I really was hoping that once I gave up drinking and smoking I would see some improvement in my health or at least my weight.
Sometimes I do feel like I am just overexaggerating or its all in my head like some docs or friends have insinuated. Then I try to push myself and end up causing more issues so now I am accepting that I have some issues – they are not life threatening. I am very fortunate. Grateful to be mobile and capable of healing. I have hope that I will be better one day but for now I am befriending pain as my pal. We have been through a lot together.
My symptoms are chronic. Almost all of them are with me daily every second of the day. My flares are when the symptoms get aggravated and get worse than my normal day to day. Saying that makes me feel like I’m complaining. I hate that. I am not the same person I was before November 2021. I have shed a lot of my life and in a way this is a blessing as I learned who my friends were. Who I could lean on and it all brought me to sobriety 
I am writing this to share my story and journey. Maybe something may be helpful for anyone else with similar symptoms. I do apologize as the first post will be long.
*** I was diagnosed with MCAS (Mast Cell Activation Syndrome) and HIT (Histamine Intolerance) after dealing with symptoms daily Since Nov 2021. What this means is that I am allergic to myself 
My body takes harmless touches/ substances to be threats and therefore creates an inflammatory barrier. It is trying to protect me. 
The harmless touch could be as trivial as me getting stuck in my shirt and getting scratched by the tag. The body creates a bubble of inflammation (like when you get hurt and it does that so it can create a scab and start healing). Then as you heal you itch as a sign that the wound is healing. So I am constantly in a bubble and at the same time constantly itching cause my body is in this endless loop. Well for a clumsy fuck like me I am totally fucked LOL My cells are creating excess histamine and at the same time I can not tolerate the histamine. FUDGECICLES!
It has been a long road to getting diagnosed. The diagnosis was presented on a few occasions over the years but dismissed (not sure why now). The experimental treatments and medications along the way have caused other issues and symptoms which have caused me to have a severe allergic reactions to anti-histamines and torn up my gut lining. Since Jan 2023 I have stopped taking any medications. I now only take an Aleve if my migraines get to an unbearable point and I some Vitamins but do not consider them to be medications.
My daily symptoms are continuous itching from head to toe (yeah I look like a crazed lunatic when I let myself go crazy with the itching otherwise it is me living in a tense body trying with every fiber not to itch), body swelling /inflammation, gut irritation, rashes / hives (sometimes visible and painful otherwise just bumps under the surface), fatigue and body overheating (this I thought was perimenopause and it could be both – I go through cycles of being super hot and sweating and then cold and chilly at least 20 times a day which last for 45 min – 1.5 hours.
The inflammation that initially hit me in late 2021 was severe and a shock. I gained 40 lbs in roughly 3 weeks and that caused major issues for my bones and overall body structure. The steroids they pumped me with (for a much longer period than they wanted due to scheduling issues between departments) caused more shifts in my body structure. No matter what I do or don’t do I can’t lose that initial inflammation. Best I have been able to do is manage it. It was hell not having my doctors believe me when I told them that my body will literally gain 10-20 lbs overnight and it takes me months to get back down. I finally got a smart scale that was monitored by my doctor and she was able to see the scale app asking if I was the same person weighing in. 
Yeah – then she believed me and that is what led to solidifying this diagnosis.
I am told that this is my life and nothing can be done as I am unable to take anti-histamines or other meds which would normally help manage these symptoms. I refuse to take this answer and am working on healing myself. For past 4 months I have been on a strict low histamine (even careful of foods considered to be histamine liberators). I swim daily and try to do other movements that won’t cause my body to swell. Sleep is out of my control but I do rest for 7-8 hours daily and do intermittent fasting. Grateful for sobriety and my tools cause I don’t think I could have given up all my favorite foods and drinks and been this disciplined without my recovery. I am also working on lymphatic drainage and ways to help my cells safely rid themselves of the excess histamine.
*** I started to have dizzy spells in February of 2025. They were not too severe and got worse over the year. I had them under control and manageable but after my accident in December they became unbearable. I was unable to stand up or lay down or bend down without totally losing my balance and orientation. Taking time off the screens and working on strengthening my Vagus nerve have helped. Now I see that MCAS can also have dizzy spells as a symptom. Of course it does. I do still get them from time to time but not as severe or frequent as before. Now it is once a day so way more manageable.
*** Muscle spams and dampness in the bones – I have had these issues since early 2010. The spot in between my shoulder blades has a spasm and it causes creates the sensation of having the breath knocked out of me. I am able to sense when this is about to happen and get myself warm and dry and also apply pressure to that area. No one has been able to figure out why this is happening. It is getting more frequent over the years. Like at least 20 times a month
***I had an ovarian cyst in 2023. When I went to have it looked at I was told it was only 6 cm and nothing to worry about. I complained about pain but I guess because I was walking ok and still working they did not think it was that painful. Months of back and forth and many x-rays we finally decided to have it removed. Turns out it was 9.4 cm and was pressing against the pelvic bone and pushing some organs. They ended up having to make a larger incision to get it out. Well in recovery I learned that they had cut a nerve by accident due to there being so much inflammation and visual obstruction. So now I have a constant stabbing pain on my left side. This will never go away as the doctors say. I am looking into ways to naturally repair nerve damage. During the recovery of the surgery I had some severe pains and described them as feeling like my stomach lining was being ripped apart when I moved. My cries were dismissed as just normal recovery pains. Later we saw on the x-ray that my stomach lining did have some light tears. Nothing was perforated so I guess I should not have been complaining.
*** TMJ – I have had this condition since I was in my teens. At that time my cushion in between the jaw bones that protects the nerves was thinning. Now it is almost non existent. It is super painful every time I open my mouth. My jaw is always tense and I am constantly trying to keep it from locking up. Surgery is not a guaranteed fix and those close to me who have had it are not doing so well. I was given a mouth splint to help shift my jaw at night so at least I could get some relief when I slept. I ended up literally shredding it within months. Then the replacement had some metal clasps to make it sturdier and I snapped all the bands. Now I do have a splint that is starting to wear thin but that is after a good 10 months so I’m making progress. I tend to also clench and bite my tongue or cheeks to deal with the pain while I’m sleeping. During the day I have other outlets which I can not do while asleep. I have had a slight headache since I was 13. We have done brain scans and neuro checks and can’t figure it out. I do believe its linked to the TMJ. This headache is always there and on the verge of exploding. The slightest loud noise, strong smell or sudden jerking movement can bring on a full blown migraine.
*** Cysts – so my body is forming cysts internally an externally. Not sure what this is related to. Been happening since 2023. My ovarian cyst I had removed. The one on my gall bladder is not causing enough pain or issues so it stays. The few on my neck are painful but tolerable. I have a few in sensitive areas that cause pain and irritation regularly. Showering is painful and so is using the facilities. Some days they do burst and I get a bit of relief but then they do come right on back. I am told that Manuka honey helps the body clear out cysts. I was applying it daily with little difference. Lately I have been taking ¼ tsp daily with Aloe Vera and noticing a few of them softening and shrinking 
*** Spine and hip issues – Symptoms began in early 2022. I associate it with the onset of sudden weight gain. I have degenerative disc issues. Both along my neck and lower back. The lower left is much worse than the right and now my left hip is also having some trouble (haven’t had the hip looked at cause what’s the point).
PHEW - that was a long post - thank you for reading if you got this far. No worries if you didn’t… this will hopefully be my space to document my healing
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im sorry for all you are going through i really am, i wish i could take it all away for you, its really quite something how much you help people given all you go through on a daily basis, you are truly amazing, i hope its helped you some to write all of this out, i wish i could do something for you…all i can offer is friendship and love and to let you know that i will be here should you need a friend xxxx
. I’m not saying they are not going through something but they don’t even acknowledge what I must be dealing with. It is exhausting having to deal with it and yes very lonely. I was a very social person and that feels like another lifetime now.
I knew some of what you’re having to deal with but not the full extent. I’m glad you felt you could share it here with us. It must be exceptionally hard for you and I so feel for you but you do remarkably well pushing forward, looking for different options for yourself and finding strength from within, though I know some days may not feel that way. You’re a remarkable warrior of a woman. Sending you so much love and support, always here for you 
