Difficulty breathing 24/7 and Chest Discomfort/... - AMN EASIER

AMN EASIER
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Difficulty breathing 24/7 and Chest Discomfort/ Pain, Addison’s Disease, Hypogonadism, Osteoporosis, extremly high ACTH. Austria ...

csak
csak

Dear AMN community,

first I want to thank the people contributing here, and helping each other coping with this difficult disease.

At the end of my post, I tried to condense the most important issue into one short paragraph.

I from Austria. For me, this is a third world country when it comes to health care quality, because of the medical errors and mistreatments I‘ve received. That‘s why I’m searching for help on the Internet.

I posted it here, because I thought it is more likely that people with this special combination of hormonal issues (Addison’s, Hypogonadism and maybe delayed puberty) are possibly reading this, and might know or have heard of anything.

Medical history

I (male, early thirties) suffer from Addison‘s Disease (Diagnosed (D): adolescence, the neurological issues progressed from there on; I‘m not considered to be „pure AMN“, because of the diagnosis in my pre-adolescent/adolescencent age; that‘s why they are writing on my records ALD/AMN, I guess) — I have extremely high ACTH levels (D: early twenties) above 3000 (measured, in 2017 at a University clinic, the usual clinics here can only measure up to 2000), about 40 times the maximum level, though taking 25 mg* Hydrocortisone daily, also my LH, FSH, Prolactin, Growth hormone levels are increased not as dramatically as the ACTH but they are significantly higher than they should be —, Hypogonadism (D: mid twenties, probably since teenager years), Osteoporosis (D: since Hypogonadism was diagnosed), Fatigue (starting at the time of shortness of breath), low Appetite (since chest pain and shortness of breath, can only eat a very small meal), burning Neuropathic Pain in my legs, Spasticity, basically housebound, if I wouldn’t get help from my family. Newly diagnosed: Tachycardia, (maybe from not getting enough air or the pain, got again no answer from the people that should know something ...), Borderline Hypertension.

I had delayed puberty and growth problems (probably a combination of a too high hydrocortisone dosage while growing up (Bloated face, rapid weight gain (I think, I was over the Cushing threshold), when I was started on hydrocortisone, reduced it since, low Testosterone levels (due to the VLCFA‘s, increased Cortisol levels and non-existent DHEA levels).

The worst problems

But the most hurtful symptoms (as the other stuff alone is not enough to bear) I‘m experiencing, since about over a year now, are labored breathing and chest discomfort — i guess, the right expression would be chest pain; it is so troublesome, because I have it around the clock, socializing with others is hard because I have low amount of „air left“ to talk (most healthy non-disabled people don‘t understand), and being in constant pain makes it hard to make friends and keep the old ones, which mostly disappeared after I was increasingly housebound.

I know my body, and this is definitely not something “normal“ or “imagined“.

I mostly lay in bed, sitting up or even walking with crutches is exhausting, and i get out of breath more quickly, i.e., around five minutes, and the chest starts to hurt stronger. Talking is uncomfortable and causes more pain in my chest.

Chest pain and Shortness of breath (Beginning)

It started few months (only while physically exercising) after I had a simple, at least I thought so, open appendectomy, I was on Testosterone Replacement Therapy at that time for a year, I think. I don‘t know, if it has anything to do with the surgery, later it turned out I had an incisional hernia, I was not informed at the hospital, where I got the appendectomy. They told me everything went normal during the surgery.

I still have a swollen feeling and hurting appendix scar (I wish I had known of the minimal invasive surgery. I was not told that this option was better, so I just asked the surgeon, what she would get — an open appendectomy she told me, I wonder if she lied, now I have around 10 cm scar, that could have been prevented). Compared to the chest pain the appendix problems are minor. Few months after the surgery, I noticed for the first time, that when i physically exercised I experienced trouble with breathing and Regurgitation (air) as if my stomach was squeezed by something.

After a few months things started to get more severe, I experienced shortness of breath and chest discomfort at rest, especially while talking, that was a big tipping point in my life.

It discomforts/ hurts me to talk, because I feel I have little air left in my lungs, i don‘t know, if my diaphragm is/was (on TRT) pressing on my lungs; fluid retention (recently had an MRI, that didn‘t show fluid retention at present) ? There is always a restriction, like a band around my chest and it feels like there is a heavy weight placed on around my sternum, especially at the lower part of the sternum. I feel it more pronounced when I try to breath in or talk. There is no room left to breath in, my lungs feel always full.

Medication

I‘m taking Hydro- and Fludrocortisone (in the US, i guess, it is called Cortef and Florinef), 25 mg* (Hydrocortisone dosage varied so many times, next year I could be again on 15 mg, because of an advice of another endocrinologist, so I just write the initial dosage) and 0.1mg and an extended opioid to relieve my pain, it doesn‘t help with breathing though. Opioids are the only pain medication that helps me with the chest pain! Calcium and Vitamin D for Osteoporosis; the Osteoporosis could have been prevented, if some clinicial pediatrician had cared.

I took TCA‘s, SSRI‘s and Anticonvulsants for neurological pain, chest pain and pain breathing with minimal (legs) to no (chest pain and breathing) benefit, but a lot of side effects.

Testosterone affected my Shortness of breath and Chest Pain

I‘m unable to find an answer to this, is, the breathing trouble and the chest pain are somehow related to my hormones, especially the Testosterone Replacement Therapy (TRT).

I had to stop the replacement, therefore the mentioned sexual dysfunctions kept coming back. But the pain, even though at first got slightly better, it didn‘t go way after I had stopped replacement therapy for over a year now.

Every time (started after the bowel surgery), when I applied the testosterone gel, the breathing got worse, but somewhat got better after 7-9 hours after I applied the gel, when the effects of the gel wore slightly off.

Therefore I completely stopped Testosterone Replacement and my breathing seemed to get a little better, at least at first. Trying to restart the T replacement made it worse (I tried getting on it again because of low energy and other bad stuff, but the chest pain and difficulty breathing even outweighs everything that comes with Hypogonadism.) So it has definitely to do something with my hormones/androgens or even corticosteroids, that might have done something to my heart or vessels, that contributed to the trouble I‘m in.

Other potential causes

Maybe it has or better had something to do with water retention (maybe damaged something, when I was on TRT, my thyroid levels (high TSH and T3, returned to normal later; first high T3 then on another appointment high TSH and T3) were slightly off on three different blood tests, but returned to normal (I hope, they didn’t fake anything, I worry about this because I know Austria — an Austrian hospital faked patients records, because of a supposedly invented new urinary incontinence treatment from Austria, that was published in the Lancet, but shortly afterwards removed; they found out about this dubious behavior, also the Nature (Medicine ?) Journal/Magazin reported on this issue (https://www.nature.com/articles/477384a) and a lot of Austrian newspapers; there are also a lot of cases, where patient records were faked because of medical errors, but they hardly make it in the news (not speaking of international news), only the severe cases)): The Corticosteroids and Testosterone cause increase in water retention (that is at least what the drug interaction tool from drugs[.]com says) and that would cause strains on the heart and vessels.

I have Osteoporosis and Hypogonadism, which was the reason I got on testosterone. I have read that cardiopulmonary symptoms are not uncommon in people with multiple hormonal dysfunctions and patients with delayed puberty.

I tried to restart taking testosterone at the lowest dosage, but always after about 2-4 days in treatment, the breathing and pain gets so much worse, I could not bear continuing it.

Most likely caused by hormonal issues (affecting heart, vessels, ..)

I have never heard of anyone with AMN and these kind of symptoms, which makes me believe that it is more of a hormonal issue: Addison’s Disease and Hypogonadism in conjunction and then later occurring Osteoporosis, which I think is unusual for a male in his early twenties. And my constantly, extreme high ACTH values, abnormal Prolactin, LH and GH values. The medical maltreatment — delayed puberty, not recognizing, that I was deficient of testosterone, while I was growing up or not informing me for whatever reason — we should have switched the hospital, but we were so confused about everything and I was pre-adolescent at that time, so I didn‘t know much, and now figuring out everything on my own is impossible.

Medical test history

I had an ECG and ultrasound of my heart, a CT scan of chest and abdomen; except Splenomegaly, spleen lesions, hypodens area and to a small extend fatty parts of my liver — everything not pathologically, I was told, (I‘m not sure, if I translated everything right). And an incisional hernia from my appendectomy that was diagnosed via ultrasound.

I had a respiratory test, where I was told I couldn‘t expel all the air (I don‘t remember the value, something like RV (?)), which would confirm my feeling of having full lungs and difficulty breathing, but they might have not known how this could be treated, since I left with being told, „ but everything else we tested is ok ...“, which was very frustrating for me, but they didn’t care, they just let me suffer.

English is not my native language, I hope, everything is somewhat understandable.

Questions and asking for forwarding my issues

Does anyone know what could cause these problems, I don‘t even know where to turn to. Does anyone know a doctor specialized in this kind of field and could ask or forward it to an organisation or self-help group. Maybe some specific tests that could help identifying what is wrong with me.

Or point me to a doctor or hospital I could ask and get an helpful answer, it would help me tremendously.

Short Explanation

I suffer from chronic shortness of breath and chest pain at rest all the time for over a year (that is/was worsened by testosterone therapy, after a bowel surgery, that led to an incisional hernia, which I don‘t know, if the surgery has anything to do with it; it started few months after the surgery, but at first only when I physically exercised; Sorry, for this confusing explanation). No one really cares to help me where I live.

The health care I got in the western part of Austria is and was bad for me. Doctors made medical errors and treated me wrongly on several occasions, didn‘t excuse themselves and now just leave me on my own with this. The hormonal medical mistreatments are probably the root cause for this problems I have now. They won’t even hospitalize me for few days to run several tests to at least have done something — I mean, I have ALD/AMN (confirmed by genetical test), how could they be so cold and ignorant — I treated every doctor, even after the medical errors (which I have proof of), with great respect, but lately got increasingly inpatient when being confronted with this ignorant carelessness. The good thing with living in Austria, is, that I won‘t have to travel far to Dignitas in Switzerland, when I can‘t stand all of this anymore.

The only help I could get, is probably from a specialized hospital or medical professionals in a foreign country, which is „demanding“, because of my mobility issues and making my family pay for everything (they are not really happy with that, because they are also poor, if I wasn‘t unable to work I could handle everything on my own) and only doing certain tests at a time, which delays a proper diagnosis, especially if I have to visit different doctors. I‘m afraid, that I have to live with this the rest of my life, which is a dire outlook and not long bearable.

Should I somewhere upload my lab results (blood work, CT, ECG, Heart Ultrasound, Body Plethysmography), if anyone wants to look at it? Sorry, that I‘m writing this months after posting this, maybe no one is looking at it anymore.

Thanks for your help

Julian

27 Replies
oldestnewest

Hi Julian,

Thanks for sharing your story. It was cathartic I'd imagine writing it all out. For sure it seems like you have other challenges in addition to AMN, perhaps an autoimmune disease.

You explaining difficulty breathing reminds me of this guy Dan, we met in Panama a few weeks ago. We both went for Stem Cell therapy. His main issue was just that, a hard time breathing...

check out his story

csak
csak
in reply to JasonHarnum

Hi Jason, thanks for replying, and sorry for the late reply, everything is so exhausting for me. I‘m going to look into it, but I know stem cell transplant in my case would kill me, I‘m physically in a very bad condition, I doubt I could go through all of this .. Finding a donor, which would be difficult on its own, and then the aggressive chemotherapy and the risks associated with the transplant — graft-versus host, sepsis, ...

COwithAMN
COwithAMNAdministrator

Dear Julian

Thank you for contacting us here. You deserve credit for having the courage to tell us your situation in so much detail. We understand what that must have taken for you.

Your symptoms are very complex and in a broad spectrum so it’s hard for any of us to give very specific answers to your questions. I can see that you have given a lot of thought about your other medical conditions that could be causing the problems you are experiencing, so well done about that.

The most pressing problem you seem to be dealing with is your chest pain and breathing problems. You have had a lot of medical interventions such as CT scans, so we must assume they have eliminated obvious physical problems. If the chest pain is AMN-related, then the various pain analgesics recommended by your doctors seem like a reasonable first step. But neuropathic pain is a difficult thing to deal with as many AMN-ers here can attest. The simple fact is that you may need to try different ones to find something that works. If you search HealthUnlocked (not just AMN Easier) you will find multiple posts about that which may help. Search is at top right.

I think you should focus on resolving the chest pain/discomfort problem. You don’t mention it, but bowel problems are a common related problem when you have AMN. Sometimes people get severe constipation and that can cause a feeling of tightness in the chest/abdomen.

I see that you have access to a wide range of the normal medical expertise including neurologists. You need to find one or two that you feel you can rely upon. Your location makes it difficult to suggest where you might go for further treatment. I do know that there is excellent medical knowledge about AMN in France and in Spain and in other European countries.

This is probably not much help, but don’t give up trying. We have all learned that finding solutions is mostly down to us, so you are not alone.

Very best wishes,

Chris

Hi Chris, I have never heard specifically chest pain/difficulty breathing related to AMN in any medical journal or website, have you?

COwithAMN
COwithAMNAdministrator
in reply to JasonHarnum

No, me neither. I mention it because when I was in hospital (after breaking my femur) 2 years ago I got badly constipated and felt a strong tightness across my lower chest/abdomen. Unrelated to AMN.

csak
csak
in reply to JasonHarnum

I wonder, if it is related to my abnormal growing up process (Delayed Puberty and Growth failure).

My heart rate is over 110, maybe because of the pain, my blood pressure was always on the high side, but I was told I just fear doctors (why could that be ..., after they nearly killed me ...)

My adrenal glands stopped working, when I was a teenager and the neurological stuff just progressed slowly.

And I wonder if a lot of people have abnormal values from their pituitary gland, an ACTH level of above 3000, i was told is usually described in literature as a benign tumor, but I have no headache or eye-sight problems.

And the mixture of taking Corticosteroids (from teenage years on) with Androgen (starting in my thirties, because my bones got more brittle), with this failed puberty, I just wonder, if this cumulation of uncommon events lead to this problems. I wouldn‘t be surprised, if it is something with my heart.

There could be the fear of diagnosing another disease, that could have been preventable, but I always think, that would just be so cruel, if they know what I have and won‘t tell me because they could get in trouble, so I try to stay optimistic, and believe they don‘t know any better.

csak
csak
in reply to COwithAMN

Hi, thanks for your reply, sorry that I‘m taking so long to reply, but I‘m so weak; typing all out was very exhausting.

I live in Austria, if that would help anything; I‘m going to update the post, i guess, at this time, at this state of my health, I should not worry about that.

I do really have bowel problems, I didn‘t want to include it, because it is a bit embarrassing; so it is a little bit weird usually I have trouble holding it, but then you are right there is probably also constipation going on, everything is messed up, if the spinal cord is damaged. The thing is with my history I have a hard time trusting anyone here, so I would rather travel away for help.

Aaron98
Aaron98
in reply to csak

Please don't be embarrassed about sharing. I'm nearly 34, and I have significant bowel problems. This is a place where we can be totally honest.

I'm sorry that I can't help much, but I will advise you not to worry too much about the high ACTH levels. Prior to beginning corticosteroid treatment, my levels were in the 9000s. I've only ever heard of one other person with Addison's having higher levels. I initially freaked out about it, but my endocrinologists told me that high ACTH levels on their own are not problematic. Even on corticosteroids, my levels range between 500-2000, so they've never come anywhere near approaching normal levels. I don't worry about it any more - there are way more pressing things to worry about, like my bowels! :)

csak
csak
in reply to Aaron98

Hi Aaron,

you’re right, where else could we discuss this things; you’re nice.

If it is not to invasive to ask; Do you need to use daily enemas? That was what I for a certain time did, when I could bring myself up from bed, but it didn‘t really work for me. Either I used too less water or too much and all sorts of accidents kept happening.

This extrem high ACTH levels are bothering me a bit, because I wonder, if they are so high, what else could go on, I or anyone else couldn‘t know.

I could develop a benign tumor one told me, but you are right, we have other problems to worry about ... Are your other levels from this gland in the normal range, like Prolactin, GH, LH, FSH (LH remained even on testosterone high, while it should go down)?

Do you have trouble falling asleep ? — I always thought it had to do with this ACTH stuff, you are they only person I know of, that has such high levels, is that usual for people like us with AMN? Because I never read anywhere of these high hormonal ranges with Addisons or AMN. How much hydrocortisone do you take a day?

Do you also have Osteoporosis and or Hypogondaism?

Sorry, for so many questions, if you don‘t want to answer them it‘s no problem.

Best health wishes

Julian

Aaron98
Aaron98
in reply to csak

Please don't feel bad about asking personal questions - this is the place. Some others might have some things they don't choose to share, but I'm open!

I don't do enemas or anything else currently for my bowel symptoms. I try to make sure I'm not far from a restroom at any time. Often I will switch from being extremely constipated to having bowel urgency. It's very unpredictable. On rare road trips I will often wear an adult diaper just to be on the safe side.

Apart from high ACTH, my other levels are pretty normal currently. I actually have fairly high testosterone levels, so apparently AMN hasn't affected my testes yet. No hypogonadism, but I do have osteoporosis, or osteopenia (whichever one is low bone density without a major fracture, yet).

I take between 17.5 and 20 mg of hydrocortisone daily, with 0.2 mg of fludrocortisone. The higher dose of fludrocortisone is a life-changer - I feel significantly better on that than I did on 0.1 mg daily.

I do have trouble sleeping, but this is more due to severe neuropathic pain in my feet, as well as leg spasms, than anything else. I occasionally take a mild benzodiazepine to help me sleep on the really bad nights, but otherwise I just try to calm my mind as much as possible before sleep, and observe good sleep hygiene (very dark room, no noise, consistent sleep schedule, etc.).

Please let me know if you have any further questions. I'm happy to help, as I am able.

csak
csak
in reply to Aaron98

Thank you, Aron, for being open about this.

I‘m happy for you, that your other levels are normal and you don‘t suffer from hypogonadism (it is affecting me bad at different levels) and osteopenia instead of osteoporosis — Do you think we have lower bone density because the dosage of hydrocortisone is too high to our bodies at certain times or in general? What did your endocrinologist say about where you got Osteopenia from, because my endocrinologists remained silent. Do you take anything against the Osteopenia?

Did you get a brain MRI of your pituitary gland, because of the high ACTH levels? I heard in the US there are radiologists that specialize themselves on tumors of the pituitary gland, because they are so hard to detect.

When I try to increase or decrease my fludrocortisone dosage, my legs, bowel and bladder are harder to control (I have retention and detrusor hyperactivity [=urge incontinence but not that bad as retention] + pure incontinence but also not so bad as retention).

How long after you increased your dosage from 0.1mg to 0.2mg did you feel better? In terms of less fatigue? How tall are you and how much do you weigh?

My sleep hygiene is bad, it is hard for me to keep a usual sleep schedule.

I‘m sorry that you feel severe pain. Have you considered taking anything against it — Gabapentin/Pregabalin/Amitriptyline/SSRI‘s/Opioids ?

Aaron98
Aaron98
in reply to csak

Hi csak, I'm sorry for taking so long to get back to you. I wanted to answer your questions.

I take nothing for my osteopenia. I suspect it's possible that I may have had low bone density my entire life. I've always been thin and "small-boned".

I've definitely felt less lightheaded after increasing my dosage of fludrocortisone. It has maybe helped with fatigue a bit. I'm 5'10" and about 145 pounds. Prior to diagnosis with Addison's and getting on corticosteroids, I weighed 115 pounds. Rail thin.

I've tried countless medications for my neuropathic pain (much of it chronicled on this forum). I've tried every one you listed and so many more. None of them helped in any significant way, so I've pretty much given up on medications for this. I've also tried a spinal cord stimulator, acupuncture, red light therapy, infrared therapy, topical medications, and more. I've pretty much just accepted the fact that I will probably be in pain for the rest of my life. Acceptance is not the same thing as approval - I try to remind myself of that every day.

csak
csak
in reply to Aaron98

Hi Aaron, no problem.

I heard low bone density can be caused by lower weight (maybe it would help gaining a little bit weight, I know this can be rather difficult), but since your Testosterone levels are good, it should not be of a problem, I think. Have you checked your Vitamin D levels? Maybe taking a little Calcium supplement would help? What are your DHEA levels? — maybe taking DHEA would help a bit?

I think, I’ve forgotten, how people should normally feel — when did you got Addison’s? For me it is over two decades ago.

This is good to hear that by increasing it you feel better now. Was your Aldosterone level low and Renin (or Plasma Renin Activity) high? My Aldosterone keeps coming back always below the lowest number of the range

— I sometimes wonder if they measure it correctly. I don‘t ask anymore about Renin or Plasma Renin Activity or why it is constantly so low, I don‘t get an answer anyway. The same goes for my Cortisol levels, they are nearly nil at the morning when I forgot to take them before measurement. After I take Hydrocortisone in the morning, the Cortisol level is, around an hour later, usually twice as high as the maximal number ... The doctor said my body adapted to it, I don‘t know, I don‘t feel well to tell if he‘s right.

Hearing about your chronic pain is saddening, is the pain level high?

I also had bad experience with these medications, I wonder if there are even people that benefit from them.

Have you been to a pain clinic? (I might be also going there in the future) I even tried Dronabinol for months, but it didn‘t do anything for the pain and in general ...

Did you try botox injections, I read they could help with pain (but from spasticity, I think), but be careful, if they inject too much the walking could be impaired further. You probably also tried combinations of certain medications — I read that some (a lot?) people take two or three different kind of pain relievers, but I don‘t know how much that helps?

I don‘t know what else I could advice you. I’ve even been to someone (healer) who put / hover their hands on / over my body, but it didn‘t help. (I mean I don‘t even know how to relieve mine properly and I got weird side effects from Amitriptyline and Pregabalin; I‘m not going to take any TCA/SSRI again, I think, and I got disturbing mood when I took Pregabalin. Tramadol and Oxycodone seemed to help me a little, but wear off with time. Lorazepam helped me a little with muscle pain.)

I heard about people having pain pumps, but I‘m not sure if that would be a relieve.

I suffer chest pains from time to time. Unbearable at times. Like a red hot golf ball in one of my lungs.

csak
csak
in reply to monkeybus

Hi monkeybus,

it is somehow reassuring that I‘m not alone out there with this problem, though I would not want anyone to be in this physical state.

Have you any any clue what it could be? Is there anything that relieves your suffering.

I forgot to mention in the post, that I had a respiratory test, I was told I could not expel all the air probably, but then on the medical record nothing was reported about it, they last sentence is, I‘m paraphrasing here, just read like, „he has AMN it has probably to do with it“.

If I was a doctor, I would go all the way to help my patient, especially if they suffer from such kind of illness, but then again, I feel like they only care about cutting me open, and satisfy their curiosity, I mean I would have nothing against it, if that would happen in a hospital trained with Leukodystrophys, but they just seemed to do this for their own curiosity, which would help no one suffering from the disease. (Something similar happened to a family, where they didn‘t want their kid, with a rare disease, to be cut open, but they did it anyway.)

The problem is I‘m poor, so I only get poor medical health care. And being state insured means that I‘m last class and the fact I cannot work makes everything worse, one doctor told me I wasn‘t working anyway, why am I even being so demanding (that was the „crown prince“ of the chief medical director ...)

JasonHarnum
JasonHarnum
in reply to csak

hell yes, your life matters, find the fuel to make a comeback when the medical world has written you off. Get mad, angry...you have a whole host of individuals to help keep you accountable, move forward and show them.

regarding stem cells: the video I sent you has nothing to do with finding a donor or chemo...watch the video, google stem cell therapy. Careful, lot of places out there...some are full of shit

Hoy, Jason.

I'll email you in a minute. I've shot lost of video of me walking. I'll get it up online today (once I've pixelated my face, I operated in the shadows).

alright Mr. In the Shadows, send the pixelated video

csak
csak
in reply to JasonHarnum

Thank you for your kind words and pep talk, I hope I have the amount of energy left, that is needed ..

Oh ok, I didn‘t know that you can have stem cell transplants without chemo. He talks about autoimmune disease, I don‘t know if I have that, but I try figuring it out. That seems very promising! I need to further look into this, I‘m sorry but as I said everything takes ages for me.

Sorry, for my ignorance.

JasonHarnum
JasonHarnum
in reply to csak

We're all ignorant on many things, except for monkeybus :)

AMN/ALD is not an autoimmune problem. How is your diet? Food=Energy. If you're eating like shit and already have a compromised system like we ALL do, it doesn't help

csak
csak
in reply to JasonHarnum

Sorry for responding so late, I overlooked your post, I just discovered it, because I was reading through everything here again and editing some of my posts.

Is that kind of stem cell transplant only available in the US or Central America? This was in Panama, does that cost a lot? He probably did get a different stem cell therapy than you — was yours specially for AMN? Did it help you in any way? What was the reason for it, a special symptom? How do you suffer from AMN now, is it bearable? When did AMN started in your body?

I actually eat maybe only a third I used to eat when I was not in constant pain. What I eat is pasta, rice, potatoes. I can’t eat salad because it squeezes my stomach further. I cannot eat a lot because of the constriction around the lower sternum, that somehow presses on my stomach. I‘m taking vitamins in hope of balancing my lack of eating, I wonder how my blood work looks after one year eating only few.

Since taking Amitriptyline my metabolism seems to have slowed down, i was always a little bit underweight, after Ami. I gained 25kg and was nearly overweight, since I only lost about 5kg, even tough I barley eat, but I don‘t move a lot — I lay most of the time, so that might also contribute to my weight.

I experienced that since lately if I get an Infection it takes way longer for my body to fight of the viral or bacterial symptoms.

Sorry for responding so late, I overlooked your post, I just discovered it, because I was reading through everything here again, that might could help me.

I formatted my original post, with headlines, so that is easier to read, if someone in the future might search for the same problems I have.

JasonHarnum
JasonHarnum
in reply to csak

You have a lot more challenges than me, monkeybus and a lot of other individuals here. I'm guessing but your #1 problem is inflammation. The less inflammation you have, the better/quicker your body will heal itself..

Food & environment are HUGE factors...IMO..I'm sure our esteemed colleague Monkeybus has some thoughts on this as well. :)

health.clevelandclinic.org/...

monkeybus
monkeybus
in reply to csak

You live in Austria. One of the best universal healthcare systems in the world.

Travel to Vienna, go to a decent doctor, get a referral to a major teaching hospital and talk to a specialist.

With all due respect to the Americans on here, if you have no money, the last place you want to visit for medical treatment is the USA. You are an EU citizen, so you have the right to visit a hospital anywhere in the EU. Get your EU medical card and if any specialist in Austria cannot help you (which I doubt), you can get on the bus to Germany.

Forget all about local doctors. Get on the Internet and find out who the best specialist is. Email them, or phone their office, they'll respond, then go and visit them.

Ultimately, it is up to you to look after your health.

csak
csak
in reply to monkeybus

You are definitely right that I need to travel somewhere else.

The health care is surely better than in most other countries of the world, but I‘m not sure if they are skilled enough to treat rare, individual problems with a tailored approach for the person suffering the rare disease.

I do think, personally, the chance to find a skilled doctor would be higher in North America — I mean, most medical breakthroughs come from there ...

what is the best doctor in the world going to do to help me, you or our Austrian colleague ? Seriously.

Sure, pain management would help, but I'm guessing people on this forum are just as knowledgeable than individuals that went to a few more years of school. Look at what's helped you best; that AMPX4 or whatever that shit you write about. <joke> It's up to us to like you said

Thank you for sharing.

AMN is only one aspect of things that can impact our bodies.

In 2012, I had labored breathing espacially when lying down.

Turns out I had a leaky heart valve and they drained two litres of fluid out of my lungs.

I had surgery and all is well again.

Make sure you and your doctors don't automatically assume it is AMN causing issues.

csak
csak
in reply to mariagno

That sounds horrible — Did it take them long to figure out what was wrong with you?

Thanks for this important information and I‘m glad that they could help you!

Always had the feeling it could be heart/vessel related, because it started, when I was on those treadmills, and there was always someone with me I talked to, but as this “something“ started, I couldn’t properly talk to him anymore, it was like I was out of breath (at one of the lowest levels of the treadmill), even though I had set it to the same level as usual and over time I even decreased the level.

I didn’t thought much of it, because it was only while exercising, but then it started to bother me at rest, because other than inflicting pain on me, it is harder to socialize with people, because I‘m not that charming anymore, as I was when I was not in chronic pain and had breathlessness ...

Hopefully it can be corrected, even if it is heart related.

I found out that some medication that affect my heart usually worsens my breathing: I took propranolol because my heart rate is around 120 beats per minute at rest. It reduced my heart rate, but made breathing worse, so I stopped it.

The same for the testosterone replacement, while on testosterone I always had a lower heart rate than usual (~90 beats/minute), but I didn‘t measure often, so I‘m not 100% sure, if testosterone affected my heart rate (but I feel it did), I just thought that this were the positive effects on my heart, having normal hormonal levels.

So as you said, there might (definitely) be something totally different behind this, I hope at least one doctor will find out the cause, so I can gain back my life or at least that what‘s left.

Thank you, that you shared this with me! It is good to hear that this issue resolved for you.

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