at breaking point with worry

I Googled ESR test results. From what I read, an elevated ESR without specific symptoms doesn't give enough medical information to make a decision. For instance, I had a high blood marker for lupus, but that wasn't enough for a diagnosis. So my doctor did a more involved blood test and found that, no, I don't have lupus. If you feel you've been misdiagnosed, your might want to see an ME/CFS specialist. If you're in the UK, this may mean paying out of your own pocket to see a private physician. I think you need further information to relieve your stress. But here's the thing. I assume you've had complete bloodwork to rule out other illnesses. This is the first thing any good doctor will do. And if that's been done, and you think you have ME/CFS, there's really no treatment. So it's not like you're missing out on a cure if you get an ME/CFS diagnosis. You basically need to take it real easy and not push yourself, sleep as best you can, eat healthfully with no sugar or caffeine, and do everything you can to de-stress, because stress is your enemy. Listen to music, practice meditation or deep breathing, whatever it takes to calm down.

There are many things about our bodies which can't be explained and maybe slightly off normal but you make them far worse if you constantly worry about it. So STOP WORRYING

As said by a previous poster if you have a major problem the basic tests usually pick it up immediately. Your life probably never will be the same again, those of us with CFS realise that. To be honest I don't want a CFS diagnosis because there is no magic cure, I would prefer something else.

I would stop worrying and get on with life and then it will distract your brain from the pain you are suffering

Hey, don't worry.  I have high ESR, C-Reactive Protein, etc.  However, the docs say that it isn't indicitive of anything.  My body is constantly under attack because every bacteria and virus thinks I'm a playground for their enjoyment.  This causes high ESR and CRP.  If you got CFS from something like mono, then you might always have a high ESR.  What you need to do is find a doctor that has some information about ME/CFS, or a doctor who is willing to learn.  Then he or she can rule out anything scary if it still bothers you.  However, if your doctor has run the basic blood checks and found nothing wrong, then welcome, this is your life on ME/CFS.  You will be tired, and sick, and achy, etc.  Maybe for the rest of your life.  But you aren't dying (just feeling like it).  Anxiety will make your symptoms worse.  So if you are scared, get a doctor to run all the basics to make sure you don't have cancer or diebetes, your thyroid is okay, etc.  If these come back fine, then you can chill out.  You are chronically ill (completly horrible and we can all releate), but you will survive and learn how to cope.  It will be okay.

Thank you so much for your replies! It is so hard not to worry but I am coming to terms with things. Hope you are all having a pain free day x

Hi,

If your ESR is high your gp should be referring you to a Rheumatologist to check out other possible conditions. You can have Lupus without the rashing (there are different types) and can be indicative of cfs/me symptoms. At least should be rules out.

If your gp is quetioning cfs/me (he should be considering these things) then he is expected to referral you to your nearest specialist clinic (if a good gp). The clinic will confirm or not cfs/me. There is no cure but may be able to help you with coping mechanisms, like pacing. Be warned I had a wait of a year!

There are many debates on cfs/me v fibromyalgia. A professor in Rheumatology told me fm is the pain side of cfs/me ...but who knows. He confirmed my diagnosis of both but like you the fatigue is worse for me, with poormonility.

It's tough to know how far testing goes and continues as can be so stressful. That said, think of your dr as a highly trained medical referrer, see the right specialists via him/her.

As previously said, acceptance and de stressing is of major importance.

xx