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Systemic lupus erythematosus

Jan 28, 2016 12:55 AM

Diagnosed January 2013, got a new doctor August 2015 & feel like I have to start all over. Dealing with falls, dizziness, and chest pain due to medicine reduction. Incident happened that caused me to receive 2d hand contact of a drug. Threat has been removed, but doctor reduced pain meds. Will not change drugs even thou I have never abused my pain meds since drug was listed as a controlled med. Next appt not until February 11. Hope PCP will update my meds back to what previous doctor prescribed.

Jan 28, 2016 7:48 AM

I'm sorry your dealing with all of that! My doctors think I might have lupus on top of my CRPS so I'm a little worried but ready to have a full diagnosis! Keep us updated on how you're doing :) I really don't like teaching new doctors about what's wrong with me but you gotta do anything to get feeling better! I hope you get some meds that work and have less pain. Stay strong!

Jan 28, 2016 8:31 AM

SLEDenialPerson, welcome to our family community. I am so very sorry that you are going through such a nightmare. Being in pain, getting frightening diagnosis and then having your medications cut down is just too much!! I can't understand why all these doctors keep taking away meds. "Science" is saying that the doses we take are not necessary but our bodies say differently!! I'm really wishing that I didn't have to take medication for pain but that's not the case. Fortunately, my pain doctor keep very strict documentation of my meds, urine tests and any issues the meds could cause to my health. They haven't given me any indication that they are going to reduce my medication any time soon. I hope that the doctor goes over your info and gives you back the medication that helps you to feel relief. Hang in there. Know that you have an entire community family of wonderful, zany, caring and non judgemental people. {{{Hugs}}} πŸ’•πŸ™πŸ»πŸŒ»

Jan 28, 2016 10:58 AM

SLEDenialPerson, welcome to our community! I'm sorry for the hassles you're going through due to the messed up exposure. My hubby came home yesterday telling me about a friend who went for labs and it showed an illegal substance. After talking a few minutes my hubby asked him if he'd been taking any child meds, and the guy said yes. Hubby told him to go home and check what med, & it turned out to be one of the recalled cough meds with morphing accidentally in it! Everyone needs to be on their toes with all this pain med changes. Hugs & prayers it will all get sorted out soon for you! πŸ™‚πŸ™πŸŒΌπŸ’•

Jan 28, 2016 8:47 PM

Isn't that terrible? Something innocent causing a reduction in needed pain needs?

Jan 29, 2016 11:59 AM

I am also a newbie to this blogging stuff but have learned a lot already. I am a disabled RN with a SLE diagnosis in 2003. I also have Fibro and herniated discs in my lumbar back. I am wondering what you all do to fill up your days if you do not work? This is very hard for and as time goes on I feel the depression getting worse. Any ideas would help!!! TIA!

Jan 29, 2016 8:57 PM

Welcome to our community Aprilgirltoo! I don't have SLE but I have Sjogrens, fibro, and hypothyroidism, among many other chronic pain issues. I stopped working in 2010 to have surgery for a mass, thinking I'd go back to work, but that's not going to happen. So many things have jumped on board, I strictly take every day one at a time now. Depression and anxiety are constant every day as part of everything else and trying to learn to cope with my new normal.

Unfortunately due to my fibro fog, and memory Lisa/dementia due to changes in my frontal lobe, it's very hard for me to stay focused without forgetting what 8 was trying to do. I get distracted in just seconds. And I use to be so organized, but I'm totally opposite now.

I try to focus to get through my day, by trying to stay on a schedule as if I were working; get up & go to bed at the same time, even when I don't sleep. I only nap if I can't stay awake. I have a room full of procrastinated projects, like taxes, scanning photos, cross stitching, sewing, etc. My psych counselor has me setting up a calendar of to do projects so I can hopefully accomplish some. And I have to answer to her so... I actually have accomplished of of the tax prep. Whew!

When I feel good I try to have lunch with my daughter or hubby. I use to go stay at my dad's but I'm no longer able to drive over 30 minutes one way, due to tremors developed last year. I play with my dog. I Ali in the sun in our back yard, but I won't walk elsewhere due to exercise induced asthma and currently being SOB with activity. I do walk slowly on a treadmill between 10-20 minutes, 3-4x a week, unless I'm sick like now. I watch TV, read, & play tablet app games to challenge my brain. We recently played Scrabble with our granddaughter. I was so embarrassed because I kept asking my hubby how to spell simple 4-5 letter words! It was scary to say the least. My hubby frequently finishes comments to others for me because of fibro fog/brain freezes.

I cook super for my hubby when I'm able, wash laundry, dust, sweep the kitchen, typical light duty chores so he doesn't have to do everything. I don't know if my activities are what you expected, but hopefully others will add understood. Hugs, love, & prayers you adjust and find ways to help you cope with your new normal life! πŸ˜·πŸ™πŸŒΌπŸ’•

Jan 30, 2016 9:47 AM

Welcome to our community family Aprilgirltoo!! I can't add much to what Flappsy has expressed but I can tell you that for me, I love music, singing, dancing, doodling, coloring, and especially coming here to see who in the community need a lift or is sharing good news or is a "newbie" like yourself. Thank you for all your years of being a nurse!! If it weren't for nurses more folks in hospitals would surely die. They do more for patient than the doctors do. We have other folks here that were nurses like TerriRulesNotMyPain. Another great lady who was a nurse for years. It's way different to be helping people in pain then actually BEING the person in pain and it never goes away. Know that you will never be alone. We are all here for you. It doesn't matter what time of day or night either as many of us can't sleep with the pain so we'll toddle on in for some company. I hope that you find the caring, support and advice you need her in the community. Welcome aboard. {{{Hugs}}}πŸ’•πŸ™πŸ»πŸŒ»

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