Apart from all the aches &pains burning sensation fog ext. Does anyone just feel ill (strange) dizzy nauseas and just not right?

[nothingwrong]

I don't now how to explain

[Hidden]

That would be me as you say apart from the aches and such I would feel nauseous. Sometimes I feel as if I am trying to catch up with myself as if I am one step behind. Not sure that makes sense but there you have it

[TheAuthor]

Hi nothingwrong

I am so sorry to read that you are not feeling too well at this time! I genuinely hope that you start to feel better soon. There are a lot of viruses going around at the moment so I hope that you have not come down with one?

Please take care of yourself and feel better soon.

All my hopes and dreams for you

Ken x

[nothingwrong in reply to TheAuthor]

Thanks Ken, this is just something that happens now and then especially when I'm to hot I think, though I hope it's not a virus or cold coming as I find anything on top of fybro makes me anxious and overwhelmed as it takes so long now to recover from.

[Shazzzy]

I feel like this frequently, i am not sure what cause it, but i feel suddenly very nauseous and quite out of sorts and cannot eat or swallow medicine, can only lay down and wait for it too pass. I also feel very nauseous when i have migraines, but this happens alone, dont know if connected.?

[Nanuuk]

Tbis is me too since pre teens. Tbe dizzy, nausea achy & generallyl feeling of unwell that is the story of my life.

Sucks

[nanaber]

I often feel like that especially if I haven't been able to sleep enough to get me through the day

[Mdaisy]

Hello Nothingwrong,

Sounds similar to my experiences and I am awaiting a Tilt Table Test next month.

It may be that you are having a form of Dysautonomia, please see information below;

Autonomic Dysfunction (sometimes called Dysautonomia) of some kind is common with Fibro: this simply means that the Autonomic Nervous System (ANS) isn't working properly.1 The ANS keeps various factors in your body at normal levels, including heart rate, blood pressure, perspiration and respiration. Autonomic Dysfunction with Fibro can include not being able to properly regulate your temperature - people with Fibro are often either too hot or too cold - and fainting (Lindsey Middlemiss Founder & Chair of FibroAction 2009)

fibroaction.org/Pages/What-...

I personally am awaiting the above test as they are querying whether I have Postural Orthostatic Tachycardia Syndrome (PoTS), please see link below for explanation which may be of interest;

stars.org.uk/patient-info/c...

I get hot/cold sweats, go very pale, blurred vision,shortness of breath, chest pain, headaches, feel faint/dizzy, nauseated and I feel like my brain is blank/empty (which is the bit I cannot really explain). Does this sound familiar?

I look forward to your reply

Best Wishes

Emma

FibroAction Administrator

[Jjudith]

Yes, I get this even if I don't have pain. Hugs. x

[Mdaisy in reply to Jjudith]

Hello Jjudith,

I think many people experience all sorts of symptoms of Dysautonomia and don't know what it is, sometimes I can also feel my heart pounding in my chest. Let's see what happens next month when I have the Tilt Table Test. I think I may need treatment as it is really impacting on my day to day living!

Emma

FibroAction Admninistrator

[Jjudith in reply to Mdaisy]

Reply

[Jjudith in reply to Mdaisy]

Hi Emma, I have thought for some years that I have signs of dysauthonomia and particularly since I heard the first lecture by Andrew Holman in 2012. I had the bendy MRI scan of my neck and it showed I have PC3 a co-morbidity with the majority of people with fibro according to the research of Dr.Holman, and according to him the massaging of the cervical spinal cord as you move your head into extension position causes dysautonomia. The tests on people with other chronic pain conditions such as rheumatoid arthritis did NOT show PC3 in the Seattle study. Dr. Holman thinks that ALL fibro IS a form of dysautonomia (not necessarily all due to PC3) and he does the tilt table test on all of his fibro patients as THE diagnostic test. I saw him at the fibro conference this year, he gave 4 lectures - brilliant. They are getting really good results with therapy in Seattle, there is a video, I am so convinced I would like more doctors to investigate this, the problem is that I think fibro diagnostics is so linked to pharmaceutical companies that it is difficult to get a diagnosis with a relatively simple treatment that doesn't involve pharmaceutical companies, they are investing so much money into producing the 'wonder drug' which will make them billions. Maybe I am a sceptic. I have done an Alexander Technique course to improve my posture, I also had a really good neuro-physio when I was in Dubai, and a wonderful yoga teacher here in UK, and I have really improved my symptoms a great deal, but it is frustrating when doctors in UK just dismiss my scans with PC3 as 'degeneration due to old age' or similar. I would go to Seattle for a proper diagnosis and to see his therapist but he is just doing research at the moment and hence not running clinics. Did you go to the fibro conference? Dr. Holman and his therapist Sue were the stars. Love and all the best for the tilt table test - if it is positive can you get them to do some bendy MRI scans if you download the literature on PC3 -

[Iampain]

Hi, I get thiss too and the last time it happened I actually passed out and was carted into hospital by ambulance with a neck brace on. They were only interested in whether I had damaged my neck when I Planked onto the concrete floor of the council office reception area. Interestingly, there had been no chairs in that particular area, but one mysteriously appeared before the ambulance arrived! I had gone through all of what you described before I fell, detachment , nausea, sweating ,heart rate increasing and also when I tried to ask for a seat, I couldnt speak properly, what came out was bllllleeer( thats as close as I can get to my attempt to get help) All i was offered at the doctors after he had seen that my bp does indeed drop on rising, were support stockings which if I can get them on, I cant tolerate because of intense itching, and my legs swell above them, till my thighs appear balloon like! All in all, it was put down to fibro and not persued. I hope your tilt table test is conclusive MDaisy, and you get the proper treatment.

[Mdaisy in reply to Iampain]

Hello Lampain,

I wonder whether any of the advice on the PoTS factsheet will help and it may be helpful to discuss with your GP as this may indeed by your diagnosis for this event too. Or may just be a case of postural drop;

patient.co.uk/doctor/hypote...

I emailed STARS who also have a HU page too and asked about the Specialists in my area. Spoke to my GP who referred me, Consultant decided I needed Tilt TableTest so we'll see!

There are medications they can try, do you still experience this a lot?!

Emma

FibroAction Administrator

[Iampain in reply to Mdaisy]

Hi MDaisy, yes, ever since I was about 18 I have passed out regularly. The rule is sit down before you fall down, but sometimes that's not enough. Lying down, I immediately feel better. Others have taken that as a sign that I'm putting it on in the past

. I've even been thrown out of venues because they thought I was either drunk or on drugs! Over the years I have found that its very bad to go without a drink for too long, and on very warm days carry water or juice. Standing still is the enemy, so I walk up and down to keep the blood pumping. This is becoming more difficult as my mobility worsens. My Doctors have never thought low blood pressure a problem, even citing athletes as examples. I think it may be time to make a fuss..

[Jjudith in reply to Iampain]

I do keep saying the samee thing, I don't know whether you have heard of the work of Dr. Andrew Holman of Seattle on PC3 and fibromyalgia - he gave a lecture in UK in 2012, and he did 4 lectures at the fibro conference this year. I am really convinced he is on to something. Look at my earlier post to Emma. The passing out can be due to pressure on your cervical cord, when you extend your neck, and hence it sounds as if you might have the same comorbidity as I have, and as the majority of fibro patients have. You might feel dizzy if you go to the dentist, have your hair done, have a general anaesthetic which involves the neck being extended during your operation. The good thing is that improving your posture can really improve your quality of life. Hope you have the tilt table test, and according to Dr. Holman, all fibro is a form of dysautonomia, so I guess it will be positive. Love and hugs x

[Jeff1958]

Do you mean no energy and just wanting to sleep ? that's how I felt this week , I just felt very strange , I seem to be over it , my friend says there's a virus doing its rounds .

[mitziblue]

Last week I started feeling really weak, not the normal fatigue but weak and kind of panicky. I'm concerned but like you I have no idea where this is coming from??? Does this describe somewhat how you felt?

[Jjudith]

Correction - the tests with other people with Rheumatoid Arthritis DID NOT show the same PC3.

[rosewine]

Yes I have had exactly the same feeling for the past 3 days and have had this many times before. You just feel so flat and shaky and no nergy whatsoever and it can come on so suddenly. I find I am worse if I get hot or am trying to do too much which is the case now as we have a decorator in and trying to work around him and not having a kitchen as such at the moment is bringing stress levels to boiling. You have to try and eat because often the tablets we taken have to be taken with food but the last thing you want is food and you certainly don;t have the energy to make anything. At least we "fibros" know what you are on about. Hope this passes for you soonxx