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Thread: okay, I am confused

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    Default okay, I am confused

    I went to my regular 2 month checkup with the rheumie today, and I told him that the Plaquenil seems to be helping with the chronic fatigue but that I am having horrible pain in several joints and some swelling my wrists, shoulders, hands, knees and toes. I also advised that my PCP did some blood tests and suggested that I probably have RA, and that would explain the joint pain. My pain level is pretty high and the range of motion in several of the painful joints is pretty low.

    My rhuemie doc said that does not believe I have RA, that he thinks I may have Fibromyalgia with my Lupus and that he wanted to strongly caution me that I have "MILD" Lupus. He said that he discouraged me from participating in any kind of support group because he felt it would just put bad ideas in my head and make me feel symptoms that I may not have. When he looked at my painful joints, he said that he did not see swelling (I can't get my 12 year old wedding ring on at all for the first time ever!) and that he wasn't even sure that it was really joint pain. Then he suggested that there might be some stronger anti-inflammatory that he could give me (I currently take Mobic once a day) but that he didn't even want to suggest it and abruptly dropped the subject. He said "take tylenol, keep taking the anti-depressants at night, keep up with the plaquenil, take the anti-depressants for sleep, and you will feel much better in two more months. Oh and stay out of the sun and wear gloves for the Raynauds". Then he squeezed my shoulder and congratulated me for putting up with "so much" like a trooper, ordered blood work, and sent me on my way.

    I am confused. What is "mild lupus"? He never mentioned that before. How can Fibromyalgia be mixed with Lupus? How can one doctor see the markers for RA and the other doctor not see them? I would rather not have it, but if I do, I would rather not ignore it either. I guess I am just frustrated because I am in pain, and he wasn't as helpful as I hoped, but I really don't know what I expected him to do. Am I crazy? Did I expect too much?

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    No, you are not crazy... :bad-words: First of all, why is your rheumie discouraging you from joining a support group?? Does he think we're brainwashing you into believing that you are sick and in pain? Does he think you're making all this up and its all in your head? :roll: I think you know yourself if you're not feeling well, why would you want to pretend you're in pain. :? And if you can't put your ring on your finger because of swelling, and he says you have no swelling. Oh gosh! I think its time to get a second opinion or a new rheumie who'll be more understanding.

    After doing some research, I found out there is MILD LUPUS and SEVERE LUPUS. Mild lupus may not require treatment. It usually involves a rash, joint pain, and fatigue. In other words, major organs and organ systems are not affected. Severe lupus requires treatment (ex. kidney complications) usually involves other organ systems.

    Hope this helps you out.
    "I've learned that when bad times come, you can let them make you bitter or use them to make you better."

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    Hi Peach:

    I am no authority of your situation, and I am sure others are more qualified to speak about the specifics but I can share with you my own experience. First of all I have had fibro for almost 20 years. There are specific trigger points in the body that if painful (in so many of them and I forget how many there are 11 I think) coupled with other symptoms they usually dx you with fibro. Remember there is no test that can tell a physician that you have fibro. The pain from that syndrome (they don't even call it a disease) is supposed to be only in the muscles not the joints and not accompanied with any swelling. Some of the other symptoms such as fatigue, brain fog, depression etc. is also part of fibro but can be part of lupus (or many other auto-immune diseases). You can have fibro and lupus at the same time, in fact many people do.

    I too had swelling that would come and go for years and incredible joint pain in all the same places you mentioned. Until my blood work mostly my sed rate and my crp were up did they even believe I had a problem with inflammation. And only when the tests showed inflammination were they even willing to accept the fact that yes, maybe my joints did hurt. When finally, they xrayed at my request they could see damage to the joints. In fact my knees are so damaged that I am awaiting a double total knee replacement surgery presently.

    I too take placquenil, and it helps me also with my fatigue and some of my swelling and pain in mostly my hands but does little for my other joint pain. Oh yes it also keeps my colon from going into a real flare (which according to my rummie she never heard).

    Anyway, my point is keep on pressing for answers but expect they won't come as quickly as you hope. These diseases sometimes evolve over time and remember doctors believe only what they can see at the time.

    The beautifulbeluga

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    Default DON'T YOU JUST LOVE DOCTOR-SPEAK?

    It's like a foreign language. "Mild" lupus in doctor lingo just means you don't have any organ involvement - it doesn't mean that your symptoms are mild or that you don't need to be treated. Doctors refer to illnesses as mild or severe - acute or chronic - that's just their way of classifying illness, Unfortunately they don't explain this well to patients, who are left with the impression the doctor thinks their illness is no big deal.

    Most people with RA have high levels of an antibody called rheumatoid factor in their blood. They generally test for this as part of an antibody panel for lupus, so your rheumie shouuld know whether your test was positive or not. Generally, RA affects the small joints first, but this isn't always true.

    I do think your doctor treated you in a very condescending way by telling you not to participate in a support group. Your doctor should be an advocate for you, and not interject his personal prejudices into your health care. you need to let your doctor know that his attitude bothers you and you feel he is minimizing your concerns. If you still feel he isn't responsive, you might be better off with another doctor.

    It is very common for lupus patients to also develop fibromyalgia, which sometimes makes you feel worse than the lupus. I think the stress of the lupus makes us more susceptible. if your doctor suspects fibromyalgia, he can do a physical examination to see if you have "trigger points" which are typical in fibro.

    It can be really stressful when you are getting conflicting opinions from doctors. You need to ask each doctor what factors he is basing his opinion on, and why he thinks you do or don't have a particular condition. You have a right to ask questions and get answers, and any doctor who is reluctant to answer questions is a doctor to avoid!If necessary, get a third opinion. If there is any possibility you do have RA, you need to know - plaquenil may not be enough to prevent joint damage.

    Most important, don't be afraid to assert yourself as a patient. the doctor works for you, not the other way around!

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    Thanks for the responses. The comments about Sed rate make sense because my PCP told me that it was high two weeks ago and the doc yesterday said he was going to check it again in the current round of tests. He also said he was going to check the rheumatoid factor which has come up both positive and negative over the last six months.

    As for the fibro, he was pushing on various spots on me and pointing out how they were only painful when he pushed. Then he explained the cycle of insomnia, muscle pain, and the muscle pain perpetuating the insomnia. It makes sense that Lupus and Fibro could happen at the same time.

    I guess I am just frustrated with maintaining the status quo for two months and with him acting like what is happening to me right now is "mild".

    Thanks again.

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    hi again Peach:

    What did that mean when he pushed on the trigger points and said "they are only painful"? Is that painful vs. excruiatingly painful, or what? Strange thing to say in my opinion. There is a theory that fibro is caused by a sleep disorder. Personally, I don't believe that. It's one of those things what comes first the chicken or the egg. It is true however that most fibro patients and probably lupus too have sleep problems but does it come first or after. Who wouldn't have chronic sleep problems with constant pain. I personally have not found that my symptoms have improved with more quality sleep. I do suffer from sleep apnea and for years never slept but now I have been dx. I use a CPAP machine and do get some restorative sleep. My symptoms for fibro or CTD have not improved since then only worsned. So much for that theory.

    It does sound like you will have to be patient and wait for your next appointment but I would definately make a list of questions when you go and get answers. Also, ask your doc. what these strange remarks mean? Responses like that from the medical profession are confusing and often leave their patients feeling undermined and miss-understood. With everything else going on you certainly don't need that.

    beautifulbeluga

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    Default YOU MAY NOT BE REACHING A DEEP SLEEP STAGE

    Your sleep cycle every night goes in stages from drowsiness to light sleep to deep sleep (called slow-wave or delta wave sleep) to REM sleep (Rapid Eye Movement, the period of sleep where you dream). Some clinical studies have found that patients with fibromyalgia or chronic fatigue syndrome don't get to the deep or REM stages of sleep. It isn't insomnia because you are asleep - it's just your brain never gets to those deep sleep stages. Tranquilizers and sleeping pills may actually make this probably worse because they often block REM-stage sleep.

    It's a problem because there are certain hormones and neurotransmitters your brain only produces during the last two stages of sleep, so if your brain never gets there, those hormones aren't produced. So you feel sleep-deprived or have other problems even though you may have gptten 8 full hours of sleep.

    A sleep specialist can diagnose this type of sleep disorder with an overnight sleep study, but this is expensive and some insurers won't pay unless the test is to diagnose sleep apnea.

    There are sound therapy machines and CDs available that use musical rhythms to induce delta-wave sleep. They are a pretty good investment for anyone with a sleep problem - you can pick up a CD for under $20 and most sound therapy machines run under $100 - these are also fantastic if you have a baby or young child you can't get to sleep.

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    Default BEAUTIFUL BELUGA, A QUESTION FOR YOU

    TWO QUESTIONS ACTUALLY. First is strictly personal - I LOVE your screen name. I am fascinated by whales - I've been on several whale-watching trips (Alaska, Mexico, B.C., and the Maritimes), but I've never seen a beluga. So if you've been any, I am totally envious.

    Second question is lupus related - you mentioned a double knee replacement. Is your doctor planning on doing both knees at once? I know your medical care there is different from ours because of National Health? Is there a long wait for non-emergency surgery? I have several British friends who tell me this is a big problem there so I wondered if Canada was any better.

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    Hi Mary

    I have never seen a live beluga but when I was a child I remember going to one of our large department stores here in Canada called Eatons. They had a dead beluga on display. What would possess them to display this most beautiful deceased creature in a department store who knows? Apparently, this whale lost its way and ended up comming down the river system from Churchill Manitoba which of course let to its demise. I have always remembered it.

    I absolutely love the water and grew up snorkling and swimming in our bay at the lake just like the beautiful beluga. Today, the water is still my place of peace and security and the only place I am free to move uninhibited. I absolutely have to be near it and in it daily even if its only the bathtub. I swim and do water aerobics 3 - 4 times weekly.

    Secondly, I am white having always to stay out of the sun and thirdly, I know what it is like to lose my way. Just like the beautiful beluga, in Eatons. Fortunately, it has not caused my demise, anyway not yet. Hence the name.

    Yes, I am getting both of my knees done at the same time. Well, not exactly at the same time but 3 or 4 days apart. Both my knees are badly damaged and my OS says if he does one and not the other (and waits a few months) the one knee that is replaced will go back to being bent and will not ever again straighten out. I think it is the decision of your doctor and different OS's have different opinion's. Having an auto-immune disease creates additional problems of course and to say the least I am terrified. But still going to go through with it (probably sometime in September). I am presently awaiting a formal hospital date.

    In answer to your other question. Yes, in Canada we do have to wait quite a while. First you wait to get your first appointment with an OS after your referral from your doctor (in my case it was my family practictioner). Secondly, you wait for you place in line for the surgery. I was told the wait could be up to two years. I saw the OS in February 06 so I am not sure why my name came up so suddenly as I was fully expecting to wait until next summer at least. They were ready to do me this July but I wanted to have allergy testing completed first for the cement and the metal in the component first. Everything has now been completed so I guess it is a go now. The only really problem is that my CTD is really in a flare and all my joints are really causing me problems. Unfortunately, I couldn't get in to see my rhumie prior to my surgery which I would have felt better about but her assistant did run some blood work that mostly turned out ok. Still I would have liked to consult with her as I always end up in this horrible body rash and very ill every time I have even a minor procedure. Also, I just had a day in the hospital with some problem with what they thought was my heart, (couldn't get my breath and chest and back pain). I do understand this surgery is a "big one" and very painful. Iam not sure how I will manage with both knees being done as anyone I know only had one at a time. I would not even risk this if I weren't so mobility challenged as I can't even walk for over a few minutes without having to sit and I am in constant extreme pain day and night.

    My situation however is better than others that post, and for that I give thanks. We do what we have to in order to keep putting one foot in front of the other.

    Thanks for responding.

    the beautifulbeluga

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    Default YOU MIGHT NEED TO GO TO A REHAB CENTER FOR A WHILE

    My best friend had TKR last year for RA - 1 knee only. Her doctor arranged for her to go to a rehab center for three weeks because with the RA in her hands, she couldn't manage crutches safely and had to be in a wheelchair until she ccould use a walker. She said the therapy was a lot worse than the surgery itself, but worth it because she is finally able to walk without pain and climb stairs for the first time in years.

    Both of my knees are painfully bent and drawn up to the point where I cannot lie flat. I have talked to my doctors about knee replacement, but they don't think it would help much because the knee contractures are caused by a spinal cord lesion, so the only permanent solution would be to sever all the tendons and ligaments around my kneecaps. Since i use a wheelchair anyway, the doctors acr like this is no big deal, but I'm against the idea because it would rule out ever being able to walk again, which I still hope to do. So I'm still thinking about tkr as at least a temporary solution.

    I hope your surgery goes well and enables you to walk pain-free. I will be thinking about you, and hoping someday both of us get to see a beluga up close and personal. My littlest niece loves the song "Baby Beluga", so I wish we lived somewhere close enpugh to see a real one.

    Keep up ypur strength and courage - a better day is coming for you!

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