dianne.fraser

Sandyshell

I can't imagine how overwhelming this time is for you - I hope that you are getting the care and support you need.

Re your anaemia - there are different types of anaemia, not all of which are due to insufficient intake or blood loss. For example, the anaemia of chronic disease is usually linked to an underlying medical condition and is generally treated by addressing the underlying illness.

It sounds as though you've got good doctors, and the medical support you need.

I'll keep you in my thoughts and prayers.

With best wishes

Lieze

Thank you for sharing your experience with panic attacks - I'm so sorry this is happening to you. I've been having panic attacks for the past ten years, always connected with my speech (which goes awry when my illness is very active) and always at work (where I'm supposed to appear business-like and competent). I've hyperventilated in meetings, in teleconferences and on the phone. In a business environment, even dealing with doctors and doctor-academics, it seems to be very confronting for people looking on - no-one really knows what to do, and everyone seems to think I'm a lunatic. Its been the most humbling part of my illness, although these days I tend to think that humility is not such a bad thing. I also think that, more than any other experience, my panic attacks have taught me endurance and broken me of the need for approval.

I've tried really hard to stop them - meditation, hypnosis, self-hypnosis, desensitisation (I hyperventilated and cried delivering my first speech at Toastmasters - it seemed very bizarre that I still got a round of applause). I saw a psychologist who helped me work through a program (titled Overcoming Panic) and some of the medication I've tried was supposed to help (it didn't, and I didn't tolerate it). I also faced my fear - I didn't avoid situations that would make me panic (this mean't that I panicked regularly). None of these things either fixed or reduced my panic attacks. The only thing that has helped is overall management of my illness - as long as I'm managing my illness well, as long as most of my symptoms are sleeping and I'm well-rested, there is much less chance that I'll panic.

I now have an agreement at work that I will focus on doing the things I can (critical analysis and writing, mostly).

So I guess, for me, my panic attacks are firmly linked to my illness.

I still work full-time (I've got a desk job), but I'm constantly physically debilitated - I'm fatigued every day, exhausted by Thursday, completely unproductive on Friday, bedridden on Saturday and, on Sunday, I get up to do basic chores (grocery shopping, washing, basic cleaning). I feel as though I'm resting through every weekend so that I'm able to drag myself through another working week.

So far I haven't been able to find a level of physical activity that I tolerate - even gentle yoga aggravated my illness; light weights and stretching with theraband both increased my chest discomfort (which seems to make me feel much more oxygen-starved). Physical inactivity, particularly laying flat, seems to soothe my illness (it eases all of my symptoms, including the pressure in my chest) - any activity seems to aggravate it.

I HAVE found that wearing compression stockings, drinking regularly and adding salt to my diet all help to reduce my fatigue levels and get me through each week. Without my compression stockings I can't walk from my office to the plaza and back at lunch time (about 5 minutes each way) without feeling a lot more debilitated in the couple of hours afterwards.

Not much of a life, I agree, but at this point I'm just trying to keep working so I can continue to support myself - I'm still hopeful that there will be a medical breakthrough that will make life easier for all of us. Meanwhile, I've developed levels of endurance so high that if there was a nuclear holocaust I could probably climb out from underneath the rubble and start a new civilization....

Hi. Infection aggravates my dysautonomia, leaving me with much more severe symptoms. Around 18 months ago I had a succession of infections (chest infection, laryngitis, tooth abscess, sinusitis, conjunctivitis and tonsilitis) - I was extremely sick, but felt much better, and my dysautonomia symptoms eased, each time I took antibiotics. I figured that I felt better because I was addressing the cause of my aggravated symptoms (the infections).

Hi. I had night sweats for around 20 years from my mid-twenties - definitely not menopause. When I didn't get a night sweat I would often wake at night burning hot, even in the middle of winter in an unheated bedroom. My sweats were stopped with a small dose of Ibuprofen at bedtime. Stopping the night sweats mean't I got a much better sleep and my overall illness was more under control. My night sweats stopped almost two years ago, so I don't take the Ibuprofen now. I'm not sure whether this would help anyone else.