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    Community Voices

    I’ve been struggling for years with chronic pain, dizziness and fainting spells. I got Covid 2 months ago and ever since then I’ve had worse pain and pots episodes. I’ve become unable to do my groceries without almost fainting and can’t do the things I enjoy anymore. I don’t feel like myself anymore and I’m wondering if it’s time to get a mobility aid and how to approach the subject with my GP.

    5 people are talking about this
    Community Voices

    The only help was available

    <p>The only help was available</p>
    3 people are talking about this
    Community Voices

    I saw 10 kinds of migraine listed here, I have 9.

    I read here that there are 10 kinds of migraine. So far , I have 9. I have had migraines since I was 12,over 50 years. They started with menstrual triggers, Since then I've had a histerectomy and been through menopause. That's when things got strange. It started with uncontrolled movements in half my body, then fainting and finally 6 to 12 hours of vomiting. I just started with a new neurologist, he ran every scan and test and hasn't found answers yet. I get Botox and try to take meds, but often can't keep them down. I have no social life. My dogs and horse are my companions, but I have been married for 45 years. I consider myself blessed just for that.I was a fanatic athlete, mountain climbing, running, riding and gardening. I was actually paid well for gardening. Now , if I actually sleep all night I am stoked. I found this site a long time ago, but it is hard for me to talk about all this. I was so strong, born of Vikings, educated in a medical family and actually paid to sing. All of our parents finally died. I lost some incredible dogs and a horse, went through depression and rarely do anything fun anymore. Well , all that to say, I still feel blessed.I live in Hawaii near the beach. It truly is beautiful. I have experienced a strength and connection with God, the universe and 2 awesome grown children and their kids. My husband still stands by me. I have found so many people here and in snatches of encounters that do not have much hope. Hope is knowing that there is so much more than my pain. heck we have seen the furtherest star in the universe!. Life is facinanating. They named the star Earendel, after a Tolkien character.it is from the old Norse. I look into the heavens and I see my home. I am very small in this vast heaven, I find all of these troubles a passing comet, until I learn to fly. ( oh and I fully expect to see all my lost pets in heaven).

    Lessons Learned From Grieving an Unexpected Diagnosis

    In the past year, I started experiencing lightheadedness, fatigue, headaches, shortness of breath, and “brain fog” — and the symptoms increased the longer I stood. Basically, I was experiencing everything some people would feel before fainting, but luckily, I’ve never hit the floor. There are days when someone speaks to me, my mind is cloudy, and I’m trying so hard to process what they are saying to me that it becomes exhausting. Two weeks ago, I had no idea what neurocardiogenic syncope was. I had no idea I was about to be told that three of my heart valves were mildly leaking and that I have a small hole near my atrium. It was honestly unexpected news. I’ve heard “Your lab work and scans were all normal” so much that I didn’t expect to hear anything other than that. It took me a week or two to actually process the news. I felt like I was passing through the five stages of grief over and over again. Denial: The scans I had a few years ago never showed this, so what if the doctor made a mistake? Sometimes I do have good days when my symptoms are minimal. Are my concerns even valid? Anger: Didn’t anyone catch this years ago on my last scan? Of course with my luck, this is happening to me. Bargaining: What if I had taken better care of myself? What if I had changed the way I eat and exercise? Would this still have happened to me? Depression: I have a lot of health anxiety regarding my heart, and it also manifests as depression symptoms. I am at a high risk for stroke, and I am terrified of the possibility of dying young. I’m also afraid  of having to face one of my worst fears — open heart surgery. Acceptance: So far, everything is mild and just needs to be monitored. My relationship with my body has changed, and there are things I have to do differently now, but that’s OK. One aspect of an invisible chronic illness is the compromise and sacrifice that often comes with living with the condition. You may be trying to navigate your life while simultaneously trying to figure out what type of life won’t make you feel too sick. It can be really frustrating — especially if you’re young. Changing your life plans can come with a lot of sadness and grief. When something in your life gets turned upside down at such a young age, you may start to view life differently. One good thing about me, though, is that I have the desire and willpower to persevere. I’ve had to accept that I have some limitations now, but that isn’t going to stop me from achieving anything I set my mind to. There are a few things I’ve had to learn how to do differently, and there also are a few things I have learned about life in general. 1. It’s OK to grieve for the life you had before your symptoms began. I don’t remember the last time I was able to walk around a store or through the mall without feeling like passing out or needing to stop to catch my breath. I went to IKEA with my boyfriend a week ago, and at one point I got so lightheaded that I had to stop. I was walking, which had come easily to me before my symptoms started. Sometimes I feel like because I am young, I am invincible. But that’s far from the truth, and I’m grieving it right now. 2. Don’t take the little things for granted. I will never take for granted how good a deep breath feels. Learning the power of breath saved me. When control of your body is taken away, breathing is something that can allow you to gain some control back. If all I can do is take a few big, deep breaths, that’s OK because that still means I’m alive. Being able to breathe during procedures or episodes is helpful to me. Whatever you are feeling in the moments when you find yourself needing to focus on your breathing will probably pass. I am grateful for the power of breathing. 3. It is OK to rest when you need it. If you are tired, that is OK. Your mind and body might be adjusting to your condition, and it may take a while to find your new baseline. Our bodies seem to be always changing, and that is OK too. Every day is different for most people. We live in a society that can promote a toxic productivity culture in which not taking breaks and working overtime is applauded. However, for me, taking regular breaks and sitting down has been crucial to preventing burnout and symptoms of syncope. If I haven’t taken a break for a while, my body will definitely let me know that I need to. Trust your body — it knows you best. When you have a chronic condition or have recently been diagnosed with one, lean into it. Learn everything you can about your condition. Learn from your body. What makes you feel good? What makes you feel sick? Start to intentionally seek out and recognize the good things in life and be grateful for them if you can. Use what you learn to help others — just as I want to do.

    Community Voices


    After getting diagnosed with POTS last year, I thought that was going to be the end of the mystery of why I feel so sick. But, just as life happens to unfold, this was indeed not the end.

    Once I started treatment, things got a bit better. I could work again and I was only fainting a few times a week, if that.

    However, recently, things have gotten worst than ever. I'm back to fainting multiple times a day, except this time it has left me almost completely bed bound. I lost my job, my hobbies, my ability to even shower without someone close by.

    It's been hard.

    But even worst is I am having bad abdominal pain, constipation, vomiting episodes, and more GI tract symptoms which I've never had before.

    I heard that POTS has many comobilities, and I fear that this might be one developing.

    I am trying to hold out and change my lifestyle but as the days get worst I fear I may have to go seek urgent help.

    What is everyone else's experience with POTS' comobilities, if any? And how long did they take to manifest?#POTS

    5 people are talking about this
    Community Voices

    Anxiety weight loss

    Relationships are a trigger for My anxiety. So when I start to like someone and they start to like me back, and the possibility of a relationship becomes a reality, my anxiety shoots through the roof. i’m in a constant state of fight or flight so my body doesn’t wanna eat and I end up losing anywhere from 10 to 15 pounds. I’m already a fairly slim person so losing that much weight means I get lightheaded and I’m prone to fainting. what’s worse is when guys see my body this way and think it’s attractive when on the inside I feel sick and weak. When we break up the anxiety disappears and it’s a relief and I start to gain the weight back. I’m not really sure how to control this. I’ve seen therapists but breathing exercises and journaling can only helo so much in this case. Anybody else go through this? #Anxiety #relationship #WeightLoss

    1 person is talking about this
    Community Voices

    A letter to my disabilities

    I wrote this as a way to cope with chronic illness at a young age

    To my disabilities,
    You are the worst thing thats ever happened to me. You make me life a living hell from the moment I wake up to the moment I fall asleep. You don’t give me a break from the pain and it feels like you’re trying to attack whenever you can. You have shaped me into a better me to deal with you and I’m willing to fight you. I dont know why you came to me or what I did to have you around. The medications I’m on feel endless and even with them, you still control everything I do, how I get up from a seat, how I’m constantly shifting to keep from fainting, and constantly putting my body back together. You make me fall apart every day. Most days I’m not willing to put up a fight anymore and want to give up with trying because it feels like you still overpower me daily. It doesn’t seem worth it to try anymore. Sometimes you let me enjoy myself for a couple days but then you make me pay for it worse than normal. It has only gotten harder with you, a simple infection leads to hospital visits. The weakness and fatigue are endless. I just want to feel normal but you’ll never let me. I don’t know a life without pain anymore, I dont know a life without multiple injections and more pills than anyone should be taking just to live somewhat normally. You have made me who I am today and I’m trying to get motivation to fight you and not let you win. You could win easily and make me wheelchair bound at any point, I don’t know what your plans are for the future but I don’t think it’s good, #MastCellActivationDisorder #EhlersDanlosSociety #PosturalOrthostaticTachycardiaSyndrome

    Christina Aldridge

    What Emerging From a Chronic Illness Flare-Up Feels Like

    While in the midst of a chronic illness flare-up, it feels like I am in a fog. It feels as if everything is hazy with a deep, dark film covering my world. When I have a flare-up from any of the things that are “wrong” with me, it is often subtle, a sort of cumulative effect. I have a few days where I feel just not quite right. I have many days of fatigue so bad I would rather drag around a bag full of bricks all day. There’s the nausea, the pain, the blurred vision, the mood swings and baseline anxiety, the all-encompassing depression and underlying fears. The daunting inability to regulate a single body system leading to fainting, the inability to digest leading to not eating, and the constant overstimulation of the nervous system often resulting in, at minimum, a neverending vibrating sensation. And there’s whatever new symptom I may have. In this most recent case, a throat and neck pain. Neck pain that receives no relief from pain killers. Throat pain that luckily is more about sensation than function, but off-putting nonetheless. These things can last hours, days, weeks, and months and be so unpredictable and inconsistent that it is maddening. Typically when I’m in the midst of a multiple sclerosis flare, I have every cognitive defense up in order to ignore, distract, and pretend it’s not happening. I try my hardest to carry on with my daily routine and schedules and follow through with all social plans and things that I want to do despite struggling so hard. It is similar when I’m in a depressive episode. Daily tasks feel daunting, and social plans feel crushing. However, if I pretend it’s not happening, sometimes being so busy leaves me feeling too exhausted to have time to feel the overwhelming sadness that inevitably settles in. But, I digress. This post is about emerging from these moments and coming out on the other side. When I move through the depression, or when I notice my symptoms (new and old) slowing down or dissipating, it feels as if I opened my front door after a storm.  When things are still and quiet and fresh and bright, that’s the most noticeable — the brightness of literally everything. When I can walk down the hall without being winded and I can sleep a full night, that’s when colors are more vibrant. When I can do yoga and go to work without feeling immense pain, that’s when I truly exhale. And when I make it through a day, or even a half-day without crying or feeling extreme anger, that’s when I know I will get through it, and I really am OK. Coming out of a flare of any kind feels like a reset. It feels like work to put the pieces back together, but it feels more worth it each and every time I recover. There is always a thought lingering in the back of my mind (especially when new MS symptoms are involved) that I am now carrying this damage with me forever moving forward, but it feels lighter now. I know it will always creep back in expected or not, covert or overt, physical or emotional; these things will never go away for me. However, when I am able to see that light at the end of each tunnel, I am reminded that the permanency of it all is not the worst-case scenario. The hope and the good days are truly the reminders that I am, as the kids say, living my best life — to the best of my abilities.

    Community Voices

    What It's Like Living With Dissociative Identity Disorder

    I see a lot of people on the Internet who make out that #DissociativeIdentityDisorder is just an alter syndrome, where your brain makes these different characters and you become them at random intervals. I’m here to tell you that that’s not even the half of it.

    1) Switching headaches

    You can get absolutely the worst headaches you’ve ever experienced when you switch from alter-to-alter. These can be mistaken for your average #Headache , a #Migraine , or even a cluster #Headache . They can be that bad.

    2) Amnesia

    You have amnesia barriers between alters. Generally speaking, unless your communication is on point, if you switch with another alter, you will lose time, that alter will be confused and have no idea what, when, where, how…

    3) Depersonalisation/Derealisation

    You know that feeling where you think that everyone around you is a robot, you aren’t real and the world around you is a made-up simulation and everything in it is non-existent? No? Look up DPDR and you’ll understand how scary that is.

    4) Identity Confusion

    You forget who you are. You have periods where you don’t even know who you are. Imagine having a constant identity crisis. In fact, as I write this, I have no idea whether I’m Alex or Sapphire right now.

    5) #Depression

    Ah yes, the big #Depression . Considering that DID is a #Trauma -based disorder, you’re bound to feel a little down about life. I’m down-playing it a lot here. A huge percentage of people with DID have attempted suicide, self-harm etc in their lives.

    6) cPTSD

    Again, DID is a #Trauma -based disorder. PTSD is common, cPTSD, or complex PTSD, is a little less common. cPTSD forms after repeated or prolonged #Trauma . Think regular PTSD and amplify every symptom by 100, then you might be close to cPTSD.

    7) Lightheadedness

    What causes this? I don’t actually know. But I do know that when I’m feeling like I’m about to switch out, I get lightheaded. I don’t lose consciousness in the traditional way of #Fainting , but I lose control of my body, and when I come back, the lightheadedness returns until I can ground myself into real life once again.

    8) Seizures/Jerks

    I’ll be honest, I don’t know a great deal about this. Look up non-epileptic seizures and you’ll see what I mean.

    9) Dissociation

    Yes, even though it’s literally in the name of the disorder, you rarely see dissociation portrayed in the media, on social media etc. Imagine you’ve been on autopilot and gone from one place to another and gone “whoa, how did I end up here?” Once again, amplify that, you may have a dissociative disorder.

    10) Disordered attachments

    Bear in mind that different alters may have different feelings towards different people. For example, in my system, one of my alters sees a man we know as very attractive, while the majority of the system is asexual and many are aromantic. This same man is an abuser to some alters.

    2 people are talking about this
    Community Voices

    How to exercise with chronic migraine?

    Hi y’all! Im new to this group and this app, but I was wondering if any of y’all know how to safely exercise with chronic migraine? I was diagnosed two weeks ago. I am a collegiate athlete and currently am unable to even jog or bike a short distance without making the migraine so bad I feel nauseated. I also have POTS so fainting also very much aggravates my headache. Any tips are welcome!

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