Guest guest Posted August 14, 2002 Report Share Posted August 14, 2002 Hi, Leah, Welcome to the group. Sorry you needed us! I strongly urge you to see a rhuemetologist who is well-versed in PA if you haven'y done so already. I have been at this a few years and even with agressive treatment I have lost some mobility in my left elbow and right wrist. If you read very many postings, you will quickly see that PA can be extremely serious if left untreated. Even with treatment there are no guarantees that there won't be some lasting damage. Take this seriously and look out for your health. Yes, 39 is young, I am 37 and there are many more " posters " who are younger. PA is an equal opportunity malady! Eva in Ar leah wrote:Hi My name is Lea and I was diagnose with PA three month ego. I am reluctant to use any medication because I am only 39 years old. I don't have any skin problems but I have pain and swelling in my fingers and between the toe and the ankle. Does anybody know what happens if you don't treat it does it become worse? I just joined and I am not sure how does this system works. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2002 Report Share Posted August 14, 2002 -hi lea, welocme! sorry to hear about u having pa. i know i am scared not to take my meds. my rhumey has never told me if it would get worse without meds. he has always been unclear of the long term efffect on me. i have ask sevreral times. i am 35 had p for about 10years when the pain kicked in it was very,very bad. i had no choice but to take the meds. i was in my 20's. there were signs in my teens. after a night of two steppin i would always hurt. i only found out what i had about 2 years ago (i think). i have only gotten better in the past month and i think it is from yoga and not the meds. i wish you luck. i could not even mow my yard (not big), it would put me down for three days. if you dont want to take the meds then i say try yoga. do not push yourself with yoga,do wwhat you can and modify what u cant. its all about the breathing. i hope you give it a try.. a good book is THE COMPLETE IDIOT'S GUIDE TO YOGA. written by JOAN BUDILOVSKY AND EVE ADAMSON. the mats are not expensive. good luck...kyle-- In @y..., leah <shteingl@y...> wrote: > Hi My name is Lea and I was diagnose with PA three > month ego. I am reluctant to use any medication > because I am only 39 years old. I don't have any skin > problems but I have pain and swelling in my fingers > and between the toe and the ankle. Does anybody know > what happens if you don't treat it does it become > worse? I just joined and I am not sure how does this > system works. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2002 Report Share Posted August 14, 2002 I too am 39. I ws DX with PA about 2 years ago. You should get treatment now. Don't wait. It hit me like a ton of bricks. I am now out of work for 8 weeks because of a bad flare. Don't be afraid of the side effects of some of the things you will need to take. They only happen in less than 1% of the people. They just have to tell you those things. At least start out with Vioxx or Celebrex, then work your way up as those meds. maybe will not work for you. I am on Azulfidine, Prednisone, Folic Acid, Methotrexate (MTX)shots and Remicade Infusions. THese sound like very harsh drugs, and they are, but my body is handling them well. Everyone is different with the meds., so if one dosen't work try another one. I hope you have a good Rheumy, and that will treat you aggresivly. Please stay in touch with us. You have found the best group on the Internet for this problem we all share. If you ever get down, or just need to vent, we are here to listen and give you advise. Good luck, in Atlanta, GA --- leah <shteingl@...> wrote: > Hi My name is Lea and I was diagnose with PA three > month ego. I am reluctant to use any medication > because I am only 39 years old. I don't have any > skin > problems but I have pain and swelling in my fingers > and between the toe and the ankle. Does anybody > know > what happens if you don't treat it does it become > worse? I just joined and I am not sure how does this > system works. > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2002 Report Share Posted August 15, 2002 In a message dated 08/14/2002 1:39:00 PM Eastern Daylight Time, shteingl@... writes: > Does anybody know > what happens if you don't treat it does it become > worse? Hi Lea - Yes, it can become worse and destroy the joint. Find a rheumy and get on a DMARD - protect your joints! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2006 Report Share Posted September 4, 2006 Hi I'm sorry for the pain you are experiencing. I have multi-level(4) bulging disks and had 2 epidurals on Wednesday on my lower back. I was given a sedative and didn't feel much except when he must have touched my right nerve with the meds and pain shot down my right leg twice. I felt ok right after but that night the headache came and the leg pains. They told me it would be worse before it got better. The next day I seemed ok, but i think it was because the meds were still in me. The next day, up until Sunday have been the worse. More leg pain and a headche. Today, has been a better, I walked about a mile, but I was able to do that before the epidurals. I will probably call his office this week. he wants me back in 2-4 weeks but if I feel there is little if any improvement, I don't see why I'd go back. Your situation sounds like you had a harder time than me. Didn't they give you a sedative and numb the area? It shouldn't have hurt that much and your after effects, do you still feel them? I would call tomorrow. I've heard of some of these things. Did they tell you what to expect? Barbara cpichon1 <cpichon1@...> wrote: Hi everyone, I'm Chris. This is my first posting to the group. I'm 27 and have been suffering from a L5-S1 disc herniation since about 2002 and just recently, a T4 and T5 herniation was found on MRI a couple weeks ago. I've have seen quite a few doctors in the past and tried a lot conservative therapies, but It seems like the pain is getting a lot worse and it's really making life hard. I just had an epidural steroid injection in my lower back on Friday witch was very painful to have done and put me in tears. The pain is much worse right now. Lots of numb, burning and weakness feelings in both legs and some pain in my arms. I'm looking forward with talking with everyone that suffers from these horrible conditions and to exchange ideas and advise to help each other manange the pain. Thanks! Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2006 Report Share Posted September 4, 2006 Hi Barbara, Thanks for the support. Yeah I'm sorry for you too and everyone that suffers from this problem. I went to an anesthesiology group at a pain clinic that specializes in chronic back pain. The staff was very friendly, informative, made me feel comfortable with a sedative and did numb the area. I did not feel the needle go in, but they must have hit that same nerve as you are describing since the pain was so intense even with the sedative. I did not have the headache but I've heard about that side effect. They said it would be a little worse after, so I was expecting moderate pain, but I did not think it would just keep intensifying each day. I already take vicodin and ultram but now those meds don't even really take the edge off anymore. I'm happy to see your at least up walking again sort of I've been laying in bed since Friday with this computer trying to look up stuff about the pain. Every time I get up, I pretty much fall to my knees in pain. My next appt is in two weeks for my second injection so we'll see how that one goes. I hope it's better then this last one I had. The doctor said if I get no relief from the second one, it's pretty safe to say the third won't do anything and we would look into surgical options. Good luck with your next epidural! keep me informed and I'll do the same. Chris > Hi everyone, > > I'm Chris. This is my first posting to the group. I'm 27 and have > been suffering from a L5-S1 disc herniation since about 2002 and just > recently, a T4 and T5 herniation was found on MRI a couple weeks ago. > I've have seen quite a few doctors in the past and tried a lot > conservative therapies, but It seems like the pain is getting a lot > worse and it's really making life hard. I just had an epidural steroid > injection in my lower back on Friday witch was very painful to have > done and put me in tears. The pain is much worse right now. Lots of > numb, burning and weakness feelings in both legs and some pain in my > arms. I'm looking forward with talking with everyone that suffers from > these horrible conditions and to exchange ideas and advise to help each > other manange the pain. > > Thanks! > > Chris > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2006 Report Share Posted September 4, 2006 Hi I am really sorry to hear of your pain. Are you going to call them tomorrow? Falling down in pain and the pain you are describing sounds extreme. How long did they tell you this would last? How long before you feel the any relief? I can probably say I'm getting closer to where I was before the epidural, so what is the point of getting them for me? Unless, miraculously I feel so much better, I don't know why I'd go back for another. Do you know if they always give 2 in a row? He also had me scheduled for another one in 2-4 weeks. I had 2 , one on the right side, the other the left. Even if I feel like I did before the shots, I don't want to go through those first 5 days of feeling sick, just to hope I feel a little better, it would have to be that I felt a lot better. I'll see how I feel tomorrow. I hope you feel better. It must be awful if the pain meds aren't helping. I pray for a miracle for you. Let me know how you're doing. Barbara <cpichon1@...> wrote: Hi Barbara, Thanks for the support. Yeah I'm sorry for you too and everyone that suffers from this problem. I went to an anesthesiology group at a pain clinic that specializes in chronic back pain. The staff was very friendly, informative, made me feel comfortable with a sedative and did numb the area. I did not feel the needle go in, but they must have hit that same nerve as you are describing since the pain was so intense even with the sedative. I did not have the headache but I've heard about that side effect. They said it would be a little worse after, so I was expecting moderate pain, but I did not think it would just keep intensifying each day. I already take vicodin and ultram but now those meds don't even really take the edge off anymore. I'm happy to see your at least up walking again sort of I've been laying in bed since Friday with this computer trying to look up stuff about the pain. Every time I get up, I pretty much fall to my knees in pain. My next appt is in two weeks for my second injection so we'll see how that one goes. I hope it's better then this last one I had. The doctor said if I get no relief from the second one, it's pretty safe to say the third won't do anything and we would look into surgical options. Good luck with your next epidural! keep me informed and I'll do the same. Chris > Hi everyone, > > I'm Chris. This is my first posting to the group. I'm 27 and have > been suffering from a L5-S1 disc herniation since about 2002 and just > recently, a T4 and T5 herniation was found on MRI a couple weeks ago. > I've have seen quite a few doctors in the past and tried a lot > conservative therapies, but It seems like the pain is getting a lot > worse and it's really making life hard. I just had an epidural steroid > injection in my lower back on Friday witch was very painful to have > done and put me in tears. The pain is much worse right now. Lots of > numb, burning and weakness feelings in both legs and some pain in my > arms. I'm looking forward with talking with everyone that suffers from > these horrible conditions and to exchange ideas and advise to help each > other manange the pain. > > Thanks! > > Chris > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2006 Report Share Posted September 5, 2006 Hi Barbara, I did call the doc that did the injection today because I'm in intense pain. He said my symptoms could last up to 10 days before I get any relief or I might be apart of the 30% that it has no effect on. I'm sweating and have tears I'm hurting so much. I don't know if the next set of injections would be worth it? It seems that you have not had any significant relief either with these. I'm starting to consider the surgical route as the only option left, but I know that also can also carry risks and it might not cure all the pain. The doctor called in three prescriptions to pick up at pharmacy. One is a muscle relaxor, another is to help me sleep and the third is for pain. I'm not sure what the names are but I'll let you know when I get them. I have a follow up this Friday with my neurosurgeon so I'm hoping to get some advise to help manage the pain. Hope your pain is better today. Chris > > Hi everyone, > > > > I'm Chris. This is my first posting to the group. I'm 27 and have > > been suffering from a L5-S1 disc herniation since about 2002 and > just > > recently, a T4 and T5 herniation was found on MRI a couple weeks > ago. > > I've have seen quite a few doctors in the past and tried a lot > > conservative therapies, but It seems like the pain is getting a > lot > > worse and it's really making life hard. I just had an epidural > steroid > > injection in my lower back on Friday witch was very painful to > have > > done and put me in tears. The pain is much worse right now. Lots > of > > numb, burning and weakness feelings in both legs and some pain in > my > > arms. I'm looking forward with talking with everyone that suffers > from > > these horrible conditions and to exchange ideas and advise to help > each > > other manange the pain. > > > > Thanks! > > > > Chris > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2006 Report Share Posted September 5, 2006 Hi I must say I believe my pain is much less than yours, but it was pretty bad this winter and I do feel the chiropractor helped it be managable. Actually when I think back even though I have some pain, it is much better now. I don't take any pain meds but at one time I did. Tomorrow will be one week since my injections and so far I can say I might have felt better before the injections not after. I sent you an email, maybe posted it here too, but it did say in this article that if you don't feel relief from the first, chances are you won't from the second, but you could be different. I hated the side effects from the meds, the headache and sick feeling. My head still hurts a little but I'm not sure if it's from the procedure or not. I'm seeing my chiropractor tomorrow. I had to try the epidural because I thought it might take away any pain. Now, I don't think I want any more, I want God and nature to heal it. I am sorry to hear all the pain you are in and all the meds you have to take. Ten days is a long time to wait for relief, I wonder why so long. Hope relief comes sooner. Take care, Barbara <cpichon1@...> wrote: Hi Barbara, I did call the doc that did the injection today because I'm in intense pain. He said my symptoms could last up to 10 days before I get any relief or I might be apart of the 30% that it has no effect on. I'm sweating and have tears I'm hurting so much. I don't know if the next set of injections would be worth it? It seems that you have not had any significant relief either with these. I'm starting to consider the surgical route as the only option left, but I know that also can also carry risks and it might not cure all the pain. The doctor called in three prescriptions to pick up at pharmacy. One is a muscle relaxor, another is to help me sleep and the third is for pain. I'm not sure what the names are but I'll let you know when I get them. I have a follow up this Friday with my neurosurgeon so I'm hoping to get some advise to help manage the pain. Hope your pain is better today. Chris > > Hi everyone, > > > > I'm Chris. This is my first posting to the group. I'm 27 and have > > been suffering from a L5-S1 disc herniation since about 2002 and > just > > recently, a T4 and T5 herniation was found on MRI a couple weeks > ago. > > I've have seen quite a few doctors in the past and tried a lot > > conservative therapies, but It seems like the pain is getting a > lot > > worse and it's really making life hard. I just had an epidural > steroid > > injection in my lower back on Friday witch was very painful to > have > > done and put me in tears. The pain is much worse right now. Lots > of > > numb, burning and weakness feelings in both legs and some pain in > my > > arms. I'm looking forward with talking with everyone that suffers > from > > these horrible conditions and to exchange ideas and advise to help > each > > other manange the pain. > > > > Thanks! > > > > Chris > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2007 Report Share Posted September 12, 2007 Hi Vicky! Since you don't have insurance, I suggest that you check Miracle Mineral Supplement. First download and read the free ebook available at www.miraclemineral.org Then, you can either make the solution yourself or order it, it only costs 20$ for a 2 years supply. Best of Health! Sylvain > > Hi all, my name is Vicky and I live in AL. I was diagnosed with HIV > about 4 yrs ago. It has taken me awhile to come to terms with the > fact that I am HIV positive. Well, I have been refusing any kind of > treatmeant, first of all I cannot afford it, I have no medical > insurance. Now, I have been diagnosed with Shingles. It's this > painful rash thing on my hip and it hurts. I was wondering if anyone > has ever had this? Also, the reasearch I have done on it says it > should go away with in 3-5 weeks. Well, does that include people > with HIV. I know it takes longer for me to heal from things. Will I > ever get rid of this and will it take longer than the 3-5 weeks. > Also, what do you all think about the treatments that is out there > for HIV persons? Am I being stubborn not taking the treatments? I > am looking forward to chatting with you all and getting to know all > of you, and thank you so much for help. > > Have a blessed day > Vicky > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2007 Report Share Posted September 12, 2007 Hi Vicky! Since you don't have insurance, I suggest that you check Miracle Mineral Supplement. First download and read the free ebook available at www.miraclemineral.org Then, you can either make the solution yourself or order it, it only costs 20$ for a 2 years supply. Best of Health! Sylvain > > Hi all, my name is Vicky and I live in AL. I was diagnosed with HIV > about 4 yrs ago. It has taken me awhile to come to terms with the > fact that I am HIV positive. Well, I have been refusing any kind of > treatmeant, first of all I cannot afford it, I have no medical > insurance. Now, I have been diagnosed with Shingles. It's this > painful rash thing on my hip and it hurts. I was wondering if anyone > has ever had this? Also, the reasearch I have done on it says it > should go away with in 3-5 weeks. Well, does that include people > with HIV. I know it takes longer for me to heal from things. Will I > ever get rid of this and will it take longer than the 3-5 weeks. > Also, what do you all think about the treatments that is out there > for HIV persons? Am I being stubborn not taking the treatments? I > am looking forward to chatting with you all and getting to know all > of you, and thank you so much for help. > > Have a blessed day > Vicky > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2008 Report Share Posted February 17, 2008 > > I'm Chris. This is my first posting to the group. I'm 27 and have > been suffering from a L5-S1 disc herniation since about 2002 and just > recently, a T4 and T5 herniation was found on MRI a couple weeks ago. > I've have seen quite a few doctors in the past and tried a lot > conservative therapies, but It seems like the pain is getting a lot > worse and it's really making life hard. I just had an epidural steroid >Hi I am sorry that you re in pain. I do not want to discourage you but I had my firs epidural in Dec. It ways awful. I actually had a second one which was on the left and right side. I am here to tell you that I have never felt such intense pain in my life. Like the first one, I felt it go down to my feet like an electric shot and a pain that made me cry out. I was yelled at for moving, i was not given anything to relax. The doctor said if I moved again he would quite right then so I almost bit my little finger off to endure the second one. My husband heard me cry out in the waiting room. I could not walk. I had to be taken out to my car in 5 minutes in a wheel chair. That was December and it is now almost the end of February. I had an MRI Friday that hurt so bad that I wound up in the ER. Those shots literally crippled me for weeks. I canceled the third one and he stopped my pain meds and sent me back to the HGP doctor who was kind enough to give me a prescription. I am in far worse condition than i was before the epidural shots. I have to use a walker when I go out a cane and sometimes a walker in the house. The whole thing started on the left and know the right side is affected also. I am on pain meds and a muscle relaxer that just takes the edge off if that. It does make me tired so that I can get some sleep. But, I vIrtualy live in my lounger. I can not sleep in bed. I have to sleep half sitting up with constant heat for ice makes it way worse. I am so depressed and tired of being in pain that I have just about give up. The ER nurse told my husband said that I should be on meds for chronic severe pain and to talk to my doctor. I wish that I would have gotten it in writing. I have my husband's HMO and Medicare so I do not have a choice of doctors to choose one. March 11th I am to see their only other pain doctor which is over 100 miles from her up in Chicago. The last one was 60 miles away. I got a written report of the first epidural upon asking the MRI receptionist since no one gave me anything but a disc the first time. This second MRI was of my neck which does not hurt. It is lower down. I also begged them to give me another lumbar MRI and they would not do it. The report said a lot more than just one herniated disc at L% but I have already taken up half or more of the page already. If you want to email me directly please feel free to do so. I almost forgot to add that before the second epidural the pain doctor told me that it would never heal and that the epidural was just a temporary bandage. I also had severe allergic reactions from the shots because they used prednisone which they knew that I am allergic to. Cheryl V Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2008 Report Share Posted February 17, 2008 Wow, this is really becomming discouraging. I read these posts and others from other websites, and I come to the same conclusion that once you reach adulthood and you were born with SB, no on wants anything to do with you, much less knows what to do with you. And they don't even seem to realize that by definition, at least for the form of SB I was born with, Myelomeningocele, technically I DON'T even HAVE SB anymore because I'm sure as heck not walking (or now I should say wheeling) around with a hole in my spine. All of us here are suffering from the affects and damage the the SB caused and in a tremendous amount of pain, and deteriorating rapidly (yes, I find out I'm not the only one out there). I really wish I had words of encouragement for you, and some answers, but it seems we're all out there searching and honestly I don't really understand why. Pain is pain, whatever the cause, so why can't they help? I don't know. All I cal say, is don't give up, when you have a 'good day' than God for it, and when you have a bad one, pray for a good one. And keep searching. There has to be answers out there somewhere for us. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2008 Report Share Posted March 17, 2008 > > Hi all, my name is Vicky and I live in AL. I was diagnosed with HIV > about 4 yrs ago. It has taken me awhile to come to terms with the > fact that I am HIV positive. Well, I have been refusing any kind of > treatmeant, first of all I cannot afford it, I have no medical > insurance. Now, I have been diagnosed with Shingles. It's this > painful rash thing on my hip and it hurts. I was wondering if anyone > has ever had this? Also, the reasearch I have done on it says it > should go away with in 3-5 weeks. Well, does that include people > with HIV. I know it takes longer for me to heal from things. Will I > ever get rid of this and will it take longer than the 3-5 weeks. > Also, what do you all think about the treatments that is out there > for HIV persons? Am I being stubborn not taking the treatments? I > am looking forward to chatting with you all and getting to know all > of you, and thank you so much for help. > > Have a blessed day > Vicky > Vicky, Sorry to hear about your situation. You should find out from the AIDS community about getting hooked up with medical help. Medicare, etc. Also, shingles can go on for a looooong time so read up on earthclinic.com. Google shingles and see what you come up with. Here's a little I got. I'm not telling you to do this but perhaps it'll help jumpstart your own research. Shingles is caused by the same virus that causes chickenpox. Once a person has had chickenpox, the virus can live, but remain inactive, in your body. Some folks have made an ointment that you can make at home with aspirin and chloroform. (You can probably get chloroform at your pharmacy, but if you can't, use Vaseline Intensive Care lotion in its place.) Mash up two aspirins (do not use aspirin substitutes) and mix them with two tablespoons of chloroform. Apply this mixture with a clean cotton ball to the shingles lesions. Some people find that calamine lotion can relieve the pain and help dry the lesictus. The amino acid lysine inhibits herpes activity and can help shorten an attack. You only need to take lysine supplements during the course an outbreak. In addition, avoid arginine-rich foods such as chocolate, peanuts, seeds, and cereal grains. Arginine is another amino acid, but its effect on the virus is the opposite of lysine's: It promotes herpes growth. You can also use lysine cream to hasten healing. It's available in health food stores. I usually advise applying it topically, twice a day, but check: with the directions on the package label. Once the shingles lesions have healed, an ointment called Zostrix may reduce any lingering pain you may experience. It is available without prescription from a pharmacy. The important ingredient is capsaicin, which is a naturally occurring irritant found in hot peppers. Like hot peppers, it can sting your eyes or irritate a cut. It might well sting when you first apply it to painful areas on your skin, but it's supposed to. It works to deplete a substance manufactured by your skin that transmits messages of pain to the brain; by applying Zostrix regularly, this message can't get through. Hope this helps. God Bless, Vicky. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 > > > > Hi all, my name is Vicky and I live in AL. I was diagnosed with > HIV > > about 4 yrs ago. It has taken me awhile to come to terms with the > > fact that I am HIV positive. Well, I have been refusing any kind > of > > treatmeant, first of all I cannot afford it, I have no medical > > insurance. Now, I have been diagnosed with Shingles. It's this > > painful rash thing on my hip and it hurts. I was wondering if > anyone > > has ever had this? Also, the reasearch I have done on it says it > > should go away with in 3-5 weeks. Well, does that include people > > with HIV. I know it takes longer for me to heal from things. Will > I > > ever get rid of this and will it take longer than the 3-5 weeks. > > Also, what do you all think about the treatments that is out there > > for HIV persons? Am I being stubborn not taking the treatments? I > > am looking forward to chatting with you all and getting to know all > > of you, and thank you so much for help. > > > > Have a blessed day > > Vicky > > > > > Vicky, > > Sorry to hear about your situation. You should find out from the AIDS > community about getting hooked up with medical help. Medicare, etc. > Also, shingles can go on for a looooong time so read up on > earthclinic.com. Google shingles and see what you come up with. > Here's a little I got. I'm not telling you to do this but perhaps > it'll help jumpstart your own research. > > Shingles is caused by the same virus that causes chickenpox. Once a > person has had chickenpox, the virus can live, but remain inactive, > in your body. > > Some folks have made an ointment that you can make at home with > aspirin and chloroform. (You can probably get chloroform at your > pharmacy, but if you can't, use Vaseline Intensive Care lotion in its > place.) Mash up two aspirins (do not use aspirin substitutes) and mix > them with two tablespoons of chloroform. Apply this mixture with a > clean cotton ball to the shingles lesions. > > Some people find that calamine lotion can relieve the pain and help > dry the lesictus. > > The amino acid lysine inhibits herpes activity and can help shorten > an attack. You only need to take lysine supplements during the course > an outbreak. In addition, avoid arginine-rich foods such as > chocolate, peanuts, seeds, and cereal grains. Arginine is another > amino acid, but its effect on the virus is the opposite of lysine's: > It promotes herpes growth. > > You can also use lysine cream to hasten healing. It's available in > health food stores. I usually advise applying it topically, twice a > day, but check: with the directions on the package label. > > Once the shingles lesions have healed, an ointment called Zostrix may > reduce any lingering pain you may experience. It is > available without prescription from a pharmacy. The important > ingredient is capsaicin, which is a naturally occurring irritant > found in hot peppers. > > Like hot peppers, it can sting your eyes or irritate a cut. It might > well sting when you first apply it to painful areas on your skin, but > it's supposed to. It works to deplete a substance manufactured by > your skin that transmits messages of pain to the brain; by applying > Zostrix regularly, this message can't get through. Hope this helps. > > > God Bless, Vicky. Dear Vicky, You do not have to live with Aids in your blood. You can cure yourself by using the Dr. Bob Beck Protocol. A cure for Aids was discovered at the Albert Einstein School of Medicine in 1992 and was covered up by the medical establishment. Please drop me a line with your e-mail address and I will send you the information so that you can get rid of this virus. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2008 Report Share Posted March 21, 2008 I suggest that you order some covalent silver water, it is cheap and have great promise. I tried the Beck protocol, it made me feel good, got my viral load to go down but my CD4s kept going down as well. Recently, I took ImmunoQR from India and they guarantee that I can't infect anyone anymore and that my CD4s will rise slowly to normal levels but that remains to be seen in a few months. I tried ozone therapy and I got similar results as on the Beck protocol, lower viral load(good) and lower CD4(not good). Covalent silver seems like the perfect solution as silver can kill HIV, especially in nanoparticules size. You can also get a tetrasil injection from Boyd Graves for 500$ which will kill all HIV in your body except from deep in the bone marrow so it should come back in a few years but it is not a bad solution either, although not permanent. Good luck! Happy > > > > > > Hi all, my name is Vicky and I live in AL. I was diagnosed with > > HIV > > > about 4 yrs ago. It has taken me awhile to come to terms with > the > > > fact that I am HIV positive. Well, I have been refusing any kind > > of > > > treatmeant, first of all I cannot afford it, I have no medical > > > insurance. Now, I have been diagnosed with Shingles. It's this > > > painful rash thing on my hip and it hurts. I was wondering if > > anyone > > > has ever had this? Also, the reasearch I have done on it says it > > > should go away with in 3-5 weeks. Well, does that include people > > > with HIV. I know it takes longer for me to heal from things. > Will > > I > > > ever get rid of this and will it take longer than the 3-5 weeks. > > > Also, what do you all think about the treatments that is out > there > > > for HIV persons? Am I being stubborn not taking the treatments? > I > > > am looking forward to chatting with you all and getting to know > all > > > of you, and thank you so much for help. > > > > > > Have a blessed day > > > Vicky > > > > > > > > > Vicky, > > > > Sorry to hear about your situation. You should find out from the > AIDS > > community about getting hooked up with medical help. Medicare, etc. > > Also, shingles can go on for a looooong time so read up on > > earthclinic.com. Google shingles and see what you come up with. > > Here's a little I got. I'm not telling you to do this but perhaps > > it'll help jumpstart your own research. > > > > Shingles is caused by the same virus that causes chickenpox. Once a > > person has had chickenpox, the virus can live, but remain inactive, > > in your body. > > > > Some folks have made an ointment that you can make at home with > > aspirin and chloroform. (You can probably get chloroform at your > > pharmacy, but if you can't, use Vaseline Intensive Care lotion in > its > > place.) Mash up two aspirins (do not use aspirin substitutes) and > mix > > them with two tablespoons of chloroform. Apply this mixture with a > > clean cotton ball to the shingles lesions. > > > > Some people find that calamine lotion can relieve the pain and > help > > dry the lesictus. > > > > The amino acid lysine inhibits herpes activity and can help shorten > > an attack. You only need to take lysine supplements during the > course > > an outbreak. In addition, avoid arginine-rich foods such as > > chocolate, peanuts, seeds, and cereal grains. Arginine is another > > amino acid, but its effect on the virus is the opposite of > lysine's: > > It promotes herpes growth. > > > > You can also use lysine cream to hasten healing. It's available in > > health food stores. I usually advise applying it topically, twice a > > day, but check: with the directions on the package label. > > > > Once the shingles lesions have healed, an ointment called Zostrix > may > > reduce any lingering pain you may experience. It is > > available without prescription from a pharmacy. The important > > ingredient is capsaicin, which is a naturally occurring irritant > > found in hot peppers. > > > > Like hot peppers, it can sting your eyes or irritate a cut. It > might > > well sting when you first apply it to painful areas on your skin, > but > > it's supposed to. It works to deplete a substance manufactured by > > your skin that transmits messages of pain to the brain; by applying > > Zostrix regularly, this message can't get through. Hope this helps. > > > > > > God Bless, Vicky. > Dear Vicky, > You do not have to live with Aids in your blood. You can cure > yourself by using the Dr. Bob Beck Protocol. A cure for Aids was > discovered at the Albert Einstein School of Medicine in 1992 and was > covered up by the medical establishment. Please drop me a line with > your e-mail address and I will send you the information so that you > can get rid of this virus. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2008 Report Share Posted March 21, 2008 Vicki, Please don't listen to the garbage about Beck's cure for AIDS. It does NOT work and NO ONE has been cured by using it. Don't you think the world would have heard of this by now? It's totally bogus and totally a lie. The ones who believe that it cures are actually the ones that have only READ about it and don't have the actual virus themselves. Follow your heart, but hun there is no cure for HIV/AIDS to this current date. I wish you much luck in your future and in your health. God bless you. -- In cures for AIDS , " sidneyb2001 " <sidneyb2001@...> wrote: > > > > > > > > Hi all, my name is Vicky and I live in AL. I was diagnosed with > > HIV > > > about 4 yrs ago. It has taken me awhile to come to terms with > the > > > fact that I am HIV positive. Well, I have been refusing any kind > > of > > > treatmeant, first of all I cannot afford it, I have no medical > > > insurance. Now, I have been diagnosed with Shingles. It's this > > > painful rash thing on my hip and it hurts. I was wondering if > > anyone > > > has ever had this? Also, the reasearch I have done on it says it > > > should go away with in 3-5 weeks. Well, does that include people > > > with HIV. I know it takes longer for me to heal from things. > Will > > I > > > ever get rid of this and will it take longer than the 3-5 weeks. > > > Also, what do you all think about the treatments that is out > there > > > for HIV persons? Am I being stubborn not taking the treatments? > I > > > am looking forward to chatting with you all and getting to know > all > > > of you, and thank you so much for help. > > > > > > Have a blessed day > > > Vicky > > > > > > > > > Vicky, > > > > Sorry to hear about your situation. You should find out from the > AIDS > > community about getting hooked up with medical help. Medicare, etc. > > Also, shingles can go on for a looooong time so read up on > > earthclinic.com. Google shingles and see what you come up with. > > Here's a little I got. I'm not telling you to do this but perhaps > > it'll help jumpstart your own research. > > > > Shingles is caused by the same virus that causes chickenpox. Once a > > person has had chickenpox, the virus can live, but remain inactive, > > in your body. > > > > Some folks have made an ointment that you can make at home with > > aspirin and chloroform. (You can probably get chloroform at your > > pharmacy, but if you can't, use Vaseline Intensive Care lotion in > its > > place.) Mash up two aspirins (do not use aspirin substitutes) and > mix > > them with two tablespoons of chloroform. Apply this mixture with a > > clean cotton ball to the shingles lesions. > > > > Some people find that calamine lotion can relieve the pain and > help > > dry the lesictus. > > > > The amino acid lysine inhibits herpes activity and can help shorten > > an attack. You only need to take lysine supplements during the > course > > an outbreak. In addition, avoid arginine-rich foods such as > > chocolate, peanuts, seeds, and cereal grains. Arginine is another > > amino acid, but its effect on the virus is the opposite of > lysine's: > > It promotes herpes growth. > > > > You can also use lysine cream to hasten healing. It's available in > > health food stores. I usually advise applying it topically, twice a > > day, but check: with the directions on the package label. > > > > Once the shingles lesions have healed, an ointment called Zostrix > may > > reduce any lingering pain you may experience. It is > > available without prescription from a pharmacy. The important > > ingredient is capsaicin, which is a naturally occurring irritant > > found in hot peppers. > > > > Like hot peppers, it can sting your eyes or irritate a cut. It > might > > well sting when you first apply it to painful areas on your skin, > but > > it's supposed to. It works to deplete a substance manufactured by > > your skin that transmits messages of pain to the brain; by applying > > Zostrix regularly, this message can't get through. Hope this helps. > > > > > > God Bless, Vicky. > Dear Vicky, > You do not have to live with Aids in your blood. You can cure > yourself by using the Dr. Bob Beck Protocol. A cure for Aids was > discovered at the Albert Einstein School of Medicine in 1992 and was > covered up by the medical establishment. Please drop me a line with > your e-mail address and I will send you the information so that you > can get rid of this virus. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2010 Report Share Posted July 12, 2010 Hi Everyone, My name is . I am a stay-at-home mommy to my sweet 4-yr-old boy. I have suspected for a couple years that he might have Asperger's, but now it is undeniable. I really am just looking for some encouragement right now. I feel pretty sad with this realization, not that it's the end of the world, but I'm sure you all understand... Thanks, -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2010 Report Share Posted July 12, 2010 Yes, the initial acceptance that something is wrong is hard to deal with but once you get to the other side, things improve. I really think time and knowledge are the healers. It's just realizing you have a different set of challenges ahead of you than you thought you'd have, but it's not insurmountable. This listserv is a great first step to be heard and ask questions/get support from people who understand. Welcome! "Over-optimism is waiting for you ship to come in when you haven't sent one out." From: McCullough <lpmfdm@...> Sent: Mon, July 12, 2010 4:48:36 PMSubject: ( ) hi, new member Hi Everyone, My name is . I am a stay-at-home mommy to my sweet 4-yr-old boy. I have suspected for a couple years that he might have Asperger's, but now it is undeniable. I really am just looking for some encouragement right now. I feel pretty sad with this realization, not that it's the end of the world, but I'm sure you all understand.. . Thanks, -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2010 Report Share Posted July 12, 2010 Welcome! And, don't feel sad...you are lucky in that you know already...many don't find out till the child is older. Your child is a gift from God and is very very unique and special. Our children see the world a different way which can be wonderful. I think who would want everyone to be exactly alike. So post, read and research. Things will be okay. Take a step at a time and remember to relax and breathe. Jan "In the Midst of Difficulty lies Opportunity" Albert Einstein Success is not measured by one's position but by the obstacles one has overcome to obtain that position From: McCullough <lpmfdm@...> Sent: Mon, July 12, 2010 5:48:36 PMSubject: ( ) hi, new member Hi Everyone, My name is . I am a stay-at-home mommy to my sweet 4-yr-old boy. I have suspected for a couple years that he might have Asperger's, but now it is undeniable. I really am just looking for some encouragement right now. I feel pretty sad with this realization, not that it's the end of the world, but I'm sure you all understand.. . Thanks, -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2010 Report Share Posted September 27, 2010 , I am 36 and just had a patella femoral replacement in my left knee in May. I am going to have my right knee done in December. I had no choice. I had multiple surgeries done trying to avoid doing PFR because of my age and nothing worked well. My quality of life was so poor the last 7 years. I have had so many braces I can't even count. I have had cartilage transplants. I am not totally pain free but I am very close to being pain free in my left knee. I have not had this much relief in almost 8 years. Now I am hoping to have the same positive results in my right knee. So I can regain my life back. Although, it really hurts my right knee I am able to ride a bike again to help try and strengthen my legs. My legs are so weak. Wait on surgery as long as possible but just know when it's time you have to do what you have to do. If you have any questions let me know. Tara On Sep 26, 2010, at 8:23 PM, T wrote: > Hi, everyone, I'm new to the group and this whole chondromalacia thing. I am 37 > and just found out that I have chondromalacia. I have to admit I am pretty > stunned, so everything is in a real fog, and bit by bit more of what my doc said > is coming back to me. I have been really bummed out since I got the news. I have > always had knee problems my whole life, but I pretty much just dealt with the > pain and have lead a fairly active lifestyle. I always played sports, which of > course added to the pain, but I loved to play soccer and basketball and I > wouldn't listen to people who told me to stop. Never really had a firm diagnosis > of why I was always hurting though. In 2003 I had arthroscopy to repair a tear > in my meniscus that would create a flap and after that I was pretty happy with > the results, although I still always had a touch of pain, especially if I would > land on it while snowboarding or doing a lot of stairs or cleaning, etc. So, > about a month ago I....as you will find out I am very VERY klutzy!...I was > carrying some stuff in my arms and stepped on my cat (not seeing her of course), > and did something to my knee as I bobbled back and forth. Went to my knee doc > (he's great btw) because I thought I tore the same meniscus again. I was in so > much pain he could barely examine me, and I was very swollen with lots of fluid > so it was hard for him to give me a clear diagnosis at the time of what exactly > I did to myself. Week of bed rest with limited movement and ice and > anti-inflamatories really did help, and I just went back for my follow up. I am > still really tender right in the area of my patella, which he says is due to > tendonitis, flared up from the injury. He said I did have a small tear, but > nothing he would operate on, but then he showed my my MRI and said...but you > have chondromalasia, and then proceeds to show me my patella and cartledge, and > even I could see right off the bat that something was really really wrong. The > right side of my cartiledge had almost completely worn away! He said that in a > few years I would need a partial knee replacement, but that I should wait until > it got to the point where I couldn't walk 5 blocks or so without pain. He > prescribed me a brace which I need to order, and said no contact sports (my mom > has a hip replacement and participates in kickboxing so this is not as bizarre a > comment as you might first think for my family - we're nuts), and once the knee > has calmed down a little further gave me some exercises to do to pull the > patella into the right space so maybe I will gain a few years. I am just so sad. > My dad just had to have both his knees replaced, and while I see how much better > off he is for it - he can walk the dog again, he can move around the house, etc. > - I also saw the pain he went through, but also he's in his late 60's! I'm > almost half his age and I need one too?! The thought brings me to tears. > Anyway, just wondering if anyone is in the same boat, or have been there. Thanks > for listening. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2010 Report Share Posted September 27, 2010 Thanks, Tara...it really helps to know I'm not the only one to be going through this at a young age. The more I research, the more I see that it's sadly common in athletic girls. I'll have to do more research on PFR, but I have a feeling that is what my doc was referring to. So, after the surgery did your OS say it was ok to go back to athletic activities? How long was your recovery? Are you able to do stairs? Or sit for a work day? I know I will come to a time to need the surgery, but I also know that sometimes it's better to not forestall the inevitable. I probably have another year or two (based off my pain now) before it become intolerable. But, at least I still have a lot of stregnth in my leg. My dad needed partials in both knees a few years ago, and decided not to do it. He got to a point where he couldn't even get out of a chair, let alone walk anywhere, so it progressed to where he needed two full replacements at the same time. It was brutal, but now he's happy to have done it. So, part of me is like I want nothing to do with this surgery, but the other part of me is like, don't wait until you need even more drastic surgery and loose all your stregnth. I actually have a lot of problems with my joints, I have way too much collagen so it makes my joints hyper-mobile (hence my chronic subluxation). I had a problem with my right shoulder dislocating all the time, and the doc was like the surgery to fix this is horrible, wait until you have no other choice. I spent 5 years going to PT and in chronic pain. I mean, pain to the point of feeling like I was going to go crazy. It wasn't until I started loosing the ability to write from the nerve damage, that it became clear that I just couldn't wait any more. I had the surgery, and it was the most painful, horrible thing I have ever gone through. It took me over a year to recover back to almost normal. However, I have zero pain on most days, unless I've done something I shouldn't. I was able to ski again, and play lots of sports with some limitations (can't throw a ball, that position is BAD for me). And I actually wish I had done it sooner because I had wasted all that time being in pain and not having a life, when I could have been not like that. But, I also understand in that you have to be mentally to a point where the pain you are going through in recovery and post-op is well worth not having to go through what you were just feeling. So....I see a lot of people saying wait until you have no other option, but I'm wondering why that is. Is it that this is such a tough surgery to go through that you need to be mentally ready to go through it? Or that any surgery is something to be avoided? Or that many people have had bad experiences with their doc? Knowing what you know now, would you have opted for the PFR sooner? Thanks, ________________________________ From: Tara Gandy-Sanford <try2livehealthy@...> chondromalacia treatment Sent: Mon, September 27, 2010 8:30:14 AM Subject: Re: Hi, new member , I am 36 and just had a patella femoral replacement in my left knee in May. I am going to have my right knee done in December. I had no choice. I had multiple surgeries done trying to avoid doing PFR because of my age and nothing worked well. My quality of life was so poor the last 7 years. I have had so many braces I can't even count. I have had cartilage transplants. I am not totally pain free but I am very close to being pain free in my left knee. I have not had this much relief in almost 8 years. Now I am hoping to have the same positive results in my right knee. So I can regain my life back. Although, it really hurts my right knee I am able to ride a bike again to help try and strengthen my legs. My legs are so weak. Wait on surgery as long as possible but just know when it's time you have to do what you have to do. If you have any questions let me know. Tara On Sep 26, 2010, at 8:23 PM, T wrote: > Hi, everyone, I'm new to the group and this whole chondromalacia thing. I am 37 > > and just found out that I have chondromalacia. I have to admit I am pretty > stunned, so everything is in a real fog, and bit by bit more of what my doc >said > > is coming back to me. I have been really bummed out since I got the news. I >have > > always had knee problems my whole life, but I pretty much just dealt with the > pain and have lead a fairly active lifestyle. I always played sports, which of > course added to the pain, but I loved to play soccer and basketball and I > wouldn't listen to people who told me to stop. Never really had a firm >diagnosis > > of why I was always hurting though. In 2003 I had arthroscopy to repair a tear > in my meniscus that would create a flap and after that I was pretty happy with > the results, although I still always had a touch of pain, especially if I would > > land on it while snowboarding or doing a lot of stairs or cleaning, etc. So, > about a month ago I....as you will find out I am very VERY klutzy!...I was > carrying some stuff in my arms and stepped on my cat (not seeing her of >course), > > and did something to my knee as I bobbled back and forth. Went to my knee doc > (he's great btw) because I thought I tore the same meniscus again. I was in so > much pain he could barely examine me, and I was very swollen with lots of fluid > > so it was hard for him to give me a clear diagnosis at the time of what exactly > > I did to myself. Week of bed rest with limited movement and ice and > anti-inflamatories really did help, and I just went back for my follow up. I am > > still really tender right in the area of my patella, which he says is due to > tendonitis, flared up from the injury. He said I did have a small tear, but > nothing he would operate on, but then he showed my my MRI and said...but you > have chondromalasia, and then proceeds to show me my patella and cartledge, and > > even I could see right off the bat that something was really really wrong. The > right side of my cartiledge had almost completely worn away! He said that in a > few years I would need a partial knee replacement, but that I should wait until > > it got to the point where I couldn't walk 5 blocks or so without pain. He > prescribed me a brace which I need to order, and said no contact sports (my mom > > has a hip replacement and participates in kickboxing so this is not as bizarre >a > > comment as you might first think for my family - we're nuts), and once the knee > > has calmed down a little further gave me some exercises to do to pull the > patella into the right space so maybe I will gain a few years. I am just so >sad. > > My dad just had to have both his knees replaced, and while I see how much >better > > off he is for it - he can walk the dog again, he can move around the house, >etc. > > - I also saw the pain he went through, but also he's in his late 60's! I'm > almost half his age and I need one too?! The thought brings me to tears. > Anyway, just wondering if anyone is in the same boat, or have been there. >Thanks > > for listening. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2010 Report Share Posted September 27, 2010 , The OS basically said I can do what ever I want except kneel, run or any contact sports. Supposedly I can ski, bike ride, play sports. I am 4 months out of surgery and he said it will be a year before I really know if the surgery is successful. I am able to do stairs but it is still hard primarily because of my other knee. But each week I see it is getting better with my new knee. I am not back to work yet because I have been out for 7 years. I had stage 4 cp in both knees. Out of the last 8 years I have been on crutches close to 4 of them. If I wasn't on crutches I have to use a cane. My quality of life was very poor. But our hope is to be able to go back to work after the right knee is done in December. The doctor and I are battling about whether or not I will be able to run after the right knee is done. He says no I say why not? So we will have to see who wins next year. There is a debate among OS whether or not patients should be able to run after partial or total knee replacements. Some say you should others say no because it wears the joint out faster. I just say do your research and know more than the dr. going in to anything. That was my first mistake with my first OS but believe me it has never happened again. My dr now is very innovative. He does a lot of research when it comes to me because my case was so unusual. He has spoken to other OS all over the country trying to figure out the best course of treatment. I didn't have pain or warning signs that my knees were going bad. They both gave out at the same time out of the blue. The first surgeon didn't tell me I had cp. He didn't tell me that cp was a form of osteoarthritis. He didn't tell me that there was a 10 to 15% chance that what he did in surgery might not work. I feel into that 10 to 15% that it didn't work and I continued to deteriorate. I ended up going through 6 more operations trying to avoid pfr and still ended up needing it. Now I have had 9 operations and lost years of my life I can't get back. I can't stress enough to do your research. And what ever the OS tells you research it. Get other opinions if you have to. I have built such a relationship with my OS and his staff that I know he doesn't have with anyone else. That's very important in your treatment also. Feel free to talk to me if you need too. I will do my best to answer any questions I can. Also get a good pain management dr. If the PM Dr wants to give you narcotics first then he is not good. The first course of treatment should not be narcotics. Tara On Sep 27, 2010, at 9:50 AM, T wrote: > Thanks, Tara...it really helps to know I'm not the only one to be going through > this at a young age. The more I research, the more I see that it's sadly common > in athletic girls. I'll have to do more research on PFR, but I have a feeling > that is what my doc was referring to. So, after the surgery did your OS say it > was ok to go back to athletic activities? How long was your recovery? Are you > able to do stairs? Or sit for a work day? > > I know I will come to a time to need the surgery, but I also know that sometimes > it's better to not forestall the inevitable. I probably have another year or two > (based off my pain now) before it become intolerable. But, at least I still have > a lot of stregnth in my leg. My dad needed partials in both knees a few years > ago, and decided not to do it. He got to a point where he couldn't even get out > of a chair, let alone walk anywhere, so it progressed to where he needed two > full replacements at the same time. It was brutal, but now he's happy to have > done it. So, part of me is like I want nothing to do with this surgery, but the > other part of me is like, don't wait until you need even more drastic surgery > and loose all your stregnth. > > I actually have a lot of problems with my joints, I have way too much collagen > so it makes my joints hyper-mobile (hence my chronic subluxation). I had a > problem with my right shoulder dislocating all the time, and the doc was like > the surgery to fix this is horrible, wait until you have no other choice. I > spent 5 years going to PT and in chronic pain. I mean, pain to the point of > feeling like I was going to go crazy. It wasn't until I started loosing the > ability to write from the nerve damage, that it became clear that I just > couldn't wait any more. I had the surgery, and it was the most painful, horrible > thing I have ever gone through. It took me over a year to recover back to almost > normal. However, I have zero pain on most days, unless I've done something I > shouldn't. I was able to ski again, and play lots of sports with some > limitations (can't throw a ball, that position is BAD for me). And I actually > wish I had done it sooner because I had wasted all that time being in pain and > not having a life, when I could have been not like that. But, I also understand > in that you have to be mentally to a point where the pain you are going through > in recovery and post-op is well worth not having to go through what you were > just feeling. So....I see a lot of people saying wait until you have no other > option, but I'm wondering why that is. Is it that this is such a tough surgery > to go through that you need to be mentally ready to go through it? Or that any > surgery is something to be avoided? Or that many people have had bad experiences > with their doc? Knowing what you know now, would you have opted for the PFR > sooner? > > Thanks, > > > ________________________________ > From: Tara Gandy-Sanford <try2livehealthy@...> > chondromalacia treatment > Sent: Mon, September 27, 2010 8:30:14 AM > Subject: Re: Hi, new member > > , > > I am 36 and just had a patella femoral replacement in my left knee in May. I am > going to have my right knee done in December. I had no choice. I had multiple > surgeries done trying to avoid doing PFR because of my age and nothing worked > well. My quality of life was so poor the last 7 years. I have had so many braces > I can't even count. I have had cartilage transplants. > > I am not totally pain free but I am very close to being pain free in my left > knee. I have not had this much relief in almost 8 years. Now I am hoping to have > the same positive results in my right knee. So I can regain my life back. > Although, it really hurts my right knee I am able to ride a bike again to help > try and strengthen my legs. My legs are so weak. > > Wait on surgery as long as possible but just know when it's time you have to do > what you have to do. If you have any questions let me know. > > Tara > On Sep 26, 2010, at 8:23 PM, T wrote: > > > Hi, everyone, I'm new to the group and this whole chondromalacia thing. I am 37 > > > > and just found out that I have chondromalacia. I have to admit I am pretty > > stunned, so everything is in a real fog, and bit by bit more of what my doc > >said > > > > is coming back to me. I have been really bummed out since I got the news. I > >have > > > > always had knee problems my whole life, but I pretty much just dealt with the > > pain and have lead a fairly active lifestyle. I always played sports, which of > > > course added to the pain, but I loved to play soccer and basketball and I > > wouldn't listen to people who told me to stop. Never really had a firm > >diagnosis > > > > of why I was always hurting though. In 2003 I had arthroscopy to repair a tear > > > in my meniscus that would create a flap and after that I was pretty happy with > > > the results, although I still always had a touch of pain, especially if I would > > > > land on it while snowboarding or doing a lot of stairs or cleaning, etc. So, > > about a month ago I....as you will find out I am very VERY klutzy!...I was > > carrying some stuff in my arms and stepped on my cat (not seeing her of > >course), > > > > and did something to my knee as I bobbled back and forth. Went to my knee doc > > (he's great btw) because I thought I tore the same meniscus again. I was in so > > > much pain he could barely examine me, and I was very swollen with lots of fluid > > > > so it was hard for him to give me a clear diagnosis at the time of what exactly > > > > I did to myself. Week of bed rest with limited movement and ice and > > anti-inflamatories really did help, and I just went back for my follow up. I am > > > > still really tender right in the area of my patella, which he says is due to > > tendonitis, flared up from the injury. He said I did have a small tear, but > > nothing he would operate on, but then he showed my my MRI and said...but you > > have chondromalasia, and then proceeds to show me my patella and cartledge, and > > > > even I could see right off the bat that something was really really wrong. The > > > right side of my cartiledge had almost completely worn away! He said that in a > > > few years I would need a partial knee replacement, but that I should wait until > > > > it got to the point where I couldn't walk 5 blocks or so without pain. He > > prescribed me a brace which I need to order, and said no contact sports (my mom > > > > has a hip replacement and participates in kickboxing so this is not as bizarre > >a > > > > comment as you might first think for my family - we're nuts), and once the knee > > > > has calmed down a little further gave me some exercises to do to pull the > > patella into the right space so maybe I will gain a few years. I am just so > >sad. > > > > My dad just had to have both his knees replaced, and while I see how much > >better > > > > off he is for it - he can walk the dog again, he can move around the house, > >etc. > > > > - I also saw the pain he went through, but also he's in his late 60's! I'm > > almost half his age and I need one too?! The thought brings me to tears. > > Anyway, just wondering if anyone is in the same boat, or have been there. > >Thanks > > > > for listening. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2010 Report Share Posted September 28, 2010 Hi I know exactly what you are going through, I am 36 myself and was finding it hard to come to the fact that in a few years my mobility will be severly impared. Like you, I look at my dad and can see a snap-shot of my future in front of me. My dad has got arthritis that has spread to his hands, hips, kness and lower back and he didn't start with it until he was about 45! I have now come to the reality of the situation and should probably be doing what I can to preserve what I have got left of the joint for as long as I can. I used to be quite ken on the martial arts but it would just be silly for me to try to go back to them now. I am still interested in getting active but these days only the more conservative sports such as hiking on flat ground and gentle cycling. I am also considering learning to sail!. There is plenty more ways to live a fulfilling life without running around like a bat out of hell all the time, we just need to see what else is out there. Unfortunatly, the situation is what it is, but the glass IS half full. We need to think about what we have got instead of what we haven't got. All the best Ady > > Hi, everyone, I'm new to the group and this whole chondromalacia thing. I am 37 > and just found out that I have chondromalacia. I have to admit I am pretty > stunned, so everything is in a real fog, and bit by bit more of what my doc said > is coming back to me. I have been really bummed out since I got the news. I have > always had knee problems my whole life, but I pretty much just dealt with the > pain and have lead a fairly active lifestyle. I always played sports, which of > course added to the pain, but I loved to play soccer and basketball and I > wouldn't listen to people who told me to stop. Never really had a firm diagnosis > of why I was always hurting though. In 2003 I had arthroscopy to repair a tear > in my meniscus that would create a flap and after that I was pretty happy with > the results, although I still always had a touch of pain, especially if I would > land on it while snowboarding or doing a lot of stairs or cleaning, etc. So, > about a month ago I....as you will find out I am very VERY klutzy!...I was > carrying some stuff in my arms and stepped on my cat (not seeing her of course), > and did something to my knee as I bobbled back and forth. Went to my knee doc > (he's great btw) because I thought I tore the same meniscus again. I was in so > much pain he could barely examine me, and I was very swollen with lots of fluid > so it was hard for him to give me a clear diagnosis at the time of what exactly > I did to myself. Week of bed rest with limited movement and ice and > anti-inflamatories really did help, and I just went back for my follow up. I am > still really tender right in the area of my patella, which he says is due to > tendonitis, flared up from the injury. He said I did have a small tear, but > nothing he would operate on, but then he showed my my MRI and said...but you > have chondromalasia, and then proceeds to show me my patella and cartledge, and > even I could see right off the bat that something was really really wrong. The > right side of my cartiledge had almost completely worn away! He said that in a > few years I would need a partial knee replacement, but that I should wait until > it got to the point where I couldn't walk 5 blocks or so without pain. He > prescribed me a brace which I need to order, and said no contact sports (my mom > has a hip replacement and participates in kickboxing so this is not as bizarre a > comment as you might first think for my family - we're nuts), and once the knee > has calmed down a little further gave me some exercises to do to pull the > patella into the right space so maybe I will gain a few years. I am just so sad. > My dad just had to have both his knees replaced, and while I see how much better > off he is for it - he can walk the dog again, he can move around the house, etc. > - I also saw the pain he went through, but also he's in his late 60's! I'm > almost half his age and I need one too?! The thought brings me to tears. > Anyway, just wondering if anyone is in the same boat, or have been there. Thanks > for listening. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2010 Report Share Posted September 28, 2010 Thanks, Ady! I think your right in that I just have to see what else is out there that I haven't tried before.I am just learning to golf, so hopefully that will be something that I can keep doing, and I've been learning some yoga and stuff...so maybe low impact isn't so bad. It's really made me feel better to see that I'm not an " odd duck " for having this problem at my age. So...ok, I think I'm finally getting to the point where I can take a deep breath and know this isn't the end of the world.  ________________________________ From: <biggles74@...> chondromalacia treatment Sent: Tue, September 28, 2010 6:38:29 AM Subject: Re: Hi, new member  Hi I know exactly what you are going through, I am 36 myself and was finding it hard to come to the fact that in a few years my mobility will be severly impared. Like you, I look at my dad and can see a snap-shot of my future in front of me. My dad has got arthritis that has spread to his hands, hips, kness and lower back and he didn't start with it until he was about 45! I have now come to the reality of the situation and should probably be doing what I can to preserve what I have got left of the joint for as long as I can. I used to be quite ken on the martial arts but it would just be silly for me to try to go back to them now. I am still interested in getting active but these days only the more conservative sports such as hiking on flat ground and gentle cycling. I am also considering learning to sail!. There is plenty more ways to live a fulfilling life without running around like a bat out of hell all the time, we just need to see what else is out there. Unfortunatly, the situation is what it is, but the glass IS half full. We need to think about what we have got instead of what we haven't got. All the best Ady > > Hi, everyone, I'm new to the group and this whole chondromalacia thing. I am 37 > > and just found out that I have chondromalacia. I have to admit I am pretty > stunned, so everything is in a real fog, and bit by bit more of what my doc >said > > is coming back to me. I have been really bummed out since I got the news. I >have > > always had knee problems my whole life, but I pretty much just dealt with the > pain and have lead a fairly active lifestyle. I always played sports, which of > course added to the pain, but I loved to play soccer and basketball and I > wouldn't listen to people who told me to stop. Never really had a firm >diagnosis > > of why I was always hurting though. In 2003 I had arthroscopy to repair a tear > in my meniscus that would create a flap and after that I was pretty happy with > the results, although I still always had a touch of pain, especially if I would > > land on it while snowboarding or doing a lot of stairs or cleaning, etc. So, > about a month ago I....as you will find out I am very VERY klutzy!...I was > carrying some stuff in my arms and stepped on my cat (not seeing her of >course), > > and did something to my knee as I bobbled back and forth. Went to my knee doc > (he's great btw) because I thought I tore the same meniscus again. I was in so > much pain he could barely examine me, and I was very swollen with lots of fluid > > so it was hard for him to give me a clear diagnosis at the time of what exactly > > I did to myself. Week of bed rest with limited movement and ice and > anti-inflamatories really did help, and I just went back for my follow up. I am > > still really tender right in the area of my patella, which he says is due to > tendonitis, flared up from the injury. He said I did have a small tear, but > nothing he would operate on, but then he showed my my MRI and said...but you > have chondromalasia, and then proceeds to show me my patella and cartledge, and > > even I could see right off the bat that something was really really wrong. The > right side of my cartiledge had almost completely worn away! He said that in a > few years I would need a partial knee replacement, but that I should wait until > > it got to the point where I couldn't walk 5 blocks or so without pain. He > prescribed me a brace which I need to order, and said no contact sports (my mom > > has a hip replacement and participates in kickboxing so this is not as bizarre >a > > comment as you might first think for my family - we're nuts), and once the knee > > has calmed down a little further gave me some exercises to do to pull the > patella into the right space so maybe I will gain a few years. I am just so >sad. > > My dad just had to have both his knees replaced, and while I see how much >better > > off he is for it - he can walk the dog again, he can move around the house, >etc. > > - I also saw the pain he went through, but also he's in his late 60's! I'm > almost half his age and I need one too?! The thought brings me to tears. > Anyway, just wondering if anyone is in the same boat, or have been there. >Thanks > > for listening. > > > > > Quote Link to comment Share on other sites More sharing options...
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