u/luckycharms222

The constant itching burning and tingling is driving me crazy. I have constant facial rashes and dry skin and flushing and tight throat and everything hurts so badly and my body and head have internal vibrations and it feels like my eye is gonna explode. My mouth and eyes and skin are so dry. I’m so miserable and my chest hurts so much. I’m so many antihistamine but I don’t think they’re helping anymore and I can never sleep it seems due to how horrible the itching and burning and tingling and nerve pain. My swelling in the evening is so bad too. I can’t tolerate cromolyn and I’ve seen three immunologist me who say I’m too complex and won’t help me either. It has been years of this and I can’t tolerate steroids. I’m only tube feeds, but I feel like I’m gonna die all the time I’m so uncomfortable all the time. It has always been three years and my throat alway feeels swollen. I cannot do this forever. I’ve never even had a life

I haven’t been diagnosed, but I’ve had chronic head and neck and eye pain forever. Do you guys ever feel you like cannot fully see out of part of left eye with your left eye buldges out abs has hella pressure behind it and hurts when moving? I get bad left temple pain that goes into my trigmeneral neuralgia nerve with lots of pain, pressure or numbness then goes into almost like throat neuropathy symptoms. Usually neuros just do MRIs which are always fine and so are my eye exams but it’s so unbelievably debilitating. My doctors just say I have vestibular or occular migraines because I always feel like I’m on boat or end up walking like I’m drunk. My head just feels so heavy and brain fogged and inflamed. It has so much pressure so days I think it might explode. I can never tolerate light. I’ve mainly been in bed for years because laying in the dark is the only thing that helps. Any suggestions? I wanna beg doctors for a lumbar puncture since my ENT mentioned this worsening the leaks and hold in my skull, but the ERs just say it’s psychosomatic. I also have staring into space spells and high blood pressure if my brain fog and head pressure are super intense. It feels like my side neck veins might explode too. I have bilateral semicircular canal dehiscence syndrome and a history of cerebral spinal fluid leaks. I get blurry vision, floaters, and flashes that come and go a lot too.

I haven’t been diagnosed but I’ve had dry eye and mouth for as long as I can remember. I’ve been having constant dry burning eyes for weeks. Even closing them hardly gives any relief. I’ve tried warm compress and different eye drops but the drops just make them burn more and don’t seem to help or add moisture. Any suggestions? I’m trying to get into rheumatology soon.

I’m having a rheumatologist visit after having a significant amount of pain, fatigue and random issues for eight years that keeep getting worse. My ANA and another autoimmune marker came back positive. I have a lot other diagnosis’s but I’ve had a feeling since like 2018 that it all goes together because everything flares at the same time a lot. I also have l severe MCAS and ineffective esophageal motility. I’m mainly worried about sjorgens because I’ve only been able to get liquids down because my mouth, throat and esophagus is constantly dry and tight so is everything internally. I have every specialists you could think of even a neurosurgeon but I think that’s unrelated but I never get any pain relief just more shit to add to my list like severe neuro issues, vascular, GI, heart, urinary, spine, nerve joint muscle pain, numbness, gyno and hard time walking and always short of breathe. Anyways can I just bring a list of my symptoms and diagnosis and pictures of my swelling? I think if I had to mention every symptom I would forget too much. I feel like I’ve been dying for years, but I’m so afraid if I say that they’ll say it’s all anxiety or stress. I’m also worried they’ll blame it on my malnutrition from MCAS because I’m constantly reacting to my tube feeds and have lost a lot of weight. My pcp and other doctors aren’t very helpful. I’m on palliative care, but they just say I qualify for hospice. How do I go about this without begging the only doctor I have left to help me? I know I’m probably gonna cry if I can lol I can never produce tears anymore.

I’m so broken. All I want is to eat foods I love and used to eat as a child. I never got a chance to heal from my eating disorder that I had almost all my life or heal my inner child by letting her eat what she wants. Now I’m reacting constantly to very little amount of tube feeds and can’t get food down or tolerate anything and I’m dying of malnutrition due to my mast cell activation syndrome. My doctors won't help me get TPN or improve my quality of life. I hate this life so much. It’s incredibly painful and lonely. At least I’ll finally get to rest once I go on hospice soon.

I’m so broken. All I want is to eat foods I love and used to eat as a child because I never got a chance to heal from my eating disorder that I had almost all my life or heal my inner child by letting her eat what she wants. Now I’m reacting constantly to very little amount of tube feeds and can’t really get food down or tolerate anything and I’m dying of malnutrition. I hate this disease and this life so much. It’s incredibly painful and lonely. At least I’ll finally get to rest once I go on hospice soon.

I’ve had LS go undiagnosed for years. I have constant vulva, uretha, clit skin burning itching for years to the point I lost my clit and labia minora around 24. I also have pudeneal neuralgia and a constant tight painful pelvic floor and ovary, bladder, kidney and lower back pain due to IC and endometriosis. I’m mostly bedridden due to many conditions and fatigue. This is terrible but I don’t have energy to clean down there or help changing my underwear everyday. I’m honestly lucky if I remember my cream once a week even though the pain is mentally getting to me. I can maybe shower once a week. I get a lot of white discharge and constant pain too. Does anyone have any suggestions on how to better help myself or other meds I can try? I constantly feel dry and like I’m tearing all the way to my butt, but I also get discharge and burning when I urinate a lot and vulva swelling. I also think I’m also reacting to my toilet paper because I have eczema like rashes and the paper gets stuck. I don’t really use the clob just estrogen cream.

Does anyone else here have severe allergic reactions to everything? Have you tried xoliar? I’m currently dying of malnutrition because I even react to formula going into my j tube and I can’t get food down.

I cannot believe I’ve been dying of malnutrition since last year. Someone here recommended Dr. Hagaman at Vanderbilt and he’s just fine with letting me die and is refusing to find or try meds that helps besides antihistamines. He won’t prescribe LDN or ketotifen or an inhaler for my asthma even though I’m constantly having anaphylaxis to my tube feeds and reacting to my inhaler. I’m about to just kill myself. If you value your life. Do not see him!

I was running my feeds and then they came unconnected and stomach acid started leaking out of the J portion. Whenever I put my meds in my gastric I no longer has the cooling sensation and feels like formula and meds go into my chest and kinds gets irritated around my ribs. Is this normal? Can I continue to run my feeds into my J? My GI said to follow up with him next week, but I’m kinda worried about my medication absorbing int my stomach since sometimes even after I flush it comes back into the gastric line. I also always feel like I have a mix of acid, mucus, formula and bile come up into my mouth and get caught in my throat.