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Autoimmune Disorders and Rare

For non-believers with Autoimmune Disorders and Rare Disorders. Lupus, Raynaud's, Celiac, MS, etc., Ehlers-Danlos Syndrome, Primary Immunodeficiency Disorders, 22q Deletion, etc.

For non-believers with Autoimmune Disorders and Rare Disorders. Lupus, Raynaud's, Celiac, MS, etc., Ehlers-Danlos Syndrome, Primary Immunodeficiency Disorders, 22q Deletion, etc.

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Most Liked Posts By TaraMarshall (4) Posts by anyone

Autoimmune Disorders and Rare
Mar 11, 2019Mar 2019

Posted by LadyAlyxandrea
Behold!!!! My weightloss progress thus far!!!! And an update: Surgery in two days. One day left of work. The doctor took me off 90% of my pain meds before surgery, to thicken up my blood. This has been a very horrifying time. I've discovered ...
5 comments
Shared from Health & Happiness
Apr 30, 2018Apr 2018

Posted by TaraMarshall
So, I was wondering if anyone else had read Dr. Terry Wahls' books on nutrition/special diets for autoimmunity? I've done most of her suggestions, and pushed my ANA numbers for Lupus into remission. I would consider that fairly successful, ...
2 comments
Autoimmune Disorders and Rare
Jul 11, 2018Jul 2018

Posted by Alimacbean
I miss the simple things about not having chronic pain. I miss cute shoes. I miss being able to stub my toe, say ouch, and get on with my day. I miss standing up straight after sitting down. I miss going to theme parks and walking the whole day. I ...
4 comments
Autoimmune Disorders and Rare
Jul 8, 2018Jul 2018

Posted by nutrition_nerd
That's right!
2 comments
Autoimmune Disorders and Rare
Nov 18, 2018Nov 2018

Posted by Lutherzme
Anybody else have to do this once a week?
5 comments
Autoimmune Disorders and Rare
Jul 14, 2018Jul 2018

Posted by Demonica29
Hello and gentle hugs all around. I have fibromyalgia and arthritis in my neck. Cancer and chemo left me with permanent peripheral neuropathy and horrible panic attacks. But hell, I do t have cancer anymore.
3 comments
Autoimmune Disorders and Rare
Apr 26, 2018Apr 2018

Posted by JustADreamer
September 12, 1993 is when my life changed. Single mom of two boys, ages 2 and 4. I got Guillain Barre Syndrome. Was in Sarasota Memorial Hospital for six months. Being an introvert and disabled has made things a bit harder. Recently, dated a friend....
4 comments
Autoimmune Disorders and Rare
Jul 9, 2018Jul 2018

Posted by LadyAlyxandrea
My little victory today is that tomorrow I'll reach level 8 finally. That's all I really got today, but I'll try to make tomorrow a little better
4 comments
Autoimmune Disorders and Rare
Jan 27, 2019Jan 2019

Posted by LadyAlyxandrea
I had a miracle!!!! Yesterday I couldn't walk at all, no weight on my leg. Then I massaged the muscle a little, oh mama did that hurt. But then I stood up and POOF all better! Well sorta. I can walk again. Still sore, and my kneecap is bruised on ...
2 comments
Autoimmune Disorders and Rare
Feb 5, 2019Feb 2019

Posted by LadyAlyxandrea
I am SO livid. For a few weeks I've been having horrific facial flushing like ON FIRE feeling. I've been struggling with sleep. My angina came back for the first time since I was 18. My nerve pain is 40-60% worse than ever. And I found out today...
3 comments
Autoimmune Disorders and Rare
Apr 23, 2018Apr 2018

Posted by LadyAlyxandrea
Explaining proprioception disorders to children and non-medically inclined people: "Why do you wear those weird gloves?" "Sometimes my fingers or hands wander off and they help me to know where they are."
3 comments
Autoimmune Disorders and Rare
Nov 10, 2018Nov 2018

Posted by LadyAlyxandrea
Psst hey kid.... You wanna see something cool? (I scared the shit out of my ortho p.a. as he walked by my office. It was freaking hysterical)
4 comments
Autoimmune Disorders and Rare
Apr 13, 2018Apr 2018

Posted by jjenakabc
Holy shit!! I can NOT believe what Im seeing!! EDS peeps!! YES!!!!! My EDS/ Chronic Pain, has really affected EVERY part of my life and although I KNOW we are not supposed to let it become our IDENTITY Im finding it VERY hard.
3 comments
Autoimmune Disorders and Rare
Jul 30, 2018Jul 2018

Posted by memorylikeasieve
Little victory: to-day I made a homemade barbecue sauce despite awful back pain. It entailed over an hour of standing at a stove in arch support shoes and a back brace, but I did it!
2 comments
Autoimmune Disorders and Rare
Jul 11, 2018Jul 2018

Posted by LadyAlyxandrea
A gentle reminder
0 comments
Autoimmune Disorders and Rare
May 4, 2018May 2018

Posted by TampaHeathen
Hi, new member. I was diagnosed with Hashimoto's Thyroiditis on the same day as the Boston Marathon bombing (early reports were playing on the TV set in the waiting room as I was walking out). While primarily a disease common to females, one in ...
6 comments
Autoimmune Disorders and Rare
Jun 25, 2018Jun 2018

Posted by BookDeath
Just returned from seeing my new neuro-nurse practitioner! (A female, btw.) She was like night and day from the previous neuro-jerk! We're titrating down from this horrid AED and discussed what is acceptable in terms of seizures. ALL AEDS have ...
2 comments
Autoimmune Disorders and Rare
Apr 3, 2018Apr 2018

Posted by Melbates
This is what I'm battling right now trying to explain to people my body doesn't work the way it looks like it should work.
2 comments
Autoimmune Disorders and Rare
Jun 21, 2018Jun 2018

Posted by Monica
Hi everyone! I'm Monica and I have Lupus and my Rheumy said I also have fibromyalgia. I live in CA but I'm from Brooklyn, NY.
5 comments
Autoimmune Disorders and Rare
Apr 22, 2018Apr 2018

Posted by LadyAlyxandrea
I'm allergic to tylenol and it is ridiculous. You guys have any idea how many things have tylenol in them? When I explain to the doctors what tylenol does to me, they shrug it off and say it isn't a true allergy, and act like I exaggerate. I don't ...
5 comments
Autoimmune Disorders and Rare
Jan 4, 2019Jan 2019

Posted by LadyAlyxandrea
Well this proved to be the most productive appointment ever. I finally got answers. Not good answers but answers finally. The nerve conduction test showed substantial deterioration of my radial nerves all from...guess where....my c5. Fuckin ...
3 comments
Autoimmune Disorders and Rare
Apr 25, 2018Apr 2018

Posted by Alimacbean
I was told today that I have extremely low vitamin D. Getting me on a supplement. Hoping this is what is the cause of my fibromyalgia. It's not very common to have vitamin D levels checked and the symptoms of deficiency mimic fibromyalgia symptoms.
7 comments
Autoimmune Disorders and Rare
Jun 3, 2018Jun 2018

Posted by rogeralyn
Although this is about introducing the new Bionic pancreas, the first 9 min's are probably the best explanation of what it's like to live with T1 diabetes. ://youtu.be/bZXmfTxd79Q
1 comment
Autoimmune Disorders and Rare
Jun 16, 2018Jun 2018

Posted by CarolinaGirl60
Gastroparesis is now in month 10 of serious flare(last bad one lasted nearly two years). I also have fibromyalgia and a few other things to deal with. In the past month, I could fit the amount of solid food I ate into a sandwich ziplock...but no ...
3 comments
Autoimmune Disorders and Rare
Jun 16, 2018Jun 2018

Posted by JesseBoren
I have been diagnosed with a few rare diseases, some right some wrong. I've seen over 30 doctors in the last 18 years, apparently I'm a medical mystery. The first one I got was Trigeminal Neuralgia which lasted 6 months, thankfully I have had no ...
5 comments


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Photos 29 More

Posted by Sonja44Sums it up.

Posted by Sonja44This meme cracks me up. I'm Fine.

Posted by PiperMckennaAlways cold + sick days = Mermaid. Sometimes living with peoples who like the AC isn't such a bad thing.

Posted by PiperMckennaI'm quite prone to bruising because of EDS....any tips on how to reduce the look of bruises? Ideally I'd like to prevent them. But it's too late for that today. haha

Posted by LadyAlyxandreaI didn't learn my lesson well enough in March when my incisions refused to heal because i was working the crazy shifts.

Posted by ponz111I have restless leg syndrome which is not uncommon but with me it is my whole body which has the complusion to move.

Posted by LadyAlyxandreaPost op day 3 update: There will be some TMI, which I will mark so you can skip if you don't want to get grossed out.

Posted by LadyAlyxandreaBehold!!!! My weightloss progress thus far!!!! And an update: Surgery in two days.

Posted by RavenCTTruth,,,,,

Posted by LadyAlyxandreaHow it feels going to the doctor

Posted by LutherzmeAnybody else have to do this once a week?

Posted by LadyAlyxandreaPsst hey kid.... You wanna see something cool? (I scared the shit out of my ortho p.a. as he walked by my office. It was freaking hysterical)

Posted by LadyAlyxandreaFor today's game of "whats that weird random pain" I broke my big toe.

Posted by LadyAlyxandreaSo I finally have the date for MEETING my new neurosurgeon.

Posted by sassygirl3869Medical Reasons For Using Cannabis

Posted by sassygirl3869Multiple Sclerosis Relief
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