Guest guest Posted March 9, 2012 Report Share Posted March 9, 2012 Ewelina my dear, I love how devoted you are to your workouts, but most doctors will tell you that if you are in a " flare " you really have to work on taking care of yourself. With your knees doubling in size I would advise you to check with your doctor before doing any further exercise. You don't want to make anything worse, and you also need to give your body much needed rest at this time. Give your body a chance to get used to the Kineret and see if that is going to help you to get to a remission. If you have a fever that is also a sign that you need to take it easy. I know you don't want the Dragon to win the war, but you have to rest up to do battle! I completely understand the weight issue 100%. I was on Prednisone for over a year and a half and had put on 35 pounds at the rate of about 2 pounds per month. I am blessed that the weight came once I got off thtat med. I did come off just as slowly as it went on, but did come off. Plus I lost an additional 12 pounds. So I am so so happy for that! But I, like Kirk, never truly got a remission since my diagnosis. I pushed myself to continue to work until I was sent home in April of 2008. I attempted to work 4 hours for 4 evenings per week at the end of 2009 but was only able to hold on for 4 months before I ended up back in the hospital. And as mch as I loved that part time job (it made me feel more " normal " ) but each day I was sicker and sicker and sicker. I culdn't even drive, my husband had to drive me and pick me up. Then i look at how many months it too me to regain that footing. So now I try to look forward and not jeopardize ANY progress I make. even though it is in ant-sized foot steps! hugs, Jo In a message dated 3/9/2012 11:55:33 A.M. Eastern Standard Time, xevy88x@... writes: I've expierieced a lot of pain, and today my knees r double in size Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2012 Report Share Posted March 9, 2012 Jo, You make so much sense in your advice to save that energy that we save up when we do. For me it just doesn’t build up like it used to and give me good days much. I cannot even imagine exercising. I have a stationary bike I plan on try to pedal, but it will be 2 minutes at first. I am so careful not to jeopardize any progress made after resting up. It just does not happen as much any more. As far as the weight, can I ask you what worked for you to take it off? Did you have to wait to get off prednisone first? I take 30mg H/C, but on some days try to take half a dose of only 5mg to see if I can eventually get down to just 25mg per day. It’s hard though. as soon as I get down to 25mg a day or two here or there, I feel it and it seems to be my “edgeâ€. I so badly want to take off the weight though, I put on 80 lbs in 3 years. I was put on Abilify in 2009 and the doctor believes it could have contributed. Thanks in advance, From: SmoochRN@... Sent: Friday, March 09, 2012 5:28 PM To: Stillsdisease Subject: Re: hmm Ewelina my dear, I love how devoted you are to your workouts, but most doctors will tell you that if you are in a " flare " you really have to work on taking care of yourself. With your knees doubling in size I would advise you to check with your doctor before doing any further exercise. You don't want to make anything worse, and you also need to give your body much needed rest at this time. Give your body a chance to get used to the Kineret and see if that is going to help you to get to a remission. If you have a fever that is also a sign that you need to take it easy. I know you don't want the Dragon to win the war, but you have to rest up to do battle! I completely understand the weight issue 100%. I was on Prednisone for over a year and a half and had put on 35 pounds at the rate of about 2 pounds per month. I am blessed that the weight came once I got off thtat med. I did come off just as slowly as it went on, but did come off. Plus I lost an additional 12 pounds. So I am so so happy for that! But I, like Kirk, never truly got a remission since my diagnosis. I pushed myself to continue to work until I was sent home in April of 2008. I attempted to work 4 hours for 4 evenings per week at the end of 2009 but was only able to hold on for 4 months before I ended up back in the hospital. And as mch as I loved that part time job (it made me feel more " normal " ) but each day I was sicker and sicker and sicker. I culdn't even drive, my husband had to drive me and pick me up. Then i look at how many months it too me to regain that footing. So now I try to look forward and not jeopardize ANY progress I make. even though it is in ant-sized foot steps! hugs, Jo In a message dated 3/9/2012 11:55:33 A.M. Eastern Standard Time, mailto:xevy88x%40gmail.com writes: I've expierieced a lot of pain, and today my knees r double in size Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2012 Report Share Posted March 10, 2012 Hi Ewelina, I’ve had aquatic therapy and it was the second most helpful therapy I’ve ever received. The first most effective is massage therapy.There is something about the way the water removes the whole gravity placed against our bodies that allows me to move much more freely and fee like I am supported all around me. It’s been a blessings. There is not way I can do any land therapy right now or have been able to for quire some time. Hoping this will change for me after I get back to the pool and build up some endurance. The other athletes who use pool therapy for conditioning, tell me that it is and can be a very difficult and hard work out. Especially using the blow up weights for resistance. They can be strapped to your arms and or legs to provide the extra weigh I plan on signing up for aquatic therapy again in the spring and hopefully building up some endurance From: Chrisman Sent: Saturday, March 10, 2012 3:26 AM To: Stillsdisease Subject: Re: hmm Ewelina, I havent tried aquactic therapy yet however, I have used my neighbors hot tub just to soak in and relieve my aching joints. Its great while i'm in it relaxing however, whenever i get out my knees are really swollen. I didnt think about before but the heat of the water could be whats adding to the immflamation. Running has always been my thing 2 years ago I ran a lot (i think when i run, the more i think the faster i'd run), last summer i noticed i was having trouble running my body just didnt want to so i walked more than i ran. My goal was to get to the gym and start a couch to 5k program, ive never ran in a 5k, however after i volunteered at one last year i decided that was what i was going to do this year. Well that didnt work out for me, but i feel everything happens for a reason, and if i was meant to have this disease there is a reason even though i'm not sure what it is yet. It has forced me to slow down and may be that is not all bad, i have started looking at all the little things in life that are taken for granted everyday. (little things that you dont see when your caught up in the crazy world of fast paced life) From: ewelinasandulescu <mailto:xevy88x%40gmail.com> To: mailto:Stillsdisease%40yahoogroups.com Sent: Friday, March 9, 2012 11:55 AM Subject: hmm I just found a connection, I've been working out every day for the past year, and some days my joints would hurt soo bad that I had to take a break for few days. I've lost 55lbs and I was working out for 1 hr n 1/2 every day for a month non stop right before everything got worse. maybe working out has to do anything with stills getting worse? by the way since I'm unable to work out and I've been gaining a lot of weight my doc suggested aqua therapy, has anyone tried that? I went to the gym yesterday to try out aqua aerobics class, but that was difficult since I can't bend my knees, even in deep water I've expierieced a lot of pain, and today my knees r double in size -Ewelina > > Hi everyone I'm new to this group and just wanted to take a minute to introduce myself. My name is I'm from Ohio, have 2 boys 16, and 13, and an 18 year old daughter. I began getting sick the beginning of January ironically I started the new year by getting a membership to a rec center where the kids and I could go work out play raquet ball - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2012 Report Share Posted March 13, 2012 Hey , unfortunately, while I was on the Prednisone I continued to go up 2 pounds each month. BUT I have to say, if I had tried I might have been able to cut back here and there to save some calories. That could have maybe off-set some of the gain. Tappering off the Prednisone for me, the gang here may remember, was an extremely delicate process for me. I literally could only budge down 1 mg per WEEK! I was (don't quote me!) I think on 25mg for the longest time, and it took me SO long to get off. At first I was more aggressive and tried to go down 5 mg a week, that was a nightmare! So we had to go ALL THE WAY back to 25 and start again, 1 mg at a time. And then 2 or 3 times I got as far as 13 or 12 and then I'd flare so badly I'd have to go up to 20 and then try again! it was a really long process for me. And none of the weight even started to come off until I was off the Prednisone for about a month or more. It could have even been a few months. I remember feeling pretty sad that the weight wasn't moving, but I was off the meds and I didn't want to push my body by starving it or by starting to exercise because I didn't want to jeopardize getting off the meds. It seemed that once I was sort of accepting of it, and appreciating that I was feeling well enough to not need the Prednisone, and that was really the thing to focus on, and I stopped beating myself up about the weight, then I would only weigh myself ONCE A MONTH! and at the same time within the month (after my cycle) so that I wouldn't have bloat, then I finally saw each month 2 pounds gone! It feels so good to look in the mirror and recognize the face looking back at me!!! I was so round in the face I just felt strange to look in the mirror! (I think I avoided it as much as possible!) But hang in there. Let the medicine and the rest do what it can do for you, and just keep it in the back of your mind that this is all temporary! Hope this helps hugs, Jo In a message dated 3/9/2012 9:39:16 P.M. Eastern Daylight Time, ginabomp@... writes: I so badly want to take off the weight though, I put on 80 lbs in 3 years. I was put on Abilify in 2009 and the doctor believes it could have contributed. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2012 Report Share Posted March 13, 2012 Hey , unfortunately, while I was on the Prednisone I continued to go up 2 pounds each month. BUT I have to say, if I had tried I might have been able to cut back here and there to save some calories. That could have maybe off-set some of the gain. Tappering off the Prednisone for me, the gang here may remember, was an extremely delicate process for me. I literally could only budge down 1 mg per WEEK! I was (don't quote me!) I think on 25mg for the longest time, and it took me SO long to get off. At first I was more aggressive and tried to go down 5 mg a week, that was a nightmare! So we had to go ALL THE WAY back to 25 and start again, 1 mg at a time. And then 2 or 3 times I got as far as 13 or 12 and then I'd flare so badly I'd have to go up to 20 and then try again! it was a really long process for me. And none of the weight even started to come off until I was off the Prednisone for about a month or more. It could have even been a few months. I remember feeling pretty sad that the weight wasn't moving, but I was off the meds and I didn't want to push my body by starving it or by starting to exercise because I didn't want to jeopardize getting off the meds. It seemed that once I was sort of accepting of it, and appreciating that I was feeling well enough to not need the Prednisone, and that was really the thing to focus on, and I stopped beating myself up about the weight, then I would only weigh myself ONCE A MONTH! and at the same time within the month (after my cycle) so that I wouldn't have bloat, then I finally saw each month 2 pounds gone! It feels so good to look in the mirror and recognize the face looking back at me!!! I was so round in the face I just felt strange to look in the mirror! (I think I avoided it as much as possible!) But hang in there. Let the medicine and the rest do what it can do for you, and just keep it in the back of your mind that this is all temporary! Hope this helps hugs, Jo In a message dated 3/9/2012 9:39:16 P.M. Eastern Daylight Time, ginabomp@... writes: I so badly want to take off the weight though, I put on 80 lbs in 3 years. I was put on Abilify in 2009 and the doctor believes it could have contributed. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2012 Report Share Posted March 13, 2012 Hey , unfortunately, while I was on the Prednisone I continued to go up 2 pounds each month. BUT I have to say, if I had tried I might have been able to cut back here and there to save some calories. That could have maybe off-set some of the gain. Tappering off the Prednisone for me, the gang here may remember, was an extremely delicate process for me. I literally could only budge down 1 mg per WEEK! I was (don't quote me!) I think on 25mg for the longest time, and it took me SO long to get off. At first I was more aggressive and tried to go down 5 mg a week, that was a nightmare! So we had to go ALL THE WAY back to 25 and start again, 1 mg at a time. And then 2 or 3 times I got as far as 13 or 12 and then I'd flare so badly I'd have to go up to 20 and then try again! it was a really long process for me. And none of the weight even started to come off until I was off the Prednisone for about a month or more. It could have even been a few months. I remember feeling pretty sad that the weight wasn't moving, but I was off the meds and I didn't want to push my body by starving it or by starting to exercise because I didn't want to jeopardize getting off the meds. It seemed that once I was sort of accepting of it, and appreciating that I was feeling well enough to not need the Prednisone, and that was really the thing to focus on, and I stopped beating myself up about the weight, then I would only weigh myself ONCE A MONTH! and at the same time within the month (after my cycle) so that I wouldn't have bloat, then I finally saw each month 2 pounds gone! It feels so good to look in the mirror and recognize the face looking back at me!!! I was so round in the face I just felt strange to look in the mirror! (I think I avoided it as much as possible!) But hang in there. Let the medicine and the rest do what it can do for you, and just keep it in the back of your mind that this is all temporary! Hope this helps hugs, Jo In a message dated 3/9/2012 9:39:16 P.M. Eastern Daylight Time, ginabomp@... writes: I so badly want to take off the weight though, I put on 80 lbs in 3 years. I was put on Abilify in 2009 and the doctor believes it could have contributed. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2012 Report Share Posted March 30, 2012 Any kind of activity made things worse for me. That's why I had to stop working, the more I do the higher the fevers would go and the more I would hurt. By the time I got home all I could do was go straight to bed. I lost 25 pounds in just two months. The weight loss was the only good thing that came from it but after staying home a few months I gained it all back, lol. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2012 Report Share Posted March 30, 2012 Any kind of activity made things worse for me. That's why I had to stop working, the more I do the higher the fevers would go and the more I would hurt. By the time I got home all I could do was go straight to bed. I lost 25 pounds in just two months. The weight loss was the only good thing that came from it but after staying home a few months I gained it all back, lol. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2012 Report Share Posted March 30, 2012 Yes, I was in asimilar position as you. I was in such bad shape I could not do anything, literally. I could not work, walk, use my hands...it was so terrible. In the beginning it was aterrible combination of meds: steroids, Kineret, MTX, and anti-inflammatories. The meds took hold and I can now lead a relatively normal life. I still hurt like hell every day and have to fight to keep going, but I CAN go, and that's what counts. I have not been on the steroids for a long time now and the anti-inflammatories are not neecec at the current time, but there is a plethera of other medication and suppliments I take. It does help to lead a relatively normal existance, though. Not necesarily pleasant, but livable. I did recently have to go on daily pain meds because the pain is just unbarable, but pretty much everyone with Stills does. I am suprised I was able to wait this long. April Sent from my Verizon Wireless Phone RE: hmm Any kind of activity made things worse for me. That's why I had to stop working, the more I do the higher the fevers would go and the more I would hurt. By the time I got home all I could do was go straight to bed. I lost 25 pounds in just two months. The weight loss was the only good thing that came from it but after staying home a few months I gained it all back, lol. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2012 Report Share Posted March 30, 2012 Yes, I was in asimilar position as you. I was in such bad shape I could not do anything, literally. I could not work, walk, use my hands...it was so terrible. In the beginning it was aterrible combination of meds: steroids, Kineret, MTX, and anti-inflammatories. The meds took hold and I can now lead a relatively normal life. I still hurt like hell every day and have to fight to keep going, but I CAN go, and that's what counts. I have not been on the steroids for a long time now and the anti-inflammatories are not neecec at the current time, but there is a plethera of other medication and suppliments I take. It does help to lead a relatively normal existance, though. Not necesarily pleasant, but livable. I did recently have to go on daily pain meds because the pain is just unbarable, but pretty much everyone with Stills does. I am suprised I was able to wait this long. April Sent from my Verizon Wireless Phone RE: hmm Any kind of activity made things worse for me. That's why I had to stop working, the more I do the higher the fevers would go and the more I would hurt. By the time I got home all I could do was go straight to bed. I lost 25 pounds in just two months. The weight loss was the only good thing that came from it but after staying home a few months I gained it all back, lol. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.