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Thread: Who Knows.....?

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    Default Who Knows.....?

    I'm a 53 year old woman, and I was diagnosed with fibromyalgia 28 years ago. I began seeing a world renowned rheumatologist, Dr. Alfonse Masi (whose partner is Dr. M. Yunus, the "father of fibromyalgia", the one who came up with the criteria for diagnosing fibromyalgia). Twice a year, I would see him and he would make suggestions but never really did anything else. I was on the usual meds, Elavil & an NSAID. Every now and then he would run blood work on me, and every time he would say....You are borderline high on SED rate & CRP....just a smidgen higher, & you would have a lupus or RA diagnosis. I have been told this for 28 years. I know the inflammation is high, because I feel like I'm on fire. My feet feel like they are walking on hot coals, and my toe joints are swollen. My ankles joints are swollen. My finger joints are swollen. I also have osteoarthritis in my hands.

    I have had alot of autoimmune disorders in my lifetime. I started out with Graves hyperthyroidism, which was treated with the radioactive iodine to obliterate my thyroid. Then came the endometriosis. Then I spent 2 years trying to figure out why my body hurt all over ~ and I finally got a fibromyalgia diagnosis. I also have carpal tunnel, plantar fasciitis, tendonitis, eye problems, high blood pressure, chronic sinus issues, sleep apnea.

    I have fatigue like a sledgehammer that hits me every single day....sometimes within hours of getting up in the morning. I call it the "crash". I start to crash usually in the afternoons and throughout the early evening. Sometimes I can nap and that helps but even a nap doesn't help sometimes.

    I have never met the criteria for lupus or RA but I've come about as close as you can come. I have the tell-tale butterfly rash, sometimes it's so bright red I can't believe it. I believe that I have lupus from all that I have read but the docs continue to say, nope.

    The only reason I want a diagnosis is so that they can treat me for this inflammation. I feel like I am burning up inside. I want the meds for lupus to see if they would help me feel better. But of course, they won't give them to me without an official lupus diagnosis.

    So......I have sort of given up trying to get this acknowledged. I have been borderline lupus for half of my life. I'm tired and worn out. I am getting to the point where I am just doing the best I can every day and keeping my antique business running with the help of my husband (who is wonderfully supportive, thank god). I do pretty good considering, but I am virtually disabled due to the burning pain in my feet. I use a scooter now when we go places that will require alot of walking. I stay home most all week long, unless it's a quick trip somewhere to run a quick errand. I run my business online as well as a brick & mortar shop, and have done this for 13 years. I rent a booth in the shop so I don't have to be there, I just have to keep fresh merchandise coming in and I have to keep my booth arranged nicely. I could not possibly continue to do this without the help of my husband.

    A friend I met on Twitter recommended this site to me. We talked and she feels I have lupus, as I do too. I just wish I could get some meds so I could have a better quality of life. I take Mobic, which is just an NSAID. It takes the edge off for about 6 or 7 hours, then it sort of fades. It's like putting a bandaid on a broken leg....not much help.

    So......that's my story. I just wanted to come for support and to learn more about lupus. Maybe someone can come up with something to say to a doc to cause them to accept that I might have lupus and try me on some of the meds. I do have a pretty open minded regular doc who has chronic pain himself. But he has not acknowledged that I might have lupus.

    Anyone have any suggestions?
    Last edited by porchy; 08-05-2009 at 11:38 PM.

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    First of all, welcome to WHL. You should be grateful to your friend, who told you about this forum, it is THE best.
    Reading what your symptoms are, I would guess that you have lupus. I am also 53 and have Lupus, RA and Fibro, I was diagnosed about two years ago. I am on Plaquanil and NSAIDS and I always say, that it doesn't help, because I still have alot of pain and long, constant flares. But how bad would I be, without the meds?
    Through all these years, have you only seen this one rheumy? If so, you should get a second opinion. I hope that you will get your answers soon.

    Debbie

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    hi porchy,

    first, welcome to our world-wide family....this is the place where members are never judged, always accepted, and where we dish out compassion like chocolate syrup on ice cream.....You will find a tremendous amount of knowledge among our members, and so please feel free to ask about anything.

    I am 57, was diagnosed with fms 13 years ago, and just this past October, i was diagnosed with lupus. My ANA has continuously been high, but i did not meet the physical criteria necessary for a diagnosis. So, for years, my dr. treated me with fms, but always knew that something else was going on. I must say, since my diagnosis, i have started treatment options that have truly helped me feel a little better. I wish this beastly illness could more easily be diagnosed.

    I realize that your dr. is "world renouned" in fms, but maybe you need to get a second opinion about the lupus. Sure sounds to me like lupus symptoms, but the auto immune diseases can sometimes overlap and make it difficult to determine exactly which one is present.

    As a young mother, i too had endometriosis, leading to a hysterectomy and then i experienced early menapause at the age of 32. My feet and hands burn and feel like someone is holding them in a burning oven. About mid afternoon, i also hit a wall, and loose all energy. So many of your symptoms are present in many of us.

    I am glad you are pursuing your concerns....this forum is a great place to start.
    Phyllis

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    Hi debbie-b & mountaindreamer ~ thanks so much for your responses. I appreciate you taking the time to share with me.

    Actually I did see another rheumy after Dr. Masi retired. He, too, ran the bloodwork and mentioned that it showed high inflammation. But that's all he said. Just that it was high.

    I also have concerns about my thyroid meds and if they could be causing this crushing fatigue, along with fibro, and poss. undiagnosed lupus. I just have so much going on, it's hard to know where to begin. I have gotten so discouraged over the years....trying to seek help for half of my life and getting virtually nowhere....it gets frustrating, and I am running out of the energy it takes to keep looking. I am almost to the point of saying To hell with it, I'll just live out the rest of my life and stop trying to find that elusive "magic cure".

    I could ask my regular doc if he could run the tests one more time and see what he finds. I'm going to tell him about this forum, and that I seem to fit in with the "lupus profile" and that some people with lupus think that I might have it. Next time I see him, I will talk to him about it.

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    hi porchy,

    i have noticed that a lot of our members are finding great succes when they use one of the medical clinics such as Mayo Clinic, and i know there are some in New York, North Carolina, etc. I have seen reference to many around the country, so you might want to check for any of these in your area. I have even seen where people go to lupus clinics,but i don't know where these are located. In 1996, i went to the Mayo Clinic in Florida, and i was 100% happy with the care that i received. I went in with an appointment with a rheumatologist...he was fantastic and diagnosed the fms, then he sent me to a series of specialists to have different things checked. The appointments, lab works, various tests, were scheduled with precision, and i was always treated with respect. It appears that many people are having success with these speciality clinics. I hope there is one close to you, it might require that your dr. get you in, I know the Mayo requires a physician referral.

    I just hope you can find some help really soon....i know you are getting weary, and i certainly understand why. Living with something that is seemingly taking your life away from you, but no one can tell you what is happening, results in living with constant fear and stress.

    You can relax, take a few deep breaths, because we are here to help you. I joined this forum shortly after diagnosis, i was ready to give up on life and move into an assisted living facility. Since joining this incredible family, i have educated myself about lupus and my options, i have found support and compassion from people who really understand, and i realized that whereas i do have to make some adjustments, i can continue to live my life.

    hope you are having a good day today.
    Phyllis

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    I'm with Phyllis -- my recc would be to try to get into one of the big med centers with a good rheumatology program. They often use a 'team' approach that's a lot more holistic, and they tend (at least at Duke, where I go) to not worry so much about the label, but about how they can solve your problems.

    In the end, it doesn't matter if you have lupus or not, you should be getting treated - you obviously have all kinds of AI issues and there's probably not a single name for what you have but to a good doctor/team, that won't matter.

    Good luck!
    Brian

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    Yes.....that's a great idea, going to Mayo's. The closest one is in MN. I'm in IL. It seems so far away. If I go, it better be quick. My hubby's job is very tentative right now, things are very bad. He's with a big national trucking company and they are in financial trouble. They've already taken 15% of his wages away and some other take-aways, trying to keep from going bankrupt.

    If the place closes down, we will have NO insurance. And I will be screwed. I hold my breath every day when he comes home, wondering if he is going to tell me he got a pink slip.

    I might check around and see if there is anything closer to home. I know my reg. doc would give me a referral to anywhere I wanted to go.

    Thanks y'all.......I really appreciate your ideas and caring.

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