Any experience with ME/CFS?

What country are you in? A referral and diagnosis of long covid may be more helpful to you.

There were two routes in my area, one now closed.
I was diagnosed with fibromyalgia at the hospital pain clinic (now closed to save money) and then with CFS by my neurologist. I was referred to him because of loss of sensation in my arms and feet - turned out I had non-diabetic peripheral neuropathy but he also wrote to my GP to state I needed treatment for migraine and included CFS as another diagnosis.
A better GP could have diagnosed several of these!
Treatment was pregabalin, which the NHS is now withdrawing, and a trial of a TENS machine.
Since then I've been prescribed amitriptyline and duloxetine plus continuous paracetamol. I already had an inhaler as I have asthma.
None of this helps with my fatigue. I just learned to try to pace myself, and when I don't I book in 'bed days' in after trips out.
I had covid just 3 weeks ago and was still positive after 13 days - since then I've barely been out of bed but I'm expecting to get back to my usual, limited, activity levels.

I was listening to an interview with this Doctor the other day. She has some interesting thoughts on cfs/me and long covid and food and much more.
You may like to check her out
There's probably other podcasts and talks too

Rabdos said:

Hello

After COVID, it's been now more than 6 months that dyspnea, fatigue etc are still present with no improvement.

I was hoping that dyspnea could exclude ME/CFS but I read that 50% of ME/CFS have severe dyspnea with other concurrent symptoms that I have too.

So, I think I will need to get diagnosed with ME/CFS as soon as possible.

Do you know what is the process? I do not think my GP even know what that is, he never mentioned it and from other discussions he probably doesn't know it.

How can I get diagnosis?
What help is available?
Will it even improve or go away?

It really looks like a life sentence of almost constant unbearable pain and fatigue. If this will be the case from now on, it will be a huge disability that puts in risk all life aspects, work, family, health, etc.

Thanks!

Click to expand...

I would suggest that your breathlessness should be investigated, as breathlessness can cause crushing fatigue and other symptoms. Have you had a chest CT recently?

Rabdos said:

Hello

After COVID, it's been now more than 6 months that dyspnea, fatigue etc are still present with no improvement.

I was hoping that dyspnea could exclude ME/CFS but I read that 50% of ME/CFS have severe dyspnea with other concurrent symptoms that I have too.

So, I think I will need to get diagnosed with ME/CFS as soon as possible.

Do you know what is the process? I do not think my GP even know what that is, he never mentioned it and from other discussions he probably doesn't know it.

How can I get diagnosis?
What help is available?
Will it even improve or go away?

It really looks like a life sentence of almost constant unbearable pain and fatigue. If this will be the case from now on, it will be a huge disability that puts in risk all life aspects, work, family, health, etc.

Thanks!

Click to expand...

I was diagnosed with ME/CSFS in 2014 after 10 years. There is no diagnostic test; it's a process of elimination and ruling out other possible causes. For me, they did test for Epstein Barr Virus (it will show up in my blood for life, they can't see when you had the virus though i.e 5 years, 10 years etc) as there's some evidence of a link between that and developing ME/CSFS. They only did that in 2014 after they'd diagnosed me though. Not everyone who gets the virus will develop ME and it can't be used to diagnose ME by itself.

Some people find it can improve, some find it gets worse, there can be peaks and troughs, everyone is different. At present, there is no cure, only management techniques. I manage mine with pacing but stress and over activity can cause it to get worse.

I won't sugar coat it, I can't do things that I used to be able to do. I have to choose where I spend my energy and plan how I'll recover from it. It can take me weeks to recover from an evening out with friends. However, I can still work but I use my weekends as recovery time. I'm luckier than some; some people with M.E are bed bound and can't work, so I realise I'm fortunate in some respects.

You'll need to speak to your GP about M.E/CSFS. Your doctor may not diagnose you quickly with M.E/CSFS as you'll need to have a number of tests to rule out other causes. However, they may diagnose you with Long Covid as you've had Covid, I'm not sure if they rule out other things before giving that diagnosis.

I'd recommend the M.E Association, they have lots of information and the latest research data.

Just to add, the Spoon Theory is a good way to describe it to people as many think people with ME/CSFS are just "tired".

ThoseRainyDays said:

Just to add, the Spoon Theory is a good way to describe it to people as many think people with ME/CSFS are just "tired".

Click to expand...

The spoon theory literal makes a difference between existing and functioning for me. My ME/CFS comes and goes now, after 20 years of it.