OMG !!!! 999

All your fibromyalgia experiences, questions and answers.

Moderators: perseus, *Lisa*, FluppyPuffy

OMG !!!! 999

Postby Tel1 » Sat Mar 01, 2014 11:40 pm

Hi All.... here I go again:)) I just want to know if anyone has had this!!:) :yikes:
There are 2 different alarming things to this which I don't think I have mentioned before.. but whatever the case, this 2 dreadful symptoms might be of help to some of you, and perhaps if you have had this, let me know:)

I have had heart tests to death over the last 3- 4 years, Xrays, MRI scans, wired up to the treadmill, dye put in me to light up
veins.. ECGs you name it... and (thankfully) so all the NHS doctors have said I am alright!! Hmmm! well I hope they are right.
Every evening, not the morning, when I go upstairs I get this pain in my chest, I would say if anyone described it to me, I would
say it was angina... but everything thing I have had says no!! it is horrible, it goes from my chest to my neck and throat.. and then
after about 5 mins it goes...naturally it is very frightening but of course each time it happens, I think to myself oh GOD what IS this??
the last time I had it at night was in November. and I have also had a MEGA panic attack in the morning in December and I really thought it was the end for me, and for the first time in my life I had no choice but to call 999.. they checked me at the house
with heart monitor machines and because my blood pressure was up , another ambulance took me to hospital where they did more blood tests and rigged me up to heart machines, but thank fully they said all was ok... You feel such a fool afterwards, but at the same time what the hell do you do when you are experiencing this? :yikes: :yikes:

Secondly I have woken up lets say 3 times a year with feeling like I have just died :yikes: :yikes: I can only describe it as though I have stopped breathing, I wake up in this panic and fly out of bed and bang on other peoples doors in the house and I feel like as though I have just run a mile, and it's as though I can't breath.... totally dreadful. Long story short, I went to the GP and said that I can't cope with another one, so he sent me to a Thoracic Medicine Dept at the hospital, I had to wear a all night oxygen monitor which did the pulse as well... I had to do this for 2 nights... the next day I went to the hospital, and they put the monitor into the computer which showed I had some dips in oxygen levels which they said was mild obstructive sleep apnoea... I had chest Xrays and I had to blow into
this machine 3 times.... Xrays and that said I was normal......the doctor consultant at the hospital said that he was discharging me and didn't want to see me again.. however I wrote to him saying that although I was grateful for him seeing me etc.... I said what happens if I have another episode? I had a call from his secretary who said they are now sending me to a sleep clinic at another hospital so they can see me....but one thing the consultant did say that a lot of people with Fibromyalgia get sleep apnoea, but the other people I know who have Fibro don't get what I get... so it is rather worrying . frustrating.. I will be very interested to know if any of you have had any of this......Thanks for listening:))) :oops:
UKFM Member
Posts: 119
Joined: Thu Feb 21, 2013 2:06 am

Re: OMG !!!! 999

Postby sparkles87 » Sat Mar 01, 2014 11:56 pm

Hey Hun I have sleep apnea aswell as fibromyalgia it was because of the epworth scoring in the rheumatology appointment that they refered me to a sleep clinic. I stop breathing when I'm asleep on average twice every minute I now wear a cpap machine when I sleep which stops the airway collapsing thus keeping me breathing it does mean I have a more restorative sleep when the insomnia from fibro allows me to sleep lol.

I get lots of recurrent chest pain usually around my lower ribs then into my neck but I am asthmatic aswell so sometimes put this down to a combo of the 3 lol and also over the last year started to get panic attacks

You are not alone and don't feel like a fool for asking drs for help if you feel something is wrong the problem with chest pain is we panic then get panic attacks and make the whole situation a lot worse!!

Hang in there


*~*~*~*~*~*~wishing you all a pain free day*~*~*~*~*~*~

lots of gentle hug spakles
UKFM Newbie
Posts: 8
Joined: Mon Apr 22, 2013 3:45 pm

Re: OMG !!!! 999

Postby painalot » Sat Mar 01, 2014 11:56 pm

Don't you find tho, everyone one is different in some ways, from how we're talked to, to medication, to systems even. I too, feel such a waste of time, it's so depressing. :(
UKFM Newbie
Posts: 2
Joined: Wed Feb 12, 2014 10:23 pm

Re: OMG !!!! 999

Postby libbiek30 » Sun Mar 02, 2014 12:01 am

I get really bad chest pains like stabbing on the left side. I have put it down to anxiety but it is very worrying. :-D
UKFM Member
Posts: 121
Joined: Wed Sep 25, 2013 10:12 pm

Re: OMG !!!! 999

Postby Tel1 » Sun Mar 02, 2014 12:04 am

Yeh I know:))) its ALL so worrying and depressing isn't it:)) Each day I say to myself.. lets just go through a day without something happening!:)) All I want to know is, am I alright or not? naturally I don't want anything to be mega wrong with me, but on the same token, what the hell are all these symptoms.. it's got to be something?? or is it really Fibro doing all this?? that I suppose we will never know. They told me I have mild sleep apnoea, so perhaps I should get a CPAP machine? although I suppose when I go to the next sleep clinic they can tell me if that's needed.... oh god!! it's all so worrying in as much as, I think to myself will I have another night terror tonight?? :yikes: that is always my dread. :crazy:
UKFM Member
Posts: 119
Joined: Thu Feb 21, 2013 2:06 am

Re: OMG !!!! 999

Postby Tel1 » Sun Mar 02, 2014 12:08 am

Forgot to ask Leanne.... have you ever woken up at night in the way I describe? or is it that you stop breathing and don't know? :yikes:
UKFM Member
Posts: 119
Joined: Thu Feb 21, 2013 2:06 am

Re: OMG !!!! 999

Postby reptigirl12 » Sun Mar 02, 2014 12:37 am

hi when im asleep at night i get into a deep sleep but then i jump awake feeling like i cant breath i then go back to sleep and i get that falling feeling and i jump awake this goes on most of the night, i get pain in both my hips and my right knee and i cant stay in one position for too long as i get stiff and it hurts.
UKFM Newbie
Posts: 7
Joined: Mon Feb 10, 2014 10:31 pm
Location: corringham essex

Re: OMG !!!! 999

Postby kp007 » Sun Mar 02, 2014 1:54 am

There is a condition that effects the tissue in between the ribs..I have ME/CFS and fibro also high blood pressure, and I get quite a bit of chest pain
UKFM Member
Posts: 10
Joined: Tue Feb 25, 2014 12:52 am

Re: OMG !!!! 999

Postby Leannellie » Sun Mar 02, 2014 9:39 am

Have they mentioned tietze syndrome/costochondritis to you? I've just been diagnosed with this after being sent to hospital by my GP for chest pains. I thought I was having a heart attack the pain was so bad!!
Comfort in sound it's all around, ease back the strain, come heal your pain.
UKFM Member
Posts: 54
Joined: Tue Sep 17, 2013 12:36 pm

Re: OMG !!!! 999

Postby Tel1 » Sun Mar 02, 2014 4:30 pm

H Leanne

Yes I have heard of that medical term before, but I haven't got that, they tested me for everything like that
at the chest dept at the hospital.... But yes:)) I know what you mean about the chest pains, it does feel like
you are having a heart attack :yikes: the heart doctor told me that I have the pains because of a hiatus Hernia! is the waking up in this kind of panic that is of real worry to me... I have asked a few people if they
get what I get, some say yes, some say no... so it's so difficult to know * exactly * what it is.... but then again
one of the other consultants who saw me in 2012 said it can also be one of the symptoms of Fibro... the trouble is
none of us really know eh:)) In the meantime.... keep well, and lets hope they get a cure for this damn Fibro one day. :-)
UKFM Member
Posts: 119
Joined: Thu Feb 21, 2013 2:06 am

Re: OMG !!!! 999

Postby robbiecramp » Sun Mar 02, 2014 8:24 pm

I was at work new years day and had been having neck pain for a few days and put it down to a pulled muscle and the other pains I have had over last 6 months put down to working long hours but on new years day even work thought I was having a heart attack and rang for a ambulance and after all tests they told me I got muscluskeletel chest pain and referred straight to GP who diagnosed me with fibro on 15th January
I had all blood tests for ME and was assured that it wasn't that and not MS and no RA but now somewhere I read it can take a age to confirm a diagnosis of ME in relation to 6 months sleeping.
My doctor has assured me it is fibro and not MS even without examining me on my spine to see if there is any inflammation as I cant see. I also went to optician and had eye test and the one for MS and she said she could not find any trace to co9nfirm a diagnosis but it wouldn't mean I don't have it (can anyone shed any light on tis as my mum had it and fibro )

any advice will be appreciated
UKFM Member
Posts: 97
Joined: Wed Jan 08, 2014 9:37 pm
Location: chesterfield

Re: OMG !!!! 999

Postby whoami » Mon Mar 03, 2014 12:05 am

Tel1... ..... You are not alone at all. I have sleep apnea and use a CPAP.

What you explain happens to you at night is exactly how I was without the machine. What happens is you stop breathing and of course your brain will not let you suffocate so you gasp hard for air. I have sat up before thinking I was coming back from the dead. At the gasp would wake my hubby.

I also have a problem with not breathing enough when I am awake. It is a type of apnea. I can be doing something when all of a sudden I gasp for air. I had stopped breathing long enough for my brain to say breath and breath now. I have actually been doing things such as typing here or out for a walk and my lips turn blue. Hubby will tap my shoulder and say breath if I haven't already gasped.

Whatever is your diagnosis, work with your Dr. I hope you get an answer soon.

Expect the worst in life you won't be disapointed and you'll be prepared!
UKFM Regular
Posts: 1537
Joined: Wed Jan 23, 2013 9:22 pm
Location: Ontario, Canada

Re: OMG !!!! 999

Postby ladybeck66 » Mon Mar 03, 2014 7:17 pm

Hi all.
Tel1, you are describing all the issues I am suffering. I get that feeling of falling and waking out of breath. I haven't seen a doc because it is just another thing to do with Fibro. I spent 4 weeks in a cardiac unit last year because of the same pain that you described, I also have very high blood pressure. They told me the wall of my heart is thickening, nothing more than that, blood pressure being controlled by drugs. More drugs....I take Tramadol, Gabapentin, Amytriptalyn, Targinact and other drugs for folic acid deficiency, b12 issues, blood pressure and the heart. I used to use morphine patches, I have decieded to come off as much as I can.

I attend a chronic pain clinic locally but have decided that I am going to move to Spain.......I speak Spanish and when I am there I feel so much better. I have no committments here anymore so it's time to go. I have to reduce my medication before I go though because I do not want to have to pay too much.

Anyway, the issues with Fibro, pain in legs, hips, knees and other issues are what we all suffer with, you are not alone because there are many of us who feel the same way, I just with that the powers that be could experience what we deal with, just for one week, then they wouldn't be so quick to dismiss us. Positive Mental Attitude. Love to all xx
UKFM Newbie
Posts: 9
Joined: Mon Mar 03, 2014 3:29 pm

Re: OMG !!!! 999

Postby Tel1 » Tue Mar 04, 2014 11:45 pm

Hi All ...... oh my GOD!! these symptoms are just dreadful aren't they! :yikes:
I use to think to myself after every episode of pains and can't breathe etc as though I was slowly going mad!!:))
I just can not understand as to why we get all the experiences that we have to endure....sometimes, I say to
myself a heart attack would be better than all of this, at least that way one would know *what* it actually is
instead of all these continuing constant different shocks to the system:)) No :-) of course I don't want it to be
a heart attack, but you know what I mean though:) I have often said to the GP and other consultants on different
occasions... *surely* that all this can't be to do with Fibro..?? and they have said oh yes it can be, and people with
Fibro. their brains don't work properly.. :crazy: so I have often said back to them, well in that case, what *else*
am I going to have to endure as so far it has just been a nightmare that never seems to end...I really do think that
what ever it is really does affect how we all live our lives, in other words because of all the terrible things that seem
to present us medically, our brains and self esteem just must be at burn out point... :yikes:
I think that there ought to be more TV programmes on Fibro so that other doctors, the government and departments
like that finally wake up to this dreadful condition that seems to have so many symptoms.. :shock: :-)
UKFM Member
Posts: 119
Joined: Thu Feb 21, 2013 2:06 am

Return to Living with Fibromyalgia

Who is online

Users browsing this forum: No registered users and 8 guests