• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Newbie needing help

SOC

Senior Member
Messages
7,849
Quite simply I don't experience PEM, unless as a primary result of my OI being exacerbated. I hope this means I won't be treated like an outcast within the forum?! :eek::)
Gosh, no! We're all suffering together. Now if you start telling people they ought to exercise because it worked to improve your CFS, so it should work for everyone else, you'll start seeing some serious pushback. ;) You seem much too sensible a person to even consider doing such a thing, so you'll feel very welcome here.

Im going to see a cardiologist in about 6 weeks to look at my orthostatic intolerance and how it can be managed.

Good luck with that! Try to make sure you get a tilt table test. Some docs like to brush us off once we have a CFS diagnosis of any kind and refuse to do the obvious tests.

FYI I have been tested for rheumatoid arthritis and Lyme disease. What other tests should I try and get on the NHS?

Best wishes
Jamie

Hopefully some of our UK members will chip in with advice on testing within the NHS. :)
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Thanks Mesci, I know my fair share about gut issues but would greatly appreciate if you could point me in the direction of someone (if there is anyone) whose had experience or knows how to treat gut issues whilst having OI, which is very destructive from my experience when trying to heal the gut.

Thanks also for the info sheet, I shall print it out and use it when in my foggiest of moments! I will also have a look around Dr Myhill's site, but again my parents don't have the intellect to think for themselves even if it is factual information. They have to hear it come from the kind of "conventional" Dr who suggests taking an antidepressant and "pacing yourself" will slowly alleviate you of your ME/CFS symptoms. Sad but this is my reality.

Thanks for the advice about supplements, I have enough supplements to start my own health food shop!

May I ask how your doing?

Best wishes
Jamie

As I don't have OI I am not the person to ask about diets for it, but I have a friend who says that a palaeo diet is helping her. However, she is on quite a lot of meds too. Her symptoms sound very like yours, and she says that her OI/POTS is much worse than her ME. I'm sure there are people here who will be able to advise, and quite likely already some threads relating to OI and diet.

I know all too well about sceptical but ignorant parents, and friends, and doctors....etc. That said, pacing is vital (for ME anyway - don't know about OI). It's not a cure but an essential management tool.

I'm not too bad, thanks. I get worse when I overexert, which is often unavoidable. I've been ill since 1995 and have had worsenings (pretty bad at times) and improvements. A lot of things have improved since the change of diet plus supplements, and if I could only afford to rest more I might make faster progress.
 

caledonia

Senior Member
Take a look at the 4R Gut Healing Program. The link is in my signature. You have to take herbs or meds to kill off the bad bugs in your gut. Diet alone won't help.

The wired feeling could be due to GABA/glutamate imbalance. GABA is calming, while glutamate is stimulating. The treatment is to take GABA, theanine or other calming supplements while eliminating glutamate from the diet. Synthetic glutamate (MSG) is in most processed foods. So you need to stop eating processed foods, bottled sauces, spice mixtures, etc. Then there are some foods which are naturally high in glutamates - the four biggies are peas, tomatoes, mushrooms and Parmesan cheese.

More info here: http://www.dramyyasko.com/resources/autism-pathways-to-recovery/chapter-4/
The good stuff is about 3/4 of the way down the page.

Co Q 10 works wonders for me for brain fog. 100mg. If it's going to work for you, you should know within a few days.
 

Fogbuster

Senior Member
Messages
269
Can someone please help me with deciding what to do to get started when you are faced with this illness. For instance, what to test for? eg bartonella. I guess it can come across as lazy as it may look like Im asking for everything to be put on a plate, which is not the case. I understand everyone has to do there own journey and research to help themselves but the mental fatigue I experience on a consistent basis 24/7 makes doing anything incredibly overwhelming and unproductive. I have the great intentions but not the mental capacity to pull it off. Please help!

Best wishes
Jamie
 

Fogbuster

Senior Member
Messages
269
When I type my full name into google it comes up with this page and my full name. I don't want friends or family reading this hence why I changed my username.

Can someone help me?

Thanks!
 
Messages
10,157
@wdb

His old user name still shows up in quoted posts -- posts #6, 9, 16, 21, and 22. There were some tags with his old user name but I manually changed them to his new name.

Is it possible for the software to change the user name in quotes (beside the up-arrow) and tags when somebody changes their user name for privacy reasons -- if a person had hundreds of posts, it would be quite a chore to do it manually if they are often quoted and tagged.

Thanks :)