Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 I have been having a terrible time with very severe chest pain. My PCP told me that the chest is just full of cartilage from the sternum outward. He and my rheumy think it is RP related. It sure acted like a flare. Hurt like crazy for about three weeks, then subsided when I doubled my prednisone. They did an ECG which was normal, and I am waiting for results of e-rays on the chest and trachea. Did your doctors try raising your prednisone just to see if that makes a difference in your chest? Hope you get to feeling better soon. If we are experiencing the same kind of pain it is truly terrible. Take care, squeek --- Lee27a@... wrote: > I had such bad pains in my heart that I went to ER > today. I was there for 8 > hours. > I called my Cardiologist early this morning and he > told me to get there, he > wanted to have me monitered and get a cat scan of my > chest. They performed > all of the tests and I had to get morphine because > the pain was so bad. The > doctor thinks it is the costochondritis that is > causing all of the pain. > Please. let me know if the RP can cause this much > pain in the sternum area! > It is a very bad pain and have any of you > experienced this. > > > Thanks, Sharon > > > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2002 Report Share Posted May 30, 2002 Sharon I too was in hosp. thought i was having a heart attach. Even had angioplasty done. this has happened two times to me. It was a rib flare that felt like a horse had kick me and was still there. hang in there, this too shall pass dawn Lee27a@... wrote: I had such bad pains in my heart that I went to ER today. I was there for 8 hours. I called my Cardiologist early this morning and he told me to get there, he wanted to have me monitered and get a cat scan of my chest. They performed all of the tests and I had to get morphine because the pain was so bad. The doctor thinks it is the costochondritis that is causing all of the pain. Please. let me know if the RP can cause this much pain in the sternum area! It is a very bad pain and have any of you experienced this. Thanks, Sharon DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2002 Report Share Posted June 3, 2002 Sorry about your ear! I don't get the noises that you are describing, so don't know what that could be. My rheumy has give me permission to raise my pred when I know that I am flaring. In fact he counseled me to be bold when raising it. (He knows how much I hate pills!) Speaking only for myself, I would go back to 5 mg per day for at least a week and see what happens. If you are not comfortable with increasing on your own, by all means, call your doctor this morning. Hope you get better soon. Love, squeek --- Lee27a@... wrote: > I was having a very hard time sleeping last night. > My left ear (again) was > burning and very painful. It hasn't blown up (yet) > but it has strange noises > in it. The noises started yesterday but I tried to > ignore it because the > pain was mostly in my left side of my sternum. This > is still going on from > when I was in ER all day Thursday. Now, my left ear > is burning and hot to > the touch. I am all the way down to 2 and a half > milligrams of pred every > other day. I have been going down for a long time > but I don't think this is > working. Do any of you hear noises in the ear that > is burning and painful? > Should I go up on my pred? > > > Thanks and Love, Sharon > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2002 Report Share Posted July 3, 2002 Hi Sharon, So sorry that you are having such a rough time of it right now. This is the right place to cry and scream though! Just wanted to let you know that I will continue to pray for you. Love, squeek --- Lee27a@... wrote: > Hi it's me, Sharon. I needed to drop in and > complain about my problems I > have been having since my surgery 2 weeks ago today. > I had surgery to repair > the cartlidge in the right side of my nose and they > took the cartlidge out of > the right ear " good ear. " > They repaired cartlige all over my face that needed > to be repaired, I am kind > of cut up. I am in such despair as I have started > another flair in my left > ear only the prednisone is not responding to it. > Also I am so freightened > because I lost about 80% of my sight in my right > eye. The doctor doesn't > know if I will get it back but is treating me with > eye meds too. I ask that > you please Pray for me because I am a wreck. I have > never lost my vision > like this before and went in right away today to see > the doc. In fact, it > was the third eye doc I've seen since my surgery. > Thanks for listening. > > > > Love, Sharon > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2002 Report Share Posted July 10, 2002 Hi Sharon, So sorry to hear that you are having such a rough time right now. Hopefully things will begin to look up really soon. About your MTX questions. Metho is a prednisone sparing drug and if it works for you then you may be able to get off prednisone or at least lower your dose a lot. I was on it and felt wonderful, but the side effects got to be worse than the disease, so I moved on to Imuran (azathioprine) which has been wonderful. No side effects...unless part of my fatigue comes from that. Anyway, trying MTX may be right for you. You sure don't need any more flares while you are trying to recover from your surgery. I'll keep praying for you. Love, squeek --- Lee27a@... wrote: > > Hello Everyone, I just wanted to say that I am still > recovering from my > surgery and it hurts! I also saw a cornea > specialist on Friday because I > can't see very well at all out of my right eye and > this was the third eye doc > I saw since I had my surgery. He told me my eye was > so dry (I have Sjogren's > Syndrome too) that I had lesions on it and he pulled > out the long needle and > closed my tear duct on the bottom--the top ones are > already closed. Boy did > that hurt, oh well it just added more black and blue > to me. He is hoping I > will get some of my vision back. I Pray that I > will!! > I also have a question for you guys. I am in a > flare and the prednisone > isn't taking care of it. The Rheumy wants to start > me on Methotrexate as > soon as I heal up a little bit better. I am so > confused about everything. > My left ear is pounding inside and hurting but the > pred isn't working and I > am very concerned about taking the Methotrexate. > Can anyone tell me what > their experience is on this med? Does this mean you > can get off of the pred > eventually? Thanks for any info that you give me. > I hope everyone is doing > fine. > > > Love, Sharon > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 I'm so glad that you are going to go see the surgeon today. I will continue to pray for you and for your surgeon. Don't ever apologize for whining! This is the exact right place for that. If you don't whine, then I won't feel free to the next time I need some whine-time. Love, squeek Please let us know what you find out. --- Lee27a@... wrote: > > Hey Guys, asking for some extra Prayers. See the > surgeon again today--can't > take the pain and open wounds and this Cipro is > making me sick. I want to > thank everyone who offered me some great advice. I > just want to apologize for > my whining all the time. I just got to get through > this!          >                         Love > and Thanks, Sharon > > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2002 Report Share Posted July 17, 2002 Our Anniversary is August 31st. I feel the same as you shouldn't have a daughter that old or a son that is older. She is 24 and he is 27. ugh! Must have been a good month for marriages! Lots of love Glenda Hey, Glenda, what day in August is your anniversary? Our is the 25th of August and it will be our 39th! That's scary cause I don't think I am old enough tohave been married for that long. Good to see lots ofposts from you this morning!!!! Love, squeek Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2002 Report Share Posted July 18, 2002 Sharon, Good for you for seeing your surgeon, and for getting past the rheumy's witchy nurse. Is he going to put you on the second antibiotic, or wait for the results of your blood work? Gee, I hope you get to feeling better really soon. Love, squeek --- Lee27a@... wrote: > I saw my surgeon yesterday and he looked at the open > wounds again that are > the (pseudomonas) (sp) ones and said that if the > cipro doesn't take care of > the infections--(it doesn't look like it is so far) > that I have to be put in > the hospital on IV antibiotics and also see an > infectious disease doctor. > I called my rheumy this morning and gave him an > update of what was going on, > (since the witch nurse won't give him my messages), > I wait until 7:30 in the > morning when I say it's an emergency and know that > he's on call. Anyway he > told me I should be on 2 antibiotics and he told me > to go to the lab today so > they did a lot of blood cultures and other blood > work. So, we'll see but I > really am in a PMSing mood and can't wait until all > this is over. > > > Love, Sharon > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2002 Report Share Posted July 18, 2002 Yes, the thing with the brochures was a bit of a surprise to me! In fact I was floored and more than a bit angry. Especially the witch at my former doctors office. I asked if I could leave ONE brochure for the doctors to look at and she snapped, " NO, you just have to talk to the office manager and that's it! " Why do people have to be so nasty? It's a bit cooler today where I am, thank heavens. Me and the heat do not get along too well! Thanks for your thoughts and prayers...the same is coming right back at you! Love, squeek --- Lee27a@... wrote: > Hi Squeek, > I hope you start feeling better soon. Isn''t it the > pits to be sick in this > heat! You know what gets me mad? When you > mentioned that you were trying to > pass out the brochures for us RPers and they have > the NERVE to have to look > it first???? They should be THANKFUL for all the > information they could get > for this disease!! Sorry, but when I read this in > your post I got mad. > Now, back to you, feel better soon and keep us > posted. My thoughts and > Prayers will be with you. > > Love, > Sharon > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2002 Report Share Posted July 25, 2002 Of course I am not sorry that I asked! I care, and when I don't hear how someone is then I have to hog some of Glenda's worrying! So sorry about the flare on top on everything else. Is your pain any better at least? I'm doing fine....temples are still swollen so apparently the extra water pill didn't do what it was supposed to do. But, I am trying not to worry about it. I think it's cause I am getting so low on prednisone....maybe. I cut to six mg tomorrow. Wish me luck. Most of all just take care of yourself and get better soon!! Love, squeek --- Lee27a@... wrote: > Hi Squeek, I am having a very hard time with the > infection not clearing up. > I had to go back up on the prednisone because my RP > started acting up in left > ear. Right now I am in a flare and still on cipro. > The doctor wanted me to > go down on the pred so the infection might have a > better chance of healing > but I couldn't do it. It's a catch 22 and I hate > it! Now, aren't you > sorry you asked? LOL But, I do thank you for your > thoughts and Prayers. > I will be Praying for , and all of the > RP members. How are you > doing, Squeek? > > Love, Sharon > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2002 Report Share Posted July 27, 2002 --- Lee27a@... wrote: > I am so happy to hear that is doing so well! > God Bless her and He > is! Thanks for the update, she has been on my mind > so much. My Prayers are > with her and her family. > > > Love, Sharon > Hi Sharon, How are you doing today? Let us know. We are not only worried about you know! Love, squeek ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2002 Report Share Posted July 28, 2002 Thanks Sharon! She will need special prayers on Aug. 1st the day of the umpteenth surgery. I know I have lost count....am sure she hasn't! This group is so special to me and my sister knows you all through me! You take care! Lots of love Glenda Glenda, my thoughts and Prayers are with your dear sister. She has been through so much and I Pray that she receives a miracle from the Lord. You take care of yourself too, my friend. My Prayers are with you too. Love, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2002 Report Share Posted August 1, 2002 Sharon, So glad that we were able to help! So glad your daughter and granddaughter made your day with balloons. How sweet of them! Please let us know what you find out from the rheumy! Lots of love Glenda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2002 Report Share Posted August 3, 2002 Hey Sharon, Please let us know what the culture shows, and how you are doing. Love, squeek --- Lee27a@... wrote: > I had the surgery to close the ducts in my eyes. My > eyes are so dry that a > lot of damage was done, especially to my right eye. > I saw the cornea doc who > just closed the duct on top not too long ago, (the > bottoms are already > closed). The only problem is my eye is constantly > tearing. I come to find > out they can undo the ducts. He told me that > between the RP and Sjogren's > Syndrome etc etc that my eyes are not doing well > especially the right one. > He is waiting for it to heal a little better. I > still have a really > scratchy, irritated surface and I get cornea edema > in that eye. I take > steroid eye drops and use bacitracin ointment in > them every night. So, he > wants to see me again in 3 weeks. My eyes has been > so blurry that I can't > read a large print book with a magnifying glass! > I saw my Rheumy yesterday and he took another > culture from the wounds. He > also was looking at me like he couldn't believe how > swollen everything was. > He said he will start me on the methotrexate or a > very high dose of > prednisone as soon as I heal. I have to take bextra > and pred but I can't > tolerate the bextra. I asked him what to do in case > I start to flare since > I'm on a low dose of pred--he said don't do a > thing--call me first. He's > trying to get the infection healed up first. I did > give him a lot of the RP > literature to put in all of his offices including > University hospital. > I also told him about getting huge black and blue > marks and he said it was > from the pred. Talk to you later. > > Love, > Sharon > > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2002 Report Share Posted August 6, 2002 My energy level has been down for years so don't know if it is from RP, or some of the other rheumatoid diseases that I deal with. I know that some people say Imuran sucks your energy, so that could be it for me also. Do you think maybe this ongoing infection has something to do with your energy being depleted? Take care. Love, squeek --- Lee27a@... wrote: > My energy level went down so much. I was dx withRP > in late March and I just > can't believe how much it takes out of a person. I > am also suffering from > depression but I still always had energy but now I > don't. Does RP also cause > your whole body to hurt? I mean really hurt? > I am still waiting on my culture they did last Thurs > to see if the infection > is still with me. I am still very swollen and full > of pain. Sorry for the > whining, guys. But, Bless you for being here > > > Love, Sharon > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2002 Report Share Posted August 8, 2002 Just a short note to let you know that I am still praying for you, and that I am so sorry that you are still having such a hard time. Let us know if you see the pain management doctor. AND, take good care of yourself. Love, squeek --- Lee27a@... wrote: > Today I saw the surgeon and I was almost in tears. > The pain where the sites > are are very, very painful! My head is very swollen > and healing very slowly. > He injected, into my head, 10 shots of lidocaine > and kenalog. I am using my > pain meds from the surgery still and he thought it > would be a good idea to > see a doctor in pain management. (in the meantime I > can't even hold up my > head from all of the pain). He said between the > infection and the scar > tissue not healing right that it will cause me pain > for a while. (no > kidding, he should only have it)! !!!!!!!! I > actually have 10 holes in my > head from the long needles. Anyway, is anyone > familiar with pain > management?? What does the doctor do there. He > gave me a name of a pain > management doctor but I have NO idea what they do. > Thanks in advance. > > Love, > Sharon > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2002 Report Share Posted August 12, 2002 Just wondering if you have also been diagnosed with fibro? My sister has it really bad and she aches all over like you are describing. Is your infection clearing up? I wish there were something I could do to help you feel better. Love, squeek --- Lee27a@... wrote: > Can soembody explain why I hurt so bad? I want to > be who I used to be. > Today I had to go to the funeral home and get some > paper work done which > should have been done after my father died. > Afterwards, my husband and I > stopped at a store and I started hurting so bad all > over. My back, my legs, > my head. I understand why my head is hurting so > much but my body has been > hurting me whenever I do little things outside the > house. I mean going to > the store and walking around a little bit will make > my body hurt so bad!! > Does anyone experience this? Housework has been out > of the question. It is > the pits. Also depression is hitting big time, > probably because of this. > > > Love, Sharon > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2002 Report Share Posted August 24, 2002 In a message dated 8/24/02 1:21:25 PM Pacific Daylight Time, sisterslk@... writes: << I think my doctor had a great response when I asked him why I was so tired all the time. He looked at me like " DUH " then said it is because I am sick and my body is CONSTANTLY fighting inflammation. When I look at it that way it certainly makes sense. Plus the fact that some of our medications make the fatigue worse. >> Well Squeek, when we look at it that way it all makes sense. LOL We all hate pred but hate going down or off of it too. A no win situation. I know I feel better on it, but hate what it might be doing to my body. I'm lucky that my bones are still okay, but now I do have the pred cataracts. It's no fun coming off the pred. I'm now on 15mg and fighting a rib flare. Hope it goes away soon and i can be back to my 7mg. hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2002 Report Share Posted August 24, 2002 > Another thing that is bothering me is the fatigue > that I have. Is this also > part of RP? > Thanks for listening, > Sharon > I think my doctor had a great response when I asked him why I was so tired all the time. He looked at me like " DUH " then said it is because I am sick and my body is CONSTANTLY fighting inflammation. When I look at it that way it certainly makes sense. Plus the fact that some of our medications make the fatigue worse. Love, squeek ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2002 Report Share Posted August 29, 2002 Sharon, I'm so sorry to hear about Billy. He will be in my prayers along with you. My mother had the same thing and it turned out to be a polyp. They removed it and everything was fine. I know how hard it is to wait and worry. Please know you are both in my thoughts and prayers. If you need anything, remember we are here for you. hugs & prayers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2002 Report Share Posted September 4, 2002 Oh, doesn't it hurt when it is your kids??? I wish mine could understand just a bit better. Hope you are having a great day. Love, squeek --- Lee27a@... wrote: > Liz, I'm sorry that someone was nasty to you, you > certainly don't deserve it! > > My part time boss gets that way with me and > sometimes my kids > It really hurts--especially going down on the pred. > > Take care and I hope you have a better day today. > > Sharon > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2002 Report Share Posted September 6, 2002 Hey, I'm not Heidi, but I'm proud of you anyway! Good for you. Of course I will be praying for Billy, and for you. Love, squeek --- Lee27a@... wrote: > Heidi, you would have been proud of me--I pulled a > Heidi in the doctor's > office. I actually got my husband in for his > surgery this Mon. on the 9th. > They were going to do it on the 16th but that was > too long to wait. He is > having General Anstesia and they are going to do the > biopsy in his > throat-voicebox, which seems to be getting worse. > His voice has changed and > he is very anxious to say the least. He went today > for his preadmission > testing. I have been very anxious too. About him > and about this dumb RP! > It is the pits!! > Would you guys say a Prayer for him that whatever is > in his throat turns out > to be negative? > > Thanks and > Hugs, Sharon > ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2002 Report Share Posted September 6, 2002 --- Lee27a@... wrote: > Oh squeek, I am sending Prayers up for the two of > you. Please keep us > updated on your son. Poor thing. I remember when > my son had his molars > pulled. Not a pretty site. Take care and I am > sending hugs to both of you > along with the Prayers. > > Love, > Sharon > Thanks Sharon! This was all four of the wisdom teeth. They called it a complete bony impaction. The two on the bottom were lying completely sideways, pushing on all that beautiful, expensive orthodontia. Our son was born with a cleft lip, not the palate, and his mouth has had many problems due to that. It really messed up his teeth. This should be the end of it though. Take care! Love, squeek ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2002 Report Share Posted September 24, 2002 Wow Sharon, You have been through alot!!!!!! You hang in there and we will all be praying you Recoupe really fast!!!!! Carol Applin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2002 Report Share Posted September 24, 2002 Oh Sharon, you poor girl. YOu have been through so much. I know this must be hard on you. I wish I could be there to help you out. How strong you are and i admire your determination. YOu know that my prayers are always with you. I will give you a call in a few days and see how things are going. Please take care... hugs Quote Link to comment Share on other sites More sharing options...
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