CallieAndToby

I've been in therapy for the past 15 years. I really didn't find the right therapist until the past 5-6 years. I didn't make any progress with many others. I developed OCD out of nowhere years after getting first ill and I went to the University OCD clinic and made a little progress and have followed up with my current psychologist; he mainly helps with my health stuff, he's pretty incredible. He got me a connected with a nurse case worker with my insurance to help with everything. We don't really talk about OCD much any more just what I'm dealing with atm. There are people in my family that refuse to have any understanding of the situation with my health and he has tried talking to them but only so much you can do. I wish there were alternatives to the current social media.

With the help of saline iv and abdominal binder I was able to make it to the beach for a bit. I laid down mostly on a beach blanket but hey that is totally normal because everyone else is doing it! Post exertional malaise today but I needed some bit of sanity and calm. Some of the photos I'm attaching are unedited but I was able to bring my camera and take some photos.

I have a lot of friends with very severe ME and dysautonomia and klonopin or Xanax seem to be the best at helping with PEM. I found out accidentally spending a year in bed and deciding one day just to take a little bit and it really helped. Whitney Dafoe is probably the sickest ME patient and once a month he takes a benzodiazepine and he's able to communicate b/c it clears up brain fog, they don't know why.

I agree with @Pistol that supplements and even vitamins can have serious side effects! I think I've had worse reactions to supplements than actual medication. With that being said things that have been pretty safe for me are: Vitamin D3 and Omega 3 gummies that also have DHA, EPA, and a bit of turmeric. Both vitamin D3 and omega 3 fish oils increase cerebral blood flow but just make me feel better. I take a magnesium supplement at night as well and it helps with constipation. I have the MTHFR genetic mutation and I was prescribed L methyl folate, methyl B12, and niacin. I can't take normal B12 I have a weird reaction to it and makes me tired. Niacin can cause flushing but I bought a kind that doesn't do that but niacin is also supposed to increase cerebral blood flow. I wouldn't recommend that latter supplements like L methyl folate until you are tested for the deficiency and/or mutation. Vitamin C makes me really really sick. It's really unfortunately a trial and error thing and finding the right dosing and we all react differently.

That's good news. Congrats.

I've been on iv steroids and oral prednisone and both made me insanely ill. Luckily when I stopped prednisone my symptoms went away.

I have a very rare blood cancer and right now my oncologist is saying no where-as my PCP was saying yes. I say speak to your oncologist. They keep telling me it's my decision but everybody is reacting to it differently, one of my completely healthy friends got a shot and ended up bedridden for weeks so at that point I'm just going to wait till I see the new oncologist at Mayo Clinic but that's not till July. I'm assuming you have dysautonomia too? After 3 months of a cancer treatment my Dysautonomia got 10,000x's worse and nobody knows what happened. Just thought I'd ask if you had autonomic dysfunction before or after and if immunosuppression treatment made it worse? Thanks in advance.

I got sick at 17 after mono and also developed severe bone paint age 16 which they attribute to having an MPN (myeloproliferative disorder). I really didn't have stress before that, my health problems and the way I was treated by my peers, some doubting family, my church, doctors calling me a psych patient, became my stress. My father forcing me to go to college (only finished 2 years in 4 years of attendance) even though I was extremely ill was stressful. Social media is also terribly depressing and stressful for me personally.

Hi Elisabeth, wondering if you ever got help or answers? I'm in a scary situation myself and my doctors don't care either and I keep getting rejected from different places as well or recently referred to the wrong physician! Dr. Coglan was a special physician that solved the unsolvable, I wish many more of these doctors existed.

It happens to me every time I try to sleep or rest and when I wake up it kicks in. I'm supposed to see an endocrinologist so I'll update on that.

It collects in my abdomen badly, I look pregnant! Ugh! So if someone knows of a good abdomen binder pls send me a pm, I bought one and it was terribly uncomfortable and didn't fit. Edit: For me it's also fluid, if I drink a lot or get saline iv my abdomen really swells.

Good to know. I'm already bed bound and getting worse so I'm really scared. My doctor's want me to get it though.

My doctors were going to discuss whether or not I should get it done. Thank you for your response.

My mother asked for my hormones to be checked back in January and they are all out of whack, some of them so high and out of range but nothing was really done about it until today, I had a telemedicine appt. and asked to be referred to a specific endocrinologist. I am wary of the doctor's in my city but he has outstanding reviews. I will keep y'all updated too.

Wow, we have very very similar stories. I got sick at 17 too and prior to that I was super athletic and musical and sociable and tons of water sports and hiking living in Florida. I understand much of what you describe. I've been in some long term relationships but my health is difficult or the person can't handle it. My high school sweetheart and I dated for 4 years and always talked marriage but one day he's like, "I thought you would get better and you're getting worse" and that was it. And I've gotten better and worked really hard at something else and then now I'm bed bound and like you said, none of my doctors care at all, which means I'll have to move in a very sick state just to get medical care. My family is non existent and I don't have many friends. I really understand what you're talking about and I understand feeling "robbed". I won't even get into how doctors treat young females but it's really concerning and scary and there are memories I'd like to shake that I can't. I decided at a young age I wanted to do something in music so started off singing at age 6, then piano lessons, then wrote my first song at 10, and just practice practice which was actually fun for me, extensive study in music theory, learning bass guitar and acoustic guitar; my goal was to become a music therapist and I fell in love with someone and it was like over night I ended up bedridden for a year then homebound for awhile and this was early 20's. What I do right now is focus on the things I can do. I listen to some music here and there and watch music shows just to get a taste of what I love. I can still edit photographs from bed sometimes so that is enjoyable for me, I did freelance photography for a period and even if I go outside for 5 minutes in increments during the day with my dogs I will take some photos or go through my old archives. I watch A LOT of animal rescuing stories online that are really only 5 minutes long which just makes the world seem like a better place and makes me smile. I did join a website that isn't running any more years ago when I was homebound and it was for under 40 chronically ill and most of my current friends I met on that website and though we are scattered all over the country, there is an understanding b/w all of us and encouraging even if it's just sending a text or card. I have not found social media to be helpful at all, everyone wants to argue over things and I ended up leaving all that behind b/c it caused so much stress. I do what I can for my dogs, luckily they are super old and low maintenance. I do have one local friend that I've known since sophomore year of high school and he's very understanding and we talk on the phone sometimes and text. Doctors confuse our depression as a primary issue but it's just secondary to feeling so bad all the time. I used to sit at the beach and feel overwhelming peace so I think it's whatever brings you some joy and peace.

I don't know. Mine tend to get worse at night. Could it be hormonal? Or medications you take?

When I got sick with dysautonomia I later developed OCD. Horrific but I went to a clinic and worked really hard to get better. But as I've declined drastically these past 6 months the OCD and anxiety are horrifying but they are physiological like you said. I was treated as a psych patient for years starting as a teen before being properly diagnosed and nothing ever helped. It's odd but the OCD I have is only focused on my bladder (I have IC) and my sleep problems but I mean IC is so so so bad who wouldn't be frightened? And these constant adrenaline surges. Saline iv's really help me more than anything to calm me down. I feel your pain, there has to be a connection and I hear a lot of people with POTS complain about anxiety. It kind of hit me all at once after contracting mono, I was "normal" before the mono. Music was always my therapy but I can't even play instruments, sing, write songs, or even listen to music now so I'm feeling sad about it all. My dogs definitely help me. I have a therapist but we can only talk for 15 minutes before I crash badly. I'd like to hear what others have to say.

Oh it was horrible, I just got back on them and I feel terrible. It's very difficult.

Alright so many people are wondering about this, so I'll give an answer. We never got a return phone call but I emailed the research team (accidentally) and they told me to at least skip the evening dose but preferably they want any medications/supplements affecting the autonomic nervous system (blood pressure and heart rate) out of your system. So going by the half lives of my meds I needed to get off of them for 3.5 days before any testing. One of them had a really really long half life so there wasn't anything I could do but I still discontinued it for testing purposes.

I'm going to look it up. He kind of just went through all the different treatments like botox and interstim...etc. Edit: Ah I have seen different people at the urology place with that but it was never discussed as an option for me. Thanks, something to bring up.

I'm so sorry, I definitely can't tell you what sleep is, I think I remember but I'm not sure!!?? Thanks. Yea this was pre dysautonomia diagnosis but it lead me to seeing cardiologists. The beta blocker has helped with this but like you said, I need a lot more help which I'm working on attaining, and I think the proper help will lead to sleep. I wish my bladder would disappear though, the constant pain and feelings of urgency are very disruptive. Trazodone is a good medication for sleep, I take some at night.

She's usually full of fluffy fur but it's summer time in Florida and it's better that she has her shave, hahaha, but she hates it aesthetically but like sit for the coolness.

They're actually real eggs so just a normal sized egg.

Essentially all vasoconstrictors can potentially decrease cerebral blood flow in *some* patients. Every stimulant I've ever tried makes me very ill. I even tried Northera and I got very dizzy, fell asleep, woke up super dizzy and faint. Vasoconstrictors also make it very hard for me to urinate and I already have bad IC. They help some people and other it hurts them and Northera never even helped my blood pressure...... It would be nice to discuss what patients do when we can't tolerate stimulants, vasoconstrictors, but need increased cerebral blood flow. But again, we're all different and the autonomic nervous system and its dysfunction and malfunction are very complex and complicated; I doubt we understand much about it, so whatever works for you is fine but if it doesn't work that's something to be avoided. I actually do fine with chocolate but it has to be low on cocoa (milk). A study on caffeine: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2748160/ .

I was blessed to sit outside the other day for a little bit and got a couple shots. My border Aussie is truly camera shy and furious about her summer shave. lol.