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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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Oldest Posts By TaraMarshall (4) (Page 2 / 9) Posts by anyone

Autoimmune Disorders and Rare
Apr 9, 2018Apr 2018

Posted by vita
Anyone here battling chronic Lyme disease and coinfections? If so, how are you handling your presumably pro-science outlook with your denied-by-science diagnosis? (To anyone who might feel like telling me I don't have CLD, you should know that it ...
5 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
Shared from Health & Happiness
Apr 11, 2018Apr 2018

Posted by TaraMarshall
Woke up with right hip partially dislocated, can't get it to slip back into place. Ow. Need to suck it up, I've got a meeting with the Phoenix PD Cross Disability Advisory Council to get to. Life with Ehlers-Danlos Syndrome. If I can't get it ...
2 comments
Autoimmune Disorders and Rare
Apr 11, 2018Apr 2018

Posted by KKGator
Just needing to gripe a little. Having a major fibro-flare. It's been going on for about 3 months now. Not taking anything but Tylenol for pain, which is migrating all over the place. Wish I had a big bag of weed!!!! Seems to be the only thing ...
6 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
Apr 13, 2018Apr 2018

Posted by Alimacbean
Does anyone have Sjogren's Syndrome? If so, how difficult was it to get diagnosed? What symptoms led to the diagnosis?
3 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
Apr 20, 2018Apr 2018

Posted by LadyAlyxandrea
Interesting development So for as long as I've had my pain, steroids of any kind have done...well...nothing. So a few weeks ago I developed pitiriusis rosea, a viral infection like chicken pox that covers your body in a massive amount of ringworm ...
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
Apr 22, 2018Apr 2018

Posted by CarolinaGirl60
Greetings, earthlings. I have fibromyalgia, gastroparesis...and suspect that I have dysautonomia. Chronic pain—that’s one way to put it! I it constant pain?.
4 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
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
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
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
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
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 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 13, 2018Jun 2018

Posted by LadyAlyxandrea
So today I saw my 'new' pain specialist. I say new but I've been a coworker of his for 3 years. He took one look at my cervical CT and shuddered. 3 neurosurgeons and a spinal surgeon and a different pain specialist ALL said my neck looked fine. ...
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
Autoimmune Disorders and Rare
Jun 17, 2018Jun 2018

Posted by BookDeath
Hello, all. I have: Post-stroke syndrome (now rearing its ugly head); collagenous colitis (a form of inflammatory bowel disease); epilepsy; and osteoporosis, mild CP, AND an AVN. Do I fit this group?
4 comments
Autoimmune Disorders and Rare
Jun 18, 2018Jun 2018

Posted by MusicLvr
Hello, I'm new here. I have fibro, DDD, arthritis, joint hypermobility, among some other things. Saw a new rheumy today, bc mine no longer takes my ins. The new one was awful. Treated me like a junkie, wouldn't let me finish a sentence. Looking ...
5 comments
Autoimmune Disorders and Rare
Jun 20, 2018Jun 2018

Posted by rogeralyn
Having one of those days where I want to give in and scream! Not very manly I know but don't care right now.
3 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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