Hi I'm new to the mighty and I am in need of some advice! I have diagnosed Hypermobile Ehlers-Danlos Syndrome, Central Sensitization Syndrome, Endometriosis and Symptomaticly diagnosed POTS (waiting for appointment with cardiologist) and I am going for a late holiday dinner with my grandma, aunt parents and my spouse. Now like alot of granny's she loves to makesure everyone eats enough. Except for me eating is extremely painful and makes me get monsterously bloated and my fatigue gets bad as POTS makes you feel all wonky after eating. But she always keeps insisting. Currently I have one small meal a day of chicken and potatoes as they cause the least pain. So does anyone have any advice of how to nicely, make her understand that I simply can't eat all the food the others eat? #EhlersDanlosSyndrome #PosturalOrthostaticTachycardiaSyndrome #IrritableBowelSyndromeIBS #stomachissues
I found a friend of a family member who lives in Norway, but helps people who have fibro by looking at their DNA 🧬 and bloodwork to determine what neutracuticals (fancy vitamins) can help them. I’m sending her data from a 23andMe test, a bunch of blood work, and data from a GeneSight test (that shows how I metabolize things). I’m so excited for this! I’ve been very suicidal lately in and out of the mental hospital since December with 4 hospitalizations from suicide ideation. I also have other injuries from abuse and #CentralSensitizationSyndrome so we’ll see how much it helps, but I’m trying to be so hopeful and hang onto this piece of light and possibility. If anyone wants the lady’s info message me and I’ll give you her email.
Help! Please! For over 18 months, I have had debilitating sciatic nerve pain radiating from my L5 on down to my butt, side of thighs and usually stopping at the knees. I have fibromyalgia, central sensitization syndrome, RA, OA, degenerative disc disease, and have had four spine surgeries including L2-4 fusion. Since about 10 months after my 2018 addition of L2-3 to the L3-4 fusion, I started experiencing severe pain above and below the fusion. Then it shifted into the leg patterns. Since a March RF lesioning, on the left side, the pain pattern there turned to various forms of parasthesia, from tingling to numbness to on fire, to stabbing, to freezing….but now it wraps to halfway around the front of the leg instead of the back. Sometimes, I get groin pain on either side. At its worst, the pain has gone down to my toes, but not always to the same toes! You get it….there is NO pattern!
Worst…I’ve had continued pain treatments, have to take T4 with Tramadol too just to sleep, and have had every test in the book, including CT, two MRIs, and even an EMG. The best guess my surgeon or anyone else has is my fibromyalgia, my RA, my degenerative disc disease and facet arthropy…in other words, no one knows. I recovered well from my fusion, but tripped over a circular saw in our basement, tearing all ligaments in my right toes, to start this cycle.
Anyone have a similar set of symptoms? I believe the Fibromyalgia is part of it, since I have to use pillows to support my arms when I sleep on my sides, and can’t even stand most sheets touching it. So far, my only help have been the two ketamine infusions I had this month. All help appreciated! At least no Dr has suggested its “all in my head”!
I am so sick off toddler parenting life. I hate it. I cry every day and I can’t wait til she’s more independent.
Venting and looking for validation here not solutions. *Also would prefer if people kept their advice to themselves, and please don’t gaslight me in anyway.*
*Trigger warning: suicide ideation, sexual, physical, and emotional abuse.*
She invades my physical boundaries, which triggers memories of sexual and physical abuse. I work so hard to be a positive parent and to break the generational trauma of emotional and physical abuse from my family. I always feel like I’m falling short, but my therapist and PCP have both reassured me that I’m the best mom for my daughter and that she was meant to be parented by me, and of course I love her dearly. I just hope, pray, and meditate on that in these younger years of hers goes faster cus right now I have a hard time seeing out of this forest of turmoil, frustration, discomfort, and anger.
I also am medically complicated and severe chronic pain flares up during times of stress and with the added stress of toddler parenting, my cycling and pain has gotten so worse and more frequently. I rapid cycle every couple weeks to a month, and lately it’s been dysphoric mania for a couple/few days. I miss euphoric mania and hypo mania. I have cptsd on top of my bipolar, so I frequently have disrupted thoughts and flashbacks.
All of this is so exhausting and I know I’m not alone, and I’m gonna keep fighting the fight, but that doesn’t take away from the suckyness of my current state. I have suicidal ideation that group therapy, individual therapy, meds, diet changes, exercise, even medical marijuana hasn’t been able to shake. I am stressed to the max every second of the day unless I have time away from her while I’m at an appointment or something, but even then there’s a dark shadow around me because I know what I’m gonna have to go back to.
#BipolarDepression #Bipolar1Disorder #CPTSD #FibromyalgiaDiagnosis #CentralSensitizationSyndrome #Neuropathy #OvarianCyst #adhesions #brokentailbone #Recovery #Anxiety #Depression #SexualAbuse #RapeSurvivors #CarpalTunnelSyndrome #Tendonitis #Trauma
According to the hashtag system here, I was the person who first used the hashtag
#LupusOrphan on the Mighty, and I'm curious about how it then came to be its own Mighty group (as I didn't start one), who the 40+ members are, and what their stories are around this hashtag. I created it because I lost my mother to complications of #Lupus about 10 years ago, though in many ways I lost her to it before I was even born, because of the horrible toll it took on her, and thus on all of us who loved her, too. Are any others here willing to share a bit of their story? #LupusOrphan #CHFOrphan #CPTSD #Potsie #Spoonie #panic #Anxiety #Depression #Fibromyalgia #CentralSensitizationSyndrome