Guest guest Posted July 5, 2001 Report Share Posted July 5, 2001 Vicki, I know exactly what you mean about not being able to hold unto things. I let go of something my son handed me one day and he got mad at me for not holding on. I tried to explain that my hand hurt so bad that I had to let go, but of course he still didn't understand. I don't know why he got so upset because I didn't break anything, oh well, one of those things. I often drop things while I am cooking and the boys are always teasing me for throwing things in the kitchen. Gentle hugs, Fern Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2001 Report Share Posted July 6, 2001 ... You hit the hand thing right on the head. It does feel like it's my tendons. I am unable to make a closed fist. The tendons are tight and really painful when I try. During the evening hours my hands really hurt. But, I can't describe the pain. It's not throbbing... this morning they really ache. The base of the thumbs are very sore and if I hit it just right... You can hear me in New York. I'm really fighting to stay awake again. Already took a 45 minute nap ....lol I wouldn't mind so much if this was actually BEAUTY sleep. But, I wake up the same old way.... I can't win. ... I'm waiting for you to get on here and praise your doctor. At least I hope you're going to praise her. How did it go? Take care, Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2001 Report Share Posted July 6, 2001 Vicki Did you ever email re the hand.....the tendons were what he had operated on.... if you have (gasp) lost his email addy write me off list & I'll give it to you. Teddi mailto:teddifromok@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2001 Report Share Posted July 6, 2001 I love her I love her I love her !!! Oh sorry, got carried away !!! NEways..........I cant tell you how refreshing it was to actually get to sit ad "talk" to a doctor and be able to ask questions and know the doctor is listening !!!! My appointment began at 3:30 and I didnt get out of there until almost 5:00 !!! She asked the usual 1000 questions and when it came to the "You arent too fond of Dr. Sheikh?", I could only answer "Next question please !!!" She laughed as he isnt her most favorite person either and understood where I was coming from. That made me feel good !!! She did labs and scheduled me for a bone density test this coming Tuesday. She couldnt believe that Freak had not sent me for one before now but that is just typical for him as you all know. She is requesting all my prior records from all the doctors Ive seen and wants to see me again the 1st of August. I told her how much I despise the prednisone and she said that in her opinion, I should be back on the methotrextate (at a higher dose than Freak had me on) and that it can work with other drugs besides prednisone (which we will discuss next month). She also didnt agree with Freak regarding the exercise regime. She said that in her opinion, there is no reason that I cant resume my power walks as long as Im not flaring. Made my day as this tail end keeps getting wider by the day !!! I almost died when I got on those scales at her office. I havent weighed this much in my life (including at 9 months pregnant) !!!! Something just has to give and fast !!! I think I may just get a giant chip clip and place it right over my lips (as I finish the remaining Steak and Shake orange freeze that I had for dinner) !!!!! The best of weekends to all and to all a good night !!!!! My cats knead me !!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2001 Report Share Posted July 6, 2001 Hi Fern.... You described the hand pain. I didn't think anyone else had this problem but I guess it must be part of the myositis. I didn't have it when I was on the higher dose of Prednisone... that make sense to me. I don't want to go back on the Prednisone since I'm down to 5mgs. At times the pain in my hands wakes me up in the middle of the night. I went to pick up a coffee cup that was empty and I had to let it drop to the ground. Hope you had a good day and keep your chin up, it will get better. Hugs Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2001 Report Share Posted July 6, 2001 Hi Teddi.... Yes I did write to and we talked about his hand problems. He has the same thing I've been describing and he's been operated on twice. But, sad to say it didn't help him. He did say he's started taking a supplement vitamine and he would let me know if it does any good. How are you today? We just had a heck of a storm go through here. Flash flood warning for the mountain areas... this was a true desert storm. It dumped a lot of water in a short period of time. I still have cloud cover so I'm enjoying this. People are asking when this rain will end... Calif. crazy people.... I wish it would never end. Take care, Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2001 Report Share Posted July 6, 2001 Vicki.....send me your storm....it is soooo dry here......you would think that would lower the humidity.....NOT.......our official temp in OKC was 97 but know it was in the 100's other places in the state and probably in OKC just not at the airport. I overdid last week so am back to square one again.....not hurting real bad but mentally I feel like death warmed over......guess I shouldn't whine - snivel - & moan when I hear what you all are going thru, but where else could I do it??? Attention! I got to hold my brand new great grandson Tues.....geez, it's been so long I forgot how small they are at first....lol Teddi mailto:teddifromok@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2001 Report Share Posted July 6, 2001 Thank goodness she was worth waiting for! So thrilled for you ! Hope this one is a keeper. Keep us up to date. Goodbye Freak! Hugs, Cari >From: catzmeowz@... >Reply-To: OurMyositis >To: OurMyositis >Subject: Re: (unknown) >Date: Fri, 6 Jul 2001 22:35:49 EDT > >I love her I love her I love her !!! Oh sorry, got carried away !!! >NEways..........I cant tell you how refreshing it was to actually get to >sit >ad " talk " to a doctor and be able to ask questions and know the doctor is >listening !!!! My appointment began at 3:30 and I didnt get out of there >until almost 5:00 !!! She asked the usual 1000 questions and when it came >to >the " You arent too fond of Dr. Sheikh? " , I could only answer " Next question >please !!! " She laughed as he isnt her most favorite person either and >understood where I was coming from. That made me feel good !!! She did >labs >and scheduled me for a bone density test this coming Tuesday. She couldnt >believe that Freak had not sent me for one before now but that is just >typical for him as you all know. She is requesting all my prior records >from >all the doctors Ive seen and wants to see me again the 1st of August. I >told >her how much I despise the prednisone and she said that in her opinion, I >should be back on the methotrextate (at a higher dose than Freak had me on) >and that it can work with other drugs besides prednisone (which we will >discuss next month). She also didnt agree with Freak regarding the >exercise >regime. She said that in her opinion, there is no reason that I cant >resume >my power walks as long as Im not flaring. Made my day as this tail end >keeps >getting wider by the day !!! I almost died when I got on those scales at >her >office. I havent weighed this much in my life (including at 9 months >pregnant) !!!! Something just has to give and fast !!! I think I may just >get a giant chip clip and place it right over my lips (as I finish the >remaining Steak and Shake orange freeze that I had for dinner) !!!!! The >best of weekends to all and to all a good night !!!!! > >My cats knead me !!!! > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 6, 2001 Report Share Posted July 6, 2001 Great grandson! Congratulations Teddi. How sweet. I just love the smell of a baby, don't you? Hugs, Cari >From: TeddiFromOK@... >Reply-To: OurMyositis >To: OurMyositis >Subject: Re: (unknown) >Date: Fri, 6 Jul 2001 22:11:25 -0500 (CDT) > >Vicki.....send me your storm....it is soooo dry >here......you would think that would lower the >humidity.....NOT.......our official temp in OKC >was 97 but know it was in the 100's other >places in the state and probably in OKC just >not at the airport. >I overdid last week so am back to square one >again.....not hurting real bad but mentally I >feel like death warmed over......guess I >shouldn't whine - snivel - & moan when I hear >what you all are going thru, but where else >could I do it??? >Attention! I got to hold my brand new great >grandson Tues.....geez, it's been so long I >forgot how small they are at first....lol > > >Teddi >mailto:teddifromok@... > > > > > > > > > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2001 Report Share Posted July 7, 2001 I know what you both mean.... I live in fear at the dinner table when someone asks me to " pass the potatoes " ... there's no way I can pass anyone anything but the salt and pepper! :-) Annette Re: (unknown) Vicki, I know exactly what you mean about not being able to hold unto things. I let go of something my son handed me one day and he got mad at me for not holding on. I tried to explain that my hand hurt so bad that I had to let go, but of course he still didn't understand. I don't know why he got so upset because I didn't break anything, oh well, one of those things. I often drop things while I am cooking and the boys are always teasing me for throwing things in the kitchen. Gentle hugs, Fern Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2001 Report Share Posted July 7, 2001 Hi , I'm so happy to hear that you've finally met a doctor who LISTENS and WORKS for you. Let's hope she can come up with some workable solutions for you. Annette -----Original Message-----From: catzmeowz@... Sent: Friday, July 06, 2001 10:36 PMTo: OurMyositis Subject: Re: (unknown)I love her I love her I love her !!! Oh sorry, got carried away !!! NEways..........I cant tell you how refreshing it was to actually get to sit ad "talk" to a doctor and be able to ask questions and know the doctor is listening !!!! My appointment began at 3:30 and I didnt get out of there until almost 5:00 !!! She asked the usual 1000 questions and when it came to the "You arent too fond of Dr. Sheikh?", I could only answer "Next question please !!!" She laughed as he isnt her most favorite person either and understood where I was coming from. That made me feel good !!! She did labs and scheduled me for a bone density test this coming Tuesday. She couldnt believe that Freak had not sent me for one before now but that is just typical for him as you all know. She is requesting all my prior records from all the doctors Ive seen and wants to see me again the 1st of August. I told her how much I despise the prednisone and she said that in her opinion, I should be back on the methotrextate (at a higher dose than Freak had me on) and that it can work with other drugs besides prednisone (which we will discuss next month). She also didnt agree with Freak regarding the exercise regime. She said that in her opinion, there is no reason that I cant resume my power walks as long as Im not flaring. Made my day as this tail end keeps getting wider by the day !!! I almost died when I got on those scales at her office. I havent weighed this much in my life (including at 9 months pregnant) !!!! Something just has to give and fast !!! I think I may just get a giant chip clip and place it right over my lips (as I finish the remaining Steak and Shake orange freeze that I had for dinner) !!!!! The best of weekends to all and to all a good night !!!!! My cats knead me !!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2001 Report Share Posted July 7, 2001 Congrats on finally dropping Dr. Freak! It's great that you have a new Dr. you feel you can count on. My favorite rhuemy just sent me a letter that he is retiring. I am sad. The new one I have is alright, but I much prefer the older, more experienced one. Anyway, I am very happy for you !!!! D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2001 Report Share Posted July 7, 2001 Vicki: Surprised you don't remember this, we all had a whole week long chat about hand pain over the holidays (December). A lot of people get that weakness early especially, because we all use our hands so much. I know I get the worst of it while working and while cooking. I couldn't bake over the holidays because I couldn't mix dough, my hands would claw up and be unusable. It was excruciating pain. I am taking 5mg of the pred now and feel alright, but still weak and tired a lot. No outward signs of flare, but I suspect one is coming. Hope everyone has a pain free day! D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2001 Report Share Posted July 30, 2001 Vicki, You've mentioned before about the " buffalo hump " ... is it the same as what we used to call the " dowager's hump " ? If so, I've got one but I thought it was just old age creeping on. Annette (unknown) Good Morning Everyone..... Your welcome Ann in regards to the blood sugar article.... After looking at that chart your 41 was very low.... Ann, refresh my poor memory... what is it that you have? I can remember my days with the lovely moon face.... I still have the buffalo hump...not as bad but it's still there. Hope you have a great day... Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2001 Report Share Posted July 30, 2001 Hi Annette... You're right, it would be the same thing. I remember my grandmother talking about it also. But, the Prednisone makes it feel more like a large pocket of water. Mine is getting better because it use to be HUGE. It's gone down about 2 " .... I have about an 1 " more to go before my lower neck is normal again.. Before you went on Prednisone did you have one? Take care, Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2001 Report Share Posted July 30, 2001 Vicki, I don't really remember if I had one before DM. I always thought it was because of osteoporosis. It's not a good thing, is it? Ruins whatever posture I used to have. Oh, well...complain, complain, complain, right? :-) Annette RE: (unknown) Hi Annette... You're right, it would be the same thing. I remember my grandmother talking about it also. But, the Prednisone makes it feel more like a large pocket of water. Mine is getting better because it use to be HUGE. It's gone down about 2 " .... I have about an 1 " more to go before my lower neck is normal again.. Before you went on Prednisone did you have one? Take care, Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2001 Report Share Posted July 30, 2001 Hi Annette.... It does make for a very disturbing view from the side. I can't wear any round neck tee shirts because it just makes the hump look bigger. Don't you just love this new type of body we have???? NOT!! LOL Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2001 Report Share Posted July 31, 2001 , I read somewhere that people with arthritis-related autoimmune diseases are often allergic to Sulfa drugs. I broke out in hives to beat the band (that was when I was 16!)..I haven't had any (obviously!) since!!! Ann-MarieGet your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2001 Report Share Posted July 31, 2001 Hi , Advil seems to help me some. Can't take prescription pain pills, so I just make do with the Advil. Sometimes take three at once, although I've heard that shouldn't be done. Annette (unknown) Hey Vicki- I'm happy to find that I DO have at least SOME interest in those matters left!!!! My best friend and I took a bunch of pix with her camera. She has yet to send them to me. I had put foot padding and bunion pads on my feet which helped with the shoes, and didn't walk around too awfully much. I,too, never wear heels. My slippers are my favs. I will for sure send you guys a pix or two- I tried to do that some time ago but could not for the life of me make it work. Thanks for the Celebrex vs Vioxx post. I have tried Celebrex, and didnt realize it takes longer to work than Vioxx. Aside from having a terrible, obvious reaction, how does one know for sure if one has an allergy to sulfa??? I'd really like to know. Can some tummy troubles be any indication? A friend of mine with fibro was just put on 2 different meds by a new doctor she has seen, a fibro expert. One of the drugs is normally used for epilepsy, seizures and the other is normally used for narcolepsy, or extreme drowsiness during the day. He told her he has about 400 patients on this combo, and it helps them a lot with energy and sleeping better at night. I'll have to get the names again from her, but I did look them up. I havent heard from her as to how it's working yet, but should soon. I need something badly myself. I may try those kidney bean things as well.... also, can anyone tell me what I can take for pain occassionally that will NOT upset my stomach? Can't take naproxen, I stay away from ibuprofen now. Can one take tylenol along with Vioxx or is there anything else out there? I'm back on the glucosamine and other junk so am hoping it helps. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2001 Report Share Posted July 31, 2001 ... I've also found the more I move around the worse I feel. I tried walking every evening but after the second night I was dead and couldn't do it another time. You would think that if you do something every day, twice a day that it would be easy...right?....NOT! I feed every day an it's hard as heck sometimes to get down there. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2001 Report Share Posted August 3, 2001 Hi Fern.... good to hear you're having a great time. Look forward to when you get back and we can get the whole scoop. I read about the beauty of NH and where lives... wow, don't you guys like dirt, dead bushes, dead grass, little water, little rain and struggling to make anything grow? (why am I here?) Have a good day... Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2001 Report Share Posted August 11, 2001 ... I do hope you start to feel better soon. I hear you about the no rain. Our last little spurt was wonderful and I could use that and then some around here. I'm looking out the front window and keep telling myself I need more trees. ..lOL Have a great day. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2001 Report Share Posted August 11, 2001 Normal is what we hoped for. Normal is good! We pray for normal. Hugs, Cari >From: gide672@... >Reply-To: OurMyositis >To: OurMyositis >Subject: (unknown) >Date: Sat, 11 Aug 2001 16:08:07 -0000 > >Hi all- > Just a short note. Things sound pretty normal so far for , >Cari. Thumbs up! Teddi, I hope the MDA can take care of you and you >get a break from all this insurance mess one of these days soon. > It's great you guys who are going to the MAA convention will be >able to spend time together and have some fun! Wish I could join you. >Here's hoping y'all have safe trips and smooth sailing and that you >feel well during, before, and after! > For some reason I had a fairly high temp. last night and felt >quite uncomfortable. This morning my temp is below normal so far but >I feel sick. Discouraged. Have so much to do, but am not up to it >today. My husband and my son went to visit son University in >upper NYS and stayed overnight. Wish I could have gone, but had to >stay here to care for animals. Probably would have felt lousy anyway. >Have a good weekend !!!! PS- Here at my house we got NO rain >yesterday- very depressing > > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 , If you are running out of steam and having the shakes after walking, then you are going to fast and too far. Back off and try less or go every other day to give your body time to recuperate from the exercise. Not to take a thing away from this wonderful group, but you might want to consider joining a fibro group. This might help you greatly understand what you are just learning about and to answer a lot of your questions. I guess you know I run a fibro group. If you are interested, it is fibro-thrive Gentle hugs, Fern Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 HI :-) Ah, rest....what is that!!?? LOL See.....I am looking at all that I am NOT doing right now, and seeing what I AM doing as resting!! I really have cut so much out, but call it obstinance and being stubborn but there are just some things that I refuse to give up. Well.....atleast until I don't have the option I guess. I really don't know where I draw the line to be honest. What I FEEL is that the more I don't move and use what I have, the more I lose.....and yet I KNOW from my reading and talking with you all, that I could actually be doing more damage.....so I am a confused puppy right now. Its not making sense. What I have to go on for me personally is that when I was in the hospital the first time, I walked the halls incessently because I just could not lay in the bed for more than the absolute minimum. When I left the hospital, walking distances was something I could still do quite well. I was having trouble mainly with things that required lifting my legs (steps, getting into the car, putting my pants on...yes, this is comical now days....LOL). I was maintaining it at this level for the week or so I was home. Then I went back in for the heart stuff and, in part because it was the first I didn't really feel good (I really had not felt that bad during all of this believe it or not), and in part because they had me on bedrest, and in part because they were giving me things that were keeping me somewhat subdued, I laid there for the three days other than going potty. I came out doing half of what I had been able to before. So there is part of me that is afraid to stop moving and stop doing because I might lose the option if I do. I don't honestly know if I am doing more harm than good and I have no clue where the line is between doing too much and just enough to maintain the ability. UGH!! Mom is helping a ton as she is driving me everywhere right now and is there if I need her. I CAN drive, just not any real distance and I don't feel 100% steady with it. Requires alot of keeping my arms up which is difficult now, and its not long before my legs start feeling like noodles pushing on the gas. I am managing the short trip alone, but depending on mom for the big driving (and in Dallas thats a bit) and really any driving where the kids are in the car. Its one thing to be alone and find I cannot drive anymore, but another to have the kids with me if that were to happen. So just playing it safe right now. Thanks a ton for the feedback on the potassium and Calcium. I am already taking the Potassium and will get on the docs to give me a script for the Calcium this next week (will give me an excuse to call and nonchalantly ask how my blood work looked and if he found anything interesting on my biopsy slides...LOL....little do they (the docs) know I ALWAYS have an ulterior motive<grin>). I will get the cardiologist set up this next week and should hear on the MRI this week too. I'll keep you all posted on the status of all that. Kinda kicking myself now that I did not get the MRI done they wanted a couple of years ago, just so they could have compared, but ah well...ain't hindsight grand!!! I promise to be careful and to keep you all updated....means a ton to me to have you all here. BIG hugs, gide672@... wrote: Hi , You NEED TO REST- REST REST REST REST REST. I'm serious, even with the Pred buzz, take it easy!! I'm a good one to talk, since my kids don't have all the needs that yours do-- hope your mother can keep helping you out. I don't know about your blood tests- or what exactly they mean. I think a potassuium supplement, especially if indicated by the doctor, would be worthwhile. Also the calcium supplemts- calcinosis seems to be more of a problem with young people who have juvenile dermatomyositis, and most PM patients take calcium. I hope you get to the cardiologist first(soon) and get that brain MRI. Those things would need to be looked at carefully first, I'd think. Please be careful and keep letting us know what is going on. You're in my thoughts and prayers. Vicki, I had my walk and didnt go as far It was pretty hard and I again REALLY ran out of steam. couldnt keep up with my daughter. Didn 't feel good. I did fix an easy supper and my arms and legs were very shaky. Been pretty much sitting the rest of the evening, kind of useless. Not in tons of pain at the moment, but am and will take the Vioxx. I don't think I will walk tomorrow Everyone have a good night--- <3 Quote Link to comment Share on other sites More sharing options...
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