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Thread: The start of a (hopefully smooth) journey!

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  1. #1
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    Smile The start of a (hopefully smooth) journey!

    Hello All.

    Found this website in hope of getting to know others with similar struggles. After reading through some threads, I think I've found the right place! Let me start with some (I'll try to be brief) backround.

    I was born in Midland, Texas and soon moved to Boca Raton, Florida when I was 2 y/o. It all started in the 5th grade. I had been complaining of pain that my pediactrican soon named 'growing pains'. I suppose after continuing the complaints, he reffered me to a very popular pediactric rheumatologist. My mother and I traveled down to Miami to visit him where I tested with an elevated ANA accompanied with symetric joint pain. He diagnosed it as juvenile rheumatoid arthritis. I don't particulary remember starting any medication, given that the pain was definelty nowhere near severe.

    Years went by and I continued to be extremely active (spent 5 nights at the dance studio, then starting playing sports all through out high school..) My main symptom was still the joint pain. Towards the end of HS, I started getting muscle pain and 'nerve pain'.. (these random breif bursts of shooting pain in the most random of areas). Though the continual development of pain, I stayed pretty active and tried to ignore it. Every once in a while I would mention it to our family doctor but becuase I wasn't so faltered by the pain I don't think he took it too seriously.

    I was again tested short after high school, and my ANA was normal. This detered him to believe that the pain I was experiencing was stress-related (due to frequent moving and paretns separeating and divorcing). The stress comment angered me. My activity level started to decrease due to working more often and the pain to start worsening. I continued to have bouts of staf infections from the occasional scrape or cut, as well as several times a year colds and flus. While visiting the same doctor for a common cold, I noticed my patient profile while waiting for the doctor saw they had me listed as mildly obese. Mind you, I'm 5'3" and at the time, I was 150 lbs. I wouldn't typically call that obese as I am a very curvy woman.. But hell, what did I know.

    I started having other symptoms. (Until recently, I hadn't connected the dots to Lupus, or anything else auto-immune.) I started getting a rash while spending time in the sun.. At first I thought it was maybe the necklace I was wearing (the rash was localized to my chest and extended to my shoulders and neck) and being in and out of the lake (in Texas). The next lake trip we took, I didn't wear the necklace. The rash was pretty itchy, but was scaly and raied and weird and hurt way too much to even think of touching it. I assumed it was from the lake water, though. I grew up in south Florida and had only spent my water activities in the ocean.. So maybe being in the freshwater of the lake was irritating it. But then I went to Florida to visit mom, and the same rash appeared after being in the sun.

    Then I was told I was mildly anemic. I started taking the iron supplements she perscribed me to, but the side effects involed weren't as bad as whatever the anemia had been causing me. I stopped taking them. I was partying a lot and staying up super late regardless of having to work the next day. I was exhausted. I was soon transferred/promoted to a more secure job within the company with an office and everything. I straightened up. Ended up getting serious with a boyfriend. I started getting more sleep and hardly ever party anymore. I still wake up as exhuasted and fatigued if I had been out partying all night, which kind of worried me.

    Several months ago, I started having some upper back pain that was localized to the left side. It was extremly mild and almost only was noticable if I was lying on my stomach for a long time. I had been calling it back pain for a very long time.. Until it started paining me while breathing. After a month or so if it bothering me, mildly, I saw a dr. It only hurt while breathing deeply. He told me it was costocondritis. After two months, no matter how deep I breathe, it hurts. I also can be holding my breath and still feel the aching pain. Sometimes, when I'm stressed... Or even when I'm doing minimal activity around the house, it just starts throbbing. The pain has slowy moved to the other side as well. I'm starting to be convinced it isn't costo, as the typical sign of the condition is the tenderness when pressing on the sternum or the other rib joints is not there. And if I HAD to point to my pain, which is pretty hard to do, it's almost like under the armpit area of ribs, which to me, doesn't make much sense in costo. Again, what do I know though.

    On top of that.. I've starting getting some sores on my scalp. They're sort of itchy but very tender to touch. I also very frequently get some sort of facial rash. I'm not sure if it's the malar rash or not.. I thought for a while I was getting fevers but when checking my temp, it was alwyas normal. Who knows.



    That's my current story. Hopefully as I restart this journey of diagnosis I'll have some more positive feedback! SO happy to find this community. Wish me luck!
    "Rule number one is, don't sweat the small stuff. Rule number two is, it's all small stuff."
    -Robert Eliot

    Dx: Potential Lupus, Diffuse Systemic Sclerosis, Mixed Connective Tissue Disease

    Rx: Prednisone 5mg 1x daily, Lyrica 75mg 2x daily, Omeprazole 200mg 1x daily, Xanax .5mg prn

  2. #2
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    hello and welcome whl as you can see we are one big family around the globe we all have had all or some the symptoms you have some have had a diagnoses and some are waiting or struggling to get there there are many auto immune diseases and that is why it is so hard to diagnose as well there is no test that is specifically for lupus they base it on many criteria. seeing your gp and getting referral to rheumotologist may be your best option so they can give you some tests. my suggestion to you is to keep a diary of your symptoms and what you believe sets them off as well as write down any questions you have for your doctor so when you see him you are well prepared.a lot of us suffer from memory problems or as we call it brainfog so this is how we keep track of things, getting frustrated can be part of the journey but remember you are now part of our family and we will be there to support you in the good times and bad. hopefully they can get you a diagnoses and start you on the right medication to help. i am here if you need to talk .

  3. The Following User Says Thank You to kim,l For This Useful Post:

    tripLexie (01-20-2012)

  4. #3
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    hi,
    kim has offered some good advice. please reread her comments.

    welcome , please keep us informed on your journey.

  5. The Following User Says Thank You to steve.b For This Useful Post:

    tripLexie (01-20-2012)

  6. #4
    Join Date
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    Thank you very much, Kim and Steve! I appreciate it very much. I'm eager to start getting somewhere, even if it does come with some struggle. I will keep y'all updated!!
    "Rule number one is, don't sweat the small stuff. Rule number two is, it's all small stuff."
    -Robert Eliot

    Dx: Potential Lupus, Diffuse Systemic Sclerosis, Mixed Connective Tissue Disease

    Rx: Prednisone 5mg 1x daily, Lyrica 75mg 2x daily, Omeprazole 200mg 1x daily, Xanax .5mg prn

  7. #5
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    Welcome to WHL,
    As Kim told you, there are lots (over 60) of autoimmune diseases. My Mixed Connective Tissue Disease includes Lupus, Sjogren's, RA and Psoriatic arthritis.
    My doc in San Antonio did a thorough examination of my scalp. Like you, I've had those scaly, tender sores in my scalp. She found them and proclaimed that I have psoriasis.
    She had me taking plaquenil and MTX, and all of my rashes went away.
    I now have a new rheumy in CA, who doesn't seem to believe what the other one diagnosed, so I'm no longer on MTX, and the scalp sores are back. I've had one PCP tell me that if I do have psoriasis, my heart should be checked often. The rheumy dismissed that idea.
    As you can see, the docs can never agree on what to do with us! Kim had the right idea - keep a symptom diary and be persistent with the docs.
    Good luck, and keep us informed.
    Hugs,
    Marla

  8. The Following User Says Thank You to magistramarla For This Useful Post:

    tripLexie (01-20-2012)

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