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Cfs / ME & tinnitus

doglover1973 profile image

Hello there. I'm new to this forum. I've had ME for 22 years and I lead a very quiet life. Last July my previously mild tinnitus got very loud - and it still is . I've had a tough time coping with ME & tinnitus together. I need silence for ME and sound for tinnitus. Does anyone else have both? How do you cope? Thank you.

14 Replies

Hi! I have both and find it infuriating, no real advice to offer but just moral support.

Ahh. Thank you Seavee. I'm sorry you have both too but it's nice to know someone understands. Infuriating just about sums it up. I suppose these things are sent to try us ..

Hi I have both. I think my brain blanks out a lot of the tinnitus. It’s very loud if I take notice of it. I have lost the hearing in that ear.

Hi Pat. That's encouraging. I'm hoping to get to the stage where my brain blanks it out. I've lost my hearing in one ear too. I don't know if it's due to the ME or something else.

Yes I’m never quite sure but diagnosed with menieres but don’t have faith in the medics so I just take their views and deal with the symptoms myself

Best thing to do. I don't trust the docs either - after my ME diagnosis 20 odd years ago. They told me it was all in my mind. I don't think they're allowed to say that nowadays. Thankfully.

Yes, me too, I use background noise ; music, tv etc to distract me, sometime silence is the worst 🙋

doglover1973 profile image
doglover1973 in reply to JKW1

Hello JKW1. I'm not resting in silence anymore - unless I'm really tired. The T seems so loud in comparison. I'm experimenting with different sounds. Mostly radio or CD's. Very soft music seems to be a good option .

JKW1 profile image
JKW1 in reply to doglover1973

Relaxation recordings can be good. I have a few, my favourites at the moment are waves on the shore (pebble, gravel and sand), sounds of the sea, (which includes boat sounds and animals) and falling rain (in different settings and onto different surfaces)I hope you find sounds that Sooth you, Good luck 🙋

doglover1973 profile image
doglover1973 in reply to JKW1

Thank you! Where can I find recordings of natural sounds like these? Are there CD's out there? I don't have a smart phone or a tablet.

Solitudes is the name on my CDs which in the past I have bought them from Garden centres where they have a machine playing different types of um “gentle nature” type of music. Can’t think of the usual term/ name. Anyway, one presses a button on the type of sounds /music you want to hear ( birds, stream, nature, waves etc ) up to about 30 to choose from on the machine. And it will play for about a minute or two. Press another button to listen to another sound. But if no garden centres near you have these machines. They are available pre owned or new on an online auction site as I’ve just checked now for you.

I also have CFS/ME & Tinnitus also. With me, It gets noisier from later afternoon onwards.

Thanks Rosepetal. That's great. I'm sorry you 've got both too. It's frustrating . My T is fairly steady thru the day. Perhaps a little less loud in the evening . If anything.

I have fibromyalgia, ME, and tinnitus too. I’m having a hearing test on the 13. My doctor thinks my vertigo is linked to it all.

Sorry I didn't reply Kitten-kat. I must've missed this post. How did your hearing test go?

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