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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) (Page 7 / 9) Posts by anyone

Autoimmune Disorders and Rare
Apr 2, 2018Apr 2018

Posted by LadyAlyxandrea
Well today was my last OT session, and my new weighted silverware arrived so yay. Unfortunately still have not heard from the Geneticist about an appointment ugh and my neuro is out for two days so I can't tell him about the medicine reactions.
1 comment
Autoimmune Disorders and Rare
Apr 2, 2018Apr 2018

Posted by Lysistrata
Has anyone here looked into autophagy? I have an AI condition that every medical professional has told me is largely untreatable. I tend to believe almost anything is treatable through diet, but my anti-inflammatory diet doesn't seem to be making...
2 comments
Autoimmune Disorders and Rare
Apr 6, 2018Apr 2018

Posted by LadyAlyxandrea
Sorry I'm all out of spoons but can I offer you a knife instead? -stabs-
3 comments
Autoimmune Disorders and Rare
Apr 9, 2018Apr 2018

Posted by Allikat
New to the group. I have lived with Psoriasis for the past 16years, I have also been told other wierd skin patches are eczema a with crippling gut issues. I am on Stalara, my 3rd type of biologic shot it's seems to keep my skin as clear as Embrel or ...
3 comments
Autoimmune Disorders and Rare
Apr 9, 2018Apr 2018

Posted by Basilisa01
Thank you for making this group. I was diagnosed with polydermatomyositis, fibromialya and IBS on Dec 2011. My conditions atracks all type of muscles, the skin and my digestive system. The treatments caused me lost of near and far sight, diabetes, ...
2 comments
Autoimmune Disorders and Rare
Apr 9, 2018Apr 2018

Posted by JustADreamer
I have Guillain-Barre Syndrome. First time was 9/12/1993. Was in Sarasota Memorial Hospital for 6 months. . The hospital did a story on me, as well as a medical magazine, from California. Critical Care Nurses. October of 1994. Hope to...
2 comments
Autoimmune Disorders and Rare
Apr 18, 2018Apr 2018

Posted by Robert56
Taking med right now including weed. Helps with my neurological pain in my legs . I was bitten late sept 2008.
3 comments
Autoimmune Disorders and Rare
Apr 18, 2018Apr 2018

Posted by Robert56
I am going to bed. My new g is to pull up lights on youtube and let it play all night LIVE .
2 comments
Autoimmune Disorders and Rare
May 19, 2018May 2018

Posted by maryjane420
I have hidradenitis suppurativa. I am trying elimination diet to find out if there are any foods that might be triggering my flare ups. The doc wants me to try Humira. Not gonna happen! To scared of the side effects. Is there anyone here that has ...
5 comments
Autoimmune Disorders and Rare
Jun 28, 2018Jun 2018

Posted by Fredbeth
Hi. New member here. I have EPGA, with lung damage, Arthritis, Reynauds and various issues due to above illness. It all sucks. My heart goes out to all of us sufferers.
2 comments
Autoimmune Disorders and Rare
Jul 3, 2018Jul 2018

Posted by LadyAlyxandrea
I am pretty sure today will be the last day I can wear makeup. This is a acceptance because I've always really loved how pretty I am with makeup on, but as I struggled with my eyeliner and worse with my mascara I realized it's probably just not ...
2 comments
Autoimmune Disorders and Rare
Jul 3, 2018Jul 2018

Posted by LadyAlyxandrea
I threw my dinner on the floor. My tremors are so bad lately I always feel like I've got giant vibrators instead of arms. I normally laugh it off and try not to let it get to me, but watching the fried chicken I spent two hours making fly around my ...
1 comment
Autoimmune Disorders and Rare
Jul 8, 2018Jul 2018

Posted by Alimacbean
I've been working with an integrative doctor to find the source of my fibromyalgia. We've run a million tests and I've taken a butt load of supplements. No improvement. I'm worn down and at my witt's end. I really thought I'd have found an answer, ...
3 comments
Autoimmune Disorders and Rare
Jul 10, 2018Jul 2018

Posted by Sydland
Hi everyone. I just need to vent. I’m a Type 1 diabetic with a pancreas that quit working, celiac, and Hashimotos. The past two weeks my hair started falling out in huge handfuls in the shower. It’s gone from being really thick to thin in ...
4 comments
Autoimmune Disorders and Rare
Jul 13, 2018Jul 2018

Posted by StevenB83
So what exactly is an anti inflammatory diet? I thought meat was an inflammatory.
3 comments
Autoimmune Disorders and Rare
Jul 25, 2018Jul 2018

Posted by rogeralyn
Thought this was interesting in general. "These 9 behaviors could cut your dementia risk by 35 percent"
1 comment
Autoimmune Disorders and Rare
Aug 1, 2018Aug 2018

Posted by GreatNani
Anyone here with EDS?
4 comments
Autoimmune Disorders and Rare
Aug 13, 2018Aug 2018

Posted by LadyAlyxandrea
Behold friends! My feet after one hour of cooking. Notice the soft ball sized ankle swelling, the horrific spasm that has my toes locked in a twisted position. Ahhhh multifocal dystonia is so much FUN. Freaking EDS. when people ask why I need a ...
1 comment
Autoimmune Disorders and Rare
Aug 19, 2018Aug 2018

Posted by Alimacbean
My mind so badly wants to get in shape and lose this 25 pounds weighing so heavily on me, in more ways than one. But my body is exhausted at the end of the day and longs to rest on the couch counting the minutes until it's bed time. I miss my ...
5 comments
Autoimmune Disorders and Rare
Aug 20, 2018Aug 2018

Posted by LadyAlyxandrea
My short term memory is so bad. I put like 4 coats of deodorant on in the morning because I forget whether or not I've put it on. I constantly forget to take my lunch to work or take my lunch box home after work. I forget my wallet at least once a ...
6 comments
Autoimmune Disorders and Rare
Aug 22, 2018Aug 2018

Posted by LadyAlyxandrea
Aaaand I've developed cervical vertigo. It's kinda debilitating. Like more than pain. Even laying down it feels like I just got off a spiny ride at the fair. It makes me nauseated and my head feels like it might roll off. I can stand and walk and ...
2 comments
Autoimmune Disorders and Rare
Aug 24, 2018Aug 2018

Posted by LadyAlyxandrea
It's not fair that I have all the suffering of Crohn's disease and none of the weightloss. If I have to suffer I'd rather it have one silver lining
2 comments
Autoimmune Disorders and Rare
Aug 24, 2018Aug 2018

Posted by LadyAlyxandrea
This is good. It's still difficult and hard.
1 comment
Autoimmune Disorders and Rare
Aug 27, 2018Aug 2018

Posted by dawilderone
Ulcerative colitis and psoriatic arthritis. Had no idea that UC was auto-immune until informed by Dr who diagnosed PA
1 comment
Autoimmune Disorders and Rare
Aug 27, 2018Aug 2018

Posted by memorylikeasieve
Fuckin hell. Last night, while I was trying to sleep, my neck subluxed so badly that it made a loud, painful crack. No kind of pillow or arrangement of bedding seems to help keep my neck stable. >.<
4 comments

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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