Guest guest Posted December 28, 2005 Report Share Posted December 28, 2005 Becky- I"m so sorry you're feeling horrible. I remember when the steriods didn't seem to be cutting it anymore and my body began to retain fluid (legs and ankles swelling), he put me on a diruetic....it did help a bit. As for the pain....I just had to rest and many nights I'd cry myself to sleep because I was so mentally, physiclaly and emotionally drained from the pain I was in. I would cover it up because I hate to seem like such a "whiner". Sometimes I'd feel okay enough that I could venture out of the house (even for just a half hour) and then all the sudden I would hit the wall. I just felt like everyone was thinking I was faking. I know I shouldn't feel that way, but I just feel bad I've been so sick for so long and I haven't been the mother or wife I desire to be...I can't!! I am only 31, so I know how you feel. I know this isnt' a cure, but I do feel that it helps at times. Try deep breathing exercises. If you move your leg and it hurts take a deep breath in through your nose for as long as you can and then breathe out thru your mouth for as long as you can....do that 2-4 times or until you start to feel better. I don't know what physically happens when deep breathing, but I do know that it works. Heck, if I can go through natural births with only deep breathing...it's gotta work!! God Bless, Lorri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2005 Report Share Posted December 28, 2005 Becky- I"m so sorry you're feeling horrible. I remember when the steriods didn't seem to be cutting it anymore and my body began to retain fluid (legs and ankles swelling), he put me on a diruetic....it did help a bit. As for the pain....I just had to rest and many nights I'd cry myself to sleep because I was so mentally, physiclaly and emotionally drained from the pain I was in. I would cover it up because I hate to seem like such a "whiner". Sometimes I'd feel okay enough that I could venture out of the house (even for just a half hour) and then all the sudden I would hit the wall. I just felt like everyone was thinking I was faking. I know I shouldn't feel that way, but I just feel bad I've been so sick for so long and I haven't been the mother or wife I desire to be...I can't!! I am only 31, so I know how you feel. I know this isnt' a cure, but I do feel that it helps at times. Try deep breathing exercises. If you move your leg and it hurts take a deep breath in through your nose for as long as you can and then breathe out thru your mouth for as long as you can....do that 2-4 times or until you start to feel better. I don't know what physically happens when deep breathing, but I do know that it works. Heck, if I can go through natural births with only deep breathing...it's gotta work!! God Bless, Lorri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2005 Report Share Posted December 28, 2005 Becky- I"m so sorry you're feeling horrible. I remember when the steriods didn't seem to be cutting it anymore and my body began to retain fluid (legs and ankles swelling), he put me on a diruetic....it did help a bit. As for the pain....I just had to rest and many nights I'd cry myself to sleep because I was so mentally, physiclaly and emotionally drained from the pain I was in. I would cover it up because I hate to seem like such a "whiner". Sometimes I'd feel okay enough that I could venture out of the house (even for just a half hour) and then all the sudden I would hit the wall. I just felt like everyone was thinking I was faking. I know I shouldn't feel that way, but I just feel bad I've been so sick for so long and I haven't been the mother or wife I desire to be...I can't!! I am only 31, so I know how you feel. I know this isnt' a cure, but I do feel that it helps at times. Try deep breathing exercises. If you move your leg and it hurts take a deep breath in through your nose for as long as you can and then breathe out thru your mouth for as long as you can....do that 2-4 times or until you start to feel better. I don't know what physically happens when deep breathing, but I do know that it works. Heck, if I can go through natural births with only deep breathing...it's gotta work!! God Bless, Lorri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2005 Report Share Posted December 28, 2005 Dear Becky, I am so sorry you are in such pain. It is so depressing when the steroids don't even seem to do their magic. I have had bad episodes that limit my walking, but nothing like how you sound. I do really feel for you. Hope you can get some relief soon. My doc has me do a 7 day taper starting at 70 mg of prednisone and decreasing by 10mg a day. The high dose hits it hard and fast, and the quick taper is suppose to minimize the nasty long term side effects of taking prednisone. Good luck, DianeRebekah Woodcraft wrote: hello, had a really bad day today, can not walk or life or do basically anything, the 30mg steriods dont seem to do anything nor the pain killers, off back to the doctors tomorrow, my partner is coming with me as he has had enough of seeing my screaming in pain while trying to get up off the chair, i'm only 30 and cant even go to the toilet, i am so depressed its unbelievable, i have taken my pain killers before my due time tonight as i'm in agony and the red lumps have come up on my arms and red spots aswell, my wrists have swollen up tonight and feel like my bones are going to snap... Any advice that anyone can give me to tell my doctor would be apreciated.. Many thanks.. Becky Yahoo! Photos Ring in the New Year with Photo Calendars. Add photos, events, holidays, whatever. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2005 Report Share Posted December 28, 2005 Dear Becky, I am so sorry you are in such pain. It is so depressing when the steroids don't even seem to do their magic. I have had bad episodes that limit my walking, but nothing like how you sound. I do really feel for you. Hope you can get some relief soon. My doc has me do a 7 day taper starting at 70 mg of prednisone and decreasing by 10mg a day. The high dose hits it hard and fast, and the quick taper is suppose to minimize the nasty long term side effects of taking prednisone. Good luck, DianeRebekah Woodcraft wrote: hello, had a really bad day today, can not walk or life or do basically anything, the 30mg steriods dont seem to do anything nor the pain killers, off back to the doctors tomorrow, my partner is coming with me as he has had enough of seeing my screaming in pain while trying to get up off the chair, i'm only 30 and cant even go to the toilet, i am so depressed its unbelievable, i have taken my pain killers before my due time tonight as i'm in agony and the red lumps have come up on my arms and red spots aswell, my wrists have swollen up tonight and feel like my bones are going to snap... Any advice that anyone can give me to tell my doctor would be apreciated.. Many thanks.. Becky Yahoo! Photos Ring in the New Year with Photo Calendars. Add photos, events, holidays, whatever. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2005 Report Share Posted December 28, 2005 Dear Becky, I am so sorry you are in such pain. It is so depressing when the steroids don't even seem to do their magic. I have had bad episodes that limit my walking, but nothing like how you sound. I do really feel for you. Hope you can get some relief soon. My doc has me do a 7 day taper starting at 70 mg of prednisone and decreasing by 10mg a day. The high dose hits it hard and fast, and the quick taper is suppose to minimize the nasty long term side effects of taking prednisone. Good luck, DianeRebekah Woodcraft wrote: hello, had a really bad day today, can not walk or life or do basically anything, the 30mg steriods dont seem to do anything nor the pain killers, off back to the doctors tomorrow, my partner is coming with me as he has had enough of seeing my screaming in pain while trying to get up off the chair, i'm only 30 and cant even go to the toilet, i am so depressed its unbelievable, i have taken my pain killers before my due time tonight as i'm in agony and the red lumps have come up on my arms and red spots aswell, my wrists have swollen up tonight and feel like my bones are going to snap... Any advice that anyone can give me to tell my doctor would be apreciated.. Many thanks.. Becky Yahoo! Photos Ring in the New Year with Photo Calendars. Add photos, events, holidays, whatever. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2005 Report Share Posted December 28, 2005 I could not get off a toliet or out of a bed and I fell on the floor. Could not uncover myself, could not wipe my own rear,could not cut a biscuit covered in sausage gravey difficulty to lift the fork to my mouth and then when I swallowed it stuck and I pulled it back up and chewed again , swallowed again and each time a little more would go down......I ended up on respirator all of this before prednisone when I was in the hosptial I had three racs of drips 21 or 23 drips. WHen I came home it took me 18 minutes to dress with my clothes thrown on the floor using a gripper stick to dress.........I AM NOT 100% better but I dress in less than 3 minutes now just pull things on.. WATCH FOR signs of blood clots....ask your dr to do an INR . I stil get clots at 2.5 my dr keeps me 3 to 4 to keep me walking and with my knee I don’t always walk....there WILL be better days.........I had trouble getting lower than 27 mg of prednsione and then was added methotrexate, I do take 7.5 mg of blood thinners.......It is hard for me to put up my feet because I think that make me lazy so I just sit till I feel I can walk and walk until I need to sit...there will be better days you just have to wait for them.......they will come. I have had a breast abcess since may and it still isn't healed.my right under arm is ulcerated and getting bigger but I am abt three hours from home and having a nice time....I am currently on 40 mg prednsione and take 6 methotrexate at 2.5 I used to take 10 methotrexate and10 mg or prednsione........maybe really bad day today will be really nice tomorrow.........there is ALWAYS hope. DON'T GIVE up on hope.........keep in touch. you will be in my thoughts and prayers...you are NOT alone in this...sincerely Jan aka burn cant cope hello, had a really bad day today, can not walk or life or do basically anything, the 30mg steriods dont seem to do anything nor the pain killers, off back to the doctors tomorrow, my partner is coming with me as he has had enough of seeing my screaming in pain while trying to get up off the chair, i'm only 30 and cant even go to the toilet, i am so depressed its unbelievable, i have taken my pain killers before my due time tonight as i'm in agony and the red lumps have come up on my arms and red spots aswell, my wrists have swollen up tonight and feel like my bones are going to snap...Any advice that anyone can give me to tell my doctor would be apreciated..Many thanks..Becky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2005 Report Share Posted December 28, 2005 I could not get off a toliet or out of a bed and I fell on the floor. Could not uncover myself, could not wipe my own rear,could not cut a biscuit covered in sausage gravey difficulty to lift the fork to my mouth and then when I swallowed it stuck and I pulled it back up and chewed again , swallowed again and each time a little more would go down......I ended up on respirator all of this before prednisone when I was in the hosptial I had three racs of drips 21 or 23 drips. WHen I came home it took me 18 minutes to dress with my clothes thrown on the floor using a gripper stick to dress.........I AM NOT 100% better but I dress in less than 3 minutes now just pull things on.. WATCH FOR signs of blood clots....ask your dr to do an INR . I stil get clots at 2.5 my dr keeps me 3 to 4 to keep me walking and with my knee I don’t always walk....there WILL be better days.........I had trouble getting lower than 27 mg of prednsione and then was added methotrexate, I do take 7.5 mg of blood thinners.......It is hard for me to put up my feet because I think that make me lazy so I just sit till I feel I can walk and walk until I need to sit...there will be better days you just have to wait for them.......they will come. I have had a breast abcess since may and it still isn't healed.my right under arm is ulcerated and getting bigger but I am abt three hours from home and having a nice time....I am currently on 40 mg prednsione and take 6 methotrexate at 2.5 I used to take 10 methotrexate and10 mg or prednsione........maybe really bad day today will be really nice tomorrow.........there is ALWAYS hope. DON'T GIVE up on hope.........keep in touch. you will be in my thoughts and prayers...you are NOT alone in this...sincerely Jan aka burn cant cope hello, had a really bad day today, can not walk or life or do basically anything, the 30mg steriods dont seem to do anything nor the pain killers, off back to the doctors tomorrow, my partner is coming with me as he has had enough of seeing my screaming in pain while trying to get up off the chair, i'm only 30 and cant even go to the toilet, i am so depressed its unbelievable, i have taken my pain killers before my due time tonight as i'm in agony and the red lumps have come up on my arms and red spots aswell, my wrists have swollen up tonight and feel like my bones are going to snap...Any advice that anyone can give me to tell my doctor would be apreciated..Many thanks..Becky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2005 Report Share Posted December 28, 2005 I could not get off a toliet or out of a bed and I fell on the floor. Could not uncover myself, could not wipe my own rear,could not cut a biscuit covered in sausage gravey difficulty to lift the fork to my mouth and then when I swallowed it stuck and I pulled it back up and chewed again , swallowed again and each time a little more would go down......I ended up on respirator all of this before prednisone when I was in the hosptial I had three racs of drips 21 or 23 drips. WHen I came home it took me 18 minutes to dress with my clothes thrown on the floor using a gripper stick to dress.........I AM NOT 100% better but I dress in less than 3 minutes now just pull things on.. WATCH FOR signs of blood clots....ask your dr to do an INR . I stil get clots at 2.5 my dr keeps me 3 to 4 to keep me walking and with my knee I don’t always walk....there WILL be better days.........I had trouble getting lower than 27 mg of prednsione and then was added methotrexate, I do take 7.5 mg of blood thinners.......It is hard for me to put up my feet because I think that make me lazy so I just sit till I feel I can walk and walk until I need to sit...there will be better days you just have to wait for them.......they will come. I have had a breast abcess since may and it still isn't healed.my right under arm is ulcerated and getting bigger but I am abt three hours from home and having a nice time....I am currently on 40 mg prednsione and take 6 methotrexate at 2.5 I used to take 10 methotrexate and10 mg or prednsione........maybe really bad day today will be really nice tomorrow.........there is ALWAYS hope. DON'T GIVE up on hope.........keep in touch. you will be in my thoughts and prayers...you are NOT alone in this...sincerely Jan aka burn cant cope hello, had a really bad day today, can not walk or life or do basically anything, the 30mg steriods dont seem to do anything nor the pain killers, off back to the doctors tomorrow, my partner is coming with me as he has had enough of seeing my screaming in pain while trying to get up off the chair, i'm only 30 and cant even go to the toilet, i am so depressed its unbelievable, i have taken my pain killers before my due time tonight as i'm in agony and the red lumps have come up on my arms and red spots aswell, my wrists have swollen up tonight and feel like my bones are going to snap...Any advice that anyone can give me to tell my doctor would be apreciated..Many thanks..Becky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2005 Report Share Posted December 29, 2005 becky, i feel your pain. what pain med are you on? i am taking percocet and ultracet and my body has already become immune to it. i'm 34 and feel like 80. good luck and have a long talk with yr docs abt y nothing is working.... take care Q. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2005 Report Share Posted December 29, 2005 yeah it's kind of hard to deal with when you're young and have a child u can't even play with. luckily he's 8 and kinda understands why i don't do much of anything. but still it hurts and the guilt gets at you sometimes, right. Q. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2005 Report Share Posted December 31, 2005 Oh dear Becky, I am so sorry to hear that you're in so much pain. Bless your heart. I too am in a world of pain. I can't remember ever feeling this badly the two times before that I had this rare vascular disease. This time I have the severe swelling in my hands, wrists and fingers. I was thinking it might be RA, but thank God it isn't. My skin feels tight too on my hands, and the skin is so dry. I also had alot of itching in places where this doesn't even affect my skin. I never even knew that this could get on your arms? I saw pictures of it on this site. I thought this was basically found on the lower legs of people? I also have severe eczema flaring right now on my elbow, so that isn't helping either. I hope that you can get your Dr. to listen to you so that you can get some pain relief. If it gets too bad, don't hesitate to go to the ER. I don't know why some Doctors let people suffer in pain the way they do. I know our hospital here will ask you right away what your pain levels are, and they DO address the pain with meds. Some new policy they have there now, that they MUST address pain needs. It's about time! Take care of yourself, and get some rest if you can. I will keep you in my prayers... Gentle Hugs, Lorrie Anne > > hello, had a really bad day today, can not walk or life or do > basically anything, the 30mg steriods dont seem to do anything nor the > pain killers, off back to the doctors tomorrow, my partner is coming > with me as he has had enough of seeing my screaming in pain while > trying to get up off the chair, i'm only 30 and cant even go to the > toilet, i am so depressed its unbelievable, i have taken my pain > killers before my due time tonight as i'm in agony and the red lumps > have come up on my arms and red spots aswell, my wrists have swollen > up tonight and feel like my bones are going to snap... > > Any advice that anyone can give me to tell my doctor would be > apreciated.. > > Many thanks.. > > Becky > 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.