Hi all,
Does anyone have problems with tinnitus with the fibro-along with everything else?
I’ve have it for some years but just lately has got a lot worse and more annoying, especially at night. I have had a hearing test as I thought it might be too much wax, but he said they were all clear and suggested a cream just on the inside of the outer ear as I also have dry skin there. There is a lot of ‘whooshing’ and other noise and just getting too much. Anyone got any ideas? I try to ignore it but it does get too much. I have arthritis in my neck and jaw-maybe that is making things worse now? Feel like going a bit ‘crazy’ Lol.

Hi SueT, sorry to hear about your tinnitus. I have it as well and also the arthritis in the neck. I am afraid there is no cure for tinnitus or the arthritis in the neck and it is just one more thing we have to cope with! I do not know what to suggest to help you. If you do come up with anything, please pass on the information! Thank you.

Hi Rosebud74,
I do wish I could find something to help with all the stuff that comes along with the fibro, but unfortunately haven’t yet. Doctors tablets are no good for me, horrible side effects. My back pain is a lot worse but try to keep moving, it also makes me stomach worse. As for the tinnitus, the guy who did the hearing test said to keep washing the inside of the outer ear gently and then drying before applying the cream. I’m also going to try pressure points to see if that will help, will let you know if it does. Hope you are having a reasonable day.

Hi Sue, the people I know with tinnitus I think try to “see thru it”, a certain type of ignoring. With the aim of re-wiring. Like with our pain.
I have seen there’s lots of techniques/treatments for tinnitus (Therapy and Treatment Options | American Tinnitus Association), like listening to certain sounds (sound therapy Sound Therapy | American Tinnitus Association), and even if most won’t work for most, and there is no cure (where have we heard that before…? :smiley:) it might be worth going thru them all.
But personally of course for me acupressure points (youtube) would be a good start too, cos that works so well for all my inner ailments, even tho the ATA don’t list it.
And if you have the feeling the neck and jaw arthritis may be part of the cause, those are the sort of points you might like to look at first.
Or stretches. These are ones for neck-caused tinnitus by two physios that have taught me very helpful stretches (e.g. < tinnitus points arthritis > or <…neck> or <…jaw> on youtube):

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Hi Sue,
Yes, I have been dealing with tinnitus for several years now myself. It does get louder at night when things are quiet. I do also have arthritis in my neck and have also had a cervical fusion. My neck hurts me a lot and is severely tight with not much range of motion. I have to say I do believe it’s my neck and/or my jaw, as I seem to wake up with my tinnitus being a lot worse in the morning. Here are a couple of things that helped me: First I got a special pillow that has speakers in it (found on Amazon) that plays sounds at night, like relaxing ocean or creek sounds, white noise, etc. This has helped some, especially at night. My tinnitus is so bad that the pillow sounds don’t drown out the tinnitus, but helps get your mind on another sound other than the tinnitus. Second, I went to a hearing specialist and was fitted for hearing aids. I don’t have too much hearing loss, but what they do is play different sounds for me to set it to during the day, which helps get my mind off of the tinnitus and be able to cope with it a lot better (I can also listen to music through them). It’s important to know, yes, it’s terribly annoying to hear this ring or whooshing all the time, but I also know that it’s not going away unfortunately, and finding other ways to cope helps. There are websites for more information, I think one is American Tinnitus Association, which is a start. I hope this helps some. I have also tried accupressure, which didn’t work for me, but have heard it can. Massage also helps me relax a little more and loosen my neck up, which I think helps.

Hi Karen6,
I have had it for a number of years as well, and years ago they reckoned it was due to the arthritis in the jaw and then the neck, and just have to live with it. The last few months it seems worse. I can still move my neck, not a full range, but I hate when it ‘cracks’. The pillow sounds useful, will look into that. Not too sure about hearing aid. Friend of mine said they made her tinnitus worse. And it’s hard to see anyone in the NHS these days. I’m going to try the acupressure anyway and hope it will help a bit. Thanks.

Hi JayCS,
Thanks for your post on my tinnitus query. Yes, have heard the ‘there is no cure’ enough times already Lol. Why is it that whatever we get, there is no cure?
I have been looking at the youtube links that you sent and the videos are very informative. I have been trying massage before now and some stretching. Think I may have to do more each day.
How is the garden looking now it’s getting warmer?

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Good luck and best wishes whatever you do!

Remember the great woodpecker pics I posted for you last year (here)?
I’ve recently started posting pics on: my blog every day, usually 10-15, almost all in my garden, so you can see how colourful it’s getting… (and my blog is hopefully more interesting, something nice to look at, after a short summary of the day. Cos I’ve pretty much finished improving my health, just gotta make the best of the rest…)
The garden’s heavenly for me, my new home, whatever time of the year or weather. Making much closer friends with all the birds and everything’s growing even wilder, more lush.

Today I got carried away, with 5 normal, 4 squirrel and 30 swift pics taken from the videos I filmed…
A great woodpecker is around much more often this year, bit dangerous for the 3 young blackbirds. Haven’t got a good pic yet. I’ll be getting a “proper” camera soon…

My gosh , this is beginning to sound like a trend - no pun intended! I too have had tinnitus since being diagnosed with fibromyalgia. Perhaps this means it’s more of a neurological disease instead of autoimmune? That’s the only thing a health care provider suggested to me but also said there’s no cure . I do find that when I sleep with earplugs it’s worse the next day . I too have the dryness ( almost scaly) of the outer ear. Tinnitus is quite annoying at times but been there so long , I have no idea what complete silence is anymore. :grimacing::crazy_face::face_with_spiral_eyes: Hang in there guys - bought all you can do.

Yeah, you’re dead right with a strong association, research confirms that, see below.
Personally I expect the causes will turn out to be multiple, not either or.
However the links below say, stress may be one of the associating factor, and it can go both ways, from tinnitus to fibro as well.
But association isn’t causation, and the cause might be different altogether.

These are just the first 4 results of a < fibromyalgia tinnitus > search, I haven’t checked the claims made:

## The Impact of Tinnitus on Fibromyalgia - PMC - NCBI
Herein, we confirm that fibromyalgia frequently accompanies tinnitus. Furthermore, we show that the more severe is the tinnitus, the more severe are the FM …

## Fibromyalgia and Tinnitus: Navigating the Complex Relationship

Apr 19, 2023 The presence of one condition can increase the likelihood of developing the other. Stress on the body can lead fibromyalgia patients to …

## The effect of fibromyalgia treatment on tinnitus - ScienceDirect.com

Since the pathologies are caused by the same mechanism, fibromyalgia patients have very frequent tinnitus. In addition, in order to be able to use GABA and …

## Tinnitus in Fibromyalgia - PubMed

Fibromyalgia is associated with a relatively high prevalence of tinnitus.

have you started any new meds? :heart_eyes:strong text**

has anyone started the new fibo drug Savella

I don’t usually tolerate meds, but low dose naltrexone, LDN, has been helping me a bit with fatigue since October. I minimized side effects by starting with 0.07mg. (I re-encapsulate myself.) It is a med, an opioid antagonist, that is maybe more for brain fog and fatigue, and for pain only for a few, see this 2023 study.

milnacipran/Savella has been FDA approved for fibro since 2009, so the newest of the 3, but the other 2 were approved 2007 and 2008. Of these 3 it has the worst track record. Nevertheless a few people have a little success with it.

I summarized a 2022 study comparing these 3 with amitriptyline here:

Reading this might help you more specifically than if any one person says it helped them or it didn’t, cos they might have a completely different set of symptoms than yours. Like with all treatments we try. That study tries to show which set of symptoms these drugs might be best for.

(The only one of these I tried was amitriptyline, with 8 side effects after 4 months. And I and my docs are sure I wouldn’t tolerate the others, like I didn’t tolerate any pain killers or they didn’t do anything.)

Hi JayCS,
I do remember the great woodpecker pics, they were lovely, never see any round here. Mostly sparrows, blue tits, and pigeons. Wil have to go check out your blog and see the garden pics. We have some very colourful roses out here, pink, yellow, shades of red and they smell great. A ‘proper camera’?

I’m still trying with my health improvements as the last while things have got a lot worse for me. Especially the back etc, and feels as if my ribs are shouting at me too. At least the sun is shining today, even if it’s not particularly warm.

Yeah, Papparazzi-style… instead of just my pretty ancient phones.

I “shot” a “sun hole” in the grey sky yesterday…

Sun helps me a lot a lot, for sleep too, but heat got some getting used to last year, with weeks of nausea, let’s see if I’m more resilient this year…!

Yeah, rose colours are great, I have the same in the garden, only a single yellow that often only blossoms a few days, but several times a year, always a surprise.
But we have tons of bush roses in the streets around us - nice substitute for not having any front gardens): pink ones in front of and to the left of the house, my wife pointed my to some orangey ones, and some red-yellow ones.

Hope you find something for back and ribs, can’t remember how you fared with youtube-costo-exercises?

Hi JayCS,
I have been a bit remiss with the costo-exercises so will have to add them to the other ones I do every morning… I think my back is the worst as that seems to have a ‘knock on’ effect on my chest etc. Night times are not good as don’t sleep too much, too uncomfortable and the tinnitus and bad neck and TMJ seems to be giving me more headaches! I need a new body but can’t seem to find one Lol. I will keep plodding on though.

I do like the roses we have here, and some smell lovely, unlike the ones you can buy, they never seem to have a scent. This summer seems to be something of a wash out so far. Hope you are doing ok.


I had clavicle problems a week or two ago and was pretty sure doing my back exercises less strict had brought that on, as well as general pain problems. Sure enough, doing them stricter again alleviated and stopped it. Strict means I’ve found that if I do them on a hard surface - a carpet, I can reduce them. But if I do the reduced amount on my hard mattress, that’s not “tough” enough, the tendons aren’t stretched enough. So to save time I went back on the floor, the uncomfy way.
I’ve now come to think all my treatments of local pains are actually tendon stretches too: all exercises, the acupressure / trigger / pressing points, the massager, creaming.
But these others weren’t as effective as the back exercises. Doing them stricter increases the stretching.

So, if you “have the time” it may be good to add the costo ones at least for a while, but if it’s not, maybe doing less “properly” will be even better. Most importantly doing everything possible as soon as an inkling of a symptom re-occurs.

What about neck and TMJ exercises?
And any other spots than all these where the discomfort at night comes from?

Doing fine… as long as I don’t move, and distract online… = Bad spot triggered by doc appts. for more disability and retirement.

Wash out: nice one, like Germans say something has “fallen into the water” which is esp. fitting if it’s “rain stops play” (or any event).
I’ve grown to love the rain when I’m sitting in the veranda, and with double hoodies I venture out into the garden quite a lot too. If there’s a drought again, and I feel like watering the pot areas, I’ve collected rain in 100+ buckets, so when it rains I’m happy to fill up again what I’ve used.
But yes, here too: it’s only been good for water-loving plants and most animals, not for the roses and some other plants… However I’m sure it’ll switch over into drought mode sooner than we believe.

Hi JayCS,
I did try to do some exercises lying on the floor but was too painful, so my husband got a thick exercise mat to try, but couldn’t do them on that either. My back is just so painful I feel like screaming a lot of the time. I still do exercises lying on top of my bed, so hopefully it may eventually help. Have been doing them for years though, mostly for the lower back I think. Ones from a chiropractor, but he didn’t help much at all. In fact, I think he made things worse. I am doing some costo ones as well, not many as everything seems to hurt my back more.
Yes, doing the neck and TMJ exercises as well, and still gently cleaning my ears in the hope of making the tinnitus less noisy.

Spots at night where the discomfort comes from? My back aches all the time, sometimes worse, sometimes not as bad. If I lie on my left side sometimes it’s painful so I have to turn to the other side, and then sometimes that makes that side hurt more. I can’t lie on my back for long as it then aches more and makes my lower back hurt more the next day! I don’t know what to do any more to help myself. I have a new heating pad which is good for a while, and even just sitting on the sofa doesn’t make my back stop aching. When the sides ache more it seems to make my stomach ache more-so annoying. My husband tries to help but sometimes it’s better if he just leaves me alone or I end up shouting at him. Sorry for the ‘ramble’ but no idea what to do next.

As for the weather, it’s wet again this morning, so fed up of rain and more rain. I know it’s good for the garden-but so is sunshine.

Take care, enjoy the garden,

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Hiya Sue - True, with more tenderness the hardness of the floor caused more pain, so I’d gain and lose. Balance needs to be gaining more than losing. Best for me was usually a thin mat, when possible. So doing them on the bed means we can’t do them properly. So that we have to counteract by straining each position as strongly as possible, not longer tho.

I’m wondering if your back exercises aren’t the right ones for you and you need better ones (by trying out new ones from youtube)? Cos you say the chiropractor made it worse, but you’re still doing his exercises? Same for your costo exercises, if they make it worse.
Or do you mean worse short-term, but in the long term better?

If I don’t do my back exercises every single day, however bad I feel, I’m in excruciating pain with yucky feeling, can’t sit, lie or anything from about 2 days later, and that takes a couple of days of really diligent back exercises to get my muscles back to ‘normal’.

So we need to sort out pain types, like skin, bones (I’m skinny, so between bones and skin there’s nothing much), the muscles, the tendons. I have to accept short-time skin and bone pain from exercise, to get the mid- and long-term muscle and tendon pains in check.

Which type of pain/ache is your back ache when you lie on it, would you guess?

Have you any exercises at all that actually help?

I think it’s normal for us, it is for me, to have to change position continually, and in my worse days I had to get up, just for less lying pain. I’ve now found out better positions with which I can lie better, plus also arching backwards slightly is a good stretch position that helps that too.

Heat wouldn’t help me for that, good that it does you. Sofa is deadly for me, so it’s not even, it’s one of the worst sitting I can do, the softer the more it kills me. For the skin and some bones it may be better, but sinking in and losing muscle tension causes lots of problems.
So then I thought sit hard up to 2 years ago, then discovered that’s just as bad for the pelvis bones.
When sitting I need to move, I stretch right and left and have and adjustable swiveable chair for eating, if I can’t sit twist-stretched anywhere, usually on the floor indoors and out, with a high lean, high enough to be able to rest my head in between.

Interesting that your side ache increases your stomach ache. Praps via pressure on it? I often have stomach ache at night anyway from acidity, so every time I’m up I drink some almond milk, however usually with a small GABA capsule, which being an amino acid of course doesn’t help the stomach acidity. But I need to keep my serotonin up round the clock. I used to eat an almond or 2 if the stomach is worse, that helps, but makes the sleep break longer, which is dangerous for getting back to sleep, so I try to keep to the almond milk/drink.

Yeah, poor partner often enough :wink:

That’s no ramble to me, all very clear, and exactly speaking it out, which might help, to ramble more!

We’ve got both sun and rain today, not enough rain to stop neighbour mowing, but enough to shorten the stints… I’m snipping my meadow down to 10cm bit by bit for the guinea pigs, so the wild flowers can come up, but the insects have a chance to move over, win for all 4 and the grasses too.

All the best!