Guest guest Posted July 8, 2002 Report Share Posted July 8, 2002 hi, i know how you feel. i just wrote to my dr today about how i used to be in the marching band and would always participate in march of dimes 17 mile walkathons in high school. i'm 42 now. the last couple years my dog and i would walk at least a mile 3 times a day. now she is lucky if she gets a couple blocks. usually once, but sometimes twice a day. i can't even be outside more than 1/2 hour in this heat. i actually took a nap today. don't know when was the last time i've done that. my head just felt so wierd i had to lay down. i am also having a rough time with my feet and ankles. i had tarsal tunnel surgeries last summer. i can't walk or stand for a long time anymore. even just going to a big store like walmart wears me out. i think i'd better put my compression socks on and take her for a little walk now. i feel guilty!!! kathy in il Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2002 Report Share Posted July 9, 2002 << The Mobic doesn't seem to do anything at all and my other med's are just annoying. >> Susie, I take Mobic and don’t feel like it does a thing, either. My doctor has enrolled me in a 3 month study of Mobic. I either get 7.5 mg, 15 mg, or 22.5 mg. I’ll let you know it seems to work any better at a higher dosage (if I get the higher dosage, that is). I’m on 7.5 mg now. I don’t like paying $40 a month for something that makes no difference if I skip a day or two (and isn’t a DMARD). Hugs, Carol [ ] Re: So Sleepy Your Getting Sleepy, So Sleepy... I know that it's not something that you should be ashamed of, but I can't help myself. I feel so guilty when I find that if I don't lay down and sleep, I'm going to fall down. I've tried the Celebrex to, no response to this what so ever. I'm not sure that anything that I'm taking is working at all. The Mobic doesn't seem to do anything at all and my other med's are just annoying. I have an appoitment with my doctor this coming Thursday and I'm going to ask if there is anything else that he can do. My pain is sometimes unbareable in my feet, ankles, wrists and fingers. Keep the sprits up there....and God Bless all of You! Susie in MN > Sheree, > I get relief from Vioxx. Celebrex didn¹t help very much. I hope the > Remicade works for you. > I know how it is to be to tired to do the simple things in life. You will > learn to enjoy your good day, and rest when your body tells you. The mind > is a very powerful thing, and if you think you will be in a wheelchair, your > chances may be higher that you will be. When I was in my 20¹s my first > rheumy told me I¹d be in a wheelchair before I was 30. I got so mad at him, > I found a new doc, but also in my mind I fought the idea that I¹d ever be in > a wheelchair! I¹m 47 and still walking on my own two painful feet and > intend to stay that way for as long as the good Lord allows me to be. I > know if I get in that chair, my muscles will get weaker and I won¹t get out. > To survive rheumatic diseases, you have to be a fighter. You can¹t let this > disease get the best of you. You WILL find the right meds and you WILL live > life to the best of your ability. You¹ll also have days when the road seems > to tough. I hope these tough days are fewer and far between with Remicade. > Hugs, > a > > > > Hi, > > I'm fairly new too. I'm on Methotrexate too. I've tried Celebrex and Vioxx, > > but neither helps too much. Have you tried those? Last week, I took my first > > Remicade treatment. Hope it works. > > It's awful to be too tired to shop, travel, etc. When your feet and ankles > > hurt a lot, it makes you depressed....all I think about is ending up in a > > wheelchair. > > Sheree > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2002 Report Share Posted July 9, 2002 Well, it's supposed to be the best available right now. It's given intravenously over several hours (outpatient in a hospital), and I've heard it's expensive. My HMO approved the first 2 doses and we have to get approval for more. Although that's a pain, at least they are letting me try it. I'm a registered nurse and pretty persistent about that whole insurance stuff. Remicade is supposed to reduce pain, fatigue and joint deformity. Just exactly what we all need. Let me know what your doctor says. Be informed and persistent when you see your rheumatologist. Best wishes. Let me know... Sheree Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2002 Report Share Posted July 9, 2002 << I'm glad that I found all of you. I do feel so alone and can't get the friends that I have to understand what is happening to me and what it does to me. I'm glad that I can come here, and people know what I'm going through.>> We're glad you found us, too! I certainly know how you feel. You can only share with family or friends so long, then their eyes start to glaze over from disinterest. They really just can't relate to your pain anyway. It's so nice to have a group of friends that can relate to your struggles. As for the sleepiness, I certainly get that also. My stepsons were just here from Utah and I was so tired by late afternoon I just went in the bedroom and watched TV. I didn't want to seem antisocial, but I just couldn 't move another minute. The bed is the only place in the house where my body is reasonably comfortable. I explained to the boys and they were fine with it. I felt like they must be thinking how lazy I've become. It really just gave them more one-on-one time with their Dad. I've read that some of the medications help with fatigue, but so far my Plaquenil and Methotrexate haven't done the job on that account, although I' ve only been on them for 5 months. Hope you have an energetic day! Hugs, Carol [ ] Re: So Sleepy , Thank you so much. I know that the sleepyness is all part of RA and I'm learning to accept it. Just wish that the sleepyness would go away until winter. I'm not able to work in my garden at all this year. I miss not being outside and taking walks with my dogs. I guess I feel like I'm really letting them down. They're Alaskan Malamutes and need the walks. Wish my feet didn't hurt as much as they do. I'm glad that I found all of you. I do feel so alone and can't get the friends that I have to understand what is happening to me and what it does to me. I'm glad that I can come here, and people know what I'm going through. Thanks So Much, Susie in MN > >, I can remember in the first year that I was dx with Ra, all I > seemed to do is sleep. My kids were still in high school and we > always traveled to all there games (from 1/2 hr to 3 1/2 hrs.), I > would sleep all the way there and all the way back. I was so tired I > didn't get much of anything done at home and to tired to care. > > I have had RA for 15 years and still have to watch the fatique, > having trouble with that now because I don't know when to quit or I > guess I feel guilty if I do quit. (I was raised not to be a quitter > and that is not always a benefit) > > I have tried DMARD they have out there and Methotrexate has worked > the best for me (27 mg.a wk.), I also take Lodine XL 500 mg twice a > day and folic acid. > > They do have a lot of meds out there and some are getting great > results. > > Like they said the first year seems to be the worse, and all the meds > take a little time to work. > > Hope you are feeling better soon. They say to listen to your body it > will tell you if you need rest. > > in WA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2002 Report Share Posted July 9, 2002 Hi kathy..I have two dogs that I can't walk anymore as they are quite large and my hands can't manage not to mention my feet. I also feel bad about it but they are seniors so I'm lucky in the respect that they don't really want to do too much anymore anyway. I love dogs and have owned them all my life so I am not happy about the idea of living without one after mine are gone which I hope is a long time from now. Some people say that small dogs are easier to care for but one of the main problems I have with that is that you'd still need to get them outside and then there's house breaking and basically all the things you do for them that require physical effort. That's the part that scares me.. some days I have a really hard time just moving about so I don't know what to think. I'd hate to commit to a new dog and find myself unable to care for him/her without putting myself into pain and fatigue. I believe that our dogs understand that we have changed and are still far happier with us than without us so don't feel guilty about the change in walking schedules. I'm sure they forgive you :-) Take care marrielle Re: [ ] Re: So Sleepy > i'm 42 now. the last couple years my dog and i would walk at least a mile 3 times a day. now she is lucky if she gets a couple blocks. usually once, but sometimes twice a day. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2002 Report Share Posted July 11, 2002 HI i just got some compression stockings....paid 29.00 canadian..they are very tight fitting stockings used to keep the circulation going....i wore them during the day time when i was doing errands and the legs felt incredibly good...i got the panty hose type...although i am 5'9' and weight 148 i got the largest but they cut my waist off which hurt...so i would get the stockings next time and not the full length panty hose..the first time i put them on coz they were so tight i struggled but i have to admit they were pretty awesome and my legs did not get as fatigued and drained of blood flow...i think their primary use is for those with deep vein thromobosis...and after a knee replacement...or so my sister said..the other article on knee replacement just sent to the group really worries me as she is going for her second one....eesh to the article goodness... some stockings cost 150.00 as the ones my sister got coz they were toeless ones for sandals...so there are all kinds...there are all athletic socks that come to the knees that are compression socks and also for the shoulders..(not sure how that works)) they did make a difference but did not like my gut being cut off and i am not overweight but my legs really did not feel as drained....they look like the clear nylon ones...no one could tell they were compression i would send a link but could not find one at the time...i got mine at shoppers drug mart in canada....and cannot recall the name of them.........(knew i should have kept the box...i have really long nails and i put a run in them but the did not run like a run...they just sort of ran through a layer a bit... does this help? sam [ ] Re: So Sleepy > Hi Kathy, may I ask what compression socks are? > > Hugs > June > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2002 Report Share Posted July 11, 2002 sorry i didn't answer sooner. mine are open toed. they kinda look like nylons, but much tighter like an ace bandage. very tight and give me some more support. kathy in il Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2002 Report Share Posted July 11, 2002 i got mine from my podiatrist, the are only my feet and ankles. i think the insurance was billed 50 a piece. kathy in il Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2002 Report Share Posted July 11, 2002 Sorry for jumping in here on this thread but I wanted to add that I use support stockings which may be different from the compression stockings I am reading about. Mine are available in the hoisery dept. of major stores and are a little higher in price than the average but not by much. I have an auto immune type of vasculitis and I find the support hoisery really helps. marrielle [ ] Re: So Sleepy >Hi Kathy, may I ask what compression socks are? Hugs June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2002 Report Share Posted July 13, 2002 Have any of you used Remicade?? The IV infusions?? My sister in law has had 2 already and all she did today was sleep after. Is this common?? I looked it up and it says that fatigue is a common side effect. Have any of you experienced severe fatigue with Remicade??? thanks Colleen >From: " marrielle " <truthfull@...> >Reply- >< > >Subject: Re: [ ] Re: So Sleepy >Date: Thu, 11 Jul 2002 10:26:58 -0400 > >Sorry for jumping in here on this thread but I wanted to add that I use >support stockings which may be different from the compression stockings I >am reading about. Mine are available in the hoisery dept. of major stores >and are a little higher in price than the average but not by much. I have >an auto immune type of vasculitis and I find the support hoisery really >helps. >marrielle > [ ] Re: So Sleepy > > >Hi Kathy, may I ask what compression socks are? > Hugs > June > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2002 Report Share Posted July 13, 2002 Colleen, I am in a Remicade trial. I have a 30%chance of getting the real thing so far or I have been getting a placebo or a 3% solution. I usually dont see any drastic changes so I figure I am on the placebo or the lower 3%solution. I do sleep for several hours after I get the infusion...so maybe I am getting the lower dose. Next time I will know for sure as I will get the real thing from then on. Judy in az 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.