FND could be ME

[Jessdonna]

I was diagnosed with ME at 32 at 47 i have been diagnosed with FND. I have read ME is a progressive illness with very similar symptoms. Dose anybody feel like me FND is just part of ME ?

[PaulUK]

I agree with you. Neurologists are now diagnosing ME as FND. This is despite the fact that the World Health Organisation has classified ME as a neurological disease since the 1960s, and that hundreds of studies have shown biological deficits in patients with ME. There is still the belief among doctors that CBT and Grade Exercise Therapy ( the supposed treatment for FND) cures it, however this is not the case. The PACE trial, which claimed that CBT and GET cured people with ME grossly exaggerated it's effectiveness and it's methodology had come under heavy criticism from both scientists and patients. Google "trail by error' to read more.

I don't think it's coincidental that one of the senior investigators in the PACE trail is also a proponent of FND as a diagnosis.

[Jessdonna in reply to PaulUK]

When I was first diagnosed with ME i was too sick and bedridden for 3 years to do any pace trial. Mortgage young children no time for help apart from family. I struggled for years got back in work. This time my husband will take me to the pace trial hoping it may help but can't see how.

[Justdrea81]

Yes. I was diagnosed with CFS in 2012 by my GP. When all these symptoms started again, I was told it was FND. But a rheumatologist diagnosed me with Fibro. I think it could all be the same thing. I had started LDN in January and it has helped immensely

[Jessdonna in reply to Justdrea81]

What is LDM? I would try anything to help with the terrible symptoms.

[Jessdonna in reply to Justdrea81]

Sleeping tablets prescribed to me was a big help for me.

[Justdrea81 in reply to Justdrea81]

It's called Low Dose Naltrexone. Basically the drug was identified in the 80's to help with opiod addiction at 50 mg. It has since been discovered that at very low doses, it helps significantly with inflammation and pain. It also causes your body to produce natural endorphins, which is also though to help with pain.

I couldn't find anyone in my network to prescribe it, but I found a nautrapath out of network that does. It has made such a difference, and given me my life back. Most days I feel almost normal. The visits out of network were expensive ($325 for first visit, $125 for follow ups). I don't care. This has been the ONLY thing that has worked. Prior to ldn, I was in pain 24x7 and needed 12 hours a day of sleep, plus a coma day on the weekend where I slept for 18-20 hours in one day. Now I sleep 6 1/2 hours (like I used to) and I feel completely functional! It's amazing

[PaulUK]

The International Consensus Criteria for M.E can be downloaded for free from here. researchgate.net/publicatio...

These are the most up-to-date diagnostic guidelines. They were written by some of the world's top ME doctors.

[Jessdonna]

In a way i feel lucky to have ME diagnose if i just had fnd i would not be given as much support this needs to change.

[Jessdonna]

Im sorry im so mad. ME was never fully expained to me at the time no internet.after a high temperature and water infection before last Christmas all symptoms plus what i thought where new symptoms. I was tested for ms then diagnosed with me plus fnd. Tried to find help with fnd none. ME was always what was wrong i found out when i looked into ME. Got help lines i can call very good support but only because of my Me. I tried to find help for fnd nothing. This as got to change