Feel a bit crap.

[Imwashingmypirate]

GP aware. Appointment already made.

Just a vent really. Still not right since being ill. Not sure how long it will take to get back to my normal level of feeling crap. Heart rate is all over the place. Thankfully O2 isn't changing much but the dizziness and tiredness is difficult. I have EDS, dysautomic symptoms, erythema and dermagraphia plus non ige allergy issues. Eosinophilic oesophagitis. Hypothyroidism, trigeminal neuralgia, vitamin deficiencies, fibromyalgia (I don't accept this diagnosis). It all is related to having ehlers danlos. Subluxed my hip today. Already painful but tomorrow is going to be harder. Jamie is going to his mum's for the weekend, the plumber is coming Friday and Oliver's friends are coming for a BBq Saturday. So as well as the normal stuff going on, it's a busy weekend. Also making food for Sunday lunch at church. Volunteering Friday night at youth club. Then next week I have physio, gastroenterology appointment (where I'm gonna get my butt kicked most likely).

Just a bit of a moan really. I'll get through it. One day at a time. Usually I'd drink energy drinks when I have a lot to do and am struggling but with the increase in dysautomic symptoms, I think it's best to avoid it. I haven't drank them for months because I wondered if that was the cause of the sleep issues which actually hasn't happened for a long time so that's good.

Gonna get an earlish night. Try and avoid coming on here and just see if I can get a decent sleep.


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[Marcus]

GP aware. Appointment already made.

Just a vent really.
Still not right since being ill. Not sure how long it will take to get back to my normal level of feeling crap. Heart rate is all over the place. Thankfully O2 isn't changing much but the dizziness and tiredness is difficult. I have EDS, dysautomic symptoms, erythema and dermagraphia plus non ige allergy issues. Eosinophilic oesophagitis. Hypothyroidism, trigeminal neuralgia, vitamin deficiencies, fibromyalgia (I don't accept this diagnosis). It all is related to having ehlers danlos. Subluxed my hip today. Already painful but tomorrow is going to be harder. Jamie is going to his mum's for the weekend, the plumber is coming Friday and Oliver's friends are coming for a BBq Saturday. So as well as the normal stuff going on, it's a busy weekend. Also making food for Sunday lunch at church. Volunteering Friday night at youth club. Then next week I have physio, gastroenterology appointment (where I'm gonna get my butt kicked most likely).

Just a bit of a moan really. I'll get through it. One day at a time. Usually I'd drink energy drinks when I have a lot to do and am struggling but with the increase in dysautomic symptoms, I think it's best to avoid it. I haven't drank them for months because I wondered if that was the cause of the sleep issues which actually hasn't happened for a long time so that's good...

Dear god.

Given that list, and including all the other issues you've mentioned I can't imagine any organization having a problem with you cutting back on your volunteer work. And giving an outdoor party for children where you have to BBQ when you have a dislocated hip sounds like an utter nightmare! Could someone in your family help??? Or a parent or two of a child who is attending?

Also, consuming energy drinks when you have vitamin defiencies, non igE allergies, Eosinophilic oesophagitis, and hypothyroidism, among all the other things you've mentioned, sounds like an absolute no-no. You've also mentioned before that you are supposed to be taking something for your hypothyroidism, but that you don't because of a reaction (?)--that's pretty serious. Leaving hypothyroidism untreated is really, really dangerous. Can't your doctor find another drug to give you?

And seriously, you were in the hospital with pneumonia barely two weeks ago, If I recall correctly. It takes time to recover from that! After my SO's bout with pneumonia, his doctors recommended he not return to work for at least another month, in order to fully recover.

Please, take care of yourself.

[Imwashingmypirate]

GP aware. Appointment already made.

Just a vent really. Still not right since being ill. Not sure how long it will take to get back to my normal level of feeling crap. Heart rate is all over the place. Thankfully O2 isn't changing much but the dizziness and tiredness is difficult. I have EDS, dysautomic symptoms, erythema and dermagraphia plus non ige allergy issues. Eosinophilic oesophagitis. Hypothyroidism, trigeminal neuralgia, vitamin deficiencies, fibromyalgia (I don't accept this diagnosis). It all is related to having ehlers danlos. Subluxed my hip today. Already painful but tomorrow is going to be harder. Jamie is going to his mum's for the weekend, the plumber is coming Friday and Oliver's friends are coming for a BBq Saturday. So as well as the normal stuff going on, it's a busy weekend. Also making food for Sunday lunch at church. Volunteering Friday night at youth club. Then next week I have physio, gastroenterology appointment (where I'm gonna get my butt kicked most likely).

Just a bit of a moan really. I'll get through it. One day at a time. Usually I'd drink energy drinks when I have a lot to do and am struggling but with the increase in dysautomic symptoms, I think it's best to avoid it. I haven't drank them for months because I wondered if that was the cause of the sleep issues which actually hasn't happened for a long time so that's good...

Dear god.

Given that list, and including all the other issues you've mentioned I can't imagine any organization having a problem with you cutting back on your volunteer work. And giving an outdoor party for children where you have to BBQ when you have a dislocated hip sounds like an utter nightmare! Could someone in your family help??? Or a parent or two of a child who is attending?

Also, consuming energy drinks when you have vitamin defiencies, non igE allergies, Eosinophilic oesophagitis, and hypothyroidism, among all the other things you've mentioned, sounds like an absolute no-no. You've also mentioned before that you are supposed to be taking something for your hypothyroidism, but that you don't because of a reaction (?)--that's pretty serious. Leaving hypothyroidism untreated is really, really dangerous. Can't your doctor find another drug to give you?

And seriously, you were in the hospital with pneumonia barely two weeks ago, If I recall correctly. It takes time to recover from that! After my SO's bout with pneumonia, his doctors recommended he not return to work for at least another month, in order to fully recover.

Please, take care of yourself.

Lost my reply. I'll redo but keep it briefer.

Thanks Marcus. I feel better knowing that it takes more time. I wasn't sure if I was recovered but something else was going on. It reassures me that it should get better.

I won't write as much as I wrote before I lost it because it was probably over sharing anyway but just to reassure...

Thyroid is being closely monitored by GP and immunology. I may well end up on levothyroxine at some point. My bloods go up and down. Latest blood showed no antibodies, slight decrease in T4. Slight decrease in Tsh but still abnormal. These change every time I am tested. Sometimes, they get worse sometimes they improve. It's being monitored. I have had antibody tests where the results have been high. So it's the hashimos kind.

Hip doesn't completely dislocate. It comes out partly and I turn my hip in and stretch my leg at the same time and then it goes back but the pain can last for days. In pain now.

I'm falling asleep. But I didn't want to leave you worrying.

I've invited the mum of the boys for dinner too and I think I might rearrange some things coming up.

Thanks

[Moksha]

Wishing you the best in your health, Pirate.

[Imwashingmypirate]

Wishing you the best in your health, Pirate.

Thanks <3

[Marcus]

Dear god.

Given that list, and including all the other issues you've mentioned I can't imagine any organization having a problem with you cutting back on your volunteer work. And giving an outdoor party for children where you have to BBQ when you have a dislocated hip sounds like an utter nightmare! Could someone in your family help??? Or a parent or two of a child who is attending?

Also, consuming energy drinks when you have vitamin defiencies, non igE allergies, Eosinophilic oesophagitis, and hypothyroidism, among all the other things you've mentioned, sounds like an absolute no-no. You've also mentioned before that you are supposed to be taking something for your hypothyroidism, but that you don't because of a reaction (?)--that's pretty serious. Leaving hypothyroidism untreated is really, really dangerous. Can't your doctor find another drug to give you?

And seriously, you were in the hospital with pneumonia barely two weeks ago, If I recall correctly. It takes time to recover from that! After my SO's bout with pneumonia, his doctors recommended he not return to work for at least another month, in order to fully recover.

Please, take care of yourself.

Lost my reply. I'll redo but keep it briefer.

Thanks Marcus. I feel better knowing that it takes more time. I wasn't sure if I was recovered but something else was going on. It reassures me that it should get better.

Your pneumonia doctors in the hospital didn't tell you that?????? Please don't rely on my comment, you need medical advice.

I won't write as much as I wrote before I lost it because it was probably over sharing anyway but just to reassure...

Thyroid is being closely monitored by GP and immunology. I may well end up on levothyroxine at some point. My bloods go up and down. Latest blood showed no antibodies, slight decrease in T4. Slight decrease in Tsh but still abnormal. These change every time I am tested. Sometimes, they get worse sometimes they improve. It's being monitored. I have had antibody tests where the results have been high. So it's the hashimos kind.

I am confused. Previously you said this

...For me they have strong side effects. I can't take levothyroxine even though there is evidence that my health would be better if I took it...

How do you know that if you haven't yet had it prescribed? Also, do you mean hashimoto's disease? It was my understanding (from my aunt) that hashimoto's is managed by dietary control.

Hip doesn't completely dislocate. It comes out partly and I told my hip in and stretch my leg at the same time and then it goes back but the pain can last for days. In pain now.

What does your orthopedist recommend?

[Jersey Girl]

I read this whole thing. Quick and dirty reply.

Nicky get an RX for Levothyroxine. That's what is used to treat Hashimoto's. Ask me how I know. No, don't.

Your heart rate is concerning. Try the vagus nerve thing I do. Here it's 10 minutes of your life. It won't make it worse. Could calm things down. https://www.youtube.com/watch?v=zUx5kLFyx-M

If the 10 minute routine doesn't work, I can teach you a vagal maneuver on the screen that could also calm things down.

Your thyroid could be whacking out your heart.

And if when you take the Levo be aware of what you're not allowed to eat while taking it.

See if you need to do a blood draw to check your electrolytes.

Get the Mums to each bring a dish of food to share.

Consider getting all the health issues merged into one thread so you can use it the way I use mine for documentation in SSP.

Jersey Out.

<3

[drumdude]

Hope you feel better soon, pirate!

[Imwashingmypirate]

Hope you feel better soon, pirate!

Thanks. I am feeling a bit better today. Heart rate still fluctuation but less dizzy so far.

[Imwashingmypirate]

I wrote a reply last night but got freaked out by how much I shared.

Waiting to see ortho about a hip support. I go to physio, pain management, see a anesthetist and am going to have acupuncture.

I have a Dr appointment coming up. They are aware of what is going on.

You are right Marcus I did say that I stopped levothyroxine because of side effects. But I didn't explain it. I didn't stop without guidance. I will end up back on it. My bloods are being checked every 3 months. I can explain in more detail if required. I did last night but it took up a lot of text to explain it. I took levothyroxine cyclically between 2013 and 2019 and took it completely during both pregnancies. Endocrinologist said I was reacting to the fillers. With help I found a brand that gave the least side effects and it was titrated which helped but when I moved, I was no longer able to have that brand. Eventually I just went to the Dr and said I'm not coping with it. He said stop and they have been monitoring closely ever since. Immunology is also monitoring it at a deeper level. T4 is creeping down. I will have no choice soon but to take it. TSH is erratic but also creeping up. Sometimes tsh comes down and sometimes it jumps up. It is hashimotos. I will look into diet because that would be useful if I can avoid medication. I react to all sorts of medication. I have spontaneous and induced reactions. I am waiting for metal allergy testing too.

I have invited the mum of the boys. I'm sure she will help me cook.

I was told to rest but I wasn't told how long I needed to rest for. The last time I seen a Dr my chest was clear and my bloods were better. I still have mucus build up.

I have dysautonomic issues due to EDS. They aren't too dissimilar to what is going on now. This is more extreme. I will be seeing a Dr soon. I've sent them heart rate readings. The Dr has reviewed them.

Jersey Girl. I will ask for some bloods doing. I will see if they will check my thyroid early. And I've thought about trying the vagus thing a few times. It's worth a try. I woke up from a nightmare last night and it felt like my heart was racing but when I checked it was only 60bpm. So strange. I wonder if I dreamt that I woke up and confused the fear for increased heart rate.