Any idea about how to fight with dizziness?

[inotazo]

I am a man with fibromyalgia (see also my recent diagnosed post). Among many of my symptoms, I would say I suffer from dizziness/balance issues the most. My body always leans toward the right, and I am almost disabled to walk unless I grab an object or person. When I stand still, my body swings from left to right. When I sit down, my upper body still swings. When I lean on the back of the chair, my head still swings. This dizziness exists all the time, but it can get lighter and heavier.

Does anyone have a symptom like that?

In this thread, I would like to hear what kind of treatment/technique/exercise we can practice to deal with dizziness from fibromyalgia.

 

[inotazo]

You will have first seen a neurologist, yes, about the balance issues?

As I previously said:

I have been seen by a neurologist, balance doctor, ophthalmologist, and neuro-ophthalmologist, but no one figured out my dizziness. And my doctor who takes care of my fibro thinks my dizziness is from fibro.

It is true that I have several disk bulges, about which doctors says they do not cause the dizziness.
Unfortunately, I am in 30s, so probably what DebMarPir mentions does not seem to be applied to me. Some doctor also prescribed meclizine, but it did not work at all.
Every time I hear from other persons' symptom, it makes me surprised how fibromyalgia symptoms vary.

 

[inotazo]

This is completely familiar to me

hi. i am so sorry that you are experiencing these symptoms. i know exactly how you are feeling. as i have the same

It was really good for me to know that other people feel the same way!

 

[william brown]

Me too but lucky to see him on wednesday dizzy not great but lately i have been throwing up a lot and from the other end then it just stops

 

[Momzilla]

Jemima and Suncakola,
Is this a fluid intervention? If so I accept.
So what you're both saying is that it's me noggin thats the problem and I shouldn't compare myself to plants since I'm human?
What about a camel reference instead?
Just kidding ! Seriously though I made an appointment with a hypnotist. So I can be hypnotize into thinking im thirsty.
Seriously though I know you're all right. Im going to buy myself a new novelty water bottle. I'll look for more flavor packets but they always have fake sugar which I hate. I can't even stand splenda.

 

[Creola17]

Im going to buy myself a new novelty water bottle. I'll look for more flavor packets but they always have fake sugar which I hate. I can't even stand splenda.

Put real fruit in. Its delicious! If you can't find fresh get frozen. Red dragon is a good one! Or if you like nut milks, they're filled with water.

 

[sunkacola]

Jemima and Suncakola,
Is this a fluid intervention? If so I accept.
So what you're both saying is that it's me noggin thats the problem and I shouldn't compare myself to plants since I'm human?
What about a camel reference instead?
Just kidding ! Seriously though I made an appointment with a hypnotist. So I can be hypnotize into thinking im thirsty.
Seriously though I know you're all right. Im going to buy myself a new novelty water bottle. I'll look for more flavor packets but they always have fake sugar which I hate. I can't even stand splenda.

Ha-ha.
Good to see you have your sense of humor intact, Momzilla. You never want to lose that, as it will get you through a lot.

 

[Jemima]

Jemima and Suncakola,
Is this a fluid intervention? If so I accept.
So what you're both saying is that it's me noggin thats the problem and I shouldn't compare myself to plants since I'm human?
What about a camel reference instead?
Just kidding ! Seriously though I made an appointment with a hypnotist. So I can be hypnotize into thinking im thirsty.
Seriously though I know you're all right. Im going to buy myself a new novelty water bottle. I'll look for more flavor packets but they always have fake sugar which I hate. I can't even stand splenda.

Cactus, camel - whatever works! I'm with @Creola17 on the fruit - a handful of frozen berries in water is lush

 

[JayCS]

In this thread, I would like to hear what kind of treatment/technique/exercise we can practice to deal with dizziness from fibromyalgia.

Good, tough question. Dizziness has so varied causes.
I remember pre-fibro getting dizziness after getting thrown off my bike by a car or having had the flu and thinking it was part of the illness. Then after a few days, I spontaneously decided to pretend I was well, get up and move around more, and lo and behold the dizziness went, so it was circulation. Another case was when my fibro full flare started, getting dizzy while playing table tennis. I realized that closing my eyes not when playing, but when looking down, got rid of it.
This is a detailed post of mine here from May generally about vertigo: Don’t make the same mistake I made.
As you may be believing it is actually integral to FM itself: If we look at the way fibro seems to work, it may be the balance/eye/brain-nerve-coordination. In that case neuroplastic & vestibular exercises could be helpful (vestibular com, youtube). Or what if it's the other way round, an imbalance in you is making your muscles distort your body feeling, which is causing mayhem to the rest? As the docs have only managed to exclude things, which is understandable, my best bet wd be to try expert physios on this, or as a workaround or parallel to that try vestibular & other exercises on youtube on it. Those then wdnt have to be specifically for fibro, but just knowing that fibro may be more the muscles or maybe the nerves than for instance anything really vestibular. I don't think the connection to fibro fog is that helpful, as that for me seems more like brain fatigue than directly neural?
There's a youtube vid talking about fibromyalgia & dizziness which mentions at least one study, but since I haven't found one relevant enough yet, I'm not sure how helpful that'd be, I'd go thru the ideas/terms anyway tho.

 

[inotazo]

Thank you, JayCS!

Dizziness has so varied causes.

This seems to be very true.
I recently realized that whenever I have a massage (from a professional), the dizziness is remarkably reduced, though temporary. Especially, although I still feel dizzy slightly, the massage enabled me to walk. In my case, the dizziness seems to be related to the stiffness of the shoulder, neck, and back. From my experience, PT and chiropractic work don't work so much, but I can get a huge outcome from a deep tissue massage. I wish I could know why massage works the most in my case!

 

[JayCS]

From my experience, PT and chiropractic work don't work so much, but I can get a huge outcome from a deep tissue massage. I wish I could know why massage works the most in my case!

What does your masseur answer? Not sure about chiropractic (@sunkacola: what'd'you think?), but I'd guess "deep" is the thing, PT doesn't go deep "into" the muscles, tendons, ligaments & fasciae. So similar techniques such as myofascial release, trigger point therapy, Rolfing & praps osteopathy might also work for you. Similar for me, deep tissue massage was almost the only thing in my fibro-clinic that was new to & worked for me. I was afraid that the cutting pain during it'd be a problem for my sensitive skin, but it wasn't; did it twice. In that sense it is similar to my acupressure with triggerpointing, scar treatment with vibration etc. - more pain during, but so much relief, suppleness, flexibility after. In my acupressure she keeps under my pain limits, unless I don't complain enough....
Why exactly these manipulations work we probably won't be able to know exactly, apart from their own explanations (which are pseudo-scientific), as there is no good scientific evidence (for or against). Interestingly for me it was developed as Bindegewebsmassage in Germany, and some started calling it Connective Tissue Manipulation, as massage sounds misleading. CTM.
Summary of all I found on pubmed: "These effects appear to be mediated by neural reflexes that cause an increase in blood flow to the affected region together with suppression of pain." "improves depression and quality of life;" "Manual lymphatic drainage may be superior to connective tissue massage," and "treatment is based on a theoretical model that assumes a reflex effect on the autonomic nervous system which is induced by manipulating the fascial layers within and beneath the skin to stimulate cutaneo-visceral reflexes." Not sure if that now helps you - it's probably more important to keep at it, adjust the "dosage" (my acupressure needs to be 4h/w), and try similar stuff.

Spoiler: Click for pubmed-research details & more quotes, incl. on all massage for fibromyalgia...

In an ancient British article from 1991 (Goats/Kier) "These effects appear to be mediated by neural reflexes that cause an increase in blood flow to the affected region together with suppression of pain. CTM is becoming accepted more widely as research confirms the claims of an expanding population of practitioners."
A Sao Paolo systematic review/meta-analysis from 2015 on "different styles of massage therapy in fibromyalgia" showed this: "Meta-analysis (pooled from 145 participants) shows that myofascial release had large, positive effects on pain and medium effects on anxiety and depression at the end of treatment, in contrast with placebo; effects on pain and depression were maintained in the medium and short term, respectively. Narrative analysis suggests that: myofascial release also improves fatigue, stiffness and quality of life; connective tissue massage improves depression and quality of life; manual lymphatic drainage is superior to connective tissue massage regarding stiffness, depression and quality of life; Shiatsu improves pain, pressure pain threshold, fatigue, sleep and quality of life; and Swedish massage does not improve outcomes. There is moderate evidence that myofascial release is beneficial for fibromyalgia symptoms. Limited evidence supports the application of connective tissue massage and Shiatsu. Manual lymphatic drainage may be superior to connective tissue massage, and Swedish massage may have no effects. Overall, most styles of massage therapy consistently improved the quality of life of fibromyalgia patients."
The abstract of a UK review from 2015 says "The assessment of the patient and the clinical decision-making that directs treatment is based on a theoretical model that assumes a reflex effect on the autonomic nervous system which is induced by manipulating the fascial layers within and beneath the skin to stimulate cutaneo-visceral reflexes." The complete article (core ac uk / reader / 322329682) just repeats that and deplores scarcity of good clinical evidence.

 

[sunkacola]

What does your masseur answer? Not sure about chiropractic (@sunkacola: what'd'you think?),

My excellent chiropractor has been very helpful to me. But I think that is primarily because I have an anomaly in my spine and degenerative discs. He knows my body and what it has gone through in the past several years and in a superb practitioner. I would not trust just any chiropractor the way I trust him. He is very sensitive to what is going on in my body and never does more than I can take at the time, yet always does enough to be of help. I see him once a month. But I think if you did not have any spinal issues it is possible that chiropractic wouldn't be helpful to you.

 

[inotazo]

Although I told my masseur that I had fibromyalgia, he did not seem to have a specific idea about how to deal with it.
Even if I get a massage, the condition comes back after a while. This should mean that massaging does not work on the cause of fibromyalgia but just deal with some secondary conditions caused by fibromyalgia. My fibro doctor also says that massage is merely a band-aid.

But, anyway, so far, I guess I need to keep having massage regularly so that I can have an as normal life as possible even if it only has a temporary effect.

 

[JayCS]

Even if I get a massage, the condition comes back after a while. This should mean that massaging does not work on the cause of fibromyalgia but just deal with some secondary conditions caused by fibromyalgia. My fibro doctor also says that massage is merely a band-aid.

Hmm, osteopathy didn't work as well, often only temporarily, acupressure is going deeper and deeper, also not working on the cause or the core symptoms, but dealing with a lot of secondary conditions, which after all as you say leads more quality of life.
But again it's the "dosage". Several of the secondary conditions she has definitely got rid of needed 3-5x 1h of direct work, and 1h of "preparation", on it, sometimes seeming to harm first, then improve. Some things harmed and weren't right, so we left them. Maybe osteopathy would have worked better if he'd dosed it differently - in that case not more often than 2x40'/w, maybe shorter but more often, maybe he'd've had to have had more experience - however my more experienced osteopath (she did 1h sessions, irregularly) before that didn't seem to harm more than help, so his seemed more suited to my body). OK, but longer tissue massage is probably too tough - but maybe more often? How often is it?
Normal massage is only a band-aid, yeah, but if you can find someone like sunkacola's "chiropractor" and my "acupressurist" who work & think outside of boxes, then I think it can be more.

 

[sunkacola]

Just to be clear, my chiropractor works on issues that my back has, and not everyone with fibro will have those back issues. If your problem doesn't fall into the category that a chiropractor can help with then chiropractic may not help you.

My chiro, who is very skilled, will be able to help a person with many other things like supplements and nutrition. But by no means do all chiropractors have that skill.

What my chiropractor does is basically keep my back lined up in a way that lessens the effects of the anomaly I have in my spine and the subsequent issues, and helps with the degenerative disc issue. Neither of those things can be cured, so the work he does is only maintenance of alignment to a level that my back pain is significantly decreased. If your back pain is due to fibro only and you do not have any actual issue with your spine or body alignment, a chiropractor may or may not help you. It will definitely help if your spine is misaligned. You have to go to one to find out.

Massage, in my experience, always has a temporary effect. And I go to my chiropractor once a month because maintaining what he does requires that.

 

[JayCS]

Just to be clear, my chiropractor works on issues that my back has

Ah, thanks for clarifying, it hadn't quite sunk in.
Bit OT/off-topic:
So my acupressurist (or praps generally professional acupressure?) seems pretty unique in her (its) extent.
Something I'd expected more of acupuncture, which I can't tolerate at all.
But she is down to earth OTOH and still has quite a few limits OTO, which means we can exchange ideas,
but altho she has FM herself I often feel she only partly understands it and esp. my peculiar form,
as well as sometimes doesn't understand/confuses certain words,
so I have to keep explaining things again and again - I spose normal in our fibro-world, but not normally amongst fibromites...
Today I told her I feel 'battered' and she understood 'fatigued' and said, well that's not pain.
(In German I said "zerschlagen" and she was thinking of "abgeschlagen", so not as dissimilar as you might think.)
When I spoke with my wife about this, she said: "That's because nobody knows you like I do.
Everyone sees you happy and what you strenuous things you can do when you're feeling well, but not what you look like when you get home."
That's the reason I'm now explaining people (incl. her) more that I'm 'targeting 40%'...