ME/CFS / NORMAL MRI/ BUT CONFUSING SYMPTOMS

New diagnosis and before diagnosis
1

Hi there,

This has probably been talked about before and I may just be getting desperate. I’m 20y/o female and was left bedbound for about a month in January 2018 and was diagnosed with ME/CFS/ I have since recovered significantly but have flare ups and I was sent to a neurologist but all my MRI, EMG and blood tests came back clear. I may just be really struggling to accept ME as a diagnosis because there is so little known about it/ I feel like the name ‘chronic fatigue’ doesn’t reflect the seriousness of my symptoms/ there is no treatment. It sounds terribly ridiculous, because of course I don’t want to be ill but at least if I had another illness I could try some medications etc instead of just being left. I guess my question is should I just try and accept M.E as a diagnosis even tho I have a lot of symptoms which fit into other things such as MS or do people have any suggestions/ other avenues/ anecdotes which might help. It has been nearly 2 years of being ill now…

My main symptoms are:

Persistent fatigue

Weakness particularly in my legs

Pain especially in my thighs and back

A feeling of tightness in my thighs

Feeling of being weighed down, a heaviness that makes in difficult to move

TIngling like fizzy water in my legs

Sometimes sore eyes

A really dry mouth

Headaches

Cognitive fog

Stiffness to the point where I can’t properly move my hands in the morning

Difficulty getting out of bed

Tinnitus.

Difficult balancing

Near blacking out when standing up

2

Sorry to be really desperate but if people do have any advice i would really appreictae it

3

M.E. IS classed as a neurological disorder and if you checked out the symptoms for M.E. and MS they are virtually the same.

M.E. though the problem is endocrine you cant recover very quickly from exercise etc.

My daughter has M.E. when it hit her she was bed ridden for a year, i know what triggered hers it was a bad bout of pneumonia. also at the time she was having relationship issues. Slowly we got her moving again, and gave her back her interest in horses, and then she slowly got better she probably had every classic symptom of it. she did have tests for MS but clear.

she met her husband and he bought her a foal Spirit, and everyday she got up to tend him, that was about 7 years ago i cant remember exactly and she is now running her own cleaning business. she still has bad days and she now has fibromyalgia on top and had a bad hysterectomy which was botched but still trying to move forward.

ME. is a live changing disease like MS but there is a chance of a good recovery. I would suggest for now you read up about it, join groups for it and get healthy. My daughter dropped weight she is keto and is doing even better.

Your last symptom is classic POTS. look up M.E. its a multi system disease or syndrome as its not really classed as disease, but the WHO have classed it under a neurolgoical disorder. https://www.omf.ngo/symptoms-mecfs/

out of curiosity did you have glandular fever/mono before onset?

4

Hello

I think people are beginning to see ME/CFS as a real, serious diagnosis and one which is, as Crazy Chick said, life changing.

If you’ve had MRI scans and other tests that would show signs of MS, I really think you have to accept that it’s not MS.

I’m sure there are self help things people can do to help their symptoms of ME. Perhaps you need to start looking at alternative ways of managing your condition. The fatigue for example, may well be the same kind of fatigue as in MS. In which case Fatigue | MS Trust might offer you some really helpful advice. Just because you don’t have MS, there’s no reason why some of the symptoms can be shared and therefore the self help management techniques ‘borrowed’!

Equally, you could see your GP and ask for help with the other symptoms you are struggling with, there may be drug therapies that could help, or other specialist services you could tap into.

Best of luck.

Sue

5

Thank you both for your responses. I didn’t have mono weirdly enough but did get a pulmonary embolism so I guess could have been that triggering it. And thanks for the advice r.e management. The ME specialist services essentially consist of CBT and GET which makes most people worse. I’ve begged a lot of doctors to try off label medication but none will give it to me. Many doctors still don’t believe in ME so I guess I am stuck. Can barely hold my phone to write this at the moment so I am not sure I can really self help. I guess I get upset because exercise makes things so much worse yet this is published as the treatment. Thanks everyone for your help tho, sorry I probably sound really moaney right now just having s tough few days.

6

Have you been taking anti inflammatory tablets on a long term bases? Even though I do have MS I was on Naproxen for quite awhile once I stopped it nearly all my neurological symptoms disappeared. Including dry eyes.

7

I haven’t been taking any medication at all for it unfortunately…

8

Hi please please believe me there is hope. If it is M.E. My daughter honestly she was bedridden a year. A pulomonary embolism will wipe you out too. It can be quick to recover or a slower process.

There are places now that have special programmes for M.E. where you can go and learn how to cope and recover.

There is Graded Exercise Therapy for example which worked for my daughter when she had her foal given to her as she was determined to get out to look after him. THIS PDF WILL HELP. Talk to your doctor as there are places now all over the country who deal with M.E. MORE SERIOUSLY.

http://www.cpft.nhs.uk/PDF/Miscellaneous/Graded%20Exercise%20Therapy%20%20Booklet%20May%202017.pdf

It is important to do it this way as your body cant recover from any form of exercise and you seem to be in the first stages of this disease so its not fully settled yet your still in the worse part of the fatigue. If your not sleeping it will make that worse, so you can see your GP to help you sleep better, and any pain you can have medication to cope with that too.

M.E. AND MS are so similar in symptoms the only difference is the endocrine issue and the fact there are no evidence in tests like for MS.

But if someone with MS looked at the symptoms of M.E they would think it was the same disease. Lots of them cant sleep properly, they never wake up refreshed, they find doing anything makes their fatigue worse etc…and they suffer pain.

You need to join the M.E. association and any other self help groups for M.E.

You can get better honestly with his. Dont give up with it.

You got through the pulmonary embolism and you can get through this.

Honestly my daughter will always have M.E. but she is so different now I am blessed we got her through it. I never thought i would see her up and about ever again, as she could barely move in her bed, but now she rides, runs her business and is a new women. It took years but those years of recovery were all precious.

This specialist explains M.E.

PLEASE dont give up there is hope and there is lots of help.