3 Symptoms of Severe Fibromyalgia Nobody Talks About

Lorna Effy talks about some of the symptoms she’s experienced with fibromyalgia that aren’t often associated with the disease.

Nine possible causes of fibromyalgia to discuss with your doctor.

Lorna explains that she has three ongoing issues that she attributes to fibromyalgia, but can find no online information about any connection between them despite talking to other fibromyalgia patients who also have the same symptoms.

Lorna describes the ever-present problems she has with her throat, where she feels her throat muscles are not strong enough for her to be able to eat enough food and she often experiences pain after talking for a while. She also goes on to share how her nose always tends to be blocked and the congestion was making it difficult for her to sleep. Finally, Lorna says that since she’s had fibromyalgia she had also started suffering from acute panic attacks.

Eight facts you probably didn’t know about fibromyalgia

Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

50 comments

  1. HJ says:

    I’d see an ENT. I’m getting checked for vocal cord dysfunction. I read about trouble swallowing with vocal cord dysfunction and am not sure if this is what you’re describing but no matter what the issue, a good Ear, Nose and Throat doctor (also known as an otolarygnologist) can examine you.

    Also, to folks who experience new symptoms, talk to your doctor or pharmacist to see if any of your meds could be causing symptoms. I was having dry eyes and was about to go on a new med to treat the problem because it was interfering with my job (all day at the computer!). I came off a medication and I no longer have the issue. We’ve chosen an alternate medicine that so far doesn’t seem to be causing me side effects. (fingers crossed)

    Please do NOT assume all symptoms are fibromyalgia. I wouldn’t have gotten my sleep apnea diagnosis if I dismissed some of my symptoms.

    • Nancy says:

      In addition to severe fibromyalgia, I have chronic congestion and have been diagnosed with Vocal Cord Dysfunctuon which seems to mostly be a problem when stressed. The VCD appeared about five years before my fibromyalgia got to the state it is now. I agree there is a relationship. I did professional speech therapy, relaxation exercises and basically don’t worry about it.

      • Christine Kerkhof says:

        I have been seeing a endocrinologist about my throat as I have a lot of trouble swallowing food, seems to always be congested with phlegm. My nose blocks up when I’m sleeping, I wake with a dry mouth. My eyes itch, dry as well. I’ve just gone through a medication change but now I’m in a great deal of pain but my moods are better, I’m not so down, angry as I was. Thank you for helping us understand more about ourselves. Regards CGK

    • dorothy dawson says:

      I HAVE THE THROAT PROBLEM AS WELL as many of the regular things that go with fibro i am a senior now i choke when swallowing even saliva will do it and if i talk steady too long throat becomes raw feeling i went to the throat eyes and ear dr in peterborough and she was not good i thought but found nothing wrong…. so problem continues

    • chey says:

      i have had fibro for yrs i have throat problems and i gained weight i cant lose weight i have tablets to help relax the muscles as my baberium swallow shows food goes down then stops then drops
      i cant breath through my nose and to add to it i have a huge sist on my throat they cant remove as its to close to my main vains , the nasel sprays dont work as i cant breath up my nose

  2. Sinead says:

    I love recieving these emails, and your top 10 tips are amazing most have already been told to me by my Husband, but now that I read them, they do make sense and the resting bit is something I don’t do, and then when I over do it, I spent 1/1.5 days in bed…. Thank you again for these emails….:-)

    • Adrianna says:

      This sounds exactly like my life. 😕 The second I feel a bit stronger I just want to do and make up for what FM is robbing me of. My life! I just spent the last day and a half resting laying around trying to get over this fibro flare up. Seems to be getting worse and worse for me on a month to month basis. This sucks so bad! 😩

  3. Marilynne Rowland says:

    Thank you for this! I have struggled with the nighttime stuffiness many years. Was told I had to use a CPAP machine which gave me panic attacks through the night. I have given up dairy which has helped a bit and take supplements and acupuncture as well. Went to bed and awoke last night just as bad as ever. Had thought prior to your posting, might be allergies in Ohio Valley.

    • Tanya says:

      I also are in the Ohio Valley and have put my stuffiness to allergies. Just wanted to let you know, you are not alone.

    • Sharon Atterbury says:

      In 2011, I had sinusplasty done (they stretched my turbinates) on Friday and I returned to work on Monday. I suffered with the same for many years. The surgery has been a life saver.

  4. James milne says:

    Yep in fibro there symptoms upon symptoms for all sorts of stuff going on with the body toothache is the worst for me, I have now came to an understanding that the symptoms will come and go from one to another etc, and being in acceptance has helped me a lot in coping along with meditation

  5. Karen says:

    Lorna, Please get tested for Sjogrens Syndrome. I have Sjogrens, FMS and the Epstein Barr Virus. For almost 50 years I’ve experienced these same symptoms which are very common with Sjogrens. Good luck!

    • Lynnr says:

      Lorna, I agree with Karen. Your symptoms sound Autoimmume. You really need to be tested to identify if it’s an Autoimmune Disease causing it. Ask for a referral to a rhematologist if you don’t currently see one. Hope you feel better.

    • Mary says:

      I have sjrogrens as well. My doctor said they are doing studies now to show that auto immune disorders go hand in hand with fibromyalgia. It is the cause of my trouble swallowing my stuffiness and my eyes. Amazing advice!!

      • Jeannie Rogers says:

        Been having allergy and sinus problems for years.Wake up at night with severely dry and congested.Constant frog in my throat,my ears constantly draining.Flonase and claritin seem to help.Dry mouth and dry eyes too.Humidifier helps to keep air clear and cool.

  6. Vanessa says:

    I have the swallowing problem also, I thought it was just me…sometimes I have to think about swallowing, before I can swallow…it’s so weird and scary..

    • Kathy says:

      Several years ago when all this fibro crap started with me, I had my throat stretched. It was wonderful for awhile. I think I need to have it done again. I suck spit and choke all the time. Food gets stuck in middle of my chest and I have to get a sip of liquid to get it down. It hurts like crazy. I am thinking that fibro is a blanket diagnosis because of all the stuff that doctors cannot or don’t want to deal with!

    • Karen says:

      I am experiencing the same throat problems. And sometimes it will feel like food clumps up in my esophagus, I have to take smaller bites and drink with each bite. But I have problems chewing because of dental problems that I cannot afford to do anything about. I just read up on Sjogrens yesterday and laid here crying. I have every single symptom listed. The severe dry eyes, skin, as well as others… I get eye drops, use them and five minutes later my eyes are so dry and feel almost as if there is grit in them…

      • Jeannie Rogers says:

        I have the same symptoms,some I know are from meds,that are drying.Seems like I’m never fully hydrated,have had several episodes of heat sickness in past.I’m hot blooded and literally throw off my body heat.No one can sit close to me,because they start sweating.Wondering bout sjogrens now.

      • danita says:

        gritty/sensitive eyes is common with fibro. i got sent from an optometrist (for glasses) to an opthamalogist (eye specialist) for “some irregularities” thought to be part of chronic dry eye. i ended up needing a steroid drop off and on. *2 weeks using, 2-3 weeks off, 2 weeks using, 2-3 weeks off…* helps very much with the sensitivity and gritty feeling.

  7. Julie says:

    The congestion, I have a lot of that too for years now. I use a version of the neti pot, and that helps a lot, and I use antihistamines if it gets too bad. The panic attacks have been an issue for me since the FMS started, and as far as I know that is part of it due to the high anxiety. I get a sore throat when talking to much and sometimes I get a sore tongue from that as well, plus the jaw stiffness.

    • Loraine says:

      I have the congestion as well and use NeilMed morning and night. I also have had a continual mild cough. I have immune deficiency asthma but this is not my asthma cough. I also get a sore throat if I talk too much.

  8. Maureen Dowdell says:

    Lorna, I had similar symptons. You might read Dr. Jamie Koufman’s works on acid reflux Her books are searchable on Amazon.com.

  9. StevefromMA says:

    Lorna, I have throat constriction and swallowing problems assocated with fibro, thoroughly checked out. Congestion also, has led to severe scary sinusitis. No panic attacks though, infrequently, out of nowhere, I have a day where my whole body feels “wired.” Get checked out but good chance all fibro IMO.

  10. open4thot says:

    I hope you have had a full panel Thyroid test (TSH test isn’t as thorough). The link between Fibromyalgia and Thyroid dysfunction is often overlooked.

  11. Helen Gardiner says:

    I have just been diagnosed with FM after many years of being told my symptoms were all in my head. In addition to the chronic pain and insomnia I also have lost a lot of my voice over the past 5 years. I don’t have difficulty swallowing but talking is a strain and I loose my voice completely for several weeks a couple of times a year. I am not congested but my nose runs significantly every morning for an hour or so. I started having panic attacks in October/16. I was managing with my symptoms very well until I had an avalanche of stress I could do nothing about (job eliminated, father dying, new relationship, moving, etc.) in July of last year. Since then I feel like I’ve aged 10 years. I have found a solution that works extremely well for me: Ayervadic medicine. I spent 2 months in India at a certified Ayervadic hospital and the change in me was nothing short of miraculous. Unfortunately, it is very difficult to keep up in North America…but you can do some parts like yoga, meditation, mindfulness and keeping to a healthy routine. I still have a lot to learn about this. I’m 58 and thought I was heading into the best time of my life. It’s hard to still think of it that way.

  12. Glen says:

    I’ve never had throat problems, but the other 2 symptoms very often; recently started taking Cipralex & it seems to be helping with the anxiety and panic attacks

  13. Jane says:

    Lorna,
    I am glad you have posted about your nasal problems, throat problems and your anxiety attacks. I too am experiencing them. I have found a wonderful message therapist who has been a tremendous help with the neuromuscular issue. I see him for one hour every other week. It might also be helpful for you.

  14. Jane says:

    Lorna, I went to an ENT for the sinus/ ear problems. He did a CAT scan and said it was an abscessed tooth. I then went to the dentist who took another X-ray and he said there is no abscess. Round and round we go! I also started having anxiety attacks after this past election. Friends are attacking friends over politics. I have never seen anything like it. I just have to remove myself or I will “shatter”. It is a horrible feeling. Thank you again for your testimony! It helps to know others are dealing with the same kind of issues.

  15. Mo says:

    I’ve experienced similar symptoms at various points in my own illness. It’s true I think that there are many symptoms not listed, but I also believe often times there are overlapping conditions so I agree it’s important to look for individual causes but not to become too hyper-focused on a diagnosis and often times medication side effects are often to blame. These three symptoms together sound a lot like histamine intolerance (mast cell disorder) with a persistent nasal drainage you could get a very sore hoarse throat, and histamine intolerance often coincides with gerd or acid reflux type disorders that could cause a sore throat and trouble swallowing, mast cells also cause an anaphylaxis like reaction that could feel like a panic attack. However, autoimmunes disorders like sjogrens or myasthenia gravis fits these symptoms too, even a thyroid imbalance could cause this. The thing for me was to recognize my body was asking for attention and balance and I had to really learn to listen, I’ve let go of the hunt for the perfect diagnosis, there isn’t one that will be satisfying because the answer is always change.

  16. I wonder if she has had a heavy metal challenge. Many with FM actually have infections and can’t detox heavy metals. They also are very acidic and need to akalize the body! Remove the stumbling blocks like metals, toxins and parasites and give the body organic whole live food and nutrition and you can get well! Some people are dealing with Lymes infections that haven’t been diagnosed!

  17. Amanda M says:

    I have the same thing. It just doesn’t affect my sleeping, but yes I have blockage in my nose and swallowing its hard at times or I feel like something is stuck in my throat. I also vibrate like internally and nobody can tell me why……. Any suggestions as to how to stop the vibrating would be great.

  18. Van says:

    I have the same thing with my throat. It’ll feel like I have a sore throat, but I’m not actually sick. Then, the muscles there will be so sore and achy, making swallowing difficult. This happens on and off for me, plus congestion and feeling like my chest is tight. I have fibro + Sjogrens, and we’re looking at RA as well. But I would encourage you to be tested for Sjogrens, as they can be very similar. Thank you for speaking out about this, I am so glad not to be the only one with these issues and diagnosis.

  19. Storm styles says:

    When I’m in bed it feels like my. Bed is shaking trembling I can feel it and times I’ve been laid there and it’s like something or someone is there it’s an object moving closer to me I wake and scream for my 11 year old boy it’s like a light I sweat like crazy in bed my whole body aches I have restless leg syndrome I can have one good day and have to be bed ridden for three days I choke on my own slather and have trouble swallowing I often loose my. Voice which requires steroids it feels like someone has smashed me over the head with a brick I had perfect eyes now I’m
    Blind in both sides with sever bilateral tunnel vision I’m a single mum with two kids with disabilities and have no auppport at All I. Relieve I have autoimmune disease to I’m at ot specialist Friday sow will be requiring a neck brace when my neck goes into spasms and leg braces it’s like when your laid with your legs down straight they turn in right o have to kind of turn them outwards it feels like there twisted and they have to be on a cold spot I’m hoping this will be familiar with some of you xx

  20. BONNIE SPOON says:

    Hi,
    I have fibromyalgia and just found this website. It is amazing to read.
    I have problems with swallowing and choking. Plus, oft times wake up with a sore throat. Yes, part of it is GERD, but there are times when I am so careful what I eat and my throat/voice/vocal cords are a big mess! Interesting to hear that it could be connected to fibro.

    Amanda…I also vibrate internally….I tell my husband I feel like electricity is running through my body, especially on days when I push myself. Do you have the time to lie down? I know that when I lie down the vibrating gets worse, but I think that is because, the only thing I am doing is lying down and not doing any other movements. I try to take naps (not often). It takes me about 45/50 minutes to try to fall asleep, and I don’t fall asleep a lot of time, but the lying down, gives my inflammed body a chance to go….aaahhhhh.

    • Marie says:

      Hello to everyone ..
      My name is Marie and I am also new. I will be sharing the symptoms I experience secondary to GERD if you prefer,( digestive problems)which of course begins with your first “bite”. More often than not I have a problem swallowing due to esophageal spasms, which can be frightening , however, I wait until the spasms have abided then I continue eating. My throat is frequently sore or hoarse (especially if I am tired),again related to my GERD (although I take Nexium), then at least three times a year I lose my voice (I am sure that probably pleases many people ha ! it is to laugh !) due to laryngitis which is related to the hoarse voice and secondary to GERD and or virus.
      I do hope the above can be informative to someone .
      I would like to thank everyone for being patient with my English grammar mistakes and my Fibro-fog (that is the most difficult symptom to accept !!) , because I know that I am not stupid ……however……
      Warm and gentle hugs to all

    • Sandra says:

      Regarding the “vibrating” — I have FMS and myofacial pain (yes, two different things!) and I notice it when I overdo. The only thing for it is to rest.

  21. Debbie N says:

    I have had FM since I was 14 years old due to a very traumatic experience in my life at that time. But what set it off was when I had to have a 3 phase hysterectomy at the age of 30-32. The last surgery changed my life. Not only was I sent into surgical menopause but they had to go “searching” my body for the left tube and ovary. They jostled my organs around during their “searching” and eventually found them on the back side of my hip. Ever since then, I have not been the same person. My life has been just one failing body function after another. However, I keep my head up and keep pushing forward. I have acquired migraine headaches since then and then the eventual diagnosis of Fibromyalgia in 2006.
    Ever since the diagnosis, I have lost my job and things have gone into a tailspin down the tubes. After I hit rock bottom, I decided to pick myself up and fight against this horrible disease. But then I hit another wall when all of a sudden, my food was not going down my throat and I was literally choking on my food. I wasn’t able to swallow a lot of bigger items. It wasn’t until I tried to swallow a Nyquil tablet when I had the flu and the pill got stuck in my throat that I decided that I thought I better get this checked out.

    So I went to my general practitioner and she ordered an upper GI. Those things take a little bit of time to have the pictures. Well, mine didn’t take any time at all. The radiologist conducting my test was done in under 5 minutes. I asked why it didn’t take longer and all he said was that he has all the pictures he needed to come to a diagnosis. I wanted to know what his thoughts were, but legally they cannot inform us of the findings. So I waited and waited for my doctors call and I got called into her office and got told that there was something called Esophageal Webs, and got sent to a GI doctor.

    This GI doctor not only did a full exam and was trying to find out why, but sent in biopsies. Thankfully, it was not cancerous. But I have to go every year to have my throat scoped and stretched to take care of these “webs”. It is not fun and has made my esophagus fragile, but at least it doesn’t get food stuck anymore.

    Just something for you and your doctors to think about and look at in the future. Yes, it is rare, but also something to be aware of.

    Thank you for your time…

  22. Em says:

    I do not have acid reflux or any esophageal problems but do have problems w/ swallowing and even speaking at times.
    Thank you for this info. An odd illness for sure. None of the meds help and I also have TMJ and osteoarthritis. I just keep plodding on. Body all in knots today.
    At least I can take care of myself and still drive most of the time.

  23. Terry says:

    I have the same problem while talking it feels as though my throats is closing up and I struggle to get words out and it’s quite painful. Even eating at times it does this as well as having spasms in my throat.I mentioned it too my ENT and he didn’t take it serious. It’s good to finally find out someone also have the same symptoms. Thanks to all who posted that you have it also where at least now I knew w its not my imagination!
    Best wishes to all with this and the other horrible diseases we must endure daily!
    I was diagnosed at 38 but I feel as if I’d had it much longer. I’m 65 now and never go thru one hour or minute without terrible pain and get new and differe symptoms from time to time.

  24. Jeanne Winstead says:

    Hi all. I was diagnosed with fibro about 15 years ago, misdiagnosed with lupus about 10 years ago. I was not content with just the diagnosis of fibro, which is a set of debilitating symptoms not necessarily a diagnosis.
    5 years ago I was diagnosed by a geneticist with Ehlers Danlos, hypermobile type. It’s a genetic disorder of faulty collagen, which means it runs in the family and you LOOK normal, but your body’s building material is faulty. Poor “glue.” There is no gene mutation discovered yet for the most common kind, so unless you are looking for other diseases that come with it, it won’t yet be found in your blood tests. It’s not rare, just rarely diagnosed.
    Hallmarks of this commonly missed condition are thyroid conditions ( it might look normal but it’s built with faulty collagen so will malfunction in many ways)
    MCAS which was mentioned above. http://www.mastattack.org/2014/11/mcas-respiratory-symptoms/
    Dysphagia ( throat issues) are so common. Throats constructed with poor collagen just don’t always work well. Add GERD to the mix, because that stomach sphincter muscle is also week and poorly constructed. (can’t bend over without dinner coming up?)
    We have all levels of depression and anxiety which we consider physiological. If your body’s autonomic system is malfunctioning, you’re going to get all manner of issues from blood pressure issues, heart rate irregularities, high anxiety with panic attacks, vasovagal symptoms etc.
    Some of us have hypermobile joints and soft stretchy skin and some of us don’t. I am more stiff, while other family members are very flexible.
    There are several
    types of EDS but the diagnosis criteria changes frequently. Look up EDS 2017. There are levels of severity. Some have dangerously poor collagen, most just have enough to cause multiple seemingly unrelated issues, head to toe, inside and out. If you go to an EDS website and don’t see yourself, try googling one of your conditions with Ehlers Danlos. For example, google Nosebleeds with Ehlers Danlos,
    Hashimotos/ Graves with Ehlers Danlos, allergies with EDS, restless leg syndrome with EDS, eye problems common with EDS/ dry eyes and or Sjogrens, IBS with Ehlers Danlos, thyroid nodules, ( get any and all cysts and nodules checked!) ovarian cysts, trouble swallowing, autoimmune issues, joint problems, fibro, tooth and gum issues, low
    (plummeting) vitamin D and maybe iron, early onset ostoarthritis and osteoporosis, high cholesterol, heart irregularities/murmurs/mitral valve issues etc,kidney stones, diabetes, gall bladder issues, heavy menses,vertigo, ear and hearing issues. Let’s not forget our higher incidence of autism spectrum disorders, ADD, OCD, SAD, SPD, dyslexia, dysgraphia etc.
    Each family member can get totally different symptoms even though we generally have the same type. It’s very confusing, but so validating for those who have been told that it’s all in their head. It’s definitely in our heads, but it’s in the rest of our body too! Find a doctor who knows how to help you with this or they will look at you like you are nuts. ( been there, done that?) Google Ehlers Danlos doctors in your area or join a social media group put together just for that reason. Get your family health tree up to date and be very thorough! Make phone calls. Go through medical records. It’s so hard when you don’t feel good, I know.
    I hope you all find answers. I feel for each and every one of my fibro family! Gentle hugs..

  25. Denise Bault says:

    Was actual happy to see folks talking about the “vibrations”they feel. I have those too, as well as nasal problems. I feel like I’m congested, yet I blow my nose and there’s nothing. I thought my throat problems were due to having allowed an ENT to operate on me. Due to diagnosed sleep apnea, he went in and took out part of my uvula. (That little hanging thing in the back of your throat.)
    Hasn’t really helped me get better sleep, although the doc was quite certain it would! Can this illness get any more bizarre?

    • Loraine says:

      I feel these “vibrations” too. I was beginning to think I was crazy!!! I have the continual congestion and a mild cough. I have immune deficiency asthma but this is not an asthma cough.

  26. Eleene Upchurch says:

    I think the hardest part of Fibro is you look well yet you feel so weak, no endurance, always fatigued, live in loneliness. Bathing should make you feel better and relaxed, not me, need a nap to recoup my strength. Without a computer would have no social life except for the couple of hr I have with my husband in the evening, when he comes home from work. Weather fronts make it impossible for me to move freely and get out of the house to even go to church which I love to do. Before Fibro I was the one, that planned everything now, I just sit here and do nothing. I owned Wedding Planning & Silk Florist for 15+ yr and was very busy doing 3 wedding a week-end

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