Breathing difficulties, am I just crazy?? Also anyone from Australia?

Hi Im new here, Im 21 and from Australia, Ive been battling many symptoms the last year including widespread body pain, severe joint pain, exhaustion and fatigue, numbness and tingling, dizzyness, light headedness, chest and rib pain, severe migraines, unable to sleep, anxiety, difficulty concentrating or putting sentences together, memory loss, muscle stiffness and weakness, heart palpitations and the most recent and more terrifying symptom of having difficulty breathing.

Each month my symptoms get worse and worse and the last few weeks I feel like they have doubled or even tripled in strength. I now have major breathing difficulties while trying to sleep, in the moment just before you fall asleep when your kind of half asleep and half awake, as soon as I fall into that moment my throat feels like it closes up and I cant breathe and I shoot upright and start gasping for air, It is absolutely terrifying and last night I started getting deep flashes of pain across my throat when it happens like as if someone has cut my throat. It is absolutely my most terrifying symptom so far and the breathing difficulties are getting worse and worse every single night, Im now at the point where I am too scared to go to sleep :( I was just curious if anybody else has been in this same kind of situation before? Im starting to think I should check myself into a mental ward, I certainly feel like I would belong! My doctor as usual just shrugs it off and says he cant do anything for me or give me any medications until I am diagnosed (he believes I have fibro and am in the process of starting testing to rule everything else out).

So my life is pretty much hell now it seems, I can no longer drive, I never ever leave the house unless it is to go to the doctor, I have lost all my friends, I have lost my career and the great prospects I had with it, I am confined to my couch and that is where I have to stay, I can no longer read anymore as I just cant seem to comprehend words anymore (which is sad because I absolutely love reading) I have had to give up alot of the things I love and it seems Im as useful as a sack of potatoes (actually I think they are more useful, at least you can eat them and they wouldnt take up as much space!). The pain is too severe and the fatigue so terrible that I just absolutely cannot do anything no matter how hard I try!

My specialist appointment is in 6 months time (earliest I could get in) but I know I cant wait that long, im really afraid of what I am going to be like in 6 months time If I am already progressing this badly at such a rapid rate. I used to be very active, spend most my time working hard and being outdoors, I used to be very happy and bubbly and always had a smile on my face, I used to love life and I miss the old me :( Im sick of being cooped up, I just want to get outside and start living life again!!!

I was also wondering If anyone from Australia would recommend a good doctor that understands fibro in NSW?

Hi JustElle and almost medfree

I know that breathing difficulties can be a symptom of fibro,
but I think if you are having any issues of shortness of breath you should get it checked out...just to be on the safe side.

Wishing you both, the best!

Hugs, Robin

I was diagnosed with asthma years ago. The inhalers never helped me, they only made me feel jittery.

So I try to help myself as much as I can without the use of meds and by staying away from things that aggravate my breathing.

One thing I was told my a physician years ago was to stay away from dairy products because they produce extra phelgm. I went off of dairy products when he suggested I do so, and sure enough it helped. I had an ice cream cone months later and my difficulty in breathing became worse a short time later.

I also have to stay away from environments that aggravate my asthma. I probably have what's called allergic asthma. I can't be around cigarette smoke, pets, mold, or a lot of dust.

Yesterday I had a busy day. My fiance drove me to my rheumatologist appointment a hour from here. My body tightened up after the car ride and the sitting at the dr's office. My fibro tightness worsened causing my breathing to become more difficult.

One thing I noticed is when I'm in a flare my mind races more. It's even more difficult to focus on one thing.

Thank you everyone for the feedback and advice :) Its nice to talk to people who actually know what its like to be this way, I actually teared up a bit to be honest lol I got the impression that my strange breathing difficulties at night have concerned some of you and it certainly worries me every day but when I would speak to a family member about it they didnt seem as concerned and that is probably because they havent had to deal with it but I think after reading some of the worry in these messages I will be booking another appointment to see my doctor and discuss it with him, 6 months is wayyyyyy too long to wait.

Deepwell, your message was very interesting and thank you for taking the time to type all that out for me. To be honest with you hypothroidism does actually run in my family and when I was younger my mum was sure I had it as she recognised some of the symptoms so she would take me to the doctor about it every now and again. Mind you I dont know how they diagnose hypothroidism but they only ever sent me for blood tests for it and everything always came back normal so it was left at that. As for the adrenal fatigue I did a little research and it does sound a lot like me. One thing that confuses me is that a fair few of my symptoms I have had all my life so I have always thought it was normal, only in the past year after developing worse symptoms and doing so much research have I realised that it actually isnt, so I kind of find it hard to distinguish between what is normal and what is actually a problem nowadays.

Im certainly not saying that I do have fibro, if anyone asks what is wrong with me I just tell them the doctor doesnt know, but this forum has been very helpful for me (ive been sneaking around here in the shadows every day for a few months, so I thought I should probably become a member lol) and nevertheless if my diagnosis does come back as something completely unrelated, most of the topics on here I can relate to and have given me a lot of insight as to what could possibly be wrong with me.

One more thing I am concerned about, I have read on numerous occasions that fibro isnt progressive? Is that true? Or is it just progressing for me because I am not being treated? (assuming I may have it considering its the only theory my doctor can give me) because that has really made me start thinking that maybe I have something different, Im always getting new symptoms and as I said earlier my symptoms seem to progress every month. I made the realisation last night that why my latest progression has been so bad is probably because of stress and depression, it started around the time my partner told me he doesnt want children after all (after a full year of planning everything, being excited about it and him supporting the idea) so that has definately devastated me. And im not mentioning this because I want sympathy lol I guess I just found it interesting that such heart breaking news has had such an extraordinary effect on me physically and I now understand what a lot of people on here mean when they say stressful situations make their symptoms a lot worse.

Anyway thanks again for taking the time to reply to my message even though I may not even have fibro, feels good to have people that understand me lol as im sure all of you know its difficult trying to talk to friends and family about it when they have no clue.


Elle

your info is very interesting to read, thank you. I am on no medication at all, nothing works for me, not even morphine so I gave up trying to find any relief :( Its actually very frustrating because something might work once and then when I would go back to it, it wouldnt work, so i would double or sometimes triple the dose and still nothing, its rare for any kind of medicine to work on me, even for just a simple headache ill take a huge amount of painkillers and i wont feel any different, its very very strange, I can probably count on one hand how many times in my life medicine has worked. That is one of my weird 'symptoms' that I used to think was normal, I always used to think everyone else was crazy, rushing to get a pill whenever they had a headache and id be sitting there thinking 'but they dont do anything?????'......... To be honest I still am not entirely sure if that 'symptom' is actually just normal or not, as I said its hard for me to distinguish when its all Ive ever known......

*sigh* I really wish it was easy to find a good doctor that actually listened lol oh well im keeping my head high and my spirit strong :) hopefully I can get in quicker to a specialist and get diagnosed with something soon. Next time I can get into my doctor (hopefully this week) Ill definately mention the hypothyroidism to him and a few other things from here and see what he says.

Elle

haha thanks deepwell :) your information has been a great help for me in trying to figure all this stuff out, I really appreciate it, ill be discussing a few things with my doctor when I see him next.

I read the article and I found it VERY interesting, I wonder if I have any defects? It would be quite interesting to know. Im going to show the article to my doctor and see what he thinks about it, it certainly explains a whole lot. Hes on holiday at the moment so I have to wait a bit until I can see him (lucky guy he seems to be away more on holidays than at work!) I also have noticed that when the breathing gets too bad if I kind of half sit up and half lie down in bed it tends to get better so that has been my short term fix for the moment, only problem with that is the fact that it worsens my pain a lot from being in that position all night. Im definately going to go have a look at that pillow you mentioned though, it sounds like it might be just what I need!

To be honest I started typing my reply 2 days ago, but half way through I started feeling strange, was having another 'bad breathing' episode which I thought was a little off because it only seems to happen at night up to this point. I was also losing the feeling in my legs for a few seconds at a time, was happening maybe once a minute and it was very difficult to walk. I eventually made it to my phone and called my partner, because I will admit I was quite scared. He wanted me to call an ambulance but I decided just to call my mum to come get me so I wouldnt be on my own if something happened (as I knew as usual by the time the ambulance arrived or by the time I had gotten to the hospital id most likely be back to normal, so decided not to bother going). My breathing got back to normal after about half an hour and my legs kept losing feeling all day, just not as often. Yesterday the loss of feeling happened a handful of times, this morning so far I seem ok though (fingers crossed). The night before all of this happened though I noticed when I would stop breathing my body seemed to go numb and I wouldnt be able to move for a bit. Its hard to explain the feeling though as by the time it comes and I realise my body is feeling strange it goes again and im back to 'normal'.

This past month has been tough on me, seems each week Im getting new symptoms, makes this all a lot more confusing and harder to grasp. I think it is just stress though, thats my theory, it has never progressed so rapidly before.

Thank you yogaismysanity for your input, I did a little research on Pernicious Anemia and most the symptoms are certainly familiar to me lol Im going to do some more research on this and find out more about it, thanks again :) all help and advice is certainly very much appreciated. All you guys seem to know way more about this stuff then my doctor lol hes never mentioned anything to me besides the fact that he cant do anything about it and it could be fibro. Anyway Im very glad I came across this website, has also motivated me to try and start doing more about it myself rather then relying on my doctor.

Elle

Hi :)
both my sister and mother have Fibro, my brother has Chronic fatigue, I have Schueremans disease. yep, were a happening bunch ! and we are all from Australia
people who dont have any of these illnesses do not understand what its like to be sore, to ache, get hot, feel down, breathless etc.. only we know what it is like, but you're definatley not crazy !
xx

Hi JustElle

I am in SA, but was in Sydney 10 years ago. While in Sydney, I was being treated for muscular pain by a myofacial specialist. He's got a clinic with a few muscular skeletal doctors. The place is in St Leonards, his name is Dr Philip Lim. He's into prolo theraphy which I do find somewhat helpful.

Look up Linea One Health Centre. Here's the number for the place if it's still there... 02 9438 5088.

My muscle do cramp up bad, but with stretching and wet needling, it helps reducing the tightness. Haven't found the magic pill for muscle cramps yet... I do wish they exist. :)

Thanks Smurfy I actually feel pretty alright today, as good as it gets anyway, which is a relief, have been able to use my extra energy to catch up on a few things around the house........ I really hate housework these days lol and unfortunately being a clean freak and being obsessed with everything being organised and perfectly straight doesn't help!!

I hear what your saying ruby, I still haven't tried to explain to my family and friends what its like to deal with this but I think they are starting to understand a bit, they have realised I cant always go out with them anymore and theres just a lot of specific things in general that I cant do. My boyfriend has been great though he's really starting to understand what it is like and helps me out a lot, he suffers from bad back and hip pain so he kind of knows a little bit of what im going through when it comes to the pain. I hope you and your family are dealing with it all ok!!

Thanks Azumi! The paramedics actually told me once a month back when they had to come out that I should come back with them to the hospital and maybe the doctors would be able to figure out what was wrong with me. I was very tempted to! But I couldn't bring myself to do it lol I know I should but I dont like the thought of probably having to spend a few days or more in there, my anxiety starts up just thinking about it! lol but If things keep getting worse though I might just have to suck it up, bite the bullet and go in. My doctor is sending me to a neurologist, I wanted him to give me a referral to a rheumatologist as well but he wants to concentrate on one thing at a time. But next time I go in ill be asking to go somewhere else definately, an appointment in 6 months time is of no use to me, I know i'll be going to the hospital before then!

Fibrosux, the Linea One Health Centre actually sounds very familiar to me, I think I have heard of it from somewhere before, I'll never have any hope of remembering though lol. But thank you I will have a look into it.


Thanks to everyone for all the support!! Its great to be speaking to people that understand me! lol

Take care!
Elle

Ive been doing some research for natural supplements since normal medications dont seem to work for me and the doc wont give me anything until im diagnosed. Anyway yesterday I went and bought Vitamin D3 and 5-HTP......

Ok firstly the Vitamin D3 did NOT do what I expected! lol, I took 1000ui on my way home which was a terrible mistake, within 10 minutes I was extremely fatigued and very groggy, I couldnt comprehend anything my boyfriend was talking to me about and I was falling asleep in the passenger seat of the car, I could not keep my eyes open. Once we got home i went and collapsed in bed and stayed there for a few hours. Considering I was having a great morning fatigue wise I suspect it was the Vitamin D3.

Anyway later in the arvo once I had enough energy to drag myself out of bed I decided to take 100mg of 5-HTP and see how that would go. It woke me up very well, I felt a lot more alert than usual and my anxiety and breathing problems seemed a lot better for the rest of the night. I didnt notice any change in my mood or pain though. But if anything I had the GREATEST sleep!!!! I fell asleep pretty quickly and stayed asleep all night!! And this morning when I woke up was absolutely wonderful, I felt so alert and rested, It has been years since I have slept so well and woken up so alert!!

At the moment it is 10am over here and I have felt so energised all morning (I took another 100mg before breakfast a few hours ago). So I have decided I'm going to play around with my dosages of 5-HTP and see If it is something that will eventually help me out with some of my other symptoms too. As for the Vitamin D3 im not too sure wether to keep taking it or not, my boyfriend mentioned I should take at night time before bed if it is going to make me so drowsy, so I think I will take some 5-HTP this afternoon and some vitamin D3 before bed tonight and see how it goes! :)


Elle