Extreme symptoms please help - Chronic Fatigue Message Board

mletters · 03-21-2005, 02:51 AM

Hi,

I have been suffering from a mysterious illness for the last 18 months. Every day I cycle through dizziness in the morning (30 minutes after getting out of bed), waking up at 06am every morning on the ***. Vivid dreams/nightmares every night. Then when I get to work I have the wierdest symptoms.

I am afraid but I don't know what of. I just feel really empty and down inside. Whenever I have to meet someone or walk toward someone, I feel like I am going to pass out. I get what feels like a rush of blood to my head. Then my arms and hands just dont feel right. If I try to drink something I feel as if I would drop it. I shake uncontrolably.

I also notice a horrible pressure sensation behind the top of my nose and forehead. It just doesn't feel right when I look at people I have a horrible dizzy sensation (not vertigo).

My armpits are drenched by the time I have got to work. My hands are sweaty.

Also, my jaw goes stiff and sore. I also have Tinnitus, TMJ, neck pains, insomnia, depression, weak legs with random pains in them every day.

Can anyone please help me? I've tried 18 doctors and all just say all tests are normal. I really feel like I AM GOING CRAZY.

I can't go on for the rest of my life avoiding everyone and living in ISOLATION. Right now I cant see me living beond the end of the year!

peregrine · 03-21-2005, 05:20 AM

For the symptoms you describe I would check out other boards here;such as, the Anxiety board, Neuromuscular Disorder board and the Panic Disorders board.

All the best!

Chris1968 · 03-21-2005, 11:43 AM

Hi Mike,

Im really sorry you are still feeling so bad, was wondering how you were the other day and hoping maybe things were a bit better for you. Im much the same really but with the odd better day. I have just posted to woozy guy about my visit to Dr Peatfield and that he thinks I have partial adrenal failure and possibly thyroid involvement. He was really great and knows his stuff regarding adrenals and thyroid. Have a read and see what he suggested to me regarding meds. Maybe you could contact him with your adrenal results and see what he says.

Im sure things can be better than this for you, and I know getting to the bottom of this is a nightmare, but dont give up please, the answer is out there Im sure,

Take care, if you want any more info just ask me,

Chris x

mletters · 03-22-2005, 11:00 AM

Thanks Chris.... I'll check out the post now!

I'm really confused (more than normal!). I've just come back from the R.V.I in Newcastle where I had a Short Synacythen Test (Normal dose not low!). The Results were 490 (at 09:30), 540 (at 10:00) and 650 (at 10:30). They have said that it is normal and have kicked me off the Endo list with no follow up!

I am really confused as my ASI profile showed low midnight Cortisol/DHEA response (saliva test). My Serium 9am Cortisol was 398n/mol (cut off or concerned point was anything lower than 500n/mol - that's how I got the SST!), but my 24 hour urine Cortisol was normal (638nmol).

I've also started taking Doxyxycline 200mg daily in case of Lyme, but apparently the consensus on this board is that it's not high enough. I've got some wierd symptoms the last couple of days (mouth or toungue feels numb at random times) and also feel more tired than normal (Yyyyyyawn!).... Could this just be s-fx of med (I've also started taking Amytryptiline 10mg nightly for pain/sedative effect).

Perhaps someone on CFS board can answer this question.......

If 2 x Brain MRI's are completely normal (no lesions), Synacythen test (Cortisol response/adrenal reserve) is normal, if I can walk 3-4 miles a day without payback, am still working full time - DOES THIS MEAN I DON'T HAVE ME/CFS?????

Also, the only abnormal tests upto now are Mild Carpal Tunnel, abnormal Caloric test (ENT) - dizzy one side but not the other when using Air and cold temp.

Does this just add up to VESTIBULAR DYSFUNCTION with CNS damage?

I'm running out of Doctors and tests to go for now. Everything else normal! (I certainly don't feel it!)

Oh yes, high anxiety and depression (definately linked to dizziness, pressure behind eyes/nose and uncertainty of illness - what do I have - is it an undiagnosed illness)

Hope someone can answer questions.

Thanks Chris & all.

Mike.
XX

Chris1968 · 03-22-2005, 11:58 AM

Hi Mike

Sorry about the test not throwing any light on things and the endo stuff. From what I have read, endos are generally pretty appalling and the experience I have had has been too. They did the same to me when some blood tests I had done were ok years ago, they dont give a stuff that you are still ill with SOMETHING!

If you are still thinking adrenal problems it would be worth you ringing Dr Peatfield or sending him a copy of your ASI profile. I spoke to him a couple of times before my appointment, he is a really nice man, although I suppose the proof is in the pudding so to speak so I will see if the meds he suggested help me.

I still wonder about the Lyme thing and will fall back on that if this doesnt work. Plus I wonder about inner ear or neck related dizziness too - its a nightmare isnt it? I get very anxious when Im dizzy too, hate going anywhere and being with people, its just too much like hard work.
You are certainly different to me that you can walk 3- 4 miles (I struggle to be stood up or walking for any time at all, get horrendous fatigue) There is something wrong though that is casuing all those symptoms even if it isnt CFS. I read in another of your posts that you are going for a sleep study, you will have to let me know how that goes (hope it sheds some light for you) I guess you are having to pay privately for it?

Take care and keep in touch

Chris x