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Thread: Hi, Everyone!

  1. #11
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    Quote Originally Posted by lrs76 View Post

    How has the lupus affected your running? I am assuming you are a runner based on your name I was into running for about ten years and then it tapered off over the past ten years but I keep hoping I can get back into it. Maybe once the Plaquenil kicks in and my joints are better, I might be able to start back up again. I started Pilates two months ago and really think that has helped my joints.
    I love to run and so far I have been able to keep going. I've never been fast but I enjoy the exercise. About a year ago it became really difficult to keep up. I get winded quickly and have had to slow right down. I used to run long distances but now just try to do a few kilometers every couple of days. It wasn't until May, when I learned about lupus that I figured it is probably why I'm having trouble.
    Luckily I don't suffer from the joint pain that so many here do. My knees bug me sometimes, but I always assumed that was from the running. My fingers and wrists bother me. So for now I will keep running and pray I can keep it up.

    How do you like the pilates? I have always wanted to try it, but I'm not very flexible.

    Well you certainly have a good attitude. Do take care.

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    Hi Irs76, welcome! I know you will find great friends support here. I have a wonderful rheumy and I travel hours to get to her, but she is worth it. I have hoshimotos from the lupus. It can only be diagnosed with blood test for antibodies attacking the thyroid & ultrasound. T3&4 were within normal limits. The symptoms, were, not joint related. Muscle spasms, extreme fatigue, sleeplesness, hair loss, dry skin & eyes, broken nails, etc. Hope this helps.

  3. #13
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by lrs76 View Post
    I am very happy to have discovered this site. After years of wondering what was going on with my health, I finally feel like I have some answers.

    Before a month ago, I knew very little about lupus. Two people at work also have it, but I don't have much opportunity to talk to them about it, so I hope to meet some more people who can relate to what I am going through.

    ...snipped for brevity...
    Anyway, sorry to ramble, just wanted to say "hi" and I look forward to meeting some new people
    Hi lrs76,

    I'm no expert, but I do have some practical experience from living with SLE for 7 years, and from being a moderator here for two. I've been through over a dozen rheumo's since my diagnosis. My opinion is, that you found a gold nugget with the first Rheumatologist. A good rheumo who knows Lupus and will spend time with the patient, is a rare thing indeed. I'd stick with her.

    The second one, sounds like your typical, ignorant, "I won't give a diagnosis because I have to cover my incompetent ass all the time" type of person who does not deserve the title Rheumatologist. I have seen them far too many times, and have read about them even more times in the stories of people here over the years. To just flippantly say "if you have it at all", is a big red flag in my book. For her to simply dismiss a fellow rheumo's diagnosis right off the bat without even studying the test results, or listening to you talk about your symptoms in detail, is arrogant, and foolish. Handwaving away a serious diagnosis based on nothing more than personal incredulity, doesn't cut it.

    In regards to second opinions, yes, second opinions are important, and it's everyone's right to seek one, or more. I will never discourage anyone here from seeking a second opinion. However, are you getting a second opinion from another rheumo with such outstanding qualifications as your first one? I don't think you are. A second opinion is a good thing if it comes from another similarly qualified individual. However, good, competent rheumatologists are rare, and finding two good ones within a few hundred miles of each other is like finding a needle in a haystack.

    You mentioned your "gut instinct". My opinion on gut feelings, or gut instncts is simple. Go with it, and trust it. You know yourself, you know your body. Trust what it's telling you.

    As for a second opinion helping family accept a diagnosis of Lupus, it did not work for me with my family. What did work, was telling them yes, I have this thing, I am learning to accept it and deal with it, and you need to do the same. End of conversation thank you very much.

    My diagnosis was pretty much a slam dunk and I felt no need to seek a second opinion, however I was required to have the diagnosis verified by another rheumo when I applied for disability, so in a way, I did get a second opinon. The second rheumo verified that I do indeed have SLE.

    So, those are my thoughts. I'm glad you found us. Welcome to WHL!

    Rob

    PS-You need to clone that first rheumo and send a couple of copies to every state in the the union, and ship a few to our friends downunder, in the U.K., and up in Canada too!
    Last edited by rob; 08-07-2011 at 10:05 AM.

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    Quote Originally Posted by running girl View Post
    I love to run and so far I have been able to keep going. I've never been fast but I enjoy the exercise. About a year ago it became really difficult to keep up. I get winded quickly and have had to slow right down. I used to run long distances but now just try to do a few kilometers every couple of days. It wasn't until May, when I learned about lupus that I figured it is probably why I'm having trouble.
    Luckily I don't suffer from the joint pain that so many here do. My knees bug me sometimes, but I always assumed that was from the running. My fingers and wrists bother me. So for now I will keep running and pray I can keep it up.

    How do you like the pilates? I have always wanted to try it, but I'm not very flexible.

    Well you certainly have a good attitude. Do take care.
    Hi!
    That's great that you are able to keep up with the running - even though you have had to slow down it is still good that you are keeping with it. I too have noticed that with cardio - I used to easily be able to do a couple of hours of high intensity but over the past couple of years, find that sometimes I have chest constriction and get winded. Or, if I am having a good breathing day, my joints might ache. Good days and bad days seem to be the rhythm. However, I love exercise and will keep plugging away at it even if I have to move slower or less. You too have a good attitude and I think that really goes a long way.

    I love Pilates and am hooked. I had always wanted to try it but it was pretty pricey at the gym I go too and there weren't studios in my area. My neurologist who saw me prior to the lups diagnosis recommended it because while she ruled out MS, did say I had "neuromuscular skeletal" problems (left leg numbness, arthritis) and that Pilates would be great. I found a studio in town that had been open for about a year and went for a demo and signed up that day for an unlimited monthly membership. Not cheap, but I figure the health benefits will far outweight the cost. It also motivates me to go often so that the price per session is low. The great thing about Pilates is that even if you don't have flexibility to start, it will get there with time. I am not the most coordinated or flexible person but have really noticed a difference. I go after work and find that it is also a great stress relief after a long day at work. Plus, I've met some great new people too (class sizes are four). Now I just need to get back into some more cardio as I kind of let that lapse a little.

    Nice to meet you
    Leila

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    Quote Originally Posted by lovedbyHim View Post
    Hi Irs76, welcome! I know you will find great friends support here. I have a wonderful rheumy and I travel hours to get to her, but she is worth it. I have hoshimotos from the lupus. It can only be diagnosed with blood test for antibodies attacking the thyroid & ultrasound. T3&4 were within normal limits. The symptoms, were, not joint related. Muscle spasms, extreme fatigue, sleeplesness, hair loss, dry skin & eyes, broken nails, etc. Hope this helps.
    Hi!
    Thank you for the welcome. That's great that you too have a great rheumy. Sorry to hear that you have thyroid problems - thank you for the info on it - I have an appt. with my primary Tuesday and am going to ask him about getting my thyroid checked. I think my T4 was high on one blood test and about 8 years ago, I did have thyroiditis so maybe that is happening again.

    Nice to meet you - I have started catching up on posts and you always have great things to say so I appreciate your words.



    Take care,
    Leila

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    Quote Originally Posted by rob View Post
    Hi lrs76,

    I'm no expert, but I do have some practical experience from living with SLE for 7 years, and from being a moderator here for two. I've been through over a dozen rheumo's since my diagnosis. My opinion is, that you found a gold nugget with the first Rheumatologist. A good rheumo who knows Lupus and will spend time with the patient, is a rare thing indeed. I'd stick with her.

    The second one, sounds like your typical, ignorant, "I won't give a diagnosis because I have to cover my incompetent ass all the time" type of person who does not deserve the title Rheumatologist. I have seen them far too many times, and have read about them even more times in the stories of people here over the years. To just flippantly say "if you have it at all", is a big red flag in my book. For her to simply dismiss a fellow rheumo's diagnosis right off the bat without even studying the test results, or listening to you talk about your symptoms in detail, is arrogant, and foolish. Handwaving away a serious diagnosis based on nothing more than personal incredulity, doesn't cut it.

    In regards to second opinions, yes, second opinions are important, and it's everyone's right to seek one, or more. I will never discourage anyone here from seeking a second opinion. However, are you getting a second opinion from another rheumo with such outstanding qualifications as your first one? I don't think you are. A second opinion is a good thing if it comes from another similarly qualified individual. However, good, competent rheumatologists are rare, and finding two good ones within a few hundred miles of each other is like finding a needle in a haystack.

    You mentioned your "gut instinct". My opinion on gut feelings, or gut instncts is simple. Go with it, and trust it. You know yourself, you know your body. Trust what it's telling you.

    As for a second opinion helping family accept a diagnosis of Lupus, it did not work for me with my family. What did work, was telling them yes, I have this thing, I am learning to accept it and deal with it, and you need to do the same. End of conversation thank you very much.

    My diagnosis was pretty much a slam dunk and I felt no need to seek a second opinion, however I was required to have the diagnosis verified by another rheumo when I applied for disability, so in a way, I did get a second opinon. The second rheumo verified that I do indeed have SLE.

    So, those are my thoughts. I'm glad you found us. Welcome to WHL!

    Rob

    PS-You need to clone that first rheumo and send a couple of copies to every state in the the union, and ship a few to our friends downunder, in the U.K., and up in Canada too!
    Hi, Rob
    Thank you so much for the welcome and for the great words of advice - you are a great writer. I would love to clone my first rheumy - I'll have to tell her that when I see her again in September - I'm sure she'll appreciate it

    I'm sorry to hear that you have had to live with SLE for 7 years - and that you too have had your fair share of doctors. I was surprised by the second rheumy as well to brush off all of the work done by the first. I spoke briefly with my co-worker that also has lupus and she told me that this had been her rheumy but that she stopped seeing her because she didn't like her attitude. So, I think that despite the second doctor's long experience and PHD, I will classify her as ignorant and dismiss her completely

    It's great to meet you - I am so happy to have found WHL.

    Leila

  8. #17
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    Quote Originally Posted by lrs76 View Post
    Hi!
    That's great that you are able to keep up with the running - even though you have had to slow down it is still good that you are keeping with it. I too have noticed that with cardio - I used to easily be able to do a couple of hours of high intensity but over the past couple of years, find that sometimes I have chest constriction and get winded. Or, if I am having a good breathing day, my joints might ache. Good days and bad days seem to be the rhythm. However, I love exercise and will keep plugging away at it even if I have to move slower or less. You too have a good attitude and I think that really goes a long way.

    I love Pilates and am hooked. I had always wanted to try it but it was pretty pricey at the gym I go too and there weren't studios in my area. My neurologist who saw me prior to the lups diagnosis recommended it because while she ruled out MS, did say I had "neuromuscular skeletal" problems (left leg numbness, arthritis) and that Pilates would be great. I found a studio in town that had been open for about a year and went for a demo and signed up that day for an unlimited monthly membership. Not cheap, but I figure the health benefits will far outweight the cost. It also motivates me to go often so that the price per session is low. The great thing about Pilates is that even if you don't have flexibility to start, it will get there with time. I am not the most coordinated or flexible person but have really noticed a difference. I go after work and find that it is also a great stress relief after a long day at work. Plus, I've met some great new people too (class sizes are four). Now I just need to get back into some more cardio as I kind of let that lapse a little.

    Nice to meet you
    Leila
    Nice to meet you too! You've convinced me to give palates a try. I'm not sure how much longer I will be able to run, as least not in this heat. There is a studio very close to my house. I'll have to check it out.

    take care,
    Brenda

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    PS-You need to clone that first rheumo and send a couple of copies to every state in the the union, and ship a few to our friends down under and up in Canada too!

    Oooh! OOoh! I agree! Send one here please! Please please please - I would love one! (;

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  11. #19
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    Welcome, lrs! I'm sorry you were diagnosed with Lupus but glad you're looking for help and support! It's a lot to wrap your mind around and most people just don't understand!

    As for your question about a second opinion, my answer is no. Sort of, lol. I don't live in a huge city so there's never been more than one rheumatologist in my area. And you're not always guaranteed that the one rheumatologist will be good! So, no, I haven't really gotten more than one rheumatological opinion but other docs have weighed in.

    Frankly, if you've got a fabulous rheumatologist, you're very lucky! They're in high demand and short supply! Sometimes a second opinion is a great idea and other times it's a waste of money and time. Only you can decide what you need and you need to make yourself happy and comfortable. If I might be so bold, don't feel that it's your job to make your family and friends comfortable with your health situation and decisions. It's not. To be honest, you're going to have enough of a challenge weighing your own decisions and you need people around who will be supportive of you, not challenging you or adding stress.

    My mother used to call me and cry about me and my health. It upset me greatly. On one occasion, the night before I was scheduled to have surgery (and, no, she wasn't coming to help because traveling "made her nervous"), she called me, started weeping, and started the "what-if litany:" What if they paralyze you? What if you don't wake up after surgery? What if they find something else wrong? I finally had to shriek, "STOP IT!" and then tell her as calmly as I could that I was trying to be strong and brave for myself and my son and I really didn't have the energy to be strong and brave and deal with her hysterics, as well. So if she couldn't call and be even slightly calm and supportive than it's better if she didn't call.

    For the most part, it worked. Every now and then I'd have to remind her. But it was important to establish boundaries and let family know what was and wasn't helpful. I think everyone with a serious illness needs to establish those boundaries sooner rather than later. Illness can unintentionally invite drama, lol. I wish you well!

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