Guest guest Posted December 18, 2002 Report Share Posted December 18, 2002 I agree, Vickie, call your doctor and let him know. Maybe they can adjust some of your meds. I will tell you though, I have always felt the worst right at the beginning of taking the meds. I hope this passes soon, but just to be safe, call your doctor. Zanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2002 Report Share Posted December 18, 2002 I agree, Vickie, call your doctor and let him know. Maybe they can adjust some of your meds. I will tell you though, I have always felt the worst right at the beginning of taking the meds. I hope this passes soon, but just to be safe, call your doctor. Zanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2002 Report Share Posted December 18, 2002 I agree, Vickie, call your doctor and let him know. Maybe they can adjust some of your meds. I will tell you though, I have always felt the worst right at the beginning of taking the meds. I hope this passes soon, but just to be safe, call your doctor. Zanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2002 Report Share Posted December 18, 2002 Hi everyone! I woke up after a four hour nap and my muscles are all stiff and burning. I would think I overdid something, but I can't think of anything I did. Anyway, I went to have my blood tests today and I go to the doctor Friday, so I will definitely let him know I am concerned. I am so afraid I will end up not being able to walk at all. I am grateful for what mobility I have left, and I hope I don't lose it. It's nice to be able to get out of bed and walk to the bathroom. I also hate being so dependent on everyone else! I think I am still grumbly! I'm going to take a muscle relaxer and go back to bed and hope I feel better in the morning! Vickie Why waste more time...call your doctor! That's silly...something's not working right...you should feel even a modest amount of improvement at this point! Let us know what the doc says. Lynn Check out my website: http//:www.vickieenkoff.com Rubber Stamp Special: Grab bag of 15 images for $15.00 Check my Ebay Auctions: http://members.ebay.com/aboutme/vickieenkoff/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2002 Report Share Posted December 18, 2002 Vickie I had a lot of muscle cramp problems about the 2 mo. time so don't give up....it does get better Teddi mailto:teddifromok@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2002 Report Share Posted December 18, 2002 Vickie I had a lot of muscle cramp problems about the 2 mo. time so don't give up....it does get better Teddi mailto:teddifromok@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 Vickie... I agree with Zanna. That's when I seemed to feel my worst, too. Annette -----Original Message-----From: mrsxanadu@... Sent: Wednesday, December 18, 2002 9:04 PMTo: OurMyositis Subject: Re: Bad DayI agree, Vickie, call your doctor and let him know. Maybe they can adjust some of your meds. I will tell you though, I have always felt the worst right at the beginning of taking the meds. I hope this passes soon, but just to be safe, call your doctor.Zanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 Vickie... I agree with Zanna. That's when I seemed to feel my worst, too. Annette -----Original Message-----From: mrsxanadu@... Sent: Wednesday, December 18, 2002 9:04 PMTo: OurMyositis Subject: Re: Bad DayI agree, Vickie, call your doctor and let him know. Maybe they can adjust some of your meds. I will tell you though, I have always felt the worst right at the beginning of taking the meds. I hope this passes soon, but just to be safe, call your doctor.Zanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 Vickie, You have to give the IViG time to work. Mine didn't start working until about 4 weeks. Don't get too discouraged/ Sue, in Mobile Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 Hmmmmmm.......I sure am sorry you haven't seen any improvement yet, Vickie. I guess it does sound strange for me, since I responded immediately to the meds. I'm sure Vicki and some of the others will give you some sound advice, but I do think it's a little odd. I think you should go back to your Dr. and question this. However, perhaps it is a matter of just giving it more time (how much more I don't know). If you don't respond after a long while, perhaps they will need another biopsy to see if it could be IBM, since it doesn't respond well to traditional meds. either. I'll keep you in my prayers, Vickie. Dawn chaosposte@... wrote: > I've been on prednisone for 2 months now and methex for 6 weeks. I > have had 1 IVIg treatment. I feel like I am worse now than when I > started the medications. I was able to walk 100 feet or so before the > medications and now I can barely stand up in one spot for more than a > few minutes and I am getting muscle spasms in my lower back and the > front of my thighs whenever I walk or stand. It's the muscle spasms > that are really getting to me and keeping me from walking much. And > my muscles burn and sting. I swear if it wasn't for this group, I > would quit taking my meds and go see an oriental medicine doctor! > > Thanks for listening. I'm going to bed! > > Vickie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 Thank you Tenayahh! The things you bring up are things I have been wondering about. I remember someone saying that lack of calcium causes muscle spasms, so that is why I tried taking some extra for a couple of days. Hope it helps. I will ask my doctor about my calcium and potassium levels. I take a multiple vitamin and calcium with D. I also noticed I feel better when I eat protein, so maybe that is what I am missing. I have been trying to keep moving, but yesterday I just gave up. I am moving around a little more today, but still getting spasms. My joints don't hurt--it is definitely my muscle tissue--it burns and stings. It also hurts to walk on my feet--I have difficulty keeping them flat and they want to curl up and throw me off balance. I don't know what that is about! Anyway, I will be patient and hope this all works out. Vickie Hi Vickie, How disappointing to feel so much worse after taking the meds! Your symptom of muscle spasms makes me wonder whether the meds, particularly the prednisone, are causing a deficiency in minerals such as calcium, magnesium, and/or potassium. Did your doctor give you any advice on foods to eat or supplements to take to keep your minerals in balance? See http://www.hollandandbarrett.com/Drug/Corticosteroids_Oral.htm for a list of minerals and vitamins that can be depleted by prednisone. Your bloodwork should show your blood levels of calcium and potassium. Be sure to ask for a copy of the lab report so you can check the numbers yourself. Also, bed rest makes our muscles weaker. Maybe you can start by doing some simple, gentle stretching while lying down to get the blood moving and to keep your muscles warm and flexible. Try this before you get up and see if it helps with the stiffness. I know it's the hardest thing to get up on your feet when you feel weak. But it's very important to keep moving. Are you taking Vitamin D and a calcium supplement? OJ and bananas are sources of potassium. If you take a multi-vitamin be sure it has magnesium in it. Also, you need to be getting adequate protein. My internist recommended whey protein shakes. I use a powdered calcium, so I open the capsules into the shake, add powdered MSM (which makes my legs feel less wobbly), and other vitamins and essential oils. Then I mix it with Silk soy milk. Chocolate whey protein powder and chocolate or vanilla Silk actually makes a pretty decent-tasting drink. It's easier for me than trying to calculate how much protein I'm getting from the other food I eat. I hope you feel better, Vickie! It's important to rest, but it's also important to keep up some gentle movements so your joints don't get too stiff. Best wishes! Tenayahh Check out my website: http//:www.vickieenkoff.com Rubber Stamp Special: Grab bag of 15 images for $15.00 Check my Ebay Auctions: http://members.ebay.com/aboutme/vickieenkoff/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 Hi Vickie, How disappointing to feel so much worse after taking the meds! Your symptom of muscle spasms makes me wonder whether the meds, particularly the prednisone, are causing a deficiency in minerals such as calcium, magnesium, and/or potassium. Did your doctor give you any advice on foods to eat or supplements to take to keep your minerals in balance? See http://www.hollandandbarrett.com/Drug/Corticosteroids_Oral.htm for a list of minerals and vitamins that can be depleted by prednisone. Your bloodwork should show your blood levels of calcium and potassium. Be sure to ask for a copy of the lab report so you can check the numbers yourself. Also, bed rest makes our muscles weaker. Maybe you can start by doing some simple, gentle stretching while lying down to get the blood moving and to keep your muscles warm and flexible. Try this before you get up and see if it helps with the stiffness. I know it's the hardest thing to get up on your feet when you feel weak. But it's very important to keep moving. Are you taking Vitamin D and a calcium supplement? OJ and bananas are sources of potassium. If you take a multi-vitamin be sure it has magnesium in it. Also, you need to be getting adequate protein. My internist recommended whey protein shakes. I use a powdered calcium, so I open the capsules into the shake, add powdered MSM (which makes my legs feel less wobbly), and other vitamins and essential oils. Then I mix it with Silk soy milk. Chocolate whey protein powder and chocolate or vanilla Silk actually makes a pretty decent-tasting drink. It's easier for me than trying to calculate how much protein I'm getting from the other food I eat. I hope you feel better, Vickie! It's important to rest, but it's also important to keep up some gentle movements so your joints don't get too stiff. Best wishes! Tenayahh > I've been on prednisone for 2 months now and methex for 6 weeks. I have had > 1 IVIg treatment. I feel like I am worse now than when I started the > medications. I was able to walk 100 feet or so before the medications and > now I can barely stand up in one spot for more than a few minutes and I am > getting muscle spasms in my lower back and the front of my thighs whenever I > walk or stand. It's the muscle spasms that are really getting to me and > keeping me from walking much. And my muscles burn and sting. I swear if it > wasn't for this group, I would quit taking my meds and go see an oriental > medicine doctor! > > Thanks for listening. I'm going to bed! > > Vickie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 So you think the toes curling is related to muscles spasms too? I'll keep you posted if it gets any better with the extra calcium and potassium! Vickie Vickie... I have leg and foot cramps all the time, especially at night. I take 1200 mgs Calcium with vitamin D every day, but I still get cramps. My toes will spread out and turn down and hurt so much and it takes me a long time to get rid of the cramp. I get them in my calves often, too. Not a pleasant thing, huh? Maybe I should try a little Potassium. Annette -----Original Message----- Check out my website: http//:www.vickieenkoff.com Rubber Stamp Special: Grab bag of 15 images for $15.00 Check my Ebay Auctions: http://members.ebay.com/aboutme/vickieenkoff/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 Vickie... I have leg and foot cramps all the time, especially at night. I take 1200 mgs Calcium with vitamin D every day, but I still get cramps. My toes will spread out and turn down and hurt so much and it takes me a long time to get rid of the cramp. I get them in my calves often, too. Not a pleasant thing, huh? Maybe I should try a little Potassium. Annette -----Original Message-----From: chaosposte@... Sent: Thursday, December 19, 2002 6:06 PMTo: OurMyositis Subject: Re: Re: Bad DayThank you Tenayahh!The things you bring up are things I have been wondering about. I remember someone saying that lack of calcium causes muscle spasms, so that is why I tried taking some extra for a couple of days. Hope it helps. I will ask my doctor about my calcium and potassium levels. I take a multiple vitamin and calcium with D. I also noticed I feel better when I eat protein, so maybe that is what I am missing. I have been trying to keep moving, but yesterday I just gave up. I am moving around a little more today, but still getting spasms. My joints don't hurt--it is definitely my muscle tissue--it burns and stings. It also hurts to walk on my feet--I have difficulty keeping them flat and they want to curl up and throw me off balance. I don't know what that is about!Anyway, I will be patient and hope this all works out. Vickie Hi Vickie,How disappointing to feel so much worse after taking the meds!Your symptom of muscle spasms makes me wonder whether the meds, particularly the prednisone, are causing a deficiency in minerals such as calcium, magnesium, and/or potassium. Did your doctor give you any advice on foods to eat or supplements to take to keep your minerals in balance?See http://www.hollandandbarrett.com/Drug/Corticosteroids_Oral.htm for a list of minerals and vitamins that can be depleted by prednisone.Your bloodwork should show your blood levels of calcium and potassium. Be sure to ask for a copy of the lab report so you can check the numbers yourself.Also, bed rest makes our muscles weaker. Maybe you can start by doing some simple, gentle stretching while lying down to get the blood moving and to keep your muscles warm and flexible. Try this before you get up and see if it helps with the stiffness.I know it's the hardest thing to get up on your feet when you feel weak. But it's very important to keep moving.Are you taking Vitamin D and a calcium supplement? OJ and bananas are sources of potassium. If you take a multi-vitamin be sure it has magnesium in it. Also, you need to be getting adequate protein. My internist recommended whey protein shakes. I use a powdered calcium, so I open the capsules into the shake, add powdered MSM (which makes my legs feel less wobbly), and other vitamins and essential oils. Then I mix it with Silk soy milk. Chocolate whey protein powder and chocolate or vanilla Silk actually makes a pretty decent-tasting drink. It's easier for me than trying to calculate how much protein I'm getting from the other food I eat.I hope you feel better, Vickie! It's important to rest, but it's also important to keep up some gentle movements so your joints don't get too stiff.Best wishes!TenayahhCheck out my website: http//:www.vickieenkoff.com Rubber Stamp Special: Grab bag of 15 images for $15.00Check my Ebay Auctions: http://members.ebay.com/aboutme/vickieenkoff/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2002 Report Share Posted December 19, 2002 Vicki, My toes curl and get so tight and cramped that it hurts. I hate it when that happens...... Zanna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2002 Report Share Posted December 20, 2002 Vickie, That´s truth, Don´t get too discouraged Have a nice day Alvaro Nunes ----- Forwarded by Alvaro Nunes/NecPortugal/pt on 20-12-2002 09:36 ----- SueS36695@aol .com To: OurMyositis cc: 19-12-2002 Subject: Re: Bad Day 17:57 Please respond to OurMyositis Vickie, You have to give the IViG time to work. Mine didn't start working until about 4 weeks. Don't get too discouraged/ Sue, in Mobile Quote Link to comment Share on other sites More sharing options...
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