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My Full Symptoms List - for any doctor interested?...

I have written out a full list of the symptoms and sensations I experience, what for, I'm not entirely sure, but I thought it might be helpful if I can get anyone to read it and consider me seriously. Heck, I'll thrust it at anyone! It's constantly being updated as new sensations arise and surprise, and I've probably forgotten something. Thought I would save it here also.


SYMPTOMS SINCE OCT 2011, WORSENED/PROGRESSED SINCE 2017
UPDATED APRIL 2019


- Chronic acid reflux feeling like fireworks, burning, painful, sickly. Have cut out all acidic foods and drinks. Plain water can make burning acid.
- Acid can get so overwhelming I have to stop what I'm doing and 'ride it out, wait,' for however long it takes, even up to 2 hours.
- Feeling of something stuck in throat, food refluxing back up to throat as I'm eating.
- Drinking water makes stomach/esophagus feel full, as though it expands the area like a balloon or hot water bottle, so only have a few gulps. Always dehydrated and thirsty as a consequence. Throat often closes due to dehydration.
- Cannot lean back, bend, or lie down due to reflux. Cannot lie on left side after going to bed. Leaning back causes immediate reflux/burning acid.
- Gut pain, can be triggered by foods, sometimes shouting out and crying from pain if accidentally eaten a trigger food.
- Constipation, sometimes piles. Stools often pale, especially after eating trigger foods and shouting from the pain. Sometimes blood in stools.
- Fuzzy head, light-headedness, vertigo, feeling of head suddenly 'dropping', head zaps, sudden vibrations through head felt in teeth, dizziness. 'Drops' sometimes create 'electricity' running through chest and fingers.
- Muscle jolts/spasms, particularly in the chest. Chest jolts may be due to reflux/wind: heart often feels like it is jumping or 'somersaulting' when laying down, making my chest and other muscles jolt. Have woken up in the night from multiple jolts in my sleep as heart somersaulted. Jolts sometimes creating 'electricity' through my chest, arms and fingers. Have felt electricity in other parts of the body such as shoulder.
- Muscle pain, sore points that sometimes 'scream' if lightly pressed, severe muscle weakness; cannot lift many objects, carry trays, reaching over can be a struggle. Stiffness and aches on waking up in the morning, as though I was battered in the night. Cannot focus in the morning, try to focus on an object to 'wake up.' Sometimes mute, unable to speak and 'zombie-like' in the mornings.
- Tiredness, sometimes fatigue, occasionally so bad that I cry and cannot wait to go to bed.
- Sensitivity to noise, light, heat, and the sun (sun creates fuzzy head and feeling of light-headedness, dehydration)
- Crashing the day after going out or seeing friends at home: crashing involves worsening of reflux, IBS, head symptoms, muscle pain and fatigue - sometimes being mute, not speaking if the previous day was particularly busy.
- Acne, inflamed, all over face and other areas of body; feels painful, uncomfortable, like something is crawling over skin. Only antibiotics help control it.
- Very dry, flaky skin; cracked, ridged, and peeling nails.
- Nasal congestion, like having a year-round mild cold.
- Malaise: indescribable feeling of illness, involving acid reflux, muscle pain, head symptoms, weakness, flare-up of general symptoms, severe sickness.
- Symptoms worsening with hormones at certain times of the month.
- Hot flashes, sometimes so bad I have to run to sit by a fan even in winter, palpitations, poor balance and coordination, inability to concentrate.

Comments

Dear PoorlyPixi,
It's good you wrote that list, and noted everything down. I am sure many here can empathise, and may have some helpful ideas for you to try.
I am so sorry....that is a heck of a list of things to endure every day. A few of the things you mentioned I also get too....the head "zaps" and electricity shots through shoulders, chest, right down to fingers. It only happens when I bend my neck forward and down very quickly, maybe when I am outside on rough ground. It has only happened about 4 times in a few years and has not got worse but it feels very weird if it happens.
That is rare for me but I often do wonder if there may be some instability/problem in the neck, especially after hearing about CranioCervical Instability.

There is a good thread here on the forum about CCI (CranioCervical Instability) which might interest you?
https://forums.phoenixrising.me/thr...-cause-of-your-cfs.56908/page-22#post-1015633

Another thing worth a thought....you say you take antibiotics for the acne. Do you take them constantly, or just at certain times? Antibiotics, while useful, can cause awful side effects, and can seriously disrupt the natural function of the gut. Even basically healthy people can report upset stomach etc while on a course of antibiotics, and sometimes the symptoms can linger because of the disturbance of gut flora, for a long time after the course has finished.
If antibiotics are essential, you might be helped by a good probiotic....unless you have already tried that and it didn't help?
Have you tried any alternative natural treatments for the acne?

Constipation could possibly be caused by you being unable to eat, and maybe you can't eat fibre containing foods?
Pale stools can be caused by a liver or gall bladder dysfunction....possibly a bile duct that isn't working as it should. A doctor would maybe know....

Have you been tested for Helicobacter Pylori?
Have you had an endoscopy?

It sounds very much as if you either don't have a doctor's help....or the doctor has "given up" when confounded by the symptoms. Do you take any other medications, for example, antacids? Or any other prescription medicines?

I feel for you and can only hope you find some solution/s to help you feel at least a little better, as soon as possible.
My kindest wishes.
Wolfcub.
 
Dear PoorlyPixi,
It's good you wrote that list, and noted everything down. I am sure many here can empathise, and may have some helpful ideas for you to try.
I am so sorry....that is a heck of a list of things to endure every day. A few of the things you mentioned I also get too....the head "zaps" and electricity shots through shoulders, chest, right down to fingers. It only happens when I bend my neck forward and down very quickly, maybe when I am outside on rough ground. It has only happened about 4 times in a few years and has not got worse but it feels very weird if it happens.
That is rare for me but I often do wonder if there may be some instability/problem in the neck, especially after hearing about CranioCervical Instability.

There is a good thread here on the forum about CCI (CranioCervical Instability) which might interest you?
https://forums.phoenixrising.me/thr...-cause-of-your-cfs.56908/page-22#post-1015633

Another thing worth a thought....you say you take antibiotics for the acne. Do you take them constantly, or just at certain times? Antibiotics, while useful, can cause awful side effects, and can seriously disrupt the natural function of the gut. Even basically healthy people can report upset stomach etc while on a course of antibiotics, and sometimes the symptoms can linger because of the disturbance of gut flora, for a long time after the course has finished.
If antibiotics are essential, you might be helped by a good probiotic....unless you have already tried that and it didn't help?
Have you tried any alternative natural treatments for the acne?

Constipation could possibly be caused by you being unable to eat, and maybe you can't eat fibre containing foods?
Pale stools can be caused by a liver or gall bladder dysfunction....possibly a bile duct that isn't working as it should. A doctor would maybe know....

Have you been tested for Helicobacter Pylori?
Have you had an endoscopy?

It sounds very much as if you either don't have a doctor's help....or the doctor has "given up" when confounded by the symptoms. Do you take any other medications, for example, antacids? Or any other prescription medicines?

I feel for you and can only hope you find some solution/s to help you feel at least a little better, as soon as possible.
My kindest wishes.
Wolfcub.

Thank you for reading and thinking so much about it :) I haven't heard of CCI, I've noticed that a lot of medical terms I've never heard of are discussed on the forums, it's quite overwhelming and intimidating to see. I will take a look at that thread. I've Googled nerve problems/sensations and M.E a few times but strangely I don't get many results, maybe I have to word it differently.

I haven't taken antibiotics since last August, as a consequence my skin is completely covered in red bumps and acne scars. I was taking a liquid form which burned and ruined my appetite, so I quit. I had been on it since July of 2015. I've read a lot about how antibiotics can cause problems with the GI tract, but I don't know what else to do for my skin. It always seems to be a Catch-22 doesn't it? Probiotics seemed to worsen the acne, and I was drinking probiotic yogurts like Actimel, which I now can't drink as the fruit burns and milk gives me acid reflux... again, a never-ending Catch-22!

The constipation is very on and off, on average I go 1-3 times a day, either a tiny bit or a fair amount (this feels very TMI), but at times I get constipation/piles for a week and have to take milk of magnesia to sort it out. It's not as bad as it used to, I've realised that it was more of an issue when I drank even less than I do now. Maybe it wouldn't be an issue at all if I was free to drink. But drinking fills up my esophagus and causes reflux. So I limit it. It's a crazy thing to have to do.

I will tell a doctor about the pale stools again. Before, it was talked about as a sign of celiac but I got a negative for that.

I've had two endoscopies, the first time in 2015 no abnormalities found, the second last April, a hernia found and acid sitting there. Acid had been seen sitting there on a barium before. I had a biopsy for celiac with this second endoscopy, but again, I got negged.

I was tested for H. Pylori and told I didn't have it. I'm not sure when that test was, 2 or 3 years ago.

I used to take acid reflux meds, I think they're called PPIs, but I stopped because they had done nothing in all the years I'd been taking them, and I couldn't swallow them anymore anyway. I do feel like they've given up on me. I've been on an antidepressant since 2010 but I never had any side effects from it except weight gain (which is all gone, sadly), and ear infections.

Thank you for thinking about it and trying to help!
 
Hiatus hernia can cause
I think my acid reflux has gotten a lot worse because of the hiatus hernia, it was found in April 2018, my reflux had gotten a lot worse in 2017.

I'd had an endoscopy in 2015 and no hernia. I wonder why I developed it though, is it a natural progression of reflux?

I don't know if it can cause other problems. But it's stopping me from drinking I think! I just want to be able to drink water without feeling like I'm overflowing an open bottle...
 
@PoorlyPixi Did you ever try Aloe Vera juice? And fresh Aloe vera from the leaves for the acne? I was just wondering if you had ever tried that and if it helped at all?
 
Hi there, lots of those symptoms I had issues with too. I used to get bad zaps, strong enough to one time throw my body from the lounge face down onto the floor. Fortuantely for me that issue just went away but when I had that, I had a lot more neurological issues going on then I do now eg tremors, myoclonus etc.

I was on prescription drugs for my reflux but fortunately after years of that, a brainy specialist clued into what my issue with that probably was and refered me to an allergist specialist who was top of the field in insulin issues (he was also a researcher in this) ... sure enough the refering specialist was right and my test results showed I had hyperinsulinemia. Reflux is a common symptom with that along with many other symptoms.

Most doctors are not aware of hyperinsulinemia and all the issues this causes. If this is your issue you'll need a 2hr glucose tolerance test WITH the insulin results included to confirm or rule it out.. (and the blood has to be kept on ice during transport to a lab as otherwise the insulin level it can biograde giving a wrong result).

I'm now on a special diet for the hyperinsulinemia (its a bit different to a diabetes diet) and no longer need daily prescription meds for the reflux. I no longer at all get reflux as long as I stick to the diet (and this issue was also the cause of many of the sore throats I was getting).

Here is the website for my specialist in insulin issues (he calls this the pandora's box of illnesses as it can cause so many different symptoms) http://www.agale.com.au/index.htm (it has details on there on that website in regards to testing).
..........

re the constipation.

Not having enough fluids can cause constipation esp when those who have ME already often have issues with low blood volume etc. My IBS-C (constipation type) along with trialing a drug for sleep for a couple of weeks which made my constipation worst, ended up prolapsing my bowel due to the constipation So take care.
 
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@PoorlyPixi Did you ever try Aloe Vera juice? And fresh Aloe vera from the leaves for the acne? I was just wondering if you had ever tried that and if it helped at all?
I didn't, I do remember reading about Aloe Vera for reflux, but I read some articles saying it was potentially harmful, so I decided not to try it. I forgot about it after that. I'll do some reading again. I don't think I've ever tried Aloe Vera for acne, the only thing coming to mind is tea tree which was very harsh and made it worse a long long time ago. Something else I'll look into, thank you for the suggestion!
 
Hi there, lots of those symptoms I had issues with too. I used to get bad zaps, strong enough to one time throw my body from the lounge face down onto the floor. Fortuantely for me that issue just went away but when I had that, I had a lot more neurological issues going on then I do now eg tremors, myoclonus etc.

I was on prescription drugs for my reflux but fortunately after years of that, a brainy specialist clued into what my issue with that probably was and refered me to an allergist specialist who was top of the field in insulin issues (he was also a researcher in this) ... sure enough the refering specialist was right and my test results showed I had. Reflux is a common symptom with that along with many other symptoms.

Most doctors are not aware of hyperinsulinemia and all the issues this causes. If this is your issue you'll need a 2hr glucose tolerance test WITH the insulin results included to confirm or rule it out.. (and the blood has to be kept on ice during transport to a lab as otherwise the insulin level it can biograde giving a wrong result).

I'm now on a special diet for the hyperinsulinemia (its a bit different to a diabetes diet) and no longer need daily prescription meds for the reflux. I no longer at all get reflux as long as I stick to the diet (and this issue was also the cause of many of the sore throats I was getting).

Here is the website for my specialist in insulin issues (he calls this the pandora's box of illnesses as it can cause so many different symptoms) http://www.agale.com.au/index.htm (it has details on there on that website in regards to testing).
..........

re the constipation.

Not having enough fluids can cause constipation esp when those who have ME already often have issues with low blood volume etc. My IBS-C (constipation type) along with trialing a drug for sleep for a couple of weeks which made my constipation worst, ended up prolapsing my bowel due to the constipation So take care.

That sounds quite frightening, I'm glad it went away, did it just disappear on its own accord or do you think something else that was connected to it helped to stop the zaps? I was having quite bad brain zaps around November, but I'm having less now; they seem to have been replaced by chest jolts, leg jolts, although my head gets light and jolts too along with them... especially after I go to bed. It's hard for me to describe even to myself.

I have to admit a lot of medical terms I have never heard of! I've noticed that around the forums, a lot of medical talk that seems beyond me. Being an M.E/CFS patient must require a lot of research and studying. I never would have thought of a connection to reflux and insulin. And I wonder if any of the doctors I have seen would either! Thank you, it's interesting to learn all these things, I've been searching for answers for years.
 
A lot of what you noted is similar to what my 7 yo daughter went through before we started the diet. She had excruciating joint pain, inflammation, skin issues, GERD, leaky gut, eosinophilic esophagitis (strictures, look it up, lots of your symptoms), constipation, history of stupid antibiotics, etc. 6 months on the strict GAPS and 6 months on the easier version cured her of all of this.
 
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