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Hello. I’m a 49 year old woman living with pain and weird symptoms(hair loss, GI symptoms, dry eyes, pain everywhere) every single day. I’ve been to several specialists with different opinions for the better part of four years. I had a positive ANA ordered my gastro and was told
Not to worry about it. Symptoms continued and was finally referred to a rheumatologist a few weeks ago. I have a positive RPN but it’s only 1. Not sure if this means I’m not positive or if it needs to be higher to be considered positive. The pain in my body has made me quit my career and I’m presently barely working. My apt to go over labs and X-rays is tomorrow. Does anyone have any insight on this? I’m trying to prep myself for this apt and what to expect. I feel so frustrated it’s taken this long to get here and wonder if the damage to my body is going to continue to worsen if docs don’t take this seriously. I went from running and every working every day to a body I don’t even know anymore. Any insight is so appreciated.
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My psychiatrist put me on mirtazapine for sleep and that stopped working so that’s when Xanax was also added. That works some nights but not all. I also tried clonodine but that did nothing for me. Currently they prescribed Quiviviq but insurance won’t cover it so back to Xanax 🙁
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1 ReactionMine showed that I had it but nothing new also. I take antihistamines but reluctant to sometimes because I start to get bad leg cramps at night and wake up with headache. I can sense it is something in the environment that is triggering the bad flares and stressful situations make it worse. My pain management doctor thinks the stress from my neck surgery triggered an autoimmune response that was dormant before. I wonder if it was to do with any type of cells that were in the donor cadaver bone for my neck surgery. I'm just trying to get answers. Three years and no real answers just tests.
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2 Reactions@andromeda5845 @roscop several years ago I had a major sleep problem so I got a referral to a sleep doctor. Thank heavens, I didn’t have to do a sleep study! We just talked and the doctor, a psychiatrist, explained sleep hygiene to me. The rules are pretty simple:
1. NO screens after 7 or 8 o’clock
2. NO reading or TV in bed. Bed is for sleep and sex only
3. Get totally ready for bed long before bedtime
4. Bedroom should be dark and cool. I use a flashlight, for safety, if I get up at night.
5. Cut down on alcohol
This worked very well for me. If I’m still awake 30-60 min after going to bed, I get up and read for a while. Use kindle on my iPad which can be turned to dark mode. The program is good but I’m not always good! Mostly, I sleep pretty well.
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2 ReactionsRemeron is awful, it hasn't helped anyone I know of and gave me restless leg when taking it. For sleep klonopin(Clonazepam) is probably better for anxiety. Every body is different with medication..so I've just giving my view. I've tried many.. Trazodone was like taking horsepills and I still couldn't sleep, even if they upped it.. didnt matter. While melatonin can work for some people, it is useless to me and again my doses got larger and im like wait(do my research), nope, that can be bad for you and it wasnt helping. I'm taking Ambien ER and it has been the best. Along the way my dr added doxepin(old med) to help a little with sleep and mood. It's finding the right thing for you, although experimenting isn't fun!
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3 ReactionsOh ya..I've heard several times..don't diagnose yourself! or stay off the internet!! Like some people I'm sure are unhealthy or obsessive about it but I got problems...if no one else is going to help...I'll help myself. And there is nothing wrong with advocating for yourself and learning. I've had to push for myself to cause anything to happen. I was young when my chronic journey started and I had already been diagnosed with depression and anxiety...so I was brushed off for yeeaarrrs.
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2 ReactionsWhen you have high histamines and trouble with being very sensitive to things, this can be a symptoms of autoimmune activity because your body is attacking, over reacting to things that aren't deadly. My environmental allergies got worse as I got older and I ended up getting a weekly immunotherapy shots. It puts a small dose of what you're allergic to in your body so your body can not react to it as bad, basically. It does help but I'm still taking antihistamines and sprays. Craziness
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2 ReactionsYeah that totally makes sense but they are saying it’s not autoimmune at this point. My levels aren’t high enough. Six weeks of steroids to get the inflammation down in my joints and that’s it. Scared to come off them because I know it will be terrible. Although I am all for vaccines the only thing I can say about my timeline is this did all start after getting the Covid vaccine. I ran a daycare so they gave me no options there. I’ve always had allergies but it’s been insane. I got stung by a bee last summer and it was baaaadddd. I’ve never reacted like that before in my almost fifty years of life. Something has definitely changed for me.
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1 ReactionUnfortunately I have done all of these things including blue light glasses. Cortisol supplements too. I have tried absolutely everything. I don’t drink alcohol at all anymore since my stomach started acting up. Even if I’m up all night and try to take a nap my body just does not allow me to do it. It’s like slow torture 🙁
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1 Reaction@andromeda5845 That is so bad! Has your doctor said anything about this situation?
@andromeda5845 if you would be interested, I can give you the names and locations of Mayo Clinic partner hospitals. Might you be interested?