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Thread: Do or I don't I?

  1. #1
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    Default Do or I don't I?

    Hello everyone at WHL! I don't know where to start. Up until a week ago I'd never hear of Lupus. When someone mentioned the word and I read about it, it was like a lightbulb went on in my head! About 10 years ago I suddenly became photosensitive (although I didn't actually know it was called this until about 4 years ago). It was getting progressively worse every year.
    About 8 years ago I had my rheumatoid factor checked. It was borderline then the symptoms disappeared (until my 2nd pregnancy in 2007 when I was treated for carpel tunnel and RA)
    I have what I thought was high coloring on my nose and cheeks (now I know it's called a butterfly rash I look in the mirror and see it. I did always wonder why part of my cheeks remained pale)
    I've been treated several times over the last 12 years for depression. Always accompanied by fatigue. People called me lazy but my body wouldn't allow me to get up and work!
    I couldn't give you a history for headaches because I've never paid much attention until back in January I ended up in A&E twice because of them. They told me I had a viral infection (I felt like I had flu but the headaches were chronic). 2nd time I went back was when the entire right side of my face went numb. Still they said it was a viral infection.
    I have signs of Reynauds but I've only looked for signs of this in the last couple of months when walking with my Dad and the purple in his hands scared the life out of me. Now I realise it happens to me too.
    I've had tinnitus for years, have suffered intermittent nose ulcers, pelvic pain, restless legs. I've also miscarried 3 times (before going on to have 2 healthy children although both pregnancies were fraught with problems) and often have dry itchy eyes.
    To bring an end to this long into, I was caught by the sun a couple of weeks ago and got some steroid cream for the resulting rash on my chest and hands from my doctor. Within days I could barely use my hands due to the joint pain and generally felt like I had been run over by a bus. I thought I was getting flu. Everywhere ached, especially the head again! With the nurse last week for a routine smear, I asked if she would take bloods to check my RF. Then I heard the word. Lupus. It all suddenly made sense. I went to my doctor last Thursday. He said he knew very little about Lupus but immediately referred me to a Rheumatologist (Lord only knows how long this will take). My doctor also asked if there were particular bloods he should take. I gave him a list like ANA, Anti-Dna etc. and he took these too. He said if they come back positive, he will nudge the Rheumy to get a quicker appointment. Now it's just a waiting game. Part of me would like to be diagnosed as it would give me a reason for not having been able to fulfill my potential over the last 10 years. Is it really that I'm not lazy and unmotivated but that perhaps I have Lupus? Sorry for going on so long. There isn't really any quick way to tell a story such as this. I may now rest for an hour as typing this much is exhausting LOL!! Regards to you all. I hope you are having a good day x

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    Oops, I forgot to mention that since this last "bout of illness" my hands and eyes have been particularly swollen. I think if my eyes puff up any more, I may need a white stick and dog!

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    Well Shatzwirl, your symptoms certainly sound suspicious for lupus. Are you being treated for RA? Autoimmune diseases like to run in herds, it seems. Your story is a common one in the lupus world, although when talking with doctors sometimes it seems like you are the only one on the planet with these weird symptoms. There are some great "stickies" on this site and if you read through some of the threads you should get even more insight into lupus. The people here are amazing and have so much information to share.

    It looks like your children are still very small. I began having symptoms after my first child was born and I remember how difficult it is to care for little ones when you are sick yourself.

    One suggestion I have (which you hopefully are doing on your own already) is that you avoid the sun and fluorescent lights as much as you possibly can. Put on at least 50 SPF sunscreen on all your exposed skin if you do have to go outside - even to drive to the store. Wear long sleeves and long pants and a hat. If that helps you feel better and decreases your rash, then you have photosensitivity. I was very photosensitive until I started taking immunosuppressants. It's REALLY hard to avoid the sun when you have children, but there are some clothing lines out there specifically for photosensitive people. Solumbra is the big one in the U.S.. I used to wear their sun protective gloves and they really helped. I can't afford much else that they carry, but other companies, like Sun Grubbies, have similar stuff for less money.

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    Hello shaztwirl,

    A lovely warm welcome to our family at WHL and there's so many threads to venture through which will open your eyes to what Lupus and autoimmune diseases can cause.

    Refering you second reply ask your GP to get you refered to an ENT specialist as sinunitis which i have also is sometimes connected with TMJ Disease of the jaw which i have and the proper name is Temporomandibular joint disorder and it causes swelling of the eyes and also vessesl to break at the back of the eyes besides fluid building up overnight.

    You sound like you also have Raynauds like me and i've had the butterfly rash in the past and used steriod based creams like yourself, to get a proper diagnosis of the raynauds you need to be sent to a good Dermotoligist and they'll run bloods to make sure.

    The numbness you get i feel that from the sjogren's disease and also the eye irritation, so lets hope when you see the Rheumo your put under a good one who does tests on everything but i always say this, if you do have lupus or anything related it does fluctuate the bloods and can give off false readings, so sometimes it can turn into a grin and bare till you get something positive, it took 6mths for my anaemia to show it's ugly head properly.

    Your not idol but all the other symptoms your suffering do come with this Disease and as time goes on you must learn to pace your body plus stress/depression Lupus thrieves on and will make you feel your symptoms even more.

    It will be lovely getting to know you. Terri xxx
    Last edited by Peridot20_Gem; 05-30-2011 at 09:02 AM.

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    In answer to your first statement, my kids are 7 (boy) and 3 (girl). After 3 miscarraiges, I was beginning to think it wouldn't happen! And in answer to your first question, I'm actually being treated for nothing other than steroid cream for any rash and Naprosyn (painkillers) for the headaches. Just rang the nurse for my first lot of blood results and my RF and CRP have come back normal. Should have my other bloods by Thursday.
    I try so hard to avoid the sun. Luckily here in Ireland we don't have so much of it LOL! When I caught the sun a couple of weeks ago I was amazed at how I thought I had burned through a blouse and jacket. It was only my face exposed but my upper chest was so red and blistery! I find that I can't put suncream on if I already have the rash as it irritates it badly so I'm making sure to lather myself in it before I go out at all. It all feels a bit odd having to wear sunscreen when my hands are purple with the cold. Dealing with the kids is more difficult. As a single Mum, it is all down to me. They don't like me not paying so much attention to them and their behaviour is all focussed on getting it but in the wrong way. Sometimes they speak to me and it takes me a while to even realise they are talking to me and even longer to comprehend what they are saying. It's like I'm absent! They certainly feel that way but my Mum is good in asking them to particularly good for me as I'm not feeling well at the moment. There are days when I almost wish they weren't here but they also manage daily to make me smile! Thanks for listening x

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    Thank you Tiger. I read a bit about TMJ last week. It sounds exactly like how I'm suffering. The face pain, headaches, jaw pain (clicking and almost locked) and the neck pain. My friend said to me a couple of weeks ago "Sharon, relax!" and rubbed me on the jaw. I realised that I couldn't actually relax my jaw and it made me quite sad to think that I couldn't actually remember the last time I fully relaxed at all! I will ask my doctor to refer me to an ENT. Thank so much for the advice.

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    Lupus if you do have it can cause miscarriages and also stop you having children i'm 42 and never had any.

    Yes you need to cover well my dermo as banned me from sitting in the shade for 10mins i look like i've been fryed so i know what your going through, so it's best to avoid it as much as possible, i used 50 block but alot of member's use 100 as it does help alot.

    It sounds like your having foggness a great deal, your mind just totally blanks off from everything around you and if your going to do something half the time you end up doing something totally opposite.

    We're all here for one another on the forum and we're one close family, so just carry on. xxx
    Last edited by Peridot20_Gem; 05-30-2011 at 09:23 AM.

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    I'm adding some info on TMJ Disease (Temporomandibular joint disorder) in case it helps in anyway.

    What is the temporomandibular joint?

    The temporomandibular joint (TMJ) is the area directly in front of the ear on either side of the head where the upper jaw (maxilla) and lower jaw (mandible) meet. Within the TMJ, there are moving parts that allow the upper jaw to close on the lower jaw. This joint is a typical sliding "ball and socket" that has a disc sandwiched between it. The TMJ is used throughout the day to move the jaw, especially in biting and chewing, talking, and yawning. It is one of the most frequently used joints of the body.

    The temporomandibular joints are complex and are composed of muscles, tendons, and bones. Each component contributes to the smooth operation of the TMJ. When the muscles are relaxed and balanced and both jaw joints open and close comfortably, we are able to talk, chew, or yawn without pain.

    We can locate the TMJ by putting a finger on the triangular structure in front of the ear. The finger is moved just slightly forward and pressed firmly while opening the jaw. The motion felt is from the TMJ. We can also feel the joint motion if we put a little finger against the inside front part of the ear canal. These maneuvers can cause considerable discomfort to a person who is experiencing TMJ difficulty, and doctors use them for making the diagnosis.


    What are TMJ disorders, and how are TMJ disorders caused?

    TMJ disorders are a group of complex problems of the jaw joint. TMJ disorders are also sometimes referred to as myofacial pain dysfunction and Costen's syndrome. Because muscles and joints work together, a problem with either one can lead to stiffness, headaches, ear pain, bite problems (malocclusion), clicking sounds, or locked jaws. The following are behaviors or conditions that can lead to TMJ disorders.

    1.Teeth grinding and teeth clenching (bruxism) increase the wear on the cartilage lining of the TMJ. Those who grind or clench their teeth may be unaware of this behavior unless they are told by someone observing this pattern while sleeping or by a dental professional noticing telltale signs of wear and tear on the teeth. Many patients awaken in the morning with jaw or ear pain.



    2.Habitual gum chewing or fingernail biting



    3.Dental problems and misalignment of the teeth (malocclusion). Patients may complain that it is difficult to find a comfortable bite or that the way their teeth fit together has changed. Chewing on only one side of the jaw can lead to or be a result of TMJ problems.



    4.Trauma to the jaws: Previous fractures in the jaw or facial bones can lead to TMJ disorders.



    5.Stress frequently leads to unreleased nervous energy. It is very common for people under stress to release this nervous energy by either consciously or unconsciously grinding and clenching their teeth.



    6.Occupational tasks such as holding the telephone between the head and shoulder may contribute to TMJ disorders.

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    Your comment on the fogginess made me laugh. Reminds me of the day I popped to the shop for a loaf of bread and came home with a roll of tinfoil. I could wrap the sandwiches but couldn't make them! I stand up and sit straight back down again so frequently the kids think I'm mad!

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    Quote Originally Posted by Shaztwirl View Post
    Your comment on the fogginess made me laugh. Reminds me of the day I popped to the shop for a loaf of bread and came home with a roll of tinfoil. I could wrap the sandwiches but couldn't make them! I stand up and sit straight back down again so frequently the kids think I'm mad!
    Oh mate, that did make me laugh, another member on here ages ago but the washer on with without washing in.

    About a good month back my hubby caught me in the kitchen in a right daze, until he shouted my name christ knows how long i would have been there.

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