Is it worth me seeking ANOTHERRRRR medical opinion??

[lowkey]

Hello everyone,
I hope as you are reading this you are feeling as well as you possibly can given the circumstances we find ourselves in.

I'm not too sure exactly what I hope to achieve with this post. I think I am just feeling very hopeless and tired of feeling unwell. Anyway..
Recently I have been wondering (as I'm sure many of us in the 'early' stages of CFS do) whether I do infact have CFS or whether I have something else, something curable, which has not been diagnosed. So I guess I was seeking some help from you guys, do you think it is worth seeing another medical proffesional to run some tests/refer me to a therapist or anything? or just continue what i'm doing?

Basically, I have just turned 21. I am a male. Previously fit and healthy, and a footballer (soccer) at quite a high level. Also excelled academically and was doing well at uni before i fell ill (even though it may not seem like it reading this post, blame the brain fog!!). I first started to feel ill in November 2014, although in hindsight, I had being feeling a bit funky ever since a bout of gastroentiritis in september 2014. I was diagnosed with CFS by a specialist in June 2015, after many doctors visits and of course many perfectly healthy blood tests. I dropped out of uni a few months after the diagnosis, and quit my job and moved back with my parents in december. I have a good diet with lots of vegetables and not much sugar. I take a probiotic, fish oil, diatomaceous earth, d-ribose, and mitoactivate (which is meant to activate your mitochondria). I do not have severe CFS but it is enough to really really limit my daily life. As i said I have dropped out of uni and moved home, I pretty much have no social life, and i guess I am quite depressed.

I am writing here because I am wondering if I do have CFS or whether it is something else. I am pretty sure it is CFS (a mild case as i'm sure some will be quick to point out, but still horrible), but I live in hope. One of the things that confuses me is - I am not super tired. I have energy. It is just I never feel like doing anything because of the brain fog, spacey feeling and pressure in my head. Also, PEM isn't super relevant to me. I can have a busy day (for a person with CFS) where I might go for a (slow) 20 minute walk with my dog, and read a book for 2 hours etc and I won't feel any worse the next day. When i do have crashes, or worseining of my symptoms, it is seemingly random, and will last a few days. I still have many symtoms associated with cfs, bad brain fog, can't tolerate noise, over stimulated very easily in social situations, especially if its with people i don't know very well.

So do you think it is worth going back to a doctor or a specialist? Might it be depression/anxiety? I tend to think my symptoms cause my depression, not the other way round. Something like an inner ear problem? Or should I just be glad that overwhelming fatigue isn't a symptom of mine, and continue resting and eating well, praying that i magically return to full health?

Again, not too sure what I hope to gain from this post, I guess sometimes its just nice to talk about your symptoms with people who actually know what you're going through. I hope this post isn't too hard to undertand and jumbled.

Thanks!!!!!!!!!!

 

[lowkey]

Oh, also, a new symptom that has appeared in the last few weeks is a loss of sex drive/libido. I'm not sure if it is relevant? But it certainly isn't usual for a 21 year old

 

[Sea]

Since you don't completely fit the typical pattern for ME/CFS it certainly is worth seeing if you can get some further testing. Do you know what tests have been done so far?

 

[Gingergrrl]

Welcome and I would get another opinion and further testing. You know if you feel depressed and if this "fits" the core of your experience vs. it being a secondary reaction to your illness.

I have been sick for three years and with each doctor I saw (and many were dead ends), I ended up with some information that pushed me forward or gave me new ideas to pursue. I now have a handful of excellent doctors and have a much better idea of what is wrong with me now regardless of the label placed on it.

No matter how close I was to giving up, am so glad I didn't and am close to getting treatment which I think could help me. So for me, it was worth it to press on until I found the right doctors.

Hope that helps and best wishes!

ETA: Edited to make this more coherent!

 

[lowkey]

Since you don't completely fit the typical pattern for ME/CFS it certainly is worth seeing if you can get some further testing. Do you know what tests have been done so far?

I'm not 100% sure all of the tests that I have had done. I guess just every standard blood test etc that a doctor would order when a patient has long-term fatigue and malaise. Can you think of any it would be worth investigating? cheers

 

[lowkey]

Welcome and I would get another opinion and further testing. You know if you feel depressed and if this "fits" the core of your experience vs. it being a secondary reaction to your illness.

I have been sick for three years and with each doctor I see (and many were dead ends), I ended up with some excellent doctors and have a much better idea what is wrong with me now regardless of the label placed on it.

No matter how close I was to giving up, am so glad I didn't and am close to getting treatment which I think could help me. So for me, it was worth it to press on until I found the right doctors.

Hope that helps and best wishes!

Thank you for your answer, and good luck getting better!!

 

[wherearemypillows]

I can relate to you a lot @lowkey in terms of seeming to have a "milder" case of CFS - my predominant complaint is severe brain fog (specifically processing speed, memory, verbal fluency, general reasoning) and I don't have PEM. This also started in September 2014 while in university. In the beginning, when I would have random decent periods of functioning, I would start defaulting to "is it really as bad as I say it is [when I'm feeling my worst]? Am I just malingering? Doctors can't find anything wrong in my bloodwork. This will probably pass." I also went through the whole depression diagnosis thing even though I always felt internally that any "depression" was secondary to having lost my cognitive abilities. I went along with it though and tried 2 different antidepressants for ~1 month each, with absolutely no effect (neither good nor bad). It was a waste of time.

I just started seeing a doctor who specializes in CFS/chronic illness and I feel like I am finally being heard and having proper medical care.

My advice: keep pushing for answers. Whatever your dealing with has clearly negatively impacted your life and I know how devastating that feels. Be your own health advocate and do whatever you can to find doctors who see patients with chronic illness. It's incredibly expensive, but if you have the means to, look into the Open Medicine Institute in California. They are phenomenal there.

Good luck

 

[panckage]

Also, PEM isn't super relevant to me. I can have a busy day (for a person with CFS) where I might go for a (slow) 20 minute walk with my dog, and read a book for 2 hours etc and I won't feel any worse the next day. When i do have crashes, or worseining of my symptoms, it is seemingly random, and will last a few days.

These symptoms sound very similar to mine. They also sound very familiar for 'mild' CFS. My crashes seemed pretty random too. I believe that chronotropic intolerance typically prevents overexertion which makes PEM hard to reproduce. With experimentation I can now fairly reliablely cause PEM. It took a really long time to figure this out. There's a thread I want to link to but I can't currently find it
I'll try to add it later!

 

[TigerLilea]

Have you considered that it could possibly be your gut bacteria that is the problem as you had gastroentiritis? Is it possible for you to get a stool sample tested? Have you tried replenishing your gut bacteria through pre- and pro- biotics?

 

[lowkey]

Have you considered that it could possibly be your gut bacteria that is the problem as you had gastroentiritis? Is it possible for you to get a stool sample tested? Have you tried replenishing your gut bacteria through pre- and pro- biotics?

I think gut bacteria probably is quite relevant in my case, i've done quite a lot to try and detoxify my gut, and early on when I was searching for a diagnosis I had a few stool samples

 

[taniaaust1]

You are coming across to me as being in denial of whatever illness you have to a degree or the severity of it.

eg you call your illness mild. Any illness in which a person has to drop out of their studies and move back home, shouldnt be called mild. You do not have a mild illness.

One of the things that confuses me is - I am not super tired. I have energy. It is just I never feel like doing anything because of the brain fog, spacey feeling and pressure in my head. Also, PEM isn't super relevant to me. I can have a busy day (for a person with CFS) where I might go for a (slow) 20 minute walk with my dog, and read a book for 2 hours etc and I won't feel any worse the next day.

You also call a slow 2hr walk with reading a book for 2hrs a "busy day". That isnt really a busy day, that is a normal persons rest day, then you go on to say PEM isnt relevant to you but on reading your post, I can see you arent doing much at all, possibly not enough to cause PEM due to the symptoms when are stopping you from doing more.

The symptoms which are stopping you from doing much..the brain fog, spacey and head pressure are all symptoms of orthostatic intollerance. I strongly suggest to get a tilt table test done as this may give you the clue on why you arent doing much and why you arent doing enough to be going into PEM. Also with PEM, it doesnt necessarily hit the next day, it can hit a person 48hrs later.

'When i do have crashes, or worseining of my symptoms, it is seemingly random, and will last a few days. "

You may be missing you have PEM as it may be starting to hit you outside of the window you are expecting.

"So do you think it is worth going back to a doctor or a specialist?"

Yes, I think you need to find a place which does tilt table testing and which looks for things such as posteral hypotension or posteral hypertension (I get the major head pressure when I go into the hyper rather then my hypo) and POTS.

" Might it be depression/anxiety? "

It could be IF its that which is stopping you from doing things rather then actual symptoms stopping you from doing things. Maybe it could turn out you have just something like POTs and a bit of depression rather then ME/CFS.

Also I strongly suggest to get yourself copies of your medical tests. I've found many abnormalities on mine which drs didnt tell me at the time which were in fact relivant eg fairly severe hypoglycemia on blood tests. Also that will help you know what has been tested and what hasnt been which could prove to be helpful to know in the future.

 

[Sea]

I'm not 100% sure all of the tests that I have had done. I guess just every standard blood test etc that a doctor would order when a patient has long-term fatigue and malaise. Can you think of any it would be worth investigating? cheers

This document is a good guide for what could be ruled in or or out
https://sites.google.com/site/cfstestingandtreatmentroadmap/

 

[Amelie]

As someone who was seen by 24 different doctors over the course of 7 years, I'd be in a very, very bad place to tell you to accept your diagnosis without trying to dig further into it.

And, while I am also not the right person to tell you if you are or aren't suffering from clinical depression (only a trained professional could do that), I would still suggest that you ask yourself this question: If you weren't feeling tired or suffering from brain fog, stimuli overload, and all the other symptoms; would you still be interested in pursuing all those activities in your life that you used to love being able to do?

If the answer is yes, then there are some very good chances that your main issue isn't that you are anxious and/or depressed.

Like the psychiatrist that evaluated me in the very beginning of my own disability leave explained to me, it is normal for someone who used to be active and love their life to feel sad, anxious, and depressed when their illness forces them to stop doing the things they love.

You basically are forced to mourn the person you used to be, and the life you used to have. The kind of reactive depression you might be experiencing under those circumstances can be very normal and even healthy.

You worry that things are never going to go back the way it was, that you're only going to get worse, you're not sure if you'll still be able to have a family (if that was one of your goals in life), if the friends and people you love are still going to be a part of your life, etc. So there again, some level of anxiety is easily expected.

HOWEVER, if you start having dark thoughts, and/or if it doesn't seem to get any easier over time, please do not hesitate to go see a psychiatrist so they can properly evaluate you and offer you support and treatment.

Actually, if you feel the need to be evaluated now to really rule out a depressive or anxiety disorder, please do so! Because I did.

The reason why I insisted my family doctor send me to see a psychiatrist was because I was genuinely hoping to be suffering from some form of atypical depression, or even a bipolar disorder. Like a lot of people with a ME/CFS diagnosis, in the beginning I struggled with some periods where I felt like my energy was utterly depleted, and then some days where I was feeling better. So, whenever I was having a "good day", I would instinctively try to catch up with everything I'd been unable to do while exhausted, giving me the illusion of being hyperactive / slightly manic on those days... And then, I would "crash" again, giving me the impression that I was then experiencing some kind of atypical "depression".

But the issue wasn't that my mood was high and then it was low. It was that I was desperate to catch up and stay afloat, used all my energy all at once, and then was left with no juice at all! On "good days" I was happy that I was able to do things and hoping that it would continue. On "bad days" I was disheartened and sad that I wasn't able to do anything again.

Feeling hopeful and then sad were natural emotional responses to what was happening to me.

The psychiatrist saw that, too. He's the one who convinced me that it wasn't a mood disorder and that my family doctor needed to keep looking for other causes behind my symptoms, because none of them struck him as being psychosomatic, either.

It was a huge disappointment since I was genuinely hoping back then to be suffering from some mood disorder given that there are very good and often effective treatments available. I desperately wanted my life back, and had a hard time accepting that I was indeed chronically ill with some severe and disabling physical illness.

And the thing is, you are still very young, even younger than I was (28) when I became disabled.

This is very young for you to just resign yourself to living with a potentially severely disabling condition for the rest of your life if you do not have the feeling that you have done everything humanly possible to solve the mystery of your illness and get better.

At least, this was how I personally felt. I had a good life, great career, was and am still blessed to share it with a man that is my best friend and the love of my life.

So, before I could say "alright, this is it. This is as far as I can go and I'm ready to accept that this is my life now and there are currently no other particular solutions for me to explore..."

Well, I needed to do all of that exploring.

Fact is, I believe that I had it in me to reach that point where I would have had to accept my diagnosis and simply learn to continue to live with it.

I was actually getting there and running out of ideas and other theories.

Over those 7 years I kept searching and investigating, I still made sure to learn to be happy in the now and adapt to my illness, too!

But (unless reincarnation turns out to be true) you technically have a single life to live... And I don't think I'd have been able to forgive myself if I hadn't used all the resources I had access to. So, as long as I still had ideas and things to explore, I just kept going!

I was blessed that all those efforts paid off, too. I am now 35, have just been diagnosed with Mast Cell Activation Syndrome (MCAS), and the treatments I am currently receiving (Xolair injections) are slowly allowing me to gain some parts of my life back.

It could have turned out completely differently, I know. So I don't want to give you any false hope, either.

And you have to be aware that if you do decide to continue to keep digging, the process can be very long, tiring, at times extremely hard emotionally because it's a cycle of being hopeful that you might have finally found what is wrong with you, only to have those hopes crushed when a doctor tells you "No! Sorry, that's not it!"

And there really is no guarantee that you'll end up with any other answer than ME/CFS at all, either. I was ridiculously lucky in that respect.

I was also privileged to be followed by Dr. Byron Hyde (in Ottawa), who specializes in finding the underlying causes behind the symptoms of patients who are diagnosed with ME/CFS. So having this doctor on my side was a tremendous asset!

There's an explanation of how to become one of his patients on his website should you be interested.

Before seeing him, I had read his book "Missed Diagnoses, Myalgic Encephalomyelitis & Chronic Fatigue Syndrome" and had found it pretty helpful in terms of ruling out a few of the more common potential causes behind my symptoms.

Otherwise, should you suspect that you might have a specific illness, don't be afraid to do some personal research on the subject. Go on discussion forums, talk with patients that have that illness, find information to make sure that the doctor you are going to be seeing is highly familiar with it (for example, don't assume that because MCAS belongs to the field of immunology and allergology, that all immunologists and allergologists are going to be familiar with it and able to diagnose it!).

Don't forget that there are some rare and/or new illnesses and syndromes out there. So even if you don't find anything else, perhaps in 10 years from now you will find yourself meeting the criteria for one of them.

So whatever you choose to do (continuing your research or simply learning to adapt to your current diagnosis), I wish you all the luck in the world!

 

[Nickster]

As someone who was seen by 24 different doctors over the course of 7 years, I'd be in a very, very bad place to tell you to accept your diagnosis without trying to dig further into it.

And, while I am also not the right person to tell you if you are or aren't suffering from clinical depression (only a trained professional could do that), I would still suggest that you ask yourself this question: If you weren't feeling tired or suffering from brain fog, stimuli overload, and all the other symptoms; would you still be interested in pursuing all those activities in your life that you used to love being able to do?

If the answer is yes, then there are some very good chances that your main issue isn't that you are anxious and/or depressed.

Like the psychiatrist that evaluated me in the very beginning of my own disability leave explained to me, it is normal for someone who used to be active and love their life to feel sad, anxious, and depressed when their illness forces them to stop doing the things they love.

You basically are forced to mourn the person you used to be, and the life you used to have. The kind of reactive depression you might be experiencing under those circumstances can be very normal and even healthy.

You worry that things are never going to go back the way it was, that you're only going to get worse, you're not sure if you'll still be able to have a family (if that was one of your goals in life), if the friends and people you love are still going to be a part of your life, etc. So there again, some level of anxiety is easily expected.

HOWEVER, if you start having dark thoughts, and/or if it doesn't seem to get any easier over time, please do not hesitate to go see a psychiatrist so they can properly evaluate you and offer you support and treatment.

Actually, if you feel the need to be evaluated now to really rule out a depressive or anxiety disorder, please do so! Because I did.

The reason why I insisted my family doctor send me to see a psychiatrist was because I was genuinely hoping to be suffering from some form of atypical depression, or even a bipolar disorder. Like a lot of people with a ME/CFS diagnosis, in the beginning I struggled with some periods where I felt like my energy was utterly depleted, and then some days where I was feeling better. So, whenever I was having a "good day", I would instinctively try to catch up with everything I'd been unable to do while exhausted, giving me the illusion of being hyperactive / slightly manic on those days... And then, I would "crash" again, giving me the impression that I was then experiencing some kind of atypical "depression".

But the issue wasn't that my mood was high and then it was low. It was that I was desperate to catch up and stay afloat, used all my energy all at once, and then was left with no juice at all! On "good days" I was happy that I was able to do things and hoping that it would continue. On "bad days" I was disheartened and sad that I wasn't able to do anything again.

Feeling hopeful and then sad were natural emotional responses to what was happening to me.

The psychiatrist saw that, too. He's the one who convinced me that it wasn't a mood disorder and that my family doctor needed to keep looking for other causes behind my symptoms, because none of them struck him as being psychosomatic, either.

It was a huge disappointment since I was genuinely hoping back then to be suffering from some mood disorder given that there are very good and often effective treatments available. I desperately wanted my life back, and had a hard time accepting that I was indeed chronically ill with some severe and disabling physical illness.

And the thing is, you are still very young, even younger than I was (28) when I became disabled.

This is very young for you to just resign yourself to living with a potentially severely disabling condition for the rest of your life if you do not have the feeling that you have done everything humanly possible to solve the mystery of your illness and get better.

At least, this was how I personally felt. I had a good life, great career, was and am still blessed to share it with a man that is my best friend and the love of my life.

So, before I could say "alright, this is it. This is as far as I can go and I'm ready to accept that this is my life now and there are currently no other particular solutions for me to explore..."

Well, I needed to do all of that exploring.

Fact is, I believe that I had it in me to reach that point where I would have had to accept my diagnosis and simply learn to continue to live with it.

I was actually getting there and running out of ideas and other theories.

Over those 7 years I kept searching and investigating, I still made sure to learn to be happy in the now and adapt to my illness, too!

But (unless reincarnation turns out to be true) you technically have a single life to live... And I don't think I'd have been able to forgive myself if I hadn't used all the resources I had access to. So, as long as I still had ideas and things to explore, I just kept going!

I was blessed that all those efforts paid off, too. I am now 35, have just been diagnosed with Mast Cell Activation Syndrome (MCAS), and the treatments I am currently receiving (Xolair injections) are slowly allowing me to gain some parts of my life back.

It could have turned out completely differently, I know. So I don't want to give you any false hope, either.

And you have to be aware that if you do decide to continue to keep digging, the process can be very long, tiring, at times extremely hard emotionally because it's a cycle of being hopeful that you might have finally found what is wrong with you, only to have those hopes crushed when a doctor tells you "No! Sorry, that's not it!"

And there really is no guarantee that you'll end up with any other answer than ME/CFS at all, either. I was ridiculously lucky in that respect.

I was also privileged to be followed by Dr. Byron Hyde (in Ottawa), who specializes in finding the underlying causes behind the symptoms of patients who are diagnosed with ME/CFS. So having this doctor on my side was a tremendous asset!

There's an explanation of how to become one of his patients on his website should you be interested.

Before seeing him, I had read his book "Missed Diagnoses, Myalgic Encephalomyelitis & Chronic Fatigue Syndrome" and had found it pretty helpful in terms of ruling out a few of the more common potential causes behind my symptoms.

Otherwise, should you suspect that you might have a specific illness, don't be afraid to do some personal research on the subject. Go on discussion forums, talk with patients that have that illness, find information to make sure that the doctor you are going to be seeing is highly familiar with it (for example, don't assume that because MCAS belongs to the field of immunology and allergology, that all immunologists and allergologists are going to be familiar with it and able to diagnose it!).

Don't forget that there are some rare and/or new illnesses and syndromes out there. So even if you don't find anything else, perhaps in 10 years from now you will find yourself meeting the criteria for one of them.

So whatever you choose to do (continuing your research or simply learning to adapt to your current diagnosis), I wish you all the luck in the world!

How are you doing today? My son has the same symptoms as you and your story is encouraging!