Guest guest Posted April 2, 2000 Report Share Posted April 2, 2000 Hello everyone. My name is . I'm 29 years old and I have had psoariasis since I was two years old (after I caught pnuemonia). I don't mean to go on and on here, but this is the first time in my life I feel like I have actually connected with a group of people like me, so I apologize in advance if I write a small novel When I was in the fourth grade, I would wake up at night with terrible pains in my hip. My parents took me to many doctors in the Denver area to try to find out what was wrong with me. Well, to make a long story short, I was MIS-diagnosed up until the age of 17. I was told I was simply growing too fast.. possibly had bone cancer, etc and so on. Not until I was 17 did I know what was truly wrong with me - psoariatic arthritis. By this time, my right hip and sacriliac joint were calcified and the tendons along my hip had atrophied. My pubic bone is fused and the right side is a tad deformed as well. This doctor then told me that I was most likely facing multiple hip replacements and there was a good chance it would spread to my spine (I guess you can imagine I freaked). He then topped off my day of gloom and doom with the side statement that wheelchair life would be a good possibility by my mid-twenties. Thinking that my life was at an end and just deciding that I would never be able to run again or even sit indian style, I tried to accept it. This of course, proved more difficult than I had thought. I went into a deep depression and my weight skyrocketed from 135 lbs to over 200 in the span of two years. I was taking every type of NSAID (excluding those with sulfa because I am allergic to it) and tons of stomach medication. When I was 25, I decided that enough was enough. I totally changed my lifestyle. I stopped eating meat altogether, and I took the bold move to completely stop my medications for the PA. Amazingly, I got better, and lost the weight (down to 145 - perfect for my height). I was excercising without pain for the first time since I was a child. Note: I wasn't going to any doctors for either the PA or the P at this time either. I think my mental attitude helped A LOT with my " remission " , though my psoariasis was still ever present. So here I am now, four years later and I feel like the world has just crashed down on my shoulders again. In January, I got a terrible pain in my back. Thinking it I just pulled it, I treated it with a heating pad and tried to take it easy for a few days. Two days later, I couldn't even stand up straight and my right leg was going numb. The pain was so severe, I was forced to take a trip to the ER. The result: " A Severe Lower Lumbar Sprain " . I was instructed to not lift anything heavier than a fork for two weeks and if the pain still persisted, seek further help. Two days later, I stood up from sitting at the computer, placed weight on my right foot and rolled my ankle. My leg was completely numb.. another trip to the doctor: Torn tendons..lovely. Six weeks in walking cast..ugh. The pain never went away. I can't stand for more than 5 minutes without having severe stiffness in my lower back. In tandem with my back pain, my hip suddenly sparked back into pain fits and the limping began again. Because of this, I haven't been able to work or even keep a decent apartment.. I think I became a recluse. I set an appointment with the best arthritis doctor in my area (southern TN), but because of their busy schedule I had to wait until last Monday. Here is the kicker.. this doctor got my medical report from the ER in January. NOWHERE in the report does it state a " lower lumbar sprain " . It only states that I have " Degenerative Disc Disease in the 3rd & 4th lumbar discs " . I cannot even begin to tell you the ANGER I felt and still feel about this. Had I known it was that, I would have done everything in my power to get to a doctor immediately instead of waiting 3 months..grr. I have been placed back on an anti-inflamatory, " Tolmetin " 600 mg twice a day, for three weeks. Because I don't have insurance, my doctor is trying to treat this like arthritis first, then we will decide when I go back if an MRI is needed to further investigate. I regret to say this, but my back pain has not ceased one little bit. My hip however, feels great. I have been given exercises to try to strengthen my back, but my pain has been so terrible I can only make a pitiful attempt to do them. I have also noticed that I am tired constantly. I'm not sure if this is depression setting in or if it's the PA. I have been treating my " moderate " psoariasis with Ultravate for about two months. The lesions are COMPLETELY GONE with the exception of my scalp. I haven't seen anyone posting about his drug, and I thought I would throw it out there because it has worked wonders for me. I have had the same lesions in certain areas (knees, elbows, ears) since I was a kid and this was the only medication that completely cleared it up (YES!). So this is my story, not as terrible as some I have read on the PA website.. but just as frustrating. I am trying to once again get out of this mental funk.. and I think I have found the group to help pull me through. Again, my apologies for the " Anthology " but I think this was good therapy for me in a way to finally get it all off my chest. Thank you for this forum, and I look forward to chatting with you all soon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2000 Report Share Posted April 3, 2000 Hi , I too gave up meat a few years ago and it changed my life. I too lost 55 pounds and was drug free. This winter I had to take celebrex but just to maintain. I am nowhere near as bad as I used to be. My P aslo improved. Small world. Glad to hear it has helped others. maria. ----Original Message Follows---- From: shelly12@... Reply- egroups onelist Subject: [ ] I'm also new Date: Mon, 03 Apr 2000 03:18:11 -0000 Hello everyone. My name is . I'm 29 years old and I have had psoariasis since I was two years old (after I caught pnuemonia). I don't mean to go on and on here, but this is the first time in my life I feel like I have actually connected with a group of people like me, so I apologize in advance if I write a small novel When I was in the fourth grade, I would wake up at night with terrible pains in my hip. My parents took me to many doctors in the Denver area to try to find out what was wrong with me. Well, to make a long story short, I was MIS-diagnosed up until the age of 17. I was told I was simply growing too fast.. possibly had bone cancer, etc and so on. Not until I was 17 did I know what was truly wrong with me - psoariatic arthritis. By this time, my right hip and sacriliac joint were calcified and the tendons along my hip had atrophied. My pubic bone is fused and the right side is a tad deformed as well. This doctor then told me that I was most likely facing multiple hip replacements and there was a good chance it would spread to my spine (I guess you can imagine I freaked). He then topped off my day of gloom and doom with the side statement that wheelchair life would be a good possibility by my mid-twenties. Thinking that my life was at an end and just deciding that I would never be able to run again or even sit indian style, I tried to accept it. This of course, proved more difficult than I had thought. I went into a deep depression and my weight skyrocketed from 135 lbs to over 200 in the span of two years. I was taking every type of NSAID (excluding those with sulfa because I am allergic to it) and tons of stomach medication. When I was 25, I decided that enough was enough. I totally changed my lifestyle. I stopped eating meat altogether, and I took the bold move to completely stop my medications for the PA. Amazingly, I got better, and lost the weight (down to 145 - perfect for my height). I was excercising without pain for the first time since I was a child. Note: I wasn't going to any doctors for either the PA or the P at this time either. I think my mental attitude helped A LOT with my " remission " , though my psoariasis was still ever present. So here I am now, four years later and I feel like the world has just crashed down on my shoulders again. In January, I got a terrible pain in my back. Thinking it I just pulled it, I treated it with a heating pad and tried to take it easy for a few days. Two days later, I couldn't even stand up straight and my right leg was going numb. The pain was so severe, I was forced to take a trip to the ER. The result: " A Severe Lower Lumbar Sprain " . I was instructed to not lift anything heavier than a fork for two weeks and if the pain still persisted, seek further help. Two days later, I stood up from sitting at the computer, placed weight on my right foot and rolled my ankle. My leg was completely numb.. another trip to the doctor: Torn tendons..lovely. Six weeks in walking cast..ugh. The pain never went away. I can't stand for more than 5 minutes without having severe stiffness in my lower back. In tandem with my back pain, my hip suddenly sparked back into pain fits and the limping began again. Because of this, I haven't been able to work or even keep a decent apartment.. I think I became a recluse. I set an appointment with the best arthritis doctor in my area (southern TN), but because of their busy schedule I had to wait until last Monday. Here is the kicker.. this doctor got my medical report from the ER in January. NOWHERE in the report does it state a " lower lumbar sprain " . It only states that I have " Degenerative Disc Disease in the 3rd & 4th lumbar discs " . I cannot even begin to tell you the ANGER I felt and still feel about this. Had I known it was that, I would have done everything in my power to get to a doctor immediately instead of waiting 3 months..grr. I have been placed back on an anti-inflamatory, " Tolmetin " 600 mg twice a day, for three weeks. Because I don't have insurance, my doctor is trying to treat this like arthritis first, then we will decide when I go back if an MRI is needed to further investigate. I regret to say this, but my back pain has not ceased one little bit. My hip however, feels great. I have been given exercises to try to strengthen my back, but my pain has been so terrible I can only make a pitiful attempt to do them. I have also noticed that I am tired constantly. I'm not sure if this is depression setting in or if it's the PA. I have been treating my " moderate " psoariasis with Ultravate for about two months. The lesions are COMPLETELY GONE with the exception of my scalp. I haven't seen anyone posting about his drug, and I thought I would throw it out there because it has worked wonders for me. I have had the same lesions in certain areas (knees, elbows, ears) since I was a kid and this was the only medication that completely cleared it up (YES!). So this is my story, not as terrible as some I have read on the PA website.. but just as frustrating. I am trying to once again get out of this mental funk.. and I think I have found the group to help pull me through. Again, my apologies for the " Anthology " but I think this was good therapy for me in a way to finally get it all off my chest. Thank you for this forum, and I look forward to chatting with you all soon ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2000 Report Share Posted April 3, 2000 On Sun, 02 April 2000, shelly12@... wrote: > Hi and everyone else, I am also new and would like your opinion. I've had moderate psoriasis since I was about 3 (don't know from whom or how I got it). About 8 years ago (I'm now 30), I started popping the cartiledge in my neck--constantly--I mean almost every minute. Around the same time I developed horizontal ridges in my thumbnail. Psoriasis in the nails seems to be defined as pitting in the nails--are horizontal ridges considered the same? For the last several years, I have also been popping my wrists and ankles. I just had my second child 7 months ago, and recently developed a horrible lower back pain with pain also shooting down both sides of my legs. I finally went to a chiropractor and x-rays of my hips showed some calcium build-up which he originally said was common for many women 6-18 months after childbirth because of condensation(?). However, just a few days ago, we both happened to come across information on psoriatic arthritis and it sounds like this could easily be what I have. My back pain has actually pretty much gone away except for some tenderness is isolated areas in my lower back. But my neck, wrists, and ankles or still popping all the time. He's going to take some x-rays of these areas next week. I wasn't able to get an appt. with a rheumatologist until the middle of May. My psoriasis is still present (of course), but light treatments have been helping to clear the flare up on my arms and legs from the pregnancy. Any opinions? Suggestions? I'm scared now of what this could mean for me over the next few years to come. Thanks for letting me chat. Diane > Hello everyone. My name is . I'm 29 years old and I have > had > psoariasis since I was two years old (after I caught pnuemonia). I > don't mean to go on and on here, but this is the first time in my > life > I feel like I have actually connected with a group of people like me, > so I apologize in advance if I write a small novel > > When I was in the fourth grade, I would wake up at night with > terrible > pains in my hip. My parents took me to many doctors in the Denver > area to try to find out what was wrong with me. Well, to make a long > story short, I was MIS-diagnosed up until the age of 17. I was told > I > was simply growing too fast.. possibly had bone cancer, etc and so > on. > Not until I was 17 did I know what was truly wrong with me - > psoariatic arthritis. By this time, my right hip and sacriliac joint > were calcified and the tendons along my hip had atrophied. My pubic > bone is fused and the right side is a tad deformed as well. This > doctor then told me that I was most likely facing multiple hip > replacements and there was a good chance it would spread to my spine > (I guess you can imagine I freaked). He then topped off my day of > gloom and doom with the side statement that wheelchair life would be > a > good possibility by my mid-twenties. Thinking that my life was at an > end and just deciding that I would never be able to run again or even > sit indian style, I tried to accept it. This of course, proved more > difficult than I had thought. I went into a deep depression and my > weight skyrocketed from 135 lbs to over 200 in the span of two years. > I was taking every type of NSAID (excluding those with sulfa because > I am allergic to it) and tons of stomach medication. > > When I was 25, I decided that enough was enough. I totally changed > my > lifestyle. I stopped eating meat altogether, and I took the bold > move > to completely stop my medications for the PA. Amazingly, I got > better, and lost the weight (down to 145 - perfect for my height). I > was excercising without pain for the first time since I was a child. > Note: I wasn't going to any doctors for either the PA or the P at > this time either. I think my mental attitude helped A LOT with my > " remission " , though my psoariasis was still ever present. > > So here I am now, four years later and I feel like the world has just > crashed down on my shoulders again. In January, I got a terrible > pain > in my back. Thinking it I just pulled it, I treated it with a > heating > pad and tried to take it easy for a few days. Two days later, I > couldn't even stand up straight and my right leg was going numb. The > pain was so severe, I was forced to take a trip to the ER. The > result: " A Severe Lower Lumbar Sprain " . I was instructed to not lift > anything heavier than a fork for two weeks and if the pain still > persisted, seek further help. Two days later, I stood up from > sitting > at the computer, placed weight on my right foot and rolled my ankle. > My leg was completely numb.. another trip to the doctor: Torn > tendons..lovely. Six weeks in walking cast..ugh. > > The pain never went away. I can't stand for more than 5 minutes > without having severe stiffness in my lower back. In tandem with my > back pain, my hip suddenly sparked back into pain fits and the > limping > began again. Because of this, I haven't been able to work or even > keep a decent apartment.. I think I became a recluse. > > I set an appointment with the best arthritis doctor in my area > (southern TN), but because of their busy schedule I had to wait until > last Monday. Here is the kicker.. this doctor got my medical report > from the ER in January. NOWHERE in the report does it state a " lower > lumbar sprain " . It only states that I have " Degenerative Disc > Disease > in the 3rd & 4th lumbar discs " . I cannot even begin to tell you the > ANGER I felt and still feel about this. Had I known it was that, I > would have done everything in my power to get to a doctor immediately > instead of waiting 3 months..grr. > > I have been placed back on an anti-inflamatory, " Tolmetin " 600 mg > twice a day, for three weeks. Because I don't have insurance, my > doctor is trying to treat this like arthritis first, then we will > decide when I go back if an MRI is needed to further investigate. I > regret to say this, but my back pain has not ceased one little bit. > My hip however, feels great. I have been given exercises to try to > strengthen my back, but my pain has been so terrible I can only make > a > pitiful attempt to do them. I have also noticed that I am tired > constantly. I'm not sure if this is depression setting in or if it's > the PA. > > I have been treating my " moderate " psoariasis with Ultravate for > about > two months. The lesions are COMPLETELY GONE with the exception of my > scalp. I haven't seen anyone posting about his drug, and I thought I > would throw it out there because it has worked wonders for me. I > have > had the same lesions in certain areas (knees, elbows, ears) since I > was a kid and this was the only medication that completely cleared it > up (YES!). > > So this is my story, not as terrible as some I have read on the PA > website.. but just as frustrating. I am trying to once again get out > of this mental funk.. and I think I have found the group to help pull > me through. Again, my apologies for the " Anthology " but I > think this was good therapy for me in a way to finally get it all off > my chest. Thank you for this forum, and I look forward to chatting > with you all soon > > > > Please visit our new web page at: > http://www.wpunj.edu/icip/pa > > and attend our weekly chat on Dr Koop at > 7 PM EST on Monday evenings!! > Go to the www.Dr.Koop.com website ahead of time and register as a user that way you can come right in on Monday nights. Hope to see you there > at the chat!!! Signup for your free USWEST.mail Email account http://www.uswestmail.net Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2000 Report Share Posted April 3, 2000 Hi . I'm also new. I have had psoriasis since I was a teenager. I first noticed it right after I had my first child who was born when I was 18 years old. It has gotten progressively worse over the years. My son now has it. My dad, brother, grandfather, and paternal aunt all have psoriasis. I may be the only one to also have PA. I was diagnosed with it several years ago. In the last month I have had a severe reoccurence of PA. I hurt all over. All my bones and joints ache. I am trying to find a doctor here in S. Georgia. That is why I joined this group to find help for this problem. I hope yours gets better. I have noticed that when the skin condition worsens, the PA worsens too. I also have good success with sunshine therapy, not just artificial ultraviolet light. I have a swimming pool in the back yard especially for treating psoriasis and PA. It helps a lot in the summer time. It doesn't do any good just sitting there all winter, but I do use ultraviolet light inside then. Write me back. I enjoyed your report. Love, Ann Quote Link to comment Share on other sites More sharing options...
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