned but after having the above and what they did, when they offered me prednisone i totally refused it, through weight gain i can't cope with carrying weight....so i feel for so many of you wanting pain relief but having to suffer the side of weight gain which is still extra pressure on the body.
great info! thanks.... i do the dog walks daily too. force myself....regardless. it helps not being too stiff/
but the tea... i bought some good tea.. i need to be consistant with it.
i am guilty though---- i absoulutely am addited to coffee.
*hides face*
Keepkeepinon said:
I go for a walk with my dog. I try to do this daily, weather permitting. I made CDs of my favorite music and used to dance for exercise, too. I also would put on some music while I clean the house to try and give me more energy. I'm not on steroids which we know can cause weight gain. I remember having to use prednisone about 8 years ago for just 2 weeks and in those 2 weeks I gained 10 pounds. I did have a hard time losing it. Regarding my diet, I hardly snack on chips, cookies/baked goods, anything with sugar. If I have a craving for something sweet I'll eat fruit. I also don't drink soda pop. And one last thing is that I drink tea. I use organic honey to sweeten the tea or nothing at all. Green tea is good for losing weight, ginger lemon tea is good for those with stomach and intestinal issues like gas, nausea, and inflammatory stomach pain, and I love apple cinnamon tea for the flavor. This is what I find works for me. If you're not a tea person then lemon water will do.
I had gained alot of weight too. But I finally found a solution! I've stopped using butter, olive, canola and vegetable oils to cook AND bake with and replaced them with coconut oil! I've now lost 15 pounds in two months. That's all and I feel great and don't hurt nearly as much! Hope this may help you or someone else!
I also have spondylitis which is RA of the spine so I consider keeping a low body weight essential. I do stretches, yoga, walking, exercise bands and ab work on an exercise ball. I also changed the way I look at food. Now I consider food as fuel for my body. Nothing else. I do let myself occasionally have a treat but I know if I get out of control, I will hurt more. Many days when I’m feeling bad, I’ll force myself to walk around the neighborhood and it always makes me feel better.
It is absolutely normal to gain weight from the steroids. Most often it will reverse itself as you start decreasing your steroid use.
One of the things I noticed is that when I am in paid I don't want to cook, which means grabbing whatever may be handy and as we all know processed foods tend to be more fattening. I have found that going gluten-free has helped me immensely (the weight-loss was a side effect) but it helps with my ability to handle my meds without terrible stomach upset.
A hottub is great for low-impact marching and working out your lower body and jump-starting your metabolism.
Low impact cardio like an elliptical machine is easier on joints too. It’s important to start slow and not overdo it and choose the time of day your energy is best. It helps my insomnia to exercise in the evening.
I also have a bowflex. It’s a fluid way to strength train and keep joints limber from use. Muscle also burns calories at rest. Eating clean is key also.
There are a number of exercises that can be done while lying or sitting. I only know this because after a back surgery I was in a cast for 2 months and flat on my back. My PT showed me several exercises that could be done while lying down. There are several websites that can show you these exercises.
However, with Lupus and other auto-immune diseases it's important to keep up with your cardio as well. Even if it means just walking around your home. That will burn calories even though it may not be apparent right away.
You may also want to look into exercise equipment that can be used with little effort in the beginning such as stretching bands or if you have access to a Wii the Wii fit has programs for yoga and pilates which are very low impact. Protein use burns calories so the intake of more protein than carbs will help as well.
You have gotten many wonderful suggestions and know that we are all here to help and support you. Please feel free to ask any of us what works for us.
yoga. anytime i hurt really bad i do nothing. but yoga is great as well. not the advanced stand on one leg and wrap the other around your ear, but streaching your body within limits of course helps relax tense muscles and connective tissue. look for beginners class or dvd. hope you feel better soon. hugs to all!
great info! thanks.... i do the dog walks daily too. force myself....regardless. it helps not being too stiff/
but the tea... i bought some good tea.. i need to be consistant with it.
i am guilty though---- i absoulutely am addited to coffee.
*hides face*
Keepkeepinon said:
I go for a walk with my dog. I try to do this daily, weather permitting. I made CDs of my favorite music and used to dance for exercise, too. I also would put on some music while I clean the house to try and give me more energy. I'm not on steroids which we know can cause weight gain. I remember having to use prednisone about 8 years ago for just 2 weeks and in those 2 weeks I gained 10 pounds. I did have a hard time losing it. Regarding my diet, I hardly snack on chips, cookies/baked goods, anything with sugar. If I have a craving for something sweet I'll eat fruit. I also don't drink soda pop. And one last thing is that I drink tea. I use organic honey to sweeten the tea or nothing at all. Green tea is good for losing weight, ginger lemon tea is good for those with stomach and intestinal issues like gas, nausea, and inflammatory stomach pain, and I love apple cinnamon tea for the flavor. This is what I find works for me. If you're not a tea person then lemon water will do.
tez i can sympathize about coumadin with you. I am a lifer with coumadin due to antiphospholipid antibody. my weight has increases 20 lbs in 5 years. predinsone whacks out my inr coupled with all the food you need to avoid with coumadin. it is enogh to make me lose my mind.
what's your take on spider veins? i am on my feet all day-teacher, they are increasing. my cardio tells me she can lzer them Way, they are so ugly. I can get one maybe 2 zumba classes a week in about 1 week a month. I am trying by backsliding. I live in Maine and can find a support group for those wth lupus. wouldn't it be nice to be with a group of luppies to commisserate with now and then? maybe I need a live in physician to guide me.
great info! thanks.... i do the dog walks daily too. force myself....regardless. it helps not being too stiff/
but the tea... i bought some good tea.. i need to be consistant with it.
i am guilty though---- i absoulutely am addited to coffee.
*hides face*
Keepkeepinon said:
I go for a walk with my dog. I try to do this daily, weather permitting. I made CDs of my favorite music and used to dance for exercise, too. I also would put on some music while I clean the house to try and give me more energy. I'm not on steroids which we know can cause weight gain. I remember having to use prednisone about 8 years ago for just 2 weeks and in those 2 weeks I gained 10 pounds. I did have a hard time losing it. Regarding my diet, I hardly snack on chips, cookies/baked goods, anything with sugar. If I have a craving for something sweet I'll eat fruit. I also don't drink soda pop. And one last thing is that I drink tea. I use organic honey to sweeten the tea or nothing at all. Green tea is good for losing weight, ginger lemon tea is good for those with stomach and intestinal issues like gas, nausea, and inflammatory stomach pain, and I love apple cinnamon tea for the flavor. This is what I find works for me. If you're not a tea person then lemon water will do.
spiderveins....ugggh! i knew i wasnt going crazy... my feet have some new vains that were no their before. i thought i was going crazy....
elaine chateauvert said:
tez i can sympathize about coumadin with you. I am a lifer with coumadin due to antiphospholipid antibody. my weight has increases 20 lbs in 5 years. predinsone whacks out my inr coupled with all the food you need to avoid with coumadin. it is enogh to make me lose my mind.
what's your take on spider veins? i am on my feet all day-teacher, they are increasing. my cardio tells me she can lzer them Way, they are so ugly. I can get one maybe 2 zumba classes a week in about 1 week a month. I am trying by backsliding. I live in Maine and can find a support group for those wth lupus. wouldn't it be nice to be with a group of luppies to commisserate with now and then? maybe I need a live in physician to guide me.
Spider veins...YIKES...mine have definitely increased since I was diagnosed with Lupus...just saw a new one on my arm today and that that was strange! So much fun, isn't it?!
