Does anyone not have pain but just weakness?

[justy]

@justy

I get really bad eye pain, in the back of my eyes when I am bad it can be bad for months and I am unable to read or use the computer and have to wear and eye mask for a great deal of the day because also light sensitive, but the only way to stop the pain from worsening is to rest and close my eyes. I find it one of my most debilitating and painful symptoms when it's bad. I was wondering if you had any theory as to what may be causing it. I also have POTs and eye pain seems to be worse when I am in a bad flare up so I was wondering if there is a possible connection there and with over stimulation of the sympathetic nervous system. Would be interested to know your thoughts?

My eventually went away - it felt like optic neuritis to me. or maybe migraines - I used to get zigzag auras across my vision occasionally during that time. Its normal for me to have an extremely debilitating issue or symptom for months or even years just go away and not come back.

 

[rosie26]

I had a lot of head pain in my first few severe years. But overall I don't have a lot of pain. But when I do I mainly get pain in my hands if I do too much typing, writing, or handcrafts etc. I do get some pelvic pressure pain at times, also headache and sinus pain. Some muscle pain or shooting pains at times. And I get pain behind my eyes, the muscles feel affected there. I'm bound to have missed some more types of pain.

But the weakness is over and above the worst. When it's severe it is overwhelming and agonizing. Too sick and weak to make meals or do anything. I had hoped about 5 years ago that this severe weakness was behind me as I had made quite a lot of progress to moderate ME and had seemed stable there for quite a few years but it wasn't to be. I have had 5 bouts of severe since 2012.

 

[Snow Leopard]

My eventually went away - it felt like optic neuritis to me. or maybe migraines - I used to get zigzag auras across my vision occasionally during that time. Its normal for me to have an extremely debilitating issue or symptom for months or even years just go away and not come back.

Some cases might be due to migraine. But I don't get migraines...

@Molly98
I don't know what causes it, all I've managed to achieve so far is an argument with the opthamolagist after waiting months for an appointment.

Something like 2/3 of optic neuritis cases (retrobulbar) do not have visible inflammation from the front of the eye, since the inflammation is at the rear - but that inflammation of the nerve generally causes field of vision defects (or other unusual signs like loss of colour vision) over time, which seemed okay when tested. Optic neuritis is often caused by other autoimmune illnesses...

Maybe it is due to the eyes being more susceptible to the weakness due to this illness, my health is worse than a few years ago too. I should also state that my eyesight has declined recently from long sighted to mildly short sighted in a space of about 2 years.

 

[justy]

@Snow Leopard - yeah, I wasn't getting migraines either at the time, just wondered if it could have been a silent migraine thing. My eye pain was very much like optic neuritis - lasted a long time, extremely painful, affected my eyesight and hurt to touch or move the eye. I didn't see an optician or Dr at the time as I was too ill to go out. When I did finally make it to the opticians she was dismissive - don't know if she even checked, just did a regular eye test for glasses.

 

[Molly98]

@Snow Leopard @justy

Thank you both for sharing your thoughts. I also have not bothered with optician simply because I do not want to go through the process be told once again there is nothing wrong, when clearly there is if your are in such pain that you have to have your eyes closed for most of the day. Whatever is causing it I feel is ME related at therefore not likely to show up in an average eye test. The pain can be there from the minute I wake up even before opening my eyes to when I go to sleep. At worst it is the equivalent to having bad toothache but located in the back of my eyes - it is very hard to ignore and very debilitating and frustrating when I simply have to keep my eyes closed and can not read for months at a time.

I do wonder whether it has a connection to the sympathetic nervous system being highly activated and autonomic dysfunction as I also have POTs and know the muscles/nerves in the eyes are controlled by the autonomic nervous system too.
Just another of those odd ME symptoms. I hope mine disappears over time but unfortunately, my ME eye problems just seem to have got worse over recent years. Thanks again for your thoughts

 

[Valentijn]

I get a deep (vascular?) pain, but injecting high doses of hydroxoB12 manages it very well. All bets are off during a crash, however.

 

[sleepingbeautyxxx]

I only experienced pain very occasionally. For me, it was more of weakness all over too. My body would just feel very heavy and tired. On some days I can do light workouts and on other days it feels like as if my muscles suddenly disappeared which is very frustrating.
It's only now that I have mild pain almost all the time, after about three years.