Have fibromyalgia - told this last year by consultant.Now getting a lot of problems with nose/ears/ headaches and nose polyps etc. Have had this many times in past. Now I cannot use the nasal sprays you usually use to shrink the polyps.
The problem I have is that doctors do not understand these things. They say use the nasal sprays and that is it. Because I get a lot of side effects making it unbearable to use them they dont listen. The alternative to nasal sprays is obviously steroid tablets. Which I dont get immediate side effects from. Or to have an operation to remove the polyps. But then you would have to keep having the same operation over and over when they grow back.
Written by
wiserlady
To view profiles and participate in discussions please or .
Hi and a warm welcome to the forums. You can find general information on fibromyalgia at our website fmauk.org and our patient information booklets at fmauk.org/publications
Polyps would not generally be considered a symptom of Fibromyalgia, so you might not get many responses relating to this - not sure if there is a forum for ENT problems that might offer more help
I have had fibro for 13 years now and actually learnt last year all the sinus issues I’ve had all my life can be common when you have fibro. I learnt this from my fibro group from rheumatology. So maybe if she didn’t put this in the group others wouldn’t realise there can be links with sinus issues and fibro. My sinus problems are making me stay in a permanent flare up as they are affecting my sleep I wouldn’t wish it on anyone xx
I was referring specifically to the polyps not being fibro connected. I agree that general sinus issues can be an issue for many people - I have non - allergic rhinitis myself
Hi there, I know sinuses and fibro can be connected - my rheumatologist told me all this in December, I asked him about it because I have had constant sinus problems over and over, very serious ones for years. I had my nose operated on years ago - to remove bits of skin and bone - and it did not help at all. I had had polyps removed dozens of times. The normal rule is that polyps that are shrunk or removed take four years to grow back, mine often grow back in just two months. We discussed this at length. I've read bits here and there online about it too connecting it. Obviously the sinus problems are fibro related and fibro problems usually lead to polyps, it is as simple as that. You cannot have one without the other.
Thank you, interesting to read as this sounds like me over the last 8 years been constantly prescribed antibiotics I do have cronic rhinitis but it’s really affecting my fibro, sleep and health. I’ve just had a CT and I’m hoping surgery like you’ve had may give me some relief x
You must be careful about antibiotics. I was constantly being given them plus steroids for nose problems. Then when I researched I found that you need either the antibiotics OR the steroids but they give you both because its quicker and easier. Of course antibiotics can lead to poor gut flora which causes a lot of problems all over. You must always take biotics with them and in between to try to make up for that. I really hope you feel better soon and can have that operation soon and it is the answer. I know some people have had it done and it works great and others have it done and it does not help at all, yet they will still suggest they have it done again, which makes no sense to me. If the first one did not work then a second one for the exact same problem will not work either. If you have problems with allergies/sneezing that is often caused by poor gut flora which is ok when the balance is alright again. Your histamine fighter is produced in the stomach and supposed to subdue it, but sometimes gets ruined by antibiotics etc. Same with vitamin k.
Wow thank you so much! Learnt a lot there I’m on antibiotics as we speak. I will buy some probiotics for my gut and I never knew our histeme fighter is in the gut. Which probably makes sense why my allergies sinus’ are so bad and have been so bad the last few years,After years on antibyotics. Thank you.
you are welcome.Get good quality biotics and take them for a long time, there is no quick fix. Take more if and when you take antibiotics and try to avoid that if you found that my doctor would tell me to take antibiotics and steroids about every two months yet after some thinking and learning in my case it was the steroids that helped and the antibiotics did not help at all but contributed to other problems. It is also a good idea to make sure you get a probiotic which has a lot of different strains in it, not just one that dominates. And eat a lot of prebiotic foods like onion, banana etc just before you take them to help them flourish. Eat fibre capsules too. And avoid sugar, too much salt, processed and refined and junk food as much as you an because that kills your good bacteria too. When you start to take the probiotics its a good idea to take double doses as it takes time and this speeds it up.
Huge help! Given me a bit of hope too this may make a slight difference to how bad/blocked sinus’ are! Thanks again! Thank god you posted on the fibro group, I wouldn’t of found this info out x
I've found that a lot of people who use forums dont work and have far more spare time than most people - including me as I do work and have other commitments too. If you have spare time use it to your advantage and research these things. There are loads of good websites, serious, trustworthy - one is earth clinic - you can look into any illness and any supplement on there and find out all about it through reviews from thousands of other people. all people who tell the truth about their own experiences and are not selling anything. yes it takes time, but its worth it and far better than watching tv all day!!
Completely! I mean just learning about fibro is a minefield isn’t it! So hard to know if things are stemming from that or not. Can I ask what probiotics you take ? Want to buy some decent ones. X
Please feel free to ask anything anytime, it is nice to chat to someone who understands the concept of doing their best for themselves and learning. So many people leave it all to the nhs and hang on their every word totally trusting them, then they say they have been taking such and such for ten years and it makes them feel awful and does not help, and continue to take it. Lots of doctors do overlook things or make mistakes, so it is better to cover things ourselves and make our own decisions and sometimes if necessary be pushy or even aggressive or demanding if needed.
The probiotics - dr mercola are very good, dr ohirro are very good, but both very expensive. the together ones are good but a bit cheaper,the time ones are very good and cheaper still. best if they have a lot of strains within the same capsule, capsules are a lot better than tablets. to start with take bigger doses so it helps quicker. take it after or with prebiotic foods such as onion, banana (google prebiotic foods).
that way they flourish and become more powerful quicker. avoid the bad foods as they do the opposite and kill the goodness in them.
there is also symprove which is a liquid form with 4 strains, its good but i became intolerant to the barley in it, made me feel very ill, they say it is gluten free but. there are other liquid forms ive had which work well, fairly expensive though. they usually have herbs in.
i make sure that i take different ones and switch them around so that my gut does not get used to and taken over by the same strains all of the time.
if you are really wanting to learn and have the time find out about the different biotic strains as each one helps you in different ways. some are anti inflammatory, some curb your diet, some help towards you not having dementia and so on. because your gut is your second brain and is always talking to your brain and if it is not right it can affect you with depression, anxiety, bad memory, confusion. i think there is a connection between somany people eating rubbish food, getting bad gut flora and then dementia - it is not coincidence. but of course the nhs does not deal with diet.
they never deal with people eating the right foods and not the wrong foods.
"Obviously the sinus problems are fibro related and fibro problems usually lead to polyps, it is as simple as that. You cannot have one without the other."
Sorry but your logic does not hold. I have never had sinus issues that I could attribute to fibro and never had any polyps ever. From what I have read briefly some people are more likely to have polyps and this can be down to quite a few different reasons like chronic sinus issues or asthma, hayfever or sensitivity to NSAIDs.
For any correlation with fibro a symptom or condition needs to be compared against the general community rate to even think of relating them. How many in the community are right handed or blue eyed. There will be a correlation but no actual link.
healthline.com/health/nasal... has some info on them and as well as treatments some of which you have already spoken about there are also some steps to prevent or slow their recurrence.
I've thoroughly researched the subject thanks, no need to keep re reading it all.It's very depressing stuff and can get very boring and time consuming to keep going over it - as well as there being no point. My consultant in December,the the rheumatologist told me you are far more likely to get sinus problems with fibro,also fungal infections and much else. I then checked it up and found loads of accounts of that being true. And - usually sinus problems lead to polyps.
I enjoy reading and as part of my role with the charity the information around fibromyalgia, its accuracy and the associated comorbid conditions are important to me. So when declarative statements are made then I am interested and may seek to expand on them to see if there is something that perhaps should be updated in our publications, looked into, or challenged for clarity.
There may be a correlation with sinus issues but you were saying that having fibro will usually lead to polyps which is a leap. We are a diverse community and if 20% of people may have more sinus issues than a baseline then that is statistically significant and language would be along the lines of people with fibro may have more sinus issues.
Also fungal infections or candida come up a lot in discussions with fibro but at present there is no proof of a causal relationship. It was also common to incorrectly blame it for infertility and hyperactivity among other things.
I meant that sinus infections and sinusitis often come with fibro and as everyone knows when people get sinus infections and sinusitis polyps follow later. The rheumatologist told me this and the stuff I read confirmed it. Same with other stuff including fungal infections. People with fibro may have more sinus issues will mean that people with fibro are more likely to have nasal polyps - the two go together.
Bless you wiserlady. The only thing I've done is take paracetamol and use essential oils like Rosemary and Lavender, which helps me to breathe easier. I have chronic persistent rhinitis for many years x
Is it possibly caused by reflux? I find eucalyptus or peppermint oil is best for clearing my nose, lavender is usually for relaxation and some take it in capsules to help them sleep, or put it on their pillow.
Wow! You must really be concerned about your surgery with everything else going on. Really, I am in awe of all of the fibromyalgia warriors here in this space.
As for me, I was supposed to be somewhere at 10am this morning. Still trying to get ready! But you and my fellow warriors inspire me and give me courage and strength.
And with all the pain, you can still care about me and others in the group. So, here's to you x 🎉 ✨
We all care about each other, we all get good days and bad days. I was supposed to be going out today for a meal at a cafe but do not feel up to it, too exhausted from feeling like this and about a week of not sleeping! But there are other times it is far better. I've found that people who do not have it do not get it - even if you explain it to them slowly and carefully in full detail over and over, it just does not sink in. I just told my husband about how bad my night was with no sleep. And of course his answer is oh well never mind we can go out for that meal soon! Doesnt occur to him I dont feel up to it after all that. Anyway I have work to do this morning for paying clients where it was promised by today. Felt too urgh to do it earlier in the week so must do it today. Will rest and relax after that. Am not worried about the hysterectomy, it is so much more black and white, you have it and recover, end of. Where fibro, sinuses etc go on forever.
Thank you Elaine, I managed to get my work done today, am now totally exhausted physically and mentally and resting watching television where I can turn off my body and brain! Hope you are feeling ok.
Thank you wiserlady, I am better this afternoon. Just exhausted and aching. I'm going to rest too.
Re what you shared about getting your work done, I'm glad you managed to get your work done. But then, as you know, we pay the price for our achievements.
I look at energy as if its money in the bank. I have a certain amount and I have to choose how I invest it. Take care of yourself wiserlady 🤗✨
Thank you for your post. I had no idea sinus problems were related to Fibro as I have it really bad too. I thought my sinus problems were related to allergies like hayfever, dust etc as I also have asthma. Its good to know that it could be related to fibro. It often causes really bad headaches too often related to weather air pressure like when a storm is approaching.
Hi. Some mistake silent reflux for asthma,so be sure it really is asthma. Sometimes you can get either because of poor gut flora after antibiotics,or steroids or both. Sinus problems can be caused by acid reflux - where it comes up and goes right up into nose and maybe ears and face. But of course a lot of doctors just throw a medicine at symptoms and say if you have a bad ear take this instead of sorting out what is causing it and stopping it.
Hi, sorry for jumping in but that's what my GP was thinking for my issues. Silent reflux resulting in hoarse voice, dry mouth + nose. Recent Upper GI Endoscopy found inflammation & evidence of a previous ulcer, now healed.
Their suggestion was stopping my anti inflammatory that I'm really reluctant to do. Don't believe I can continue working without it.
So now kinda left with nowhere to go & the same issues that are really difficult to deal with every day. Breathing, eating, drinking, talking all affected and of course sleep.
I also struggle with acid and can’t eat late or have to many carbs, fatty food. This makes me feel very full all the time and does affect breathing, eating ect like yourself. Very dry mouth and nose. Always wondered if this is making my sinus’ issues worse. I take omeprazole when it’s bad.
Think a lot of people - and doctors - confuse asthma and acid reflux and dont realise silent reflux exists too and is different. There is a diet you can follow that is supposed to get rid of it, you can google it. I've read reviews by people swearing they are better then. I find that sugar makes it far worse for me. How are you today and how does all this affect your life?
Horrible isn't it? How's your swallowing? Someone on here described it really well like a mallow stuck in your throat and like a clunking every time you swallow. I was also advised to take some Gaviscon at night before bed but it's made no difference to sinus/throat & mouth issues.
I’m the same! Just feel like I have thick mucus constantly stuck in my throat and nose as awful as it sounds. And no shifting it. Hoping I may see a bit of a different with some probiotics, fingers crossed xx
I have had episodes where I get a lot of rubbish going on with my throat, breathing etc and after a few months it goes away and then months later it comes back. Sometimes cannot lay down without coughing all the time, cannot bend backwards or forwards without it all being set off, or eat and the same thing happens. But it can also mean very low energy and breathlessness. Then the doctor says oh it's your asthma and I know he is wrong. Asthma is listed as something which is started off by an allergy.So it does not make sense that I can live in this house 24 7 and have six months with none of those "allergy" problems/symptoms, and then all of a sudden overnight I get all of that for three months and then hey presto it all goes away. Allergies do not just come and go like that. There is nothing new in this house that could be starting it, everything is the same.
I am feeling down at the moment because of all this - same as you are I guess?
But in three weeks I am also having to go into hospital for a total hysterectomy.
And I am 65, so am nervous about that. Of course, being me I researched it all thoroughly and asked a lot of questions before Iagreed. How long have you had your problems? How do you cope with it all generally day by day if you do not mind me asking?
Gaviscon is for reflux - GERD - so the idea would have been that it is coming up from your stomach. Which makes a lot of sense. But if it is not coming up from stomach then gaviscon cannot help. Some take peppermint capsules, some use lansoprazole, which can have a lot of bad side effects over time.
I dont know if this will be of any help to you but on days when I am not too busy with work and other commitments I make sure I set aside about half an hour to meditate and do mindfulness, at least half an hour on gentle exercise, at least another half an hour on more strenuous busy exercise, and because I have small lungs which cannot expand properly another session is spent on breathing in deeply and singing. All beneficial if you feel fine or whatever is wrong with you. If the doctor tries to prescribe medication for me I research it thoroughly, and research symptoms etc. I told my doctor I had fibro and he did not agree. Months later the consultant said I was right. But if I had not spent a lot of time on research I would never have known, had never heard of it before.
thanks. i cant take omeprazole, terrble side effects, take lansoprazole. will look into the other. i found that steroid tablets would often help the pains, aches, shooting pains etc.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Sick of feeling this way.
I'm so tired and in so much pain
Feeling so low, family arguments, why am I the only one to stay positive when tired & in pain? All I get back is negativity? 
So tired and can't stop sweating 
Got pip medical today worried sick
