Fibromyalgia: Has anyone on here... - Fibromyalgia Acti...

Fibromyalgia Action UK

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shanie54 profile image

Has anyone on here experienced any other unexplained symptoms of fibromyalgia that are not in the common symptom lists?

46 Replies

Would you be more specific? Nesie 237

Yes I have the nerve pain but not diagnosed.

I'm having high fluoride toothpaste in n prescription as the dry mouth from all the pills is causing my teeth to become really sensitive to hot and cold food and drink.

Your doctor can prescribe a gel for your mouth my dentist told me, he said dry mouth cause teeth to basically Rott so ask your doctor to get it added all it is is basically replacing natural saliva, protects your teeth, also hypermello drops for dry eye replace natural tears stop your eyes getting sore xx

Hi spikey9222 I'm experiencing dry mouth I can't pin point what happens because it's not all the time I no my meds causes dry mouth

in reply to spikey9222

Please be careful taking anything with flouride as this can lead to severe brain fogging and forgetfulness. Flouride kills the brain cells.

spikey9222 profile image
spikey9222 in reply to

Hi I have that anyway I don't know if it can get much worse. Thanks anyway.

Try magnesium oil spray and B12 vitamins. Great for the brain x

Yippity profile image
Yippity in reply to spikey9222

hi, are your eyes dry too? I have just been diagnosed with Sjogren's Syndrome (pronounced Showgrens) I have Fibro and like you I thought it was the meds but it is not necessarily them causing it. (People with Fibro are much more prone to get this syndrome, some doctors think there is a connection). There is no cure but it is good to chew surar free gun and sugar free sweets otherwise the lack of saliva in your mouth can cause severe decay and you can loose your teeth. The eyes can also be damaged. I hope this is not what it is but it would be wise to look into it before it cause you problems, kind regards, Andrea

shanie54 profile image
shanie54 in reply to Yippity

Thank you all for replying. Yes I have dry eye and dry throat and mouth. Of course they sa it is my imagination. I also have a tightening of the throat like someone is strangling me. All the tests have been done but just like fibromyalgia years ago it is all in my mind.

in reply to shanie54

Shanie, I have the same thing as you plus tight muscles front of neck all the way to the jaws. I sometimes doubt my diagnosis made recently as I have so many symptoms. I also suffer anxiety and OCD and hypothyroidism. :(

shanie54 profile image
shanie54 in reply to

Anxiety is a big part of this disorder. Lately I have not been able to sleep much and this is increasing my anxiety. The doctor I have now does not believe in giving drugs that help with sleep or anxiety. I know as a mental health counselor how much of a problem sleep deprivation can be with this disease.

Multijo profile image
Multijo in reply to spikey9222

Yes me too! I also use biotene products for dry mouth and love sustayne drops for eyes. But I assumed the sjogruns was tied to the RA not fibro but does it matter?

yes, any problems you have is most likely fibromyalgia &/or other auto immune illnesses associated with Fibromyalgia

Choking - I understand that the cause of fm is very thick body fluids. The inability of these fluids (including saliva) to work normally is their thickness, saliva for one causes guttar (sp?). Ever participated in a watermelon seed spitting contest? - you are lucky to get the seed past your chin!

This choking can happen while eating, while sleeping, while exercising, etc - totally without warning and has caused me to get to the shoulder of a highway quickly, because I get tears while choking and could not see properly, wake in the night, stop in the middle of a presentation at work, etc. It is really scarey. I have found the only thing that will stop it is chewing a strong peppermint gum and now keep a ready supply on hand.


Eyes - I have very dry eyes which sting and when really bad I get a light mist in front of my eyes.

Choking and also sneezing repeatedly (up to 25 at a time) without taking breath! Very Uncomfortable. Also blocked tear duct in one eye, resulting in what looks like a permanent black eye!

I have stinging sore eyes.

lMorning shanie I have calcium on my bones phseudo gout it is called. Just up as I was in to much pain to rest, xx


Yeah I get really sore itchy eyes (seems a lot of us do?!) dry mouth and I don't really take meds that should cause that (unless codeine does?) I wake up a lot feeling really bunged up like I have a cold but that passes in an hour or so. Sometimes when I get up it takes a while for my vision to properly focus. I bruise easily too. Then there are all the more 'common' ones. It's amazing what a vast collection of ailments this condition seems to cause. Xx

ShellyC23 profile image
ShellyC23 in reply to Fruitbat77

Yes this sounds like me

shanie54 profile image
shanie54 in reply to Fruitbat77

As well as dry eye I am developing vision problems and floater and I have $2000 worth of corrective lenses in my eyes.

Fruitbat77 profile image
Fruitbat77 in reply to shanie54

Sorry to hear that. Nobody understands all the horrible issues that fibro can cause, it isn't just 'pain' it's such a multifaceted illness, sometimes it can really get on top of you when it just seems to be one thing after the other. With so many issues, it's almost impossible to have a good day, as there is always something wrong. Stay strong 😀 Xx

I agree with what you said. Fibro seems to have taken over my entire life and that of my family. Until it's taken more seriously we all need to keep fighting. good luck

I think the weirdest ones for me is when it feels like I'm electrified, when it feels like my brain stem is being squeezed and a sensation of currents zipping around or causing a buzzing feeling from within. I also become highly sensitive to noise at times. Do you have any symptoms that are unusual?

loglegmomma profile image
loglegmomma in reply to

The buzzing is the worst!!

I too suffer from the dry eyes and mouth but also sometimes very sensitive to noise and smells. Yesterday's bus journey was particularly unpleasant!

shanie54 profile image
shanie54 in reply to ShellyC23

I smell things and no one else can. It saved our life though. I smelled gas and no one believed me. Finally my husband said call the gas company and we had 3 gas leaks in the house we rent. Wow

I have had fibro for 16yrs and I am still finding more things about fibro it seems to be endless. And it does seem to get worse over time. At least it seems some medical people are starting to believe. In my case I'm the pain management team have started to help me more.i hope they start taking us all more serious? Good luck

When I was first diagnosed it was not long after they took it out of the DSM and decided it was not a psychological disorder. So it has been a long road of looks from medical professionals and individuals that say to me you need help or you are a drama queen. I still get it. Since I turned 60 years old more problems have appeared and the doctor has just reached the point of saying yea you have complained about that before or I don't know what to do with you. So a change of doctors still gets me the same results. Very frustrated but just keep pushing them until they take me seriously or give into my, what they consider whims. WOW!

shanie54 profile image
shanie54 in reply to shanie54

I am a professional counselor with a dual Master Degree in mental health counseling and education and I still get the treatment.

Wen I get lung infections my pregabalin then make me worse,but once infections have gone pregabalin work wonderfully,also get popping and wet ears,feel like water slightly leaking from them,am prone to infections full stop.Peace,Jay

shanie54 profile image
shanie54 in reply to jaypikey

The only thing Lyrica did for me is make me sleepy. It just seems I am constanly getting problems and symptoms of all kinds and they just look at me like I am a hypochondriac.

jaypikey profile image
jaypikey in reply to shanie54

Trust me,before I was correctly diagnosed you would laugh at what they said I had. That's where forums like this become a God send, and it helps us realize that we are not going mad and neither are we alone. Sending you blessings and health and well-being. Try to enjoy ur day and try not to exert yourself. Gentle hugs and wishing you peace. JayX

shanie54 profile image
shanie54 in reply to jaypikey

Thank you and you as well. I try to enjoy everyday because sometimes, well I can only explain it as, I feel like I am dying. So keeping that in mind, like the beer commercial says, grab onto the gusto, and I do. As far as exerting my self I don't have much choice, I have a sick husband to take care of and have to work part time to keep my insurance, so I keep fight but sometimes it seems like I won't make it, but with the help of God I do. Take care

loglegmomma profile image
loglegmomma in reply to jaypikey

I get the popping wet ears too. That's fibro?

shanie54 profile image
shanie54 in reply to loglegmomma

What do you mean by popping wet ears?

loglegmomma profile image
loglegmomma in reply to shanie54

They feel like when you are on an airplane with pressure build up and then they drain & feel better. ENT & Neuro say they look fine & don't seem interested, but it's very uncomfortable.

shanie54 profile image
shanie54 in reply to loglegmomma

I have never had that but am sure it is uncomfortable. But then I have not flown a lot.


sorry this reply is late.

I too get weird sensations.

I've walk my dog and have had a few stinging nettles get me in the summer . but one day I got just three tiny nettle stings and all the previous stings up and down my arms and legs came out for three days.

Also got a bit wet walking in the rain, my Leggings were soaked. a few days later a bit of long wet grass touched my legs and my legs felt wet for about 4 hours.

My latest is more worrying. I feel like my tongue is swollen. I'm going to talk to my GP about this as it maybe a party of Fibro anxiety or something else. that scares me as my aunt had MS.

I hope we get answers for all of our symptoms soon.

Take good care of yourself


shanie54 profile image
shanie54 in reply to Lydia200

That is what I keep worrying about is MS. I have been told that if you get one autoimmune disease that others can follow.

Swelling in my legs and sweating but they have looked for blockages and there are none.

I get stiff feet does anyone else please xx

Not only do I get stiff feet but my whole body is that way. I call it my rigor mortis setting in. I also get muscle cramps to the point they will tighten and draw, for example, suddenly my hand or foot is all deformed with tight muscles I can't move.

I have nodules in the lower lumbar. ....also from the age of about 11 I'm crippled with wind 😟

Yes crippling fact I can honestly say now that I have had children that the pain is similar to a labour contraction. When my children were young they were very upset to see me like it....It explained that its nothing to worry about and I'd rather not be fussed over. It is always in the morning. .It did scare me the first time. ..but I've had it for over 40 yrs now and have learned to just curl up and it passes after a couple of minutes 👍

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