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Fatigue, shortness of breath, etc.

Messages
18
Hi all,
Its been like 5 years of fatigue and its getting worse... There is nothing on blood tests and doctors have no idea too. Endocrinologist confirmed CFS and proposed that I try synthetic AVP hormone which I refuse to do. Fatigue and breathing problems are ruining my life...
Some background info:
I'm 40, 112KG, 6'1 male. Abt 5 years ago I did a diet for abt 2-3 months - no carbs, no salt and I am w/o gallbladder so maybe I was not absorbing fats either. Bodybuilding exercises 3-4 time a week, some strong multivitamines and drinking every night. Until one night of drinking when I urinated like every 5 minutes and a lot! overall maybe 10-15 times.. And than fatigue came, it was uncomfortable to stand upright, and spending a lot of time in bed. I tried to get better with B12, B-Right, CoQ10, Adrenal Optimizer.. Schisandra got me going again and I was feeling way better. Untill I started Pantethine, which gave me a bit of energy but also made me very worm and sweating all night. I could not sleep for maybe 3 months. I started drinking way more water and urinating way more than ever in my life.. Some periods have been a bit better after that and I have been able to ride a bicycle 10-15km at times or walk 10 km per day. Brain fog never really clears. Some 2-3 years ago I started feeling breathless when walking uphill or upping the intensity when cycling. If I do not stop immediately when I feel it coming - I get worst panic attack one can imagine with throat tightness (as much as I can't even drink water), stomach distention and hyperventilation that brings no relief. This happened a couple of times when I was just walking around the block last few days. I had to decrease the temp so it goes away.. but now I'm scared to even go to the store. Cardiologist finds nothing..
I eat a little meat. If I eat too much I start urinating too much, get constipated and depressed. SO I eat a lot of pasta..and still have to drink a lot of water all day and almost every day I start urinating in the early evening. That stops with dinner. After some meals I also have to drink a lot of water or I get breathless even from speaking. Especially after dinner when I have been urinating I also get fast heartbeat, lightheaded and very warm. So dinner, water, good sleep, more water in the AM not much urination, lunch, more water, 4-5PM urination starts.. I cant go anywhere without water and place to pee. High potassium foods seem to also make me pee too much.
Nothing much in the labs:
-Urine osmolarity was fine.
-Serum osmolarity showed 330 (280-295) on one test and than 275 on another where AVP was in range but low for this specific osmolarity.
- Homocysteine is almost 15 and doc does not care at all.
-Hemoglobin at 165 (120-180) with erythrocytes count at 6.18 (5.9 upper limit) MCV below range and decreasing. B12 at 290 (140-400).
-Electrolytes are fine.
-Blood gas, ammonia, lactate - nothing really..
-ACTH, Renin, Aldosterone, Free Testosterone (close to up limit), serum cortisol, Insulin, Glucose (close to high limit) are OK..

Breathing seems OK like 2 hours after food when I drank enough water.. until I make a physical effort...
This all feels like some dehydration/low blood volume/inability of potassium to get into the cell..I feel like I am better on days when I eat more pasta or pizza and retain a bit more water from carbs and salt but in a day or two I will piss it no matter what I do. On days when I eat more fruit I will piss a lot more and will be drinking a lot more water and I get the feeling as if I washed out the salt from my body - some nasty feeling in the stomach and mouth..

Last thing I tried was L-carnitine fumarate with 2.5mg B1 in it. Can't really say it did anything.
No ideas what to do further..
Advice will be greatly appreciated!
Thanks!

P.S. I know its TLDR. tried to keep it as short as possible.
 
Messages
18
To add that feeling of fatigue is very notable in the legs and limbs. Very often calfs are slightly painful. Pain in the legs comes from short time of cycling and it all does not feel like lactic acid.. Legs are so weak that they can start shaking from like 15 sec if I bend over to tie my shoes..
Another notable thing is that my gait is not right. I am leaning forward from feeling of tightness in the chest and heaviness in the abdomen. This almost disappears when I eat. So probably smth with pleasure or stress hormones is not OK too.
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
Endocrinologist confirmed CFS

I'm not sure how an endocrinologist can do that, since no one knows what markers to look for for ME. I wouldn't rule out other possibilities for some (or even all) of the symptoms.

My standard suggestion is to keep a food/activity/symptoms journal, as detailed as you are willing to do. Human memory is just too fallible. With a journal, you might be able to see some patterns for what affects your symptoms. Some effects are delayed, even by several days, but it might be a consistent delay.

The problem with suggesting specific treatments is that we all respond differently. What works for one might have the opposite effect on someone else. Someone else's treatment might work for you, but if it doesn't, don't keep taking it on the assumption that 'if it worked for them, it must work for me'.

As for fatigue, many of us with ME might experience perceptual fatigue, rather than fatigue caused by physical limitations (ATP production or whatever). It might just be something in how neural signals are processed.
 
Messages
18
Thanks Wishful,
Food is what I pay most attention to. Relatives say I am obsessed that food can have negative effects on how I feel. I have tried vegan, no diary, no simple carbs, low potassium, more salty food, less processed food, more fat.. There are periods that I get a bit more energy. Maybe it relates more to when I am inspired by something - love, challenge at work, great weather.. So you are right that some of it may be related to perception. And I am certain that something in my brain does not function right. Before, there was nothing to stop me - I would try any pill, any herb, climb at hights, fly on airplane, etc. Now I don't take even headache pills..
Fatigue is not even the biggest problem anymore. Shortness of breath is and the panic attacks that I get when I am trying to exercise. These recent cases that I got from even walking make me feel so terrible. I really need to find the cause of that and try to manage it.
I am not even sure I absorb my food. For more than a year when I was going to the toilet - everything was floating there.. Did not seem greasy tho. It was by accident that I had some red wine and than it went to almost normal. So I drink half a cup in the evening past 6 months but still no improvement.
Like all I am sitting home past 3 week and eating pizza, pasta, chocolate and I lost 3 kg..how?! Majority of the food I am eating lately in the evening and only a slice of bread with some bacon in the morning. Maybe stress hormones went nuts from this.. I am thinking to try Now Foods Choline&Inositol in the evening. And maybe a tiny bit B1 with some meal..no other ideas :/
 

lenora

Senior Member
Messages
4,913
Hi all,
Its been like 5 years of fatigue and its getting worse... There is nothing on blood tests and doctors have no idea too. Endocrinologist confirmed CFS and proposed that I try synthetic AVP hormone which I refuse to do. Fatigue and breathing problems are ruining my life...
Some background info:
I'm 40, 112KG, 6'1 male. Abt 5 years ago I did a diet for abt 2-3 months - no carbs, no salt and I am w/o gallbladder so maybe I was not absorbing fats either. Bodybuilding exercises 3-4 time a week, some strong multivitamines and drinking every night. Until one night of drinking when I urinated like every 5 minutes and a lot! overall maybe 10-15 times.. And than fatigue came, it was uncomfortable to stand upright, and spending a lot of time in bed. I tried to get better with B12, B-Right, CoQ10, Adrenal Optimizer.. Schisandra got me going again and I was feeling way better. Untill I started Pantethine, which gave me a bit of energy but also made me very worm and sweating all night. I could not sleep for maybe 3 months. I started drinking way more water and urinating way more than ever in my life.. Some periods have been a bit better after that and I have been able to ride a bicycle 10-15km at times or walk 10 km per day. Brain fog never really clears. Some 2-3 years ago I started feeling breathless when walking uphill or upping the intensity when cycling. If I do not stop immediately when I feel it coming - I get worst panic attack one can imagine with throat tightness (as much as I can't even drink water), stomach distention and hyperventilation that brings no relief. This happened a couple of times when I was just walking around the block last few days. I had to decrease the temp so it goes away.. but now I'm scared to even go to the store. Cardiologist finds nothing..
I eat a little meat. If I eat too much I start urinating too much, get constipated and depressed. SO I eat a lot of pasta..and still have to drink a lot of water all day and almost every day I start urinating in the early evening. That stops with dinner. After some meals I also have to drink a lot of water or I get breathless even from speaking. Especially after dinner when I have been urinating I also get fast heartbeat, lightheaded and very warm. So dinner, water, good sleep, more water in the AM not much urination, lunch, more water, 4-5PM urination starts.. I cant go anywhere without water and place to pee. High potassium foods seem to also make me pee too much.
Nothing much in the labs:
-Urine osmolarity was fine.
-Serum osmolarity showed 330 (280-295) on one test and than 275 on another where AVP was in range but low for this specific osmolarity.
- Homocysteine is almost 15 and doc does not care at all.
-Hemoglobin at 165 (120-180) with erythrocytes count at 6.18 (5.9 upper limit) MCV below range and decreasing. B12 at 290 (140-400).
-Electrolytes are fine.
-Blood gas, ammonia, lactate - nothing really..
-ACTH, Renin, Aldosterone, Free Testosterone (close to up limit), serum cortisol, Insulin, Glucose (close to high limit) are OK..

Breathing seems OK like 2 hours after food when I drank enough water.. until I make a physical effort...
This all feels like some dehydration/low blood volume/inability of potassium to get into the cell..I feel like I am better on days when I eat more pasta or pizza and retain a bit more water from carbs and salt but in a day or two I will piss it no matter what I do. On days when I eat more fruit I will piss a lot more and will be drinking a lot more water and I get the feeling as if I washed out the salt from my body - some nasty feeling in the stomach and mouth..

Last thing I tried was L-carnitine fumarate with 2.5mg B1 in it. Can't really say it did anything.
No ideas what to do further..
Advice will be greatly appreciated!
Thanks!

P.S. I know its TLDR. tried to keep it as short as possible.

Hi stl34.....I have a problem with my electrolytes which has led to something known as Autoimmune Encephalitis, one of the hallmarks being seizures. Recently, upon reading about the electrolyte imbalance, I was surprised that you can actually have too much water (which I did know), which leads to a lot of urination and, get this, ends up being dehydration. The answer seems to be upping your salt somewhat (to hold the fluid), a bit of real sugar and cutting down on the amount of fluid being taken in. When the Dr.'s at the hospital were questions, I was told to cut down to 32 fl. oz./day, which isn't very much when you live in a climate that's as hot as this one can get.

Still, you sound like me, so perhaps you can try backing off the fluids and see exactly where that leads you. I'm 73, not young, and expected this to have a fairly common answer. Wrong! I've been hospitalized 5 times in the past 7 mos., for the exact same thing. This time I was unconscious for 2 days and I feel that my thinking has been affected. I know it has. It may recover, I'm on a lot of different meds, so perhaps that's the reason. Another thing I had noticed....my lips, in spite of all of the fluids, were dry....very dry. I finally found a lanolin that helped, but still didn't totally alleviate it.

Granted, this is without medical proof, but if may be a fairly easy way for you to help yourself...especially since we're still in the coolest months. Best of luck...and good health. Yours, Lenora
 
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Judee

Psalm 46:1-3
Messages
4,461
Location
Great Lakes
Just some thoughts:

Are you eating any salt? My electrolytes are fine but only when I'm taking electrolytes and ones that are high in sodium and chloride. When I'm disciplined to take them, my trips to the bathroom go down a lot.

Also look at how much you are drinking? Not because of addictive water drinking (I forget the term) as some doctors would like you to believe but because I think some mechanism is messed up in my body which makes me crave more water the less salt I have but it should be the other way around. If I'm low on salt (hyponatremia) my body should be craving salty things not more water but it craves more water and that just makes the situation worse even dangerous.

Overhydration can show up as low-to-lowish BUN on medical tests but I don't really think that tells the whole picture.

I do know how you feel because even though I am well hydrated with water, my skin looks dehydrated; my eyes sunken as though I am dehydrated.

I tried to get an idea on your gender because licorice can help for either gender with this problem but it tends to be estrogenic. You also didn't mention your typical blood pressure reading. Have you checked this? What numbers do you usually get?

I had heard that our bodies produce more of the vasopressin at night to concentrate our urine so we can sleep so that may be why your urinary output is lower in the mornings.
 

Wishful

Senior Member
Messages
5,684
Location
Alberta
It was by accident that I had some red wine and than it went to almost normal. So I drink half a cup in the evening past 6 months but still no improvement.

One thing about ME is that many things reduce ME symptoms on the first try, but then quickly stop working and never work again. If wine hasn't worked again in 6 months, it's probably not going to help again.
 

BeADocToGoTo1

Senior Member
Messages
536
Hi @st134

Sorry you are struggling. Are you taking bile salts and/or pancrelipase (pancreatic enzymes) with each meal so that you break down food properly to get the nutrients out of them?

Doctors sadly often overlook all this and do not have time to really dig in to underlying possible causes.

Please check for nutrient deficiencies or any malabsorption issues including pancreas function, exocrine pancreatic insufficiency (EPI), small intestinal bacterial overgrowth (SIBO), liver function, Candida yeast overgrowth, gallbladder function, stomach acid strength, Crohn's, food sensitivities, Celiac. Tests such as Genova Diagnostics FMV or Great Plains Lab Organic Acid Test (OAT) are great for an overview.

Exocrine Pancreatic Insufficiency (EPI), SIBO, Candida

This thread has a lot of info on SIBO, Exocrine Pancreatic Insufficiency (EPI), Candida overgrowth, reflux, malabsorption issues:

https://forums.phoenixrising.me/thr...y-epi-and-chronic-fatigue-syndrome-cfs.62997/

Tests to Consider
  • Stool test pancreatic elastase
  • Blood test fasting trypsin (to see if you produce enough enzyme for protein breakdown)
  • Comprehensive Stool test for parasites, pathogenes, dysbiosis. E.g. Genova Diagnostics - Comprehensive Digestive Stool Analysis 2.0 with Parasitology (microbiome dysbiosis indicators), Fecal Fat Distribution (checks if you have issues with different types of fat intake and digestion), Elastase (for EPI, pancreas enzyme marker)and Chymotrypsin (for EPI, pancreas enzyme marker). Doctor's Data has similar tests.
  • Stool test chymotrypsin (similar to, but not as accurate as elastase)
  • Intestinal permeability. Intestinal permeability (a.k.a. leaky gut) is something that your Gastro can also test for. The one I did was: Cyrex Laboratories - Intestinal Antigenic Permeability Screen. It measures intestinal permeability to large molecules, which can cause autoimmune reactions, inflammation, food sensitivities, malabsorption, etc.
  • Gallbladder function. Yet another element that is important in breaking down food and thus any gallbladder issues can cause malabsorption.
  • SIBO and Candida overgrowth. With SIBO, both methane and hydrogen ones should be tested and tackled. Multi-pronged approach is needed as just antibiotics is not enough. A breath test for SIBO and something such as Genova FMV or Great Plains Lab Organic Acid Test (OAT) can be helpful here.
  • Nutrient level and Organic Acid testing such as Genova FMV or Great Plains Lab Organic Acid Test (OAT)
  • Fasting blood sugar tests: e.g. HbA1c, triglycerides, c-peptide, insulin, ketones, glucose
  • Lactose intolerance: Have you tried dairy free for 4-6 weeks? Does it help if you add lactase pills with anything dairy?
  • Food sensitivities: Any food allergy and sensitivity tests completed? What about gluten sensitivity tests?
  • MRI of the abdomen with MRCP with contrast: It gives a 3D picture of the gallbladder and high resolution liver, pancreas, gallbladder, ducts, stomach intestines. Amazing test.
  • Stomach acid: Is your pH low enough to start digesting food? If it is too high this will exacerbate any SIBO, candida overgrowths, and malabsorption. Are you taking antacids or PPI as these only cover symptoms, do nothing about root cause, and can make things much worse. Have you tried the following simple selftest:

    A simple unscientific test to approximate acid level is by drinking a quarter teaspoon of baking soda (sodium bicarbonate) mixed in a glass of water on an empty stomach in the morning. This creates bubbles within two to three minutes when mixed with the hydrochloric acid in your stomach. If after five minutes nothing happens, there is a very good chance the pH of your stomach acid is too high (i.e., low stomach acid).

Food and Drink

Sounds like you have already done a lot of work here. I may have overlooked it, but I did not see any blood sugar test info which also help indicate diet quality. (e.g. HbA1c, triglycerides, c-peptide, insulin, ketones, glucose) Do you have a blood glucose meter and/or a blood ketone meter for tracking the impact of specific food on your personal situation?

Have you kept a food diary for a while and note how you feel and whether there are correlations? Have you lost muscle or bone weight? Have you kept track of body composition (e.g. with a scale that can indicate weight, body fat %, body water %, muscle mass, metabolic age, bone mass, visceral fat, and basal metabolic rate)? Have you tracked calorie intake versus your personal requirement? How many grams of carbs do you eat and drink per day and per meal? How many grams of protein?

Do you eat within a specific window of time during the day? How often do you eat?

Do you still eat in restaurants or cafes as there is no control on quality and ingredients that could be impacting you?

Do you drink any calories? For example, it is still surprising to me how many people think that drinking juice or low fat milk is healthy for you.

Of course smoking and alcohol are no-brainers when you are not doing well. I always thought I ate healthily and yet little did I really know until my health took a nosedive. And if you have trouble digesting and absorbing, dietary changes are tough to see results from in the short term. Do you ever have silent reflux or acid reflux (with heartburn feeling)?

What is the quality of your water? Are you drinking, e.g. mineral, well, tap, bottled (plastic or glass), chlorinated (all US tap water), fluoridated (all US tap water), reverse osmosis, reverse osmosis with minerals added back in, filtered (what kind?), restaurant or cafe water, etc.? Try a few different types of mineral waters (glass bottle of course as you don't want the extra hit of plastic particles and leached chemicals) to see whether that helps.

Another thread on diet that might be of interest where I also put a few posts:

https://forums.phoenixrising.me/threads/what-diet-do-you-follow.78920/post-2254091
 
Messages
47
i have some of your Symptoms too, fatigue, weak legs, hard to take breath, i get tired very quickly from very simple tasks, you must check if you have blood pressure and fast heart beat problem which both im having and taking meds for them but still have very bad fatigue
 

GreenEdge

Senior Member
Messages
563
Location
Brisbane, Australia
Hi @st134 and @lenora,

Your description of what happened 5 years ago sounds like you over worked your transverse abdominal muscle to the point of fatigue. Did you spend a lot more time standing that day than what you're used to?

The transversus abdominus muscle (TA) plays a very important role in pelvic floor (PF)... more info -- When the TA muscle becomes fatigued your bladder won't be able to hold as much, so you'll need to urinate more often.

When the TA muscle becomes fatigued your standing posture changes. When viewed side on your pelvis (hip bone) comes forward of ankle (when it should be vertically inline with ankle, shoulder and ear) and your upper back leans backward to counter balance the forward pelvis. The head and neck stick out forward to compensate for upper body leaning back and also the shoulders slouch forward causing a tightening of the chest. The head forward posture causes tight muscles in the back of the neck near base of skull that constrict blood flow to the back of the brain... more info

I suggest you see a Physiotherapist that has ultrasound to see contracting muscles. The ultrasound capability enables the physiotherapist (and you) to see that you're contracting the right muscles and can teach you to contract the TA muscle. This exercise can be done in bed. Learning how to contract it will give you more bladder control.

Also you can practice improving your standing posture by standing in front of table/counter top and whilst holding on to edge with hands, practice moving your waist/bottom (bum) back and holding that position. Then (whilst holding that position) practice moving side to side by shifting your weight slowly from one leg to the other while keeping your bum back. Your upper body posture will naturally correct itself; all you need to think about is keeping your bum back. Do not think about contracting abdominal muscles because you will contract the wrong layer; the TA muscle is the deepest layer and contracts automatically when you keep your bum back. So whilst out walking practice keeping your bum back, especially when you encounter stairs or a steep slope.

With regular daily practice you can restore normal posture, which might be the cause of your fatigue. :thumbsup:
 
Messages
18
Hi All,
It took me some time to find a way to do some more tests and here are the results (attached).
From what I see cortisol is very low. Also did 24h urine cortisol and it showed 27ug/24h (4.3-176) which I guess also confirms it.
Amino acid profile shows very low Arginine and Citrulline and elevated Ornithine and Valine.
Fatty acid profile almost all is not ok. Not sure how to interpret it at all. I don't have gallbladder if it matters.
OAT test shows lowish HVA and elevated HVA/VMA ratio, low Ascorbic acid, some hints of serotonin problems, B6, NAC, etc..
Stool test shows a couple of problematic bacteria strains, very high Secretory Iga and low colon PH from what I can understand.
The regular blood tests have like almost nothing to mention besides lowish serum iron (with very good hemoglobin, erythrocyte count, but lowish erythrocyte hemoglobih and size and low thrombocyte size), high homocysteine at 15. Electrolytes are fine (but I see sodium variations between 135-14x). Insulin at 10 (3-25), blood sugar at 4.6 (3.3-6).

Otherways, I saw a bit of improvement after months on home-made food with not much protein and salt. Taking Ashwagandha and a tiny amounts of B1, Carnitine and some Shizandra. Than added "Himalaya Liver Care" from which I was urinating a lot. Added 1/3 to 1/2 capsule "Now Foods Liver Refresh" from which I noticed irritability fade, some more optimism and energy and decrease of breathlessness. Until one day where again I ate more meat and lost 2 kg of weigh from urinating in one day. And went back to my misery of crazy fear from everything and panic attacks, intense shortness of breath (sometimes even at rest). Some sort of attacks intensified a lot. They come after food or 2hrs after food, or when I try even very light physical effort, or when I didn't drink water for some time. So my throat goes very tight, chest is like its burning and tight, hyperventilation like crazy and panic. So I have to immediately drink water, stop all activity and try to breath as little as possible. All when from bad to worse when at one point when was not able to drink too much water - felt as if it was killing me and like my stomach is washed out. A plate of a few fruits that I also ate once also send me in a state where I could not take a breath, drink water or whatever.. was just trying to live for like 30 mins. So I decreased the salt further and shortness of breath is better. Decreased meat further and urination decreased a bit (but still I drink abt 3.5-4 litters of water per day..).
And now I am mostly eating rice with tiny amount with meat, bread, some potatoes and few other vegies. Can't go to work due to these attacks for water and panic, fears. Scared to move more than 30 meters away from home or car, altho I try to walk around those to for like 30 min per day.
If I manage to sleep for like 7-8 hrs without waking up to piss and drink water, it may happen that I wake up with like "tight" or "dry" lungs and I can only breathe shallow for like 10-15 minutes until the water I drink fixes me.
Heart rate quite often increases a lot after food. Especially after breakfast when my weight if abt 1kg lower than my usual weight during the day. It can go from 60-70 to like 100-110 and that feels quite intense if I try to do any physical effort..
It has been a few times already that on a day (or following day) that I eat more protein, I start urinating so much that I loose 1-2 kg and all goes downhill from there. Salty food sends me to insane breathlessness and panic sometimes right after I am done eating. I have also noticed that if I get angry and I don't immediately detach, I get furious. Its insane aggression. And that can also make me pee too much and all that goes with it..

I have seen endocrinologist, the lung doctor, the kidney doctor, cardiologist, gastro. From all that only findings were slightly enlarged liver, mildly enlarged pancreas, and the kidney doctor asked me to do a questionnaire which showed I am in depression.

So seeking some help how to get my life back. Ofc my confidence and self-esteem are dead after 7-8 months (not including previous 4 years of fatigue, and all other nightmares) of suffering but they start to come back when I see a day or two without intense problems.

Any help in reading those results and any advice will be appreciated!

Thank you all! Be healthy! oat.jpgamino acids.jpgcortisol.jpgfatty acids.jpgstool.jpg
 

lenora

Senior Member
Messages
4,913
Hello @st134......I think you've already been given at least a good part of the answer to your problems. If a questionnaire showed that you're depressed (and the question is: Which came first, you being ill or you being depressed?...b/c illness can bring on depression). You sound as if you're having panic attacks and it may be worth your while to see a psychiatrist who can evaluate you and, if necessary, get you on proper medication.

I suffer from severe anxiety/panic attacks myself, so recognize a lot of the signs. When I was very young, I was able to work my way out of them with the help of a group and a book that I read until the thing had passed. In later years (and I'm going on 74), I was no longer able to help myself, and was put on a mild anti-anxiety drug, Buspar, which was non-addictive and helped for years and years. Then I had 3 attacks of shingles, now if you want to be sick, have them on top of ME and a lot of other problems....I was bedridden for a year, and could not get over the voice in my head that kept telling me to immediately do something I knew I shouldn't. But it was insistent. I'm lucky enough to have a neurologist that I've seen for probably 35 yrs. He knows me well, and put me on Xanax....the recycling in my head stopped immediately and I've been fine ever since.

Horrid things, aren't they? I feel for you and anyone else going through them. One way of slowing them down until you can get help is this: Take a breath in, hold it for a count of 4 and then expel it for a count of 8 or even longer if you can, but aim for 8 in the beginning. It will slow everything down in your body...and will at least help. Somehow it seems food and anxiety are intertwined with you.

I'm a big believer in vitamins and herbs, but when it comes to the mind, I don't think they can cut it. Yes, some people may have had success, but you don't want to get any worse than you are. I do wish you well....I know it's a hard road to travel.

Two other thoughts: You may be suffering from adrenal fatigue, but it would take a Dr. to determine that. I still think your primary problem is anxiety/panic attacks.

You're probably taking too good a care of your body, and if you give it the right things, it will do that on its own. Too much medical news can scare us into doing too many things to our bodies. That then sets the mind up for problems. I forget if you saw a neurologist, but that and a psychiatrist (and you may get a name from the neurologist) are the ones I'd aim for. You may have to go into counseling for a time, but that's a good thing, it will help you understand what's happening and perhaps why. I do wish you better health soon. Yours, Lenora.
 
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lenora

Senior Member
Messages
4,913
Good Morning @GreenEdge .......I just saw your answer to my question or remark about posture, and I'd like to say "thanks." Yes, I've been doing the counter exercise, but my therapist wants my head to be tucked down and, like you said, my bum out. Going from foot to foot is good.

Earlier this week I had my 6th stent (5 in my heart) and the last in my carotid artery. I'm still recovering from it, but I did have the good sense to ask the Dr. if I could continue some exercises that were helping me a lot, but they involved moving my head from side to side by following my arm in the air. I have a whole new range of motion as a result of that exercise, but he wants me to stop it immediately. Which is fine, that's why I asked in the first place...I need advice. He said the placement of the carotid shunt may lead to displacing it. I'll wait until the new year and then I'm returning to PT (Myofascial Therapy) and hopefully, I can get some other exercises that won't cause trouble. I'm a big believer in moving as much as possible within my limits...and I know it isn't a lot, but I just want a bit of strength back to say, walk through an airport so I can visit our daughter in CA., that type of thing. My r. leg is presently weak after the surgery, but it seems to be getting stronger each day. Hopefully, that will be the end of my hospitalizations for this year...I thought I had 8, but no 9 as of the last one...all within one year. I just wanted to say thanks for replying. I sincerely hope that you're doing well, and perhaps even improving in incremental ways. Yours, Lenora.
 
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Messages
18
Thank you for your answer! Unfortunately, I have walked the road with psychiatrists before due to depression and panic attacks in my younger years. Can say I have been fed most SSRIs, some SNRIs and a few sedatives like clonazepam. That was going on for like 10 years. If any help it was for a month. At the end they wanted to put me on experimental drug.. Than I decided that all the damn pills are going to the trash bin and that was what happened. For like 3 months it was like electricity was hitting me. But I was determined and I held strong. It was for good. For like 6-7 years now I am clean and proud of it.
I now know that 6-7 cups of coffee, 2 litters of coca cola, alcohol , inabitlity to take a loss, false self-esteem, playing video games and not seeing the sun will eventually get you to know what SSRI is. What it is is the devil. You get 1 month of cheerful life and kill your brain for years to come. Plus the addiction, heart problems, etc.
 

gregh286

Senior Member
Messages
976
Location
Londonderry, Northern Ireland.
I had to get a cystospopy about a month ago.
Pee every 10 minutes. Fatigue x10.
Blood spots in urine twice.
Had it most of 2020 on and off.
Doc told me to withdraw caffeine and sweetener and drink only water.
Week later issue gone
Couldn't believe the fatigue impact of it. It was horrendous.
Back to a baseline 8/10 straight away again.

Nearly scared to drink anything else now.
Quite a bizarre spell.
Dont know if that helps.
 
Messages
18
I had to get a cystospopy about a month ago.
Pee every 10 minutes. Fatigue x10.
Blood spots in urine twice.
Had it most of 2020 on and off.
Doc told me to withdraw caffeine and sweetener and drink only water.
Week later issue gone
Couldn't believe the fatigue impact of it. It was horrendous.
Back to a baseline 8/10 straight away again.

Nearly scared to drink anything else now.
Quite a bizarre spell.
Dont know if that helps.

I am not drinking any coffee or coke for like 3-4 years already :( But your experience also confirms that some hormones (not sure which - dopamine, adrenaline, cortisol, .. ) are increasing urination. I am also experiencing those sudden losses of energy when attack strikes.
If anything, in my case some clues could be in that HVA/VMA ratio. Maybe dopamine builds up and does not properly convert to adrenaline.

My other ideas are related to my low Arginine, high Ornithine and high Valine. I found an article that was saying that when ARG is low Arginase activity is increased and iNOS is starving for substrate. Could be some explanation of the shortness of breath - the lack of NO. What puzzles me here is that when I was better for a few days I was doing some push ups and muscles were pumping like crazy. Two sets of 10-15 and I was feeling pumped like after full workout in my youth. Have to be plenty of NO to get such pump. What bothers me to take ARG is that with inflammation present (Secretory Iga is quite high) extra NO can produce nitrotyrosine. Also, cortisol limits NO production and mine is low..
Also I have red some people saying they had shortness of breath when they had low cortisol. My naturopath suggested that I start some 25mg pregnenolone but I am terrified by that idea. Plenty people were saying to stay away from hormones. Also, can't understand how my free testosterone is almost at the max but my cortisol is low..
Have been trying to figure the cause of that excess urination for years. Still no clue..
 

gregh286

Senior Member
Messages
976
Location
Londonderry, Northern Ireland.
That shortness of breath is a air hunger as opposed to being out of breath like panting. ...like you need a large sigh a open the diagram fully. Its common symptom in cfs and been with me day 1 on and off.
Some fcked up exchange of o2 and co2 in bloodstream not operating right. Comes on more with acidic diet and relives with minerals and alkaline. To me it a acid / alkaline disturbance.

Thats excess urination is a funny one. I always called it dumping water. Drinking and urination was 10 minutes after. Just no bloody retention of fluid. Its mega dangerous if you think about it.
If your drinking only water can't really blame acid alkaline base...did you ever tried prerelief?
 

dave11

Senior Member
Messages
158
Fatigue is not even the biggest problem anymore. Shortness of breath is and the panic attacks that I get when I am trying to exercise. These recent cases that I got from even walking make me feel so terrible. I really need to find the cause of that and try to manage it.

Air hunger is my big problem. I am always looking for possible causes. Still not sure. This probably does not apply to your situation, but just in case, it might give you some insight for your research:

https://www.drlamcoaching.com/blog/signs-symptoms-adrenal-fatigue-breathlessness-causes/