GP required in Newcastle Australia for CFS/ME

[Lisa2013]

Hi, I'm new to the world of ME/CFS after recently being told by a GP that I may have this.

For the last 4+years I have suffered from a range of cognitive problems, extreme dizziness when standing/looking up, fatigue, muscle and joint pain, double/blurred vision and more recently I started having migraines. They have now progressed to the point where I experience a massive headache daily which becomes a migraine at least twice a week.

To get some relief I've been having tests as I was told it would be a hormone problem (I'm 45) and as nothing came up in the results, the GP felt it was likely I had CFS. I then went to an Immunologist and had a range of tests which showed nothing (according to the Immunologist, although she did say I could be in the early stages of Lupus). I must say the Immunologist was just terrible - totally disinterested in providing any kind of help.

As the migraines are incredibly painful and no one in my family has them I believe they have to be caused by something malfunctioning within the body and I want to get to the bottom of it.

If anyone in the group can assist with a recommendation for a Newcastle GP I will be very grateful. So far I've had 4 recommendations and each GP that I've contacted has closed their books (without even knowing why I wanted to see them). It's becoming very difficult to get to the bottom of it.

Many thanks,
Lisa

 

[Valentijn]

Hi, I'm new to the world of ME/CFS after recently being told by a GP that I may have this.

For the last 4+years I have suffered from a range of cognitive problems, extreme dizziness when standing/looking up, fatigue, muscle and joint pain, double/blurred vision and more recently I started having migraines. They have now progressed to the point where I experience a massive headache daily which becomes a migraine at least twice a week.

I don't have any specific doctor recommendations, but many of your symptoms sound like Orthostatic Intolerance. There are two primary forms known about in ME patients - 1) POTS (postural orthostatic tachycardia syndrome) where heart rate rises 30+ beats per minute when standing, and 2) NMH (neurally mediated hypotension) where blood pressure and/or pulse pressure become too low after you've been upright for too long. A Tilt Table Test is used to diagnose them, though a longer one is usually needed for NMH.

As something that might help in the short term, I have a constant headache which goes away if I take 2-3 grams of fish oil per day. So if you have the same sort of headache I do (presumably inflammatory), fish oil might help. Orthostatic Intolerance can also cause headaches, so laying down more might help.

 

[heapsreal]

I cant recall the exact name but the university at newcastle did alot of cfs/me research back in the 1990s. Maybe worth give them a call as many of those researchers were doctors and possibly practising in gp land. it would be worth a shot?

 

[Lisa2013]

Thanks for your replies. I have been taking between 330-660mg of krill oil daily. Would this be as helpful as the fish oil?

I have also contacted Professor Roberts @ Newcastle University (ME/CFS) & although he could not recommend any GPs, he has offered to send me information regarding tests that would be helpful (info on its way).

 

[heapsreal]

Thanks for your replies. I have been taking between 330-660mg of krill oil daily. Would this be as helpful as the fish oil?

I have also contacted Professor Roberts @ Newcastle University (ME/CFS) & although he could not recommend any GPs, he has offered to send me information regarding tests that would be helpful (info on its way).

Cool. I would be interested to see what tests he recommends.
I dont know alot about krill oil I suppose it depends on the epa and dha content comlared to fish oil.

 

[merylg]

Hi Lisa, just wanted to say welcome to PR forums. I hope you can find a Dr near by who can help you.

 

[Valentijn]

Thanks for your replies. I have been taking between 330-660mg of krill oil daily. Would this be as helpful as the fish oil?

The dose is probably much too small, since it sounds like krill oil isn't much more effective than fish oil, and 2-3 grams of fish oil capsules is pretty typical.

 

[Lisa2013]

Thanks everyone - from tomorrow I'll be taking 2-3 grams of fish oil and it might help make a difference. Still hopeful that someone can suggest a good GP/Doctor in Newcastle as that's my starting point to get to the Specialists worth seeing.