Dietitians, diet summary, dehydration, throat closures, and walking through mud

It's been a while since I came online. I'm sure I had a topic for the blog, but for the life of me, I've forgotten it. I guess I'll just write a mishmash of what's been going on. Or not going on!

I got an appointment to see a dietitian in another county that's a good hour's drive away, early in the morning. Getting to another city so early in the morning is not possible for me or my family, particularly my dad who is the driver and who sleeps over 12 hours and misses most of the day with his M.E. So we rang to get it changed, had to leave a voicemail message, and now we're waiting for a new appointment. Preferably in the afternoon. I've written out a summary for her, even though I feel a bit embarrassed printing out all these things for doctors to read, but what else can I do? Writing things out is the only way I can articulate them. I may tweak it before I print it, but so far my summary for the dietitian:

Foods I have cut out:
* 'IBS' - Wheat, high fibre foods, cheese, fruit, all vegetables except carrots and swede, nuts, seeds, meat
* Acid reflux - All fruit, juice, smoothies, fizzy drinks, milk, milky dairy products like yogurt and rice pudding, chocolate, tomato, vinegar

Vegetarian/pescatarian since 2011, tried meat in 2017 but had severe symptoms

Currently experimenting with lactose-free butter

Experiments still to do:
- butternut squash, parsnips, sweet potato
- peanut butter


Seem to react badly to:
- oats
- corn/cornflour
- possibly quinoa

Went gluten-free approx. September 2018

Symptoms that improved after going gluten-free:
- No longer bent double
- Gas
- Possibly gut pain; piles
- Night sweats
- Acid; used to get severe acid that debilitated me for hours at a time, where I would have to stop what I was doing to wait it out. This still occurs, but less frequently.
- Vomiting acid in the night

Other possible reasons for symptom improvement:
- Cutting out gassy, hard-to-digest foods like peas, runner beans, sweetcorn
- Possibly eating less fibre
- Raising the bed
- (For piles/constipation) Drinking more water than before

Current diet:
- Genius pancakes or Schar waffles with lacto-free butter
- Schar brioche rolls, hash browns/Yorkshire puddings/chips/roast potatoes/boiled potatoes
- Gluten-free Quorn
- Fish
- Carrots, swede

Dehydrated and throat extremely dry as drinking water causes reflux, feels like filling up an open bag. Water also makes acid.



I had my first ever home eye test on Monday and all I can think is, 'Why didn't I do this years ago??' Both of them were lovely and I cannot wait to replace these broken glasses that have been slipping off my head for 6 months with nice new ones! Now I just need a home hairdresser and home dentist. Hmm.

Summer is approaching which means I'm starting to get worried about my fluid intake. The heatwave last July gave me some anxiety, especially in the mornings when I was scared I was going to faint from dehydration. I drank water first thing back then but I haven't been able to since, as putting water into an empty stomach seems to cause burning, firework acid for ages, maybe even all day. I'm not sure how I'm going to handle the heatwave this year, when it comes. Thankfully my body allowed me to put down more water throughout the day during last year's heat, as if my stomach took mercy for the sake of my body's survival and ceased its acid revenge until the heat subsided. I can only pray my body will do the same again.

My throat suddenly closes in at night a lot. My mouth is almost sore most of the time, and my throat noisy. While other people daydream about sunny vacations and buying a huge house, I daydream about drinking a nice carton of juice. It's scary when my throat closes up, feeling like I can't breathe. So far it's only after going to bed, when I've swallowed my dissolvable anti-depressant and gone to lie down. I know it's dehydration.

Muscles have been jolting a lot lately. My torso jumps, and my legs have been going at it the last few days. It happens most when I lean back. Which tells me that wind, good ol' acid reflux, has something to do with it. But the connection between reflux/wind and muscles jumping is lost on me.

A scary sensation keeps occurring that I can't easily describe. It's as though my muscles suddenly seize up, and my heart seizes up, and I feel like I have to drag my body. It's like dragging myself through incredibly thick mud, like Never-ending Story. It makes me dizzy and light headed too. It's scary until it passes. Mostly the feeling that my heart is also seizing and dragging. It makes me feel like I'm going to collapse. It's a new symptom - maybe within the last month or two. Don't know what to think of it. But I don't know what to think of any of my crazy symptoms.

Reflux is bad today.

Depression is starting to hit.

It's just another day, really.

Comments

@PoorlyPixi, have you had a chance to join the other board that seems more based in UK? I just wondered because it really sounds like you have some kind of MCAS and someone there might know of a specialist perhaps that you could go to for that.

I know it's a long shot, but I just thought...

That website is: https://www.s4me.info/

Please don't think I'm trying to chase you away. I'm just trying to give you more resources to work with so please keep coming back here and giving us updates as you have been otherwise we would worry about you. :)

Edit: I think you form is very good. I think that's a good way to do it.
 
@PoorlyPixi, have you had a chance to join the other board that seems more based in UK? I just wondered because it really sounds like you have some kind of MCAS and someone there might know of a specialist perhaps that you could go to for that.

I know it's a long shot, but I just thought...

That website is: https://www.s4me.info/

Please don't think I'm trying to chase you away. I'm just trying to give you more resources to work with so please keep coming back here and giving us updates as you have been otherwise we would worry about you. :)

Edit: I think you form is very good. I think that's a good way to do it.
Thank you, I hadn't seen the other forum, I've had a look around and I may join it, but, I may also get confused if I post on two forums lol.

I've done some reading about MCAS so thank you, I don't know what to think of it, though. I just feel very ? about my health and I hope I can see a doctor soon... my dad is talking about ringing the hospital but I don't think that'd make any difference, waiting time is waiting time for everybody, it's slow, not just for me...
 
Any progress? I hope it was beneficial for you! It gives me hope too about my own list. :D
I'm trying to be optimistic. Some of the testing I've had before but maybe the specialists will test for new things. I have my first endo appt on Thursday.

I'm hoping she is going to test for adrenal insufficiency but of course, we'll see. I have to get a list ready for her too but it will probably be a much shorter list since I haven't met her yet and want to see how she works first. (My new PCP calls it adrenal fatigue which I believe in but many mainstream doctors here do not so I'm a little nervous about that.)

Thanks for asking. Keep us informed of your progress if you can. :)

I'm hoping that when the dietician sees your list it will add much credibility to medical file especially when she sees thinks like, "bent double," and "vomiting at night."

Wow. Not sure how a doctor can ignore those types of things or slot them into anorexia or "it's all up in your head." I think something is definitely not right with how your system is processing nutrition. Hope you get some legitimate answers soon.

Judee
 
I'm trying to be optimistic. Some of the testing I've had before but maybe the specialists will test for new things. I have my first endo appt on Thursday.

I'm hoping she is going to test for adrenal insufficiency but of course, we'll see. I have to get a list ready for her too but it will probably be a much shorter list since I haven't met her yet and want to see how she works first. (My new PCP calls it adrenal fatigue which I believe in but many mainstream doctors here do not so I'm a little nervous about that.)

Thanks for asking. Keep us informed of your progress if you can. :)

I'm hoping that when the dietician sees your list it will add much credibility to medical file especially when she sees thinks like, "bent double," and "vomiting at night."

Wow. Not sure how a doctor can ignore those types of things or slot them into anorexia or "it's all up in your head." I think something is definitely not right with how your system is processing nutrition. Hope you get some legitimate answers soon.

Judee


Ah I've had a couple of those! How did the appointment go? I hope things went well and they're looking into more possibilities. I see a lot of medical terms that mainstream doctors don't believe in, it's very frustrating wondering what could be the truth but knowing that the doctors you have to rely on don't know about it/believe in it. I hope she was good!

Well, it does seem rather shocking and confusing but yep, that's been my experience! I told the gastro (a man, I don't know if that makes a difference) that I was throwing up clear acid and bile, and he questioned why I lost weight and decided I was anorexic. ...You can't make these things up! The last gastro I saw was a woman. At least she didn't seem to assume I was just anorexic, but she did seem stuck and unable to help me. I wonder who I will see this time.

Always a fight, isn't it!
 
I think it went well. She seems nice and I think she believed me on the ME/CFS. She said my long term dependence on licorice was my using it as a substitute for aldosterone. I thought it was for recycling cortisol and that I was using it that way but what she said made sense for my low bp and faint tingly feelings.

I wish I could send you a hug of encouragement. I hate having labels put into my medical file. After my longtime PCP retired, I did ask my new PCP to take acid reflux out of my file because it really did not apply. It never did but my former PCP doc was on an acid reflux kick at the time, so I think it probably ended up on a lot of his patients' files. They tend to get their "pet" diagnoses.

I wonder if you can ask them to remove the anorexia from your file in the same way. I don't know how it works where you are or if psychological diagnoses would be different than something physical but it was just a thought.

Maybe it's not a good idea though because they might say you are in some kind of denial. :rolleyes: That's kinda how the medical/psychological community works it. We're messed up if we do and we're messed up if we don't. We really can't win with them in so many ways.

Judee
p.s. I did avoid the term "Adrenal Fatigue" though when I spoke to the new endo...just to be on the safe side. :D
 
I think it went well. She seems nice and I think she believed me on the ME/CFS. She said my long term dependence on licorice was my using it as a substitute for aldosterone. I thought it was for recycling cortisol and that I was using it that way but what she said made sense for my low bp and faint tingly feelings.

I wish I could send you a hug of encouragement. I hate having labels put into my medical file. After my longtime PCP retired, I did ask my new PCP to take acid reflux out of my file because it really did not apply. It never did but my former PCP doc was on an acid reflux kick at the time, so I think it probably ended up on a lot of his patients' files. They tend to get their "pet" diagnoses.

I wonder if you can ask them to remove the anorexia from your file in the same way. I don't know how it works where you are or if psychological diagnoses would be different than something physical but it was just a thought.

Maybe it's not a good idea though because they might say you are in some kind of denial. :rolleyes: That's kinda how the medical/psychological community works it. We're messed up if we do and we're messed up if we don't. We really can't win with them in so many ways.

Judee
p.s. I did avoid the term "Adrenal Fatigue" though when I spoke to the new endo...just to be on the safe side. :D

I'm glad she was nice and open-minded/actually knowledgeable about the existence of ME/CFS! This is encouraging. It sounds like she might know what she's talking about - let's hope! Do you know when your next appointment is or might be?

Well, I do worry that they would take it as denial if I did ask them to remove it... these mental diagnoses stick, especially on young women... I was 'diagnosed' with it at 16 when I first had no appetite (but no illness at that time), that's a very vulnerable age where a lot of teens succumb to body image pressures and eating disorders. But I do think I might lose my temper at some point if my words continue to fall on deaf ears and eyes that just see a thin young woman with 'eating disorder' in her file. I admit I've gotten angry with mental health professionals on this in the last couple of years, next up, medical doctors!

Why must we fight the people who are meant to help us! It seems ridiculous that doctors, healers, helpers, end up being our enemies.
 
She wants me to come back in 3 weeks. I'm glad but also overwhelmed because now I have two doctors that want me to schedule frequent follow ups and when I go to the rheumatologist at the end of the month, I might have 3 doctors asking that. Also I take my mom to her doctors appointments and ditto for that now but with different specialities.

I know I shouldn't complain about it but with ME/CFS and for a person who really only went to the doctor maybe 2-3x per year at most, I'm overwhelmed. It's really a struggle for me just to get out of the house once every 6 weeks or so.

I also started to worry that maybe this new endo will think I created my own problem by using the licorice but the need came first and whatever caused the need not the other way around. I don't think she will but I also hope not.

I do think that it is okay to keep gently insisting that you were never one that was concerned about body image. (At least it doesn't sound like it to me.) And maybe keep saying that you've always just had serious problems with digestion after eating. (Keep that list handy to show them.)

Maybe if you keep saying that like a broken record, some medical person will listen. (We can pray. :))

I agree with you that it shouldn't be a struggle to get them to believe us. I get frustrated by how they get locked into a tight box of thinking.

I just found this description on another website. The first paragraph says: "You’ve heard 'If it walks like a duck, quacks like a duck…… it must be a duck'. That is an example of abductive reasoning, more accurately inference, where a set of observations leads directly to a conclusion. However, that conclusion is just a best guess and the duck example should really end with “…it could be a duck”. That’s more than just splitting hairs. Depending on exactly which characteristics were used to conclude the bird is a duck, you could actually be looking at a coot or a loon."

Too many doctors let their observations lead to a conclusion (and a diagnosis tatooed on our files) without taking it to the next level and testing their hypothesis. They forget that they are just making their "best guess" but then we get branded with the result. :bang-head:
 
"Acid; used to get severe acid that debilitated me for hours at a time, where I would have to stop what I was doing to wait it out. This still occurs, but less frequently. "

" I drank water first thing back then but I haven't been able to since, as putting water into an empty stomach seems to cause burning, firework acid for ages, maybe even all day. "

I'm confused as you said you got the new doctor to take "acid reflux" off your file but your comments are sounding like reflux.

If you do have reflux happening (not all notice it happening, some people just end up getting things like a sore throat without noticing it).. it can be caused by low stomach acid or high stomach acid. If your stomach acid is slow, drinking water and hence then diluting it can increase the symptoms and sound what "could" be going on with you
 
"Acid; used to get severe acid that debilitated me for hours at a time, where I would have to stop what I was doing to wait it out. This still occurs, but less frequently. "

" I drank water first thing back then but I haven't been able to since, as putting water into an empty stomach seems to cause burning, firework acid for ages, maybe even all day. "

I'm confused as you said you got the new doctor to take "acid reflux" off your file but your comments are sounding like reflux.

If you do have reflux happening (not all notice it happening, some people just end up getting things like a sore throat without noticing it).. it can be caused by low stomach acid or high stomach acid. If your stomach acid is slow, drinking water and hence then diluting it can increase the symptoms and sound what "could" be going on with you
Thanks for commenting, Judee got acid reflux taken out of her file; the thing we want taken out of mine is anorexia nervosa, a diagnosis I got years ago just because I was a young woman who was underweight and didn't like her face. They thought I was underweight because I didn't like my body, which was untrue; I hated looking like a malnourished, curveless boy and wanted to have some fat, hips and curves, but that is unheard of in young women who think their faces are ugly, apparently. That diagnosis has meant I don't get taken seriously as I should because I have a dangerous label on my file making them think I'm underweight because I want to be thin rather than underweight from a physical problem.

I've read about low stomach acid in the past and I was convinced I had it... I wanted to be tested for it... but I eventually realised that this is an alternative theory and not something that is known, tested for and treated in most hospitals, so I gave it up :( if I want a doctor to help, I need to throw away 'alternative' medical issues...
 
She wants me to come back in 3 weeks. I'm glad but also overwhelmed because now I have two doctors that want me to schedule frequent follow ups and when I go to the rheumatologist at the end of the month, I might have 3 doctors asking that. Also I take my mom to her doctors appointments and ditto for that now but with different specialities.

I know I shouldn't complain about it but with ME/CFS and for a person who really only went to the doctor maybe 2-3x per year at most, I'm overwhelmed. It's really a struggle for me just to get out of the house once every 6 weeks or so.

I also started to worry that maybe this new endo will think I created my own problem by using the licorice but the need came first and whatever caused the need not the other way around. I don't think she will but I also hope not.

I do think that it is okay to keep gently insisting that you were never one that was concerned about body image. (At least it doesn't sound like it to me.) And maybe keep saying that you've always just had serious problems with digestion after eating. (Keep that list handy to show them.)

Maybe if you keep saying that like a broken record, some medical person will listen. (We can pray. :))

I agree with you that it shouldn't be a struggle to get them to believe us. I get frustrated by how they get locked into a tight box of thinking.

I just found this description on another website. The first paragraph says: "You’ve heard 'If it walks like a duck, quacks like a duck…… it must be a duck'. That is an example of abductive reasoning, more accurately inference, where a set of observations leads directly to a conclusion. However, that conclusion is just a best guess and the duck example should really end with “…it could be a duck”. That’s more than just splitting hairs. Depending on exactly which characteristics were used to conclude the bird is a duck, you could actually be looking at a coot or a loon."

Too many doctors let their observations lead to a conclusion (and a diagnosis tatooed on our files) without taking it to the next level and testing their hypothesis. They forget that they are just making their "best guess" but then we get branded with the result. :bang-head:

Thank you, that quote made me smile! I am not a duck! I do think I will lose my patience with someone eventually if they continue to see me as deliberately underweight... well, at least I'll be able to feel proud of myself for sticking up for myself, I guess! Even though I cried after seeing a support worker last year (who thought there was likely nothing wrong with me physically and said M.E/CFS is a mental issue and my dad was in bed most of the day because he was depressed), I felt proud that I shouted at her. :rofl: That might not be mature but, you know.

I completely understand how you must be feeling having to get out more like this and travel... and it would be very hard for my dad too to be going all over the place. I hope they have some consideration for your limits and how much of a toll these appointments take. But, the silver lining is hopefully progress!
 
I know what you mean. It does feel good to stick up for ourselves. I tend to be rather passive when it comes to people I don't know well but with medical people and medicine you have to be vocal. I'm still working at that.

Judee
 

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