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Desperate for help and ideas for undiagnosed autoimmune disorder.

Feb 22, 2016 12:54 AM

Hi all. I'm new here and am teaching out for help. Hoping that someone might know what is wrong with me.

I got sick August 5 years ago and have not been well since ( except during and up to 6 months after my last pregnancy. Its started out with a bout of kidney stones and progressed from there. Symptoms include chronic muscle and joint pain that has me laid up for days, cholic of the kidneys, random fevers with no infections, muscle spasms so severe they look like a seizure only its just involving my muscles not my brain, hands and feet get so hot i have to ice pack to cool them down, migraines, small sores that show up ( starting out as little blisters that itch) they then turn into scabbed sores that hurt. They feel like they are pulling the nurve endings out through my skin until the scan is removed. Then i get relief, irregular painful bowl patterns and movements, random blood on urine, insomnia with up to 7days of no sleep. I then start falling asleep standing wherever i am almost like narcolepsy but not. Increased inflammation levels, Random weight loss ( not complaining about that tho but it is a symptom) That's the basics of symptoms. I've been tested for lupus, rheumatoid arthritis, fibromyalgia markers are negative, lyme disease, blood work and scans done. I do have low back issues but that is due to something completly unrelated. Through all of this i have been since labled a drug seeker since they cant find anything wrong. The best I have been told is that this appears to be some kind of autoimmune disease but they dont know what. So many sypmtoms fit so many diseases that they dont know where to look and have given up. I have gone through the treatment for rheumatoid arthritis and fibromyalgia. Both treatments made no difference. I am only 33 and i am a good mom. My 14 year old son is very special needs and i feel horrible because i can give him nor my girls the mom the deserve. The mom they had. I have cried many times to my poor husband whom feels so helpless that on some days i feel like im dieing. I have been able to learn how to cope so i no longer require antidepressants which is a positive with all this negative. I am at a loss and if there is anyone out there whom might know what this is please help. I just want my life back.

Feb 22, 2016 1:31 AM

I hate to say this but there are "back issues" that can affect your kidneys and every other organ you have. Also, just about every drug out there can too. You did not mention thyroid or parathyroid, have those been checked and for the parathyroid they will have to look at several times within 3 months to see if it is out of wack. Not just a ramdom blood check. My sister had some of your skin issues and it ended up being her parathyroid. She would get sores and blisters and foot hot flashes.

Feb 22, 2016 1:39 AM

Thank you for your reply. The back issues i refer too are herniated discs of L3, L4, and L5 that were repaired 10 years ago. And some arthritis at the surgical site which is very common. Medications that i have been on have been checked for The possibility of causing The kidney issues. They found no link and believe is all linked to whatever is wrong with me. I have had thyroid testing but not sure about parathyroid. I will look into this. Thank you so much for the reply and information. I will let you know what i find out. Thank you again!

Feb 22, 2016 5:02 PM

Welcome to our community family Unknownanddesperate! I'm so sorry you're suffering through so much unknown! My sister recently had knee replacement surgery and something they have her during surgery has caused her to have issues with her kidneys since. They aren't sure why but she's under a urologist now. There are so many different autoimmune diseases. Jesswoo a dated journal of every detail on all symptoms daily. Try to see if there is a pattern. I have hypothyroidism, fibromyalgia, & sjogrens, and only recently realized my fibro flares with thrush in my mouth, then a few days later I get pinprick blisters in my mouth from sjogrens flare up. If you can figure out if there's a pattern, then maybe the doctors can identify it. You'll be in my prayers that you get answers soon. Hugs!! 🙂💕🙏🌼

Feb 22, 2016 11:24 PM

Thank you i have noticed that the week before my menstrual cycle things are the worst during my flareups. Other than that there hasn't seemed to be any kind of cycle to it

Feb 23, 2016 8:30 AM

Just keep tracking. Many of us have experienced sudden 1-2x odd symptoms. I have disc issues all down my spine, neck fusions in '92 & '95, and now those above & below are horrible. My lumbosacral area is my next worst area, including the unstable SI joints, causing spasms, sciatica, etc. I just use heat, ice, showers, and voltaren gel for most of the spine.

BTW, "Jesswoo" should have said "Just keep". Stupid autocorrect! Lol. I wish I could remember the website about all the many autoimmune diseases. It might be of help. Maybe you could Google it. It may have been a NIH (national institute of health) or some other national auto immune sure. 🙂💕🙏🌼

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