CallieAndToby

One of my parents is supposedly my "caretaker" and it's terrible. They absolutely ruined any chance of me sleeping last night. This person was giving me an iv for saline because I was going to seize, missed the vein first try and then proceeded to have a meltdown and 30 minute tantrem and I told them "compose yourself, I am lying here composed, get yourself together." They blame it on other family members who are not proactive and have no health problems. All of my energy is for my dogs because they're about 13-14 years old. Then I spend large amounts of energy doing research, answering phone calls, making phone calls, filling out papers, appointments, finding doctors. This person told me they would take care of something on their day off and then put it on me last night at 9 pm as I'm relaxing for bed and now it's my duty and I went into flight or fight and didn't sleep because there are certain things I have OCD about and they promised to "take care of it". I just don't understand why it's hard to logically conclude that asking me questions that visibly make me anxious is at a bad idea at 9 pm right before bed or starting laundry at 9 pm when I'm trying to sleep and it's really loud especially to the noise sensitive is a bad idea!? I just needed to vent. If this isn't appropriate it can be removed. However, I think a lot of patients with chronic illness will understand what I'm explaining. Edit: I'm calmer now but I think she doesn't know how to handle stress and said she told me because of stress and I think she needs help as a human being trying to juggle a lot of things at once. I guess I get frustrated because I'm so sick and she seems to take out her stress and frustration around me or on me and it's too much for me. Without getting into too much detail I also think she needs her own therapy but her work is long and hard and involves being on call. 

5 hours ago, p8d said:

One of my first symptoms was neurogenic bladder pain and I had terrible neurogenic pain after eating about 6 months in. I suffer/ed terrible musculoskeletal pain on and off throughout the past 7 years of this. Treati underlying autoimmune disease helps. By coincidence I found this article today. It discusses peripheral nerves and pain and many of us have small fiber neuropathy (peripheral nerves. https://www.theguardian.com/australia-news/2021/jun/28/sufferers-of-chronic-pain-have-long-been-told-its-all-in-their-head-we-now-know-thats-wrong?utm_term=47559555f650c1aea37e281403b62ecf&utm_campaign=USMorningBriefing&utm_source=esp&utm_medium=Email&CMP=usbriefing_email
 

I hope the link works.

Wow good article!! I really understood with the guitar analogy. I will say that my pain started in my bladder as a child then into my shins and legs as a teenager then early 20's a particular finger in my right hand. Unbelievable headaches. All of this affects my sleep and causes fatigue. I have a neurologist he says he's "leery" of prescribing anything, well what am I supposed to do? I have a friend who is bed bound now but her first symptom was pain in her eyes, she went all over the country and they couldn't figure it out, now the pain has spread throughout her entire body and like most people she can't get any help or treatment unless it's an anti depressant. She had an acupuncturist treat her weekly coming to her home and it really helped her so she found one in my city to treat me but acupuncture made me crazy sick and fatigued. After one session I would sit in the waiting room unable to drive home so fatigued and tired and one day another practitioner said to me, "I'm really worried about how you look. You're pale and white as a ghost and exhausted after these sessions." She bought me some water and food and let me rest until I could go home. I quit doing acupuncture after that!

In terms of my bladder, a urogyn kept wanting to prescribe amitriptyline but I already lost so much weight and I have these hormonal issues causing weight gain and I'd already taken nortriptyline for years so he told me, "it won't make you blow up", anyhow I asked a group of IC patients how much weight they gained on it and they all responded "about 50 lbs". Only one chronic pain specialist would see me and only offered shots that he claimed would be excruciating. Lastly, I got a vaccine on Friday and that night I woke up and I was in severe pain and the areas that are normally in pain already were heightened beyond my ability to describe and an inability to even walk b/c the shin pain was so bad; at this point I concluded it had something to do with my immune system and I alerted some of my doctors. 

23 hours ago, MTRJ75 said:

Today's flare/crash - drenching/clammy sweats, nausea, digestive issues, wooziness or light-headedness, blurring. Went up to 7 drops 45 minutes ago. No effect yet...or at least not a positive one. Can't lay on the couch all day either. Got some stuff around the house absolutely has to be done before tomorrow, so gotta find something that helps. 

Only thing that helps me during these times are saline iv's. I had one yesterday and today but I took a bath and back to square one of feeling horrid. 

5 hours ago, p8d said:

One of my first symptoms was neurogenic bladder pain and I had terrible neurogenic pain after eating about 6 months in. I suffer/ed terrible musculoskeletal pain on and off throughout the past 7 years of this. Treati underlying autoimmune disease helps. By coincidence I found this article today. It discusses peripheral nerves and pain and many of us have small fiber neuropathy (peripheral nerves. https://www.theguardian.com/australia-news/2021/jun/28/sufferers-of-chronic-pain-have-long-been-told-its-all-in-their-head-we-now-know-thats-wrong?utm_term=47559555f650c1aea37e281403b62ecf&utm_campaign=USMorningBriefing&utm_source=esp&utm_medium=Email&CMP=usbriefing_email
 

I hope the link works.

Thanks for this article. My first symptoms were with my bladder when I was just a child including pain but also urgency and frequency. I will take a look at this article. Edit: The link works. 

Yes I have bad pain. It was one of my first symptoms actually and they still haven't labeled it for me but I think it may be some sort of small fiber neuropathy. In high school they had me on a pile on medication for pain and the thing that helped the most was Vioxx a NSAID but it was taken off the market. I have tried strong controlled pain killers, Cymbalta and other anti depressant type drugs and they don't work. The worst pain is in my right hand and I did PT and everything known to man to try to get it to stop because I had to quit playing my main instrument because of the pain.  Edit: All this pain makes it very hard for me to sleep but mainly the pain in my bladder. 

I wish they would get the MM gummies here but they aren't legal yet, everything else is!??? For now the CBD gummy I found at a coffee shop helps me sleep more than anything. 

Last update for the Johnson & Johnson vaccine. I'm just tired at this point and I didn't get much sleep last night because of my bladder hurting. I'm on my third day and my muscles don't ache any more. Sometimes I feel nauseous but the pharmacist said things would get better with time. She said the worst part was at 18 hours past getting the shot and that was accurate. At 10 days I am considered fully vaccinated. 

So I will be the lone wolf here but I got the Johnson and Johnson vaccine this morning and it's only ONE SHOT. No double doses. It's not readily available here and my mom drove me on the other side of town to get it and they were running out. The pharmacist told me she has heard about bad reactions to moderna and the least about J&J, she told me that she personally got moderna and she said, "I felt like garbage after each moderna shot and had to leave work." I felt pretty bad quickly but I was sitting up for awhile, I got very exhausted in the car, but after coming home and resting and sleeping a bit I'm okay. I did stand up and I feel achy all over particularly soreness in my stomach muscles. Edit: It's the evening and I feel awful and fatigued and sick. Update: I didn't sleep much last night even though I was relaxed and took my meds. I'm very weak and in pain all over but especially where I started having pain in high school in my legs and shin area and behind shins. 

1 hour ago, Pistol said:

@CallieAndToby22 - I have not really found anything to help with IC pain when in a flare. I live in a state that has not yet legalized marihuana and would be afraid to take it since it can drop your BP ( I am an avid fainter 😒)

It really is so difficult to get pain relief these days and IC pain is truly something else.... bad! I haven't had any blood pressure issues with the CBD. I was just a fluke I found something that helped so much because I've tried other brands and they don't work! I literally went into a coffee shop and they had all these CBD products and I bought a bottle for me and for my dog and wow, worked. But the gummy digests quickly and stays longer. 

6 minutes ago, Pistol said:

I am just wondering - how does it affect IC?

Just for pain. They won't give pain medication any more at least where I live just send us to medical marijuana doctor and he told me "IC pain is very hard to treat it may not help" and it didn't. 

Honestly I tried so many strains of medical marijuana and it didn't do anything for my pain. They kept suggesting it for IC but no benefit. The tincture made me wired and tired so I couldn't do anything. The vaping made me high. But the cbd gummy has been great for sleep (they don't have MM gummy available in my state) so I had to get CBD but all my friends swear by the gummy for sleep. 

Well I've tried medical cannibas and had weird reactions but then I found these CBD gummies at a shop and I took one knocked me out for 3 days. Now I know to cut off a small piece but it's really the only thing helping me sleep right now. Definitely worth looking into the real cannibas or CBD. 

5 hours ago, Sushi said:

Maybe you could call the department at UAB and ask if they will be sending a report and interpretation of your test to your local neurologist? The interpretation and analysis is almost the most important part of the test in my experience.

Yea they already said they would be sending it to the referring physician. I just need to find an autonomic specialist. We're moving partially so I can get actual medical care. 

On 6/20/2021 at 11:49 AM, Sushi said:

When I asked about videos from UAB I hadn’t seen this thread. I poked around and see that UAB now has a clinician trained in autonomic dysfunction—yay! Sounds great. That is a wonderful addition to their clinical services. Keep us posted.

Awesome. I didn't really know to be honest I just did a lot of searching and found out they had a new autonomic testing lab. However the results will go back to my local neurologist and he doesn't know anything about dysautonomia. 

On 6/20/2021 at 1:42 PM, KiminOrlando said:

 Domperidone is for gastroparesis and it helped me tremendously. It isn't FDA approved and needs to be compounded, but it changed everything for me. 

Thank you! 

9 hours ago, Sushi said:

Do you have a link to this YouTube? What department at UAB is working with autonomic dysfunction? Last I heard, they didn’t have anyone after their principal clinician retired and died.

I have had severe constipation since early childhood. Right now I need about 1200 mg of magnesium citrate to be regular.

They have an autonomic testing lab. The only testing that's ever been done is a TTT like 10 years ago. Nobody in my city or anywhere else I went with a misdiagnosis of ME/CFS knew anything about autonomic dysfunction. I don't really have a clinician as of yet. I just googled their autonomic lab and some videos came up. 

On 6/18/2021 at 11:27 AM, Sushi said:

I also have had constipation all my life. My primary way of preventing it is quite high doses of magnesium each night. But the amount I need varies (probably because of what I have eaten that day) so sometimes I get caught.

Thanks. It's very weird because my mom being a GI nurse said that many patients come to them with constipation and some are athletes and very busy and mostly they do not understand why it's happening. I was given a medication for IBS but it worsens dysautonomia. I will mention that I watched a YouTube video about autonomic dysfunction and testing from UAB and they flag out said that dysautonomia causes terrible GI problems, potential bladder, and if affects the adrenal medulla and adrenaline so it definitely makes sense in my case; plus they mentioned the blood pressure, heart rate, all of that. It's weird because my bladder problems started when I was only 6 years old and they diagnosed as OAB but none of those meds ever helped. Be good to see if UAB treatment can help my bowels and bladder. Such a pain. Magnesium is a good idea as well. What dose do you take? I just drank some psyllium husk (eww) but I'm trying to find a combination of things that helps. All through my 20's I just used laxatives all the time but it's not a good idea, they made me stop doing that but nothing worked! 

1 hour ago, MTRJ75 said:

When I read the title, I thought this was going to be about a phone call setting off symptoms. It's unbelievable where only our minds immediately go. 

But that's great news! Congratulations and good luck!

Oh boy, guess it's the wrong title! I'm just tired today. Thanks. It's a step forward and long over-do.  

So I received some exciting calls yesterday and today. As of today I have a telemedicine appointment with a gifted endorinologist in Jacksonville, Fl and in 2 months I have an appointment  at UAB's autonomic testing clinic! I feel more hopeful. UAB seems like an excellent place to go and they do a lot of extensive autonomic testing which is what I've needed for so long. Just wanted to share the good news. 

Just for anybody else reading this, if you use psyllium husk fiber it draws water into the stool which makes it more bulk and not so soft and helps it move along. I swing from constipation to diarrhea and my pelvic floor PT and mom have me use this several times a week. My mom talked to a GI NP who has constipation problems and she recommended a specific type of probiotic and my mom recommended possible mineral oil. We'll see. 

41 minutes ago, yogini said:

I personally get constipated when I eat fiber.  Without getting too graphic, when I eat something with a lot of fiber - a salad or a bean burrito - it sometimes takes days to go through my system.  During those days I have severe consolation often get POTS symptoms like headache and tachycardia.  I think it’s because blood is drawn fo my intestines.  My body handles best very simple food When I eat simple foods - chicken and simple carbs - I have far fewer issues.  My body simply can’t handle too much fiber.  The standard recommendation for high fiber may be better for healthy people with a normal digestive system. 

Thanks that's good information. I ended up in the ER b/c of so much fluid retention in my abdomen they did a CT scan to rule out certain things and said the constipation was horrific so I'm at a loss. The medication the GI doctor gave me makes dysautonomia worse.  But yea I don't eat much vegetables because it just makes me sick though I had some veggie last night but I am a pescatarian so I don't eat meat and that is a new thing maybe 6 months now. Thank you for responding. 

So this has been a problem for me since my early 20's. My mom is a GI nurse and I've seen GI doctors but nothing I'm trying seems to help. I've been doing miralax, stool softeners, fiber capsules, and fiber cookies in the morning with plenty of water. Certain autonomic medications have helped in the past but I still don't have a specialist so wondering if there are other things I can do OTC? 

6 hours ago, Pupmum25 said:

I’m so sorry you have to deal with both conditions. 😣 I have OCD and dysautonomia as well, and I know how debilitating they both can be. I do feel that my OCD has worsened since developing dysautonomia; although we believe I’ve had it my whole life (as most do according to my therapist because there is a genetic component), I’ve never had it even remotely as bad as I have since becoming sick. I’d assume that having autonomic dysfunction can play a role, especially if you’re not getting as much blood flow to the brain. I do also have PCOS, so for me there is a hormonal component that I think affects things as well.
I am so sensitive to meds that we’ve tried to keep me away from antidepressants, as the last time I was on one I had side effects that my therapist and I both don’t want me experiencing again. As the previous individual who responded said, exposure response prevention is supposed to be the gold standard treatment. I’ve been doing ERP with my therapist and it has helped a lot. Unfortunately, with OCD the only way “out” seems to be through, much like dysautonomia in that you kind of have to ride the waves, which ERP teaches you to do. My counselor did also recommend NAC (N-acetylcysteine) for me to help with the OCD; obviously not medical advice, but I have been taking it and I am doing much better than before. Of course everyone is different and you should talk to your therapist or doctor before trying anything. I hope you can find some relief from your symptoms and feel more at peace very soon. ❤️

OCD does seem to have a genetic and hormonal component as my hormones are all over the place and they're trying to figure out what's going on..... My grandmother had OCPD which now my brother has and my aunt is a hoarder, another form of OCD but for sure my health problems have made it so much worse. I too am extremely sensitive to medication and supplements and vitamins so it's difficult but finding a good therapist is a great route to take!  

So just wanted to update that my lab results came back this morning and it is not indicative of PCOS. So my "testosterone bioavailable" is very high but my "androsterone serum" is too low. So androsterone deficiency can cause the following symptoms (based on a few articles I read): Extreme tiredness, loss of muscle mass and strength, loss of libido, loss of motivation, low well being and lowered mood. I really haven't slept much in the past month and for me it's just this constant state of adrenaline so something that keeps popping up with these results is congenital adrenal hyperplasia  and overactive adrenal glads, it also mentions causes such as: ovarian failure due to medication like chemotherapy, adrenal insufficiency, hypopituitarism, hyperprolactinaemia.. the others don't apply because they mention loss of menstrual cycle and I haven't had any issues with that. Everything else came back normal for PCOS testing. 

Yes I developed OCD many years ago after dysautonomia. To be honest, anti depressants have not helped but therapy has helped. What I've noticed is that when I get saline iv's and more blood flow to my brain the OCD lessens and sometimes disappears. I don't think the anti depressants have made my adrenal function worse but my adrenals are definitely out of control, is that an issue with you? I only mention it because there may be a connection b/w adrenals and OCD. What are your OCD thoughts? I feel for anyone dealing with both, they seem to make each other worse, and I know the torment that OCD is so I just want to express I'm sorry you're dealing with this. What anti depressants have you tried? The best therapy is exposure response prevention but I'm working on schema therapy right now and I just talk to my therapist via phone. It also turns out my brother is dealing with OCPD which is different but similar with intrusive thoughts and compulsions. Edit: Wanted to add that I take Luvox which is not a well known ssri but it is said to be the most effective for OCD, well at least from a doctor I worked with for 8 years.