Sense of doom and heart stopping - what should I do?
 

I've just had a week in bed with flu and last night, after a weekend of breathing trouble and productive cough - my husband took me to see my GP as an emergency patient yesterday late afternoon. She decided that I have a chest infection and put me on antibiotics as I have underlying health issues and am over 50 so she thinks I'm unable to fight this off as other younger, healthier people might. She said the pain in my neck and jaw appear to be TMJ (knew this already) and a pulled muscle in my neck from so much coughing so I'm on high dose of codeine now too.

I have fainted a couple of times over the past week and on Friday I phoned from the floor where I was lying and they sent up a GP straight away because I was completely polaxed. He checked my BP and pulse (very fast) and chest and said that he thought it must all be the virus and the fact that I'm not eating anything much. But I am trying and get a yoghourt or two and manuka honey and the odd banana down. My jaw has been a problem for a while with TMJ so this isn't helping but I'm drinking masses so I don't think I'm malnourished as he suggested.

The woman GP last night asked me how all the burning peripheries were and I said (have lost my voice completely so I whispered) that the pain has all but gone but that my soles and calves feel numb. She looked nonplussed and said I should feel free to contact the surgery today or tomorrow if I need to.

So what I'm really worrying about is this - I'm so spaced out now and when I go to sleep I feel I'm falling into a deep hole and my heart seems to stop. I wake up completely trembling with this awful sense of doom. Somehow or other this seems to relate to my bladder and to my numb legs. Can anyone make any sense of this for me or am I just going mad as my husband seems to think? My mouth and tongue are tingling today and my lips and cheek feel numb and I keep feeling I'm going to stop breathing but I don't think it's phlegm as most of this seems to have cleared now.

My husband has the same flu as I had last week and is too ill to be able to cope with me just now - says I'm just having panic attacks and need to rest. He may be ill but he's eating fine and his world isn't spinning and he hasn't lost sensation in his legs or face as I have.

Could the flu have brought on something more challenging perhaps? Is this what is meant by autonomic disfunction with me and if so what do I do about it? I have no voice now so can't even explain it to my GP or my husband and they are just going to blame anxiety. I see my rheumatologist on Thursday for the first time in 9 months and have a skin biopsy tomorrow so I have got a bit to be anxious about. Also the pain in my neck muscle means it's impossible to get comfortable now so this could be contributing. How do I know what is a medical emergency and what is just post flu misery? I just feel completely out of whack.

I am worried for you.

Guillain barre syndrome can come
To those with viral infections. Please
Demand testing for this. My friend had
This years ago in the spring following
A flu. Numbness moving up the legs and
Involving breathing are typical progression
Symptoms. Nudge your doctors again.

Mrs D - thanks so much. Heres my nudge!

Dear (GP) - emailing because I have no voice at all now and anyway (my son) just texted to tell me the surgery phones are not working today.

You asked me what I thought might be wrong last night. But I couldn't think - just knew something didn't feel right at all. Everyone tells me this is just flu so I suppose it must be. Last had flu over four years ago and didn't have all this bother but then my RA symptoms first started 3 weeks later.

But somewhere in back of my mind my present symptoms have been nagging at me so when I was up in the night with cough (antibiotics now underway with increase of codeine!) I checked out neuro symptoms and found it again.

I know I should have told you but instead could only think randomly of my childhood experience of whooping cough. Blame post Flu fog!

The not breathing thing which has me waking every few hours now in trembling panic (feels like I'm falling off a cliff and my heart seems to stop) - plus the numbness in my legs and pelvic floor (lack of sensation when I wee) and today around my mouth and face - could they possibly be Guillain barre syndrome?

I genuinely wasn't thinking of this when you asked but had read up months ago re the lumbar puncture so I guess it was in my mind somewhere. There now I've said it.

Probably just boring post flu with the chest infection, Temporomandibular thingy and laryngitis and pulled neck muscle.

But the numbness in my feet and legs and feeling that my heart is stopping when I sleep makes me think it's worth mentioning just in case it's relevant. Obviously really hoping not!
Warm regards,
(Mat)

Please let us know how you're doing.

I will thanks. I think they are going to say it's all in my head - stress - post viral fatigue etc. Don't you sometimes wish that the whole neuropathy thing would show up in purple and green colour coded spots?! At least when my RA was diagnosed it was clearly visible in hot boggy swollen joints. Where does this stuff hang out I wonder? One GP did reply with this. "GBS is an acute post infective predominantly motor neuropathy, I suppose it could occur in someone with pre-existing neuropathy of other causes but I think it would be pretty unlikely.".

GB is an autoimmune process... and some people can have a slower variant of it.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3152164/

Because it is uncommon, many physicians never see it and miss the diagnosis until the patient is in big trouble breathing.
My friend had plasmapheresis because IVIG was not available back then. She was hospitalized for 2-3 weeks and had PT for 3 months. She had just finished chemo and surgery for breast cancer, and about 2 months while recovering got a virus. She was in her early 40's then. I watched with horror as she became weaker and weaker and I called her husband who was in Wash.DC and he rushed home and took over-- deciding to put her in the hospital.

If they don't put you in the hospital, I'd try to elevate your head/chest off the bed so you can breathe more easily.

Thanks Mrs D - I have had my head elevated for over a week now to calm the coughing down but unfortunately this seems to have given me a really painful neck - muscle thing now so am back on the flat. I showed my husband a GBS info page just in case I really do stop functioning or breathing. He agreed that it does sound very similar to my symptoms but also that I'm only a week over flu now where it says 3 weeks and that my symptoms aren't really getting worse - I'm not paralysed - just not getting any better yet either. Can only give them the info really. Also GP did diagnose a chest infection so could just be this making me breathe very rapidly. I can slow my breathing down when I'm awake and focused - it's just when I'm sleeping I can't if that makes sense? Very dizzy too but again they will say this is lack of food. My appetite returned briefly today and I managed a poached egg and tiny slices of toast with enjoyment. Unfortunately the intense nausea has come back now though.

MAT52, You need to do some meditation, guided imagery, and/or breathing exercises to help with this stress. Stress is horrible for your body. Search youtube for "body scan meditation." Here
Ron

Thanks but I get plenty of meditative time and usually practice yoga. I can't just now because I have too much infection in my lungs.

Just to update people who helped me earlier this week. I saw my rheumatologist yesterday and he surprised me by conceding I have a multisystem autoimmune disease rather than simply non erosive RA as he said previously. I'm going to start a new immune suppressant drug as soon as my chest infection clears up. Saw GP again this morning who has added in a second antibiotic because he can still hear loud crackling on the corner of my lung. He feels that the small fiber neuropathy is most probably a part of my dodgy immune system. The drug I am to try next is Imuran / Azathioprine. The GP says he won't let me take it until I'm 100% better. Had a chest X-ray done afterwards but not heard anything about it yet. Mat