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Thread: What next?

  1. #11
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Tocki,

    I agree with the others that you should see a Rheumotologist. The patchy hair loss is called Alopecia Arreata, and it's actually the symptom that lead to my Lupus diagnosis. I had two half dollar sized patches fall out on the back of my head. After I got my disease activity under control with meds, it grew back, and it has not happened again. Lupus can be very hard to diagnose, as are most autoimmune disorders. You may have to be really persistent in your search for an answer/diagnosis. Don't let anyone tell you it's just all in your head, that's just a lazy doctor cop-out.

    Rob

    PS-Welcome to our group!

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  3. #12
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    Rob, I agree that the doctors are just not interested in diagnosing the problem, I will definitely pursue this until I have an answer. also, I went to a dermatologist about five years ago and got steroid injections in my scalp, about 50 punches with that needle and a massive headache later I decided not to have that done again, I'd rather use my marker!

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    Tocki, I agree with the others that you should see a rheumatologist. They know what tests to run than a family physician wouldn't. Your urine coming back negative does not mean that you do not have Lupus because it is still a possibility. My urine came back negative several times before I had to go see a kidney specialist. Keep track of things and let us know how you are doing. Good luck!

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    welcome, and hi.

    it is good to see you are doing all the right things.
    i agree, ask your doctor now for a referal to the rhuemy. why wait extra months.

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    Hello Tocki,

    How you doing mate and hows your symptoms since you joined, please keep we updated please.

    Terri xxx

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    Sorry I have not updated for awhile. I have not yet been to a rhuemy but went back to my doc Monday. She repeated ANA (negative this time) and did urine test (also negative) and calls to tell me I have Fibromyalgia and to return in a month for a rhuemy referral if the pain has not gone away. I told her I still want the rhuemy referral anyway and she said she would have the scheduling person call with the information. I will wait until tomorrow and call to ask for the info again as no one has called me yet. This is very frustrating. I feel like she should just send me to a rhuemy and stop having me go back and forth to her.

    Anyway, my pain is still bad. Right now I think I am getting sick because my skin is starting to hurt too. I had to leave work early today because i felt so bad and I have been wearing hats and scarves because my bald spot is getting too big to hide :0( What is the difference between fibro and lupus? I have not really understood the difference in my reading, can someone explain?

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    Hello Tocki,

    Cheers for updating we mate and your the second today diagnosed with Fibro besides Tammy and i'm pleased your still going to push for a rheumo specialist as they do more extensive blood tests. Yes you re-phone tomorrow mate if you've not heard nothing and dow get being fobbed off because even though your urine came back clear and your ANA the bloods could be giving off false readings which Lupus loves doing, that's why so many member's still keep going for constant bloods.

    Sorry the pain hurts and i know how you feel on that score but besides covering well your are wearing sun block besides to help protect you and i'm really sorry about the bald patch, when i saw mine it grew back eventually but grew as i had 3 different area's for some reason if my hair is long the patches develop more.

    Tocki i've added info on the difference for you, to understand it more.

    ((Hugs Terri)) xxx
    Last edited by Peridot20_Gem; 06-16-2011 at 04:26 PM.

  9. #18
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    Difference between Fibromyalgia and Lupus

    The chronic fatigue, pain, and muscle stiffness caused by fibromyalgia can sometimes be difficult to bear. This makes it very important to seek appropriate fibromyalgia treatment in order to help you deal with the symptoms of fibromyalgia. Unfortunately, because so little is known about fibromyalgia, many patients are often misdiagnosed. Every year, thousands of fibromyalgia sufferers are actually diagnosed with lupus, a chronic autoimmune disorder. It is important that you recognize the different symptoms of each disease in order to ensure that you are diagnosed appropriately.

    What is Lupus?
    Lupus is an autoimmune disorder that causes chronic inflammation throughout your body. It can affect any or all of your organs, resulting in dozens of physical symptoms ranging from headaches to irregular heartbeats. Most of us are protected by an immune system that attacks invading bacteria and infections. If you have lupus however, your immune system can’t tell the difference between foreign cells and your body’s natural cells and tissues. As a result, inflammation starts to build throughout your body, causing many physical problems.

    Lupus currently affects between 500,000 and one million men and women in the United States. Every year, 16,000 more people are diagnosed with the disease. The majority of lupus sufferers are female, with women accounting for about 90% of all lupus patients. However, both men and children can also develop the disease.

    Types of Lupus
    There are three different types of lupus.

    Systemic Lupus Erythematosus (SLE): SLE, simply called systemic lupus, is the most common form of lupus. Systemic lupus tends to attack the organ system throughout the body, resulting in a wide variety of symptoms. Systemic lupus generally operates in a cycle, during which you will experience periods of symptom flares followed by periods of symptom remission.

    Discoid Lupus Erythematosus (DLE): DLE, commonly referred to as discoid lupus, usually only affects the skin and face. It rarely causes complications with internal organs. Discoid lupus is characterized by a red rash, called the "butterfly rash," appearing across the nose and cheeks. It can be diagnosed by performing a simple skin biopsy. 10% of those with discoid lupus go on to develop systemic lupus.

    Drug-Induced Lupus: Rarely, lupus is caused by the use of certain prescription drugs. The drugs hydralazine and procainamide, used to treat high blood pressure and irregular heartbeats, have been indicated in drug-induced lupus. This form of lupus is most commonly found in men.

    What Causes Lupus?
    To date, there is no known cause for lupus. It is believed that lupus is the result of a mixture of genetic and environmental factors. Up to 10% of lupus sufferers have close family members who also suffer from the disease. Exposure to toxins, ultraviolet light, and bacteria also seem to be linked to lupus. Hormones may play a large role in contributing to lupus, especially because so many women of childbearing age develop the disease.

    Symptoms of Lupus
    Lupus symptoms are quite diverse and can vary depending upon the type of lupus that you are suffering from. In fact, it is rare to find any two lupus sufferers with exactly the same symptoms. Symptoms of lupus can range from mild to severe, and include:


    •joint pain
    •muscle aches
    •fatigue
    •rash
    •sensitivity to sunlight
    •Raynaud’s phenomenon

    Lupus Treatment
    There is no cure available for lupus, however, there are a number of treatments that can help you to manage the disease. Though there was once little hope of long-term survival for lupus patients, recently there have been great leaps in treatment techniques. Most lupus patients now live long and happy lives.

    Medication
    Depending upon your symptoms, you may be prescribed certain medications by your health care provider. NSAIDS are effective at reducing inflammation and joint pain, as is acetaminophen. Anti-malaria drugs are often prescribed for skin irritations and joint problems. New immunomodulating drugs have proven effective at inhibiting the immune system, thereby reducing inflammation.

    Exercise
    Exercise is an important part of a lupus treatment plan. Because lupus can affect the joints and muscles, many sufferers stop all exercise. As a result, their pain only becomes worse. Exercise in the form of aerobics, strength training, and stretching can do wonders for those symptoms.

    Acupuncture
    As with fibromyalgia, many lupus sufferers report that acupuncture provides them with great symptom relief. An alternative medicine for lupus, acupuncture helps to relieve pain and stiffness by stimulating certain nerve channels.

    Lupus and Fibromyalgia
    Lupus and fibromyalgia may look similar on the surface, but in fact they are very different disorders. Unlike lupus, fibromyalgia is not an autoimmune disorder and does not cause any inflammation. It also does not interfere with organ function. However, people with fibromyalgia are often misdiagnosed with lupus.

    The confusion between lupus and fibromyalgia may be due to the fact that many of their symptoms are so similar. Like fibromyalgia, lupus symptoms tend to come and go, and can take the form of sudden flare-ups. Like fibromyalgia, lupus is also associated with extreme fatigue, muscle pain, and circulatory disorders. In fact, up to 30% of lupus sufferers develop fibromyalgia syndrome after they have been diagnosed. However, it is very rare for fibromyalgia sufferers to develop lupus.

    It is important that you make sure that your health care provider diagnoses you correctly. Many fibromyalgia sufferers who have been diagnosed with lupus have received treatment that has provided them with little or no pain relief and which has instead only complicated their condition. Likewise, if you do have lupus, ask your health care provider to check you out for fibromyalgia, so that you can begin to treat those symptoms effectively too.

  10. The Following 2 Users Say Thank You to Peridot20_Gem For This Useful Post:

    Gizmo (06-16-2011), Tocki (06-16-2011)

  11. #19
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    Peridot, thank you for that information. I will keep you all updated on what's going on with me. Wish me luck in getting the referral!

  12. #20
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    Hi tokie, sorry this is the first I am reading this as I have not been in this wonderful group until recently. Tokie, before I was diagnosed I had joint pain and hair loss too. My urine was good and my ANA would test positive and then negative. IT STILL DOES. Here is what I took and my hair grew back. Biotin supplements. There is also a powder that hair salon suppliers sell, that can be put on your scalp until it grows back. I watched my daughter put it on my friends scalp. It made a big difference in appearance. I would definitely go to the rheumy! I have been diagnosed with lupus for 6 yrs now I believe and today fibromyalgia on top of it. I blamed everything on the lupus, but now I see the difference in the way I feel. I have extreme muscle spasms that won't lift in spite of a lot of meds to relax them. It is literally forcing my vertebrae out of place. I will be walking and have stabbing pains anywhere and they just go. If I exert myself like scrub a floor or lift boxes of heavy things, I am in bad shape for days. My skin hurts, and I can't stand to have anyone lean against me.

    So, all along I had both diseases and didn't know. Once put on meds for lupus I felt a lot better with the joint pain and blanket fatigue. However, I am tired everyday from the fibromyalgia. On a good note, the brain fog lifted some and I passed my exam to be certified in my mental health work! This can change for you. Please take charge of your medical care, as I have learned the hard way. Read all you can and advocate for yourself. Amazing how many mistakes are made. Get copies of all your bloodwork and your rheumy report. Keep a file, pictures, etc. Definitely stay out of sun, use sunscreen, and sleep when you can. I wish you the best in your schooling. Feel free to send me a personal msg if you want to talk more.

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