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    Need your input, fellow eds sufferers

    #Allergies #IBS #Fibromyalgia #GERD


    I have been having increased allergy symptoms which i believe are partly due to worsening wheat/gluten sensitivities/allergies. I am waiting for my first appointment with an immunologist at the end of November for ?Mast Cell Activation Syndrome?. The symptoms are requiring me to take Benadryl. I also was having trouble swallowing (even when allergy symptoms were pretty much gone.) My esophagus is working too slowly and your and water are taking a long time to make it to my stomach. All swallow tests in the past were "normal." I had a hiatal hernia repair and fundoplication which look normal in scans.

    I have seen pics on the Mighty of EDSers with NG tubes. Are the symptoms I described those which led to people needing an NG tube? Have any of you also experienced these symptoms and what have you done for it?

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    I’m allergic to the outdoors, most safe foods, and gravity 🙄 #Allergies

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    Advice needed after rheumatology evaluation please

    Ten months after first asking my primary doctor for a rheumatology referral, I finally had an appointment with one yesterday. It didn’t go as well as I had hoped. I have a lot of different symptoms and pain in every area of my body. I have seen a neurologist, gastroenterologist, and orthopedist. I do have tendon tears that are causing pain, but it doesn’t account for most of my symptoms. My ortho and physical therapist think there might be a systemic tendon issue. My doctors ruled out many things with lots of tests. They only want to cover up symptoms, so I was persistent for an answer and finally got a referral to a rheumatologist. Unfortunately, he was pretty dismissive. He said he read my medical records from my primary care, he asked me questions, and he gave me a physical exam. He asked if I had a prostate exam (I am a transgender man) and didn’t know most of my current diagnoses. I also realized later that he didn’t ask me about my cognitive symptoms or check anything but the areas I already know there are tears and push on a few of my vertebrae. I asked about pain management because I am allergic to corn and derivatives which are in most pharmaceuticals. He didn’t know anything about compounding medications or herbal supplements. He recommended physical therapy and to “figure out what works for you.” At the end of the appointment he said he was ordering 4 blood tests. Repeating the 2 inflammatory markers my doctor has tested a few times and were normal, a different RA test, and one to check for muscle degeneration. He said that if those come back normal than I don’t need to follow up with him. He said to follow up with my ortho because my pain is likely due to injuries and micro traumas. And to see an endocrinologist, even though I already had a lot of hormones checked with my primary and doctor who prescribes my testosterone. And to continue with the heart monitor I’m wearing this week and the cardiologist because I could have postural tachycardia. I was nervous and felt pressured to say that plan was fine.

    I got the blood work results via the lab’s app today and they were all normal. I am so upset. The doctor said someone would call me with the results. I am not a doctor, but I know there are other tests, blood and otherwise, that can be done to further investigate my symptoms. I’ve been researching my symptoms and connective tissue diseases for over a year. I feel like most medical professionals don’t care enough to dig deep into what’s going on and just pass me off to others or give me meds for symptoms.

    I don’t know what to do. Do I tell the person who calls from the doctor’s that I want to follow up anyway and ask the rheumatologist for more testing? Do I go back to the ortho and have him check all of my joints, back, neck, hands and feet? Do I ask my primary for another referral to a different rheumatologist, when she didn’t even want to refer me in the first place? The original referral said “low suspicion of rheumatic cause, patient requested eval.” I don’t know.

    I am just so exhausted, feel defeated, and want to give up.

    #Undiagnosed #ChronicPain #ChronicIllness #CPTSD #Depression #GeneralizedAnxietyDisorder #Anxiety #ObsessiveCompulsiveDisorder #AvoidantPersonalityDisorder #SuicidalIdeation #CarpalTunnelSyndrome #TriggerFinger #Bursitis #Tendinitis #rotatorcufftears #labraltears #sciatica #Migraine #IrritableBowelSyndromeIBS #SleepApnea #Asthma #GastroesophagealRefluxDisease #Allergies #Folliculitis

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    Random Itchy Rashes of Unknown Origin

    Hi, hope y’all are well! So, I’ve been getting these random rashes for a while now and don’t know what’s causing them :( the itching drives me crazy and sometimes scratch to the point of bleeding cause I just can’t help it. Just took a Benadryl, so hopefully it helps 🤞 I struggle with chronic inflammation and a weakened immune system, so that might be why my histamine response is overactive. Any ideas?

    #Eczema #Allergies #ChronicInflammatoryResponseSyndrome


    What is this thing called "Hope"? #seekingknowledge

    What is this thing called hope? Yes, this is a serious question. What frame of reference do you use to explain something to someone who has never know or seen hope? We liken the situation to finding a single Waldo in a swarm of people who all look slightly like Waldo. But none ARE Waldo.

    We are, at this point, 47 days into our 2 new Antidepressants, 21 days into our Antipsychotic and no change other than we sleep an added 1 to 2 hours a night. We are grateful for that. Our meds are increased every 2 weeks. I, since none of the other want to attend at this time, do video chat with at least 3 Doctors every week. The all tell me that hope will help us in this wait and see pattern we currently find ourselves stuck within.

    We believe that everything in our universe has a counter balance. Night has Day. These are concrete, provable, repeatable facts available to establish what distinguishes Night from Day. Where "Hope" along with, it's 1st cousins the other emotions and "feeling" are all abstract concepts not grounded by facts.

    What reference points does one use when trying to describe abstract concept of "hope" to one who has never seen or experienced it in their lifetime. How would you describe colours to a person who has never seen them? We have as little insight into what "hope" or any of the "emotions" are, at this point. What is this thing called "Hope" and where do we find it?

    #SexualAbuse #SexualAssault #Childhoodneglect #DomesticAbuse #DID #raynauds #Fibromyalgia #MyalgicEncephalomyelitis #RheumatoidArthritis #DegenerativeDiscDisease #Hypertension #Trichiasis #irritableboweldisease #GeneralizedAnxietyDisorder #AnxietyDisorders #PanicAttacks #Agoraphobia #Insomnia #Rosacea #Claustrophobia #heartmurmur #ComplexPosttraumaticStressDisorder #Allergies #Dyslexia #OCD #Trichotillomania #cleithrophobia , #IntrusiveThoughts #SuicidalIdeation #haphephobia #EatingDisorder #MajorDepressiveDisorder #SocialPhobia #Acrophobia #Psychosis #DissociativeDisorder #audiohallucinations #visualhallucinations #intervert #raynauds

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    Which would you pick, seasonal allergies or the common cold?

    Let's start off with some honesty, I'm writing this in an allergy-induced haze so I may be biased on the answer to this question.

    So many of us, myself included, are managing chronic conditions or ones that require maintenance often, so when a cold or seasonal allergies kick in it's no big deal, right?

    But now on top of normal brain fog and fatigue, I get the 'Special Edition' version that comes with even more of both + the addition of new things like fever, sneezing, coughing, general 'I don't know where I am'-ness. A cold or allergies don't usually knock me out, but they do knock me around the ring for longer than I'd like.

    If you had to have one, which would you pick and why?

    🌿 Seasonal allergies


    🌡 The common cold

    P.S. I'm voting for🌡 as I skip off to close my eyes and hoping my allergy-relief meds kick in soon 🤞🏻.

    #Allergies #CommonCold #CheckInWithMe #ChronicIllness #Fatigue #Disability #MentalHealth #RareDisease

    #BrainFog #ChronicFatigue

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    What’s your experience with taking antihistamines for migraine pain?

    I don’t know about you, but Benadryl is one of my go-to abortives for when I have a particularly pesky migraine. I either take it alone or in combination with one of my abortives.

    I learned about the migraine-Benadryl connection when I was going to the ER once a month for pain relief. They always gave it to me in my IV and explained that it helps inflammation in the brain.

    Here’s a great article about its effects/benefits:

    💊 This is the fact I find most interesting: “The antihistamine action blocks circulating histamine from attaching to cells and causing negative effects like swelling of blood vessels. Also, histamine in the brain promotes wakefulness so blocking this perky chemical messenger may help calm our nervous system.”

    It can also boost the effectiveness of other migraine medications. Are antihistamines something you use to ease an attack?

    #ChronicVestibularMigraine #HemiplegicMigraine #Migraine #ChronicPain #Allergies #RareDisease #Disability #ChronicIllness #Fibromyalgia #Endometriosis #Spoonie


    New group for selective antibody deficiency

    Hi guys I‘ve set up a new group for people with selective antibody deficiency( also called impaired polysaccharide responsiveness or specific antibody deficiency). I‘d love to see some of you over there that either have this primary immunodeficiency themselves /know someone with it or just want to chat about related topics. The name of the group is „selective antibody deficiency“.

    I will use this opportunity to talk about this disease and spread awareness. Selective antibody deficiency (SAD/SADNI) is a primary immunodeficiency. In SAD-patients the immunesystem fails to produce IgG antibodies towards polysaccharide encapsuled bacteria. The consequences are many recurrent infections of the upper respiratorytract, sinuses, ears and much more that are hard to clear. This can lead to end organ damage (e.g. bronchiectasis) In about 80% of SAD cases the Patients suffer allergies, asthma and/or other atopic manifestations. This doesn’t mean that you should worry you have SAD just because you have asthma or allergies. SAD is (like all other primary immunodeficiencies) a rare disease and it is much more likely that you just have asthma / allergies.

    Only so it is clear: I‘m not a doctor what so ever, this is only to spread awareness.

    #PrimaryImmunodeficiency #ImmuneSystem #Allergies #Asthma #Bronchiectasis #sad

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    Highly allergic, hate travelling🌻🌱☀️


    #Allergies #Eczema #MentalHealth #Anxiety #DistractMe #MakeMeLaugh

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    Hay Fever.

    I can't even with these frigging allergies lately. 😩#Allergies #runnynose