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.


  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

      • Nicole Parker says:

        I too have the throat issue…over the last 2 weeks it has been troublesome. Hard to swallow & the pain is on the right side & is felt within the right shoulder blade. When I try to massage my shoulder knot to release some of the pain, it’s felt in my throat. So yes, I do believe it to be a fibro symptom. I’m 42 & have had severe fibro since 25 give or take. It took 7 yrs & 15 doctors to diagnose. Mind you, I started working FT @ 17, live alone, no family to help & no support system. I don’t even bother trying to explain to people because it’s pointless. The other issue that troubles me is the way people who suffer from fibro are treated by doctors. I must have medication to make it thru my day. It’s assumed by this wholly ignorant society that people who take pain medication abuse it & are junkies…news flash…if you suffer 24 hours a day, everyday, you don’t abuse pain meds because your quality of life depends on it!!! What little quality I have left…I’m a classically trained ballet dancer since 3 & had an injury in cheerleading which led to this issue. Now I’m a litigation paralegal. The daily stress brings flares that most would kill themselves over. Luckily my 4’11”, 105 pd self learned strengh at a very young age. Taking methadone-20mg a day, w/10mg lorcet for breakthrough pain. Also, xanax 1mg a day to help w/stress & panic attacks caused by the severity of said pain. I take as little meds as possible to just get by…I no longer am able to do all the things that I love or keep up w/chores though. Meditation helps & Buddhism. Om mani padme hum…a thousand blessings to all of you! 🌞

        • Gezelle says:

          I can relate to most everything you’re saying, especially in regard to pain meds. I would give ANYTHING not to have the need to take these. I myself was diagnosed (finally) in my early 40’s. I am now 63. I’m so sick & tired of people telling me how great I look (at times) when for the most part I’m in severe pain! Every month needing to see a pain management doctor begging them not to take away the pills that give us minimal relief. In addition to Fibro I’ve been diagnosed with Sjogren’s & show other symptoms indicating Lupus as well. I’d say God bless you & all of us that suffer with these awful auto immune diseases but I’ve lost faith in any “Loving God.” Prayer has brought me only more misery as the years have flown by. All I can say is MAY PEACE BE WITH YOU & ALL OTHERS dealing with this terrible continuous pain.

          • James milne says:

            Hi All’
            I had six weeks of hydrapool exercises and this has helped my F/M symptoms a little, I found out there is a disabled session at my local pool once a week which I am going to start as a little over a week the fibro is hitting back with a vengeance and doing the exercises again will definitely help and once a week is plenty, hopefully I will be able to start some light swimming, got to stay positive and hopefully I will get some kind of relief from this. Many blessings to all of you Fibro warriors

    • 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

      • Geri says:

        I have recently become aware of ‘nasal polyps’. I use a prescription nasal spray everyday but about 2 years ago I noticed I could only breath well out of one nostril. I’m considering having it removed as soon as I recover from my surgery to have my Gallbladder removed. Turns out it was a ‘extremely angry gallbladder’ lol, according to my Dr. It explains many many months of discomfort.

    • Sonja says:

      I had the same problems. Was checked for Vocal Cord Dysfunction ended up I had “silent reflux”. My PCP says is apart of fibro but I still don’t know about that. My voice goes in and out and breathing can be hard sometimes.

  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.

    • 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

        • Nancy says:

          I had this when I was sixty-one and had suffered with Fibro since I was nine. The toothache soon was part of a package that included a fever, back pain, nausea, and left arm pain. Then I saw a tunnel moving away and realized I was having a heart attack. After almost dying during open heart surgery I found out women have different symptoms than men so pay attention to those toothaches. Still, the Fybro is by far the worst of the illnesses I deal with. I fought it every way I could, but the fight is gone. I’m too exhausted from all the symptoms. BTW: I had the tooth pulled and it still hurts when my heart acts up. Go figure.

  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!

      • Lori says:

        That’s right Kathy, dr’S can’t or dont deal with these things (blanket made up diagnosis) too much of an epidemic – expensive and challenging to treat….. look up “mycotoxins” it will all become clear! So very sorry for your suffering, and to all those posting here, my sincere sympathy for your struggles, I know exactly how you feel, my own life stealing list of unexplained symptoms seems to know no end !
        Regards ♡

    • 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. 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.

  9. 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.

  10. 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.

    • Rosa Soto says:

      what you described above is what is happening, except for more symptoms i have, but doctors in this small island think everything is in my head. NO its not in my head. i have trouble swallowing, the panic attacks started recently, i also seem to have facial scoliosis which my doc simply will not discuss. My hair is falling out, then grows again, pain here and there. suddenly they subside. then a couple days later they show up again. But its almost always on my left side of body have had this for years None of my doctors seem to find the problem. I have had MRI’s CT scans, pTH, tsh, labs done, had barrium swallow study done, all of which came back clean. Its not easy for me sometimes i can’t even do the dishes nor clean the whole house in 1 day as i used to. Feeling hopeless, without energy and sometimes angry at this body and everyone around me. I can’t deal with this feeling 1 day great and all of a sudden sick like with the flu.Aaaahhhhh

      • Sue DeLongpre says:

        Have you ever had blood tests for E.B.V.? Or Non-Rashing Shingles? Both virus’s can lay dormant for years and hit you hard with weird symptoms. Many Dr.’s don’t think about checking for viruses. Easier to say It’s all in your head..

  11. 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

  12. Jane says:

    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.

  13. 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.

  14. 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.

  15. 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!

  16. 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.

  17. 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.

  18. 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

  19. BONNIE SPOON says:

    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.

  20. 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…

  21. 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.

  22. 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.

    • Rosa Soto says:

      I am new to this site, and from all the posts i have read, the majority of the symptoms explained are the same i experience. I have had many lab tests runned and X rays MRI’s, CT scans, but my aches and pains are there, especially if i go through any emotional stress, it just makes it all worst. Sometimes i feel like i can take the world on, and then all the rest of my days are just pains and aches, the swallowing is getting bad, can’t have a good nights sleep, my eye vision is worsening. Most of the time feels like i have the flu even though i don’t have it.

  23. 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..

  24. 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?

  25. 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

  26. Michele says:

    Anxiety and panic attacks are common to fibromyalgia. I get them often. Haven’t had throat pain but I am always congested. I figured out that by lowering the temp in my house at night does help me breathe easier when I sleep. But then I live in Florida and get hot flashes on top of everything else.

  27. Barbara Nelson says:

    Wow, just Wow! Finally an answer to my chocking. I to can sound like a lifetime smoker at times. I have the stopped up nose at times, and my husband said my snoring has increased. I will be having a sleep study soon as my doctor thinks I am not getting to RIM sleep. I have lost one tooth due to dry mouth. My eyes are dry and I have other signs of Sjogrens. It sounds like it’s time to find an ENT with a speciality in Fibromyalgia if that’s possible 😂.

  28. Bertina says:

    A few months ago I had 60% of the of inside of my nose/nasal cavity removed due to always being stuffy. It has helped some but I still get stuffed.

  29. Ivah Kukler says:

    I was diagnosed with fibro about 25 years ago and I am finding that it has gotten more severe with time. I also have multiple, but minimum autoimmune problems: lichen planus, spots of psoriasis, etc. But I have one condition that is fairly recent that I do not see in any of my research: irritation inside the nose with red shiney mucous on both sides of the septum with occasional weepy bleeding. There are also small fissures on the inside rimming the nares which never seem to go away totally. They are quite painful and at times look infected. I would love to hear from anyone who might share similar conditions.

  30. Adonica says:

    I also have fibromyalgia. I got diagnosed with fibromyalgia almost 9 years ago. Before I got diagnosed with fibromyalgia I was so sick and tired of every doctor telling me that all of my pain, joint pain and me telling them that I am always in pain. Also how tight my shoulders, back, legs and every muscle and joints are always in pain. Yes I have pain medicine and muscle relaxers that give me some relief. I’m also on medication that is maid for fibromyalgia. I have done acupuncture, I have gotten massages,swimming, workouts, walking, having my pressure points hit and also massaged. Everyone that finds out that you are taking painkillers think that you are abusing them. No I am in pain 24 hours a day 7 days a week and 356 days. I mean every day. I would love to be someone who is not in pain every day for almost 9 years. Not only do I have fibromyalgia I also have joint disease, disc degenerative disc disease. Also arthritis in every part of my body from head to toe. I have tried everything that is natural. I have not tried smoking Marijuana yet . A lot of people that I talk to about my problems ask me how come I have not tried Marijuana yet. They tell me that they have chronic pain and they were proscribed Marijuana and it works. I have a full time job and my boss knows that I take pain medicine and also muscle relaxers. I also have a symptom that not all the time when I swallow food that it feels like food gets caught in my throat. I get sick and bring food up. Then I can not eat after that happens.

    • HJ says:

      An ENT (ear nose and throat doctor) who deals with the throat may be able to help. That was on a questionnaire I filled out in an ENT’s office. They do specialize so if you schedule, make sure you tell them you need to see someone about your throat. I saw an ENT for vocal cord dysfunction. It felt like asthma and I couldn’t breathe. I think swallowing problems can happen with vocal cord dysfunction too but I don’t have swallowing trouble myself. Please don’t always assume it is fibromyalgia. Take care!

  31. Terry says:

    I too as well have Fibro and many more diseases going on! I thought I was the only one whom after talking for awhile feels as though my throat muscles start closing up and it literally hurts to talk!All the problems you mentioned I have as well!
    I’m sorry you are going thru this as well and I have checked with an EMT before and they said it was a side effect of Fibro!
    I hope you as well as me and others could find some relief from this but until they do more funding to set up clinical trials or more research I don’t foresee anything happening any time soon!
    Best wishes to you and the others whom have this terrible disease!

  32. MiMi says:

    I wanted to comment about the throat issues. I got a cough that I could not get rid of and soon could not swallow as well. I ended up having parathyroid issues which required surgery. My bad parathyroid gland had attached itself to my esophagus and was the reason for my swallowing problem and my coughing issue too. My blood calcium level was 88 on the day of my surgery…..the normal level should be 9.2…..the doctor said that it was a wonder I did not have a stroke or heart attack. Now I have no idea if this health problem was related to FM or not. I do know that people who suffer from FM should ask the doctor to check their Vitamin D level…..which is so very important. Low vitamin D can cause some people to have additional pain. Most doctors do NOT check this UNLESS you ask for the test. When mine was checked it was 12 and it took me a very longggggg time to get my level back up to within the *normal range*. It made a HUGE difference in my pain level.

  33. bhusebye says:

    I am having troubles with my voice. I used to have a 4 octave voice and this fibromyalgia has been tearing me a new one. I have asthma as well and my upstairs neighbors smoke, moved in after me and say I should move out. Also I am sick of the CDC and their dosage guidelines. In June they are taking the rest of our meds and sticking us with 100 mg. I want to give the conservative pricks some pain management or maybe just some pain so they understand what helps and what does NOT.

  34. San Dee says:

    I have the same problems. I had to take a leave from work as a teacher. After talking all morning, by 11am, my throat would start hurting and I could not talk so much anymore. I would just choke on the spot for no reason at all. Then I would just forget what I was teaching and my day was over by 11am. I also always feel congested that at nights when I start getting my deep sleep, I choke as if someone was choking me and I start coughing and coughing. Horrible feeling. Same thing when I try to eat, my throat hurts and the food is tough to get down as well as the drink. I get a gagging feeling. And the list goes on and on. Never ending!
    Before I even knew it was fibromyalgia, my husband thought it was all in my head. Now that it has a name, he takes time to read to understand it better. Thank God for that!

  35. Kimberly Adams says:

    I am in month 27 of the Guaifenesin protocol and although nearly 80% of my lifetime of FM symptoms have now cleared, a tight throat remains persistent. Some days it feels like it is closing up and now I can recall the years when this part of the illness was “setting in”…lots of coughing and throat clearing. I now know this is a sign of healing a these symptoms under protocol, a return of symptoms on their way “out”. Deposits in my throat were severe, and I now know that membranes and sensitive passageways of the body really collect the FM phosphates quite a bit. Hence bronchitis and IBS, too. SO glad to have found a way out! I now have one of the “TOP” rheumatologists in NYC working with me who had clients get fully well 20 years ago using the Guaifenesin protocol, and they are still well today. I will be glad when this tightness is all gone…my singing voice will be glorious again (someone please tell Lady Gaga that this protocol is the only real way to get well). It saved my life, literally.

  36. Pam Catlin says:

    I, too, am a senior lady and was diagnosed with FM over 30 years ago although I’m sure I’ve had it longer. I had read about Guaifenesin several years ago and noticed I felt better when I took it, but then it was taken off the shelves at the pharmacy. How do you have access to it? Did a doc prescribe? My docs have tended to “go along with” the fibro dx, but do not deal with it. When I speak of pain, my current PCP just replies that it’s common with people who have FM. A couple of weeks ago I was also diagnosed with Myasthenia Gravis. While I am still waiting for an appointment with a neurologist, my husband and I have been amazed at the consistency of treatment approaches we’ve found online for MG. No such thing with fibro. Isn’t that interesting?? We just have to fend for ourselves, more or less. But, by the grace of God, my symptoms are not unbearable, and I always feel so badly for folks who report how awful fibro makes them feel. Mostly I’m just fatigued with a consistent low level of pain. Out of a 7 day week, I usually have about 3-4 good days. Never had to be hospitalized for the pain. My heart goes out to those of you who have suffered so severely!

  37. Cassandra says:

    I’m a researcher for Fibromyalgia & would like to share some of my discoveries from over the years of my studies and also, I have Fibromyalgia. I am no longer on meds of any kind. I have learned how to stay calm, be positive, relax, control my pain spikes, lessen my muscle tension and have learned how not to be in as much pain with foods I eat. Life is so much better for me. Though I do still suffer with pain spikes, muscle spasms & muscle tension, I am happier than I ever could have imagined. It’s also helped me lose a lot of weight, gain good energy & fell more safe & secure about who I am and how other’s look at me.

    Just a few notes here on the issues addressed in this video; about the panic attacks. I want everyone to realize that Fibromyalgia effects the adrenal glads severely. They are located above the kidneys. One thing you need to be careful of are diuretics. You can find them in PMS pills for women’s menstrual cycles and also in certain boxed or premade dried goods. They are used for loosening up hard stools in the bowels. Stop using them immediately. These cause your adrenaline to spike, creating an uncontrollable feeling of nervousness, being uncomfortable and uncontrolled aggressive outbursts of panic. Many Dr.s confuse these adrenaline rushes with Bi-polarism and put you on unnecessary prescription meds with harsh side effects causing more unneeded health issues. Please be careful of what you take. If you know of something natural that makes you have a lose stool, than use that instead. People with Fibromyalgia respond better with more natural products than with prescription or premade medicine. For me, I just drink apple or prune juice. It really helps.

    Stay well hydrated with a pH balanced water. Not all bottled waters that claim they are pH balanced are actually pH balanced. Get a 1 gallon Tea jug and fill it with filtered water. Slice up a fresh lemon and add to the water. Then let the water sit for 6 hours before you drink. This will pH balance your water. All you need is 3 liters a day.

    Lectin proteins are a huge cause of nerve pain. You’ll want to limit your intake of them when you’re having a bad time with the extreme pain. Do not cut out because you do need legumes in your diet. Your body will let you know when to lay off of them. Lectin’s attach themselves to the nerves and are like acid witch irritate the nerves and make you in turn on edge and irritated on top of being in pain. Also, other irritants are white cane sugar (It’s processed & bleached), candy or deserts with high fructose corn syrup, enriched wheat flour, corn syrup, blue dye, red dye, yellow dye. Basically if you can’t understand the word and it’s about 12-18 letters long, it’s most likely bad to consume! Moderation is the key. You will learn your limits. Listen to your body. It talks to us all the time.

    Foods with high lectin proteins:
    white potato, tomato, peanuts, soybean, lentils, whole wheat, corn/maze, eggs & dairy, avocado, celery, garden asparagus, edible mushrooms. All these turn into sugars in our bodies. Their chemical make up and other foods we pair with them, depend on how bad the pain will be later. We all have different eating habits, different cultures & such. Our parents have taught us how to cook and pass down their eating habits to us, blood related or not. Our community have taught us how to eat as well. Teach yourself how to know what’s in the foods you eat. Fibromyalgia is NOT passed down through genetics. It’s passed down from the eating habits we learn & the chemical build up we create over time from simply not knowing any better.

    Multi-vitamins are another big issue. Many take these vitamins for better health or while you’re pregnant. You may start to feel great for awhile, but than you drop in health again. That’s due to the building toxic levels of the vitamins your body cannot flush or use due to you taking a multi-vitamin instead of using each vitamin separately and correctly. Study up on how the different vitamins help break down the other so your body can actually use the vitamins you need. Otherwise you will only use a few vitamins in the mix and the waste won’t leave your body, making you more ill after continued use. Possible weight gain, sluggishness, muscle fatigue and more. Please be good to yourself.

    A note about the throat symptoms. If you cannot swallow your food, it is usually a reaction to your bodies high lvl of gallstones in the gall bladder. Drinking about 2 oz of lemon juice will help this reaction by cutting the fatty mass of the stone down and allowing it to pass safely out of the little wholes the bile comes out from. Digestive juices are blocked when you have to many stones in the gallbladder, creating a warning pain signal that says “STOP! I can’t do my job.” Eating rolled oats by boiling them, adding a tablespoon of honey and a tablespoon of coconut oil will help the body expel the gallstones from the body. I recommend eating it with out sugar, butter, or syrup. Eat at least 1 bowl a day for about 3 days. You may have stones come up through your tonsils.

    In my research I’ve also discovered that when dehydrated all the liquids in your body that are already restricted from flow by the muscles, ie blood flow, this will cause you many internal issues, such as organ failure, or heart palpitations. Dr.s misdiagnose a heart attack and may rush you in for unnecessary surgery. So please stay hydrated.

    Relaxing is so difficult with Fibromyalgia. Even if it still causes you pain, cold packs, warm packs, 15 mins on and 15 off. Than lightly massage the areas most in pain. You will have to fight through the pain, but it will ease. If you have electro-stem therapy available, I highly advise using it. Once again 15 mins on, 15 mins off. Light stretching also helps. Do not over stretch. Many over do exercising & stretching, than end up to sore, or feel as though they’ve pulled a muscle. Give your body time. At the first sign of fatigue, sit or lay down before you push your body into a pain attack. Take care all. I wish you well.

    You can find me on Facebook https://www.facebook.com/Vestasha

  38. Lindsey Murphy says:

    I have the same problem with my throat. Or I did. I went to get an endoscopy because it took three swallows to get food down. Turns out I have narrowing of the esophagus. They stretched my esophagus at the same time and it helped significantly. A large majority of people need it stretched again after a year but I haven’t needed it. I’ve also had esophageal spasms which was some pretty incredible pain. Only thing that helped that was Nexium. I no longer take it, i took it for several years, and have symptoms from time to time but it’s much better than it was.


    I too, have the same problem with my throat. Sometimes I wake up with a sore throat. Other times after talking to people for 12hours at work, I find my voice becomes raspy and my throat hurts. I am so happy to hear that this throat situation is definitely part of the FM disease. I was recently diagnosed with FM and the more I research the disease, I am convinced that I have had this for years. The only reason I even went to see my doctor is because the trouble I was having with swallowing. I had a full work up for RA which was negative, and she finally diagnosed me with FM. Upon further research I discovered I am practically the poster child for FM, with 95% of the symptoms, including 18 of the 18 pressure points.. I am currently on Neurontin and Celexa for 3 weeks now, and this seems to make the pain more subtle and the swallowing easier already. Before the throat situation I was simply enduring the constant soreness and fatigue, thinking I was just over worked and stressed, and aging, as a woman of 45yrs old…Now I feel that this is NOT ALL IN MY HEAD and I feel validated. Finally some answers!!

  40. linda says:

    I have every symptom related to fibromyalgia, and also have Hashimoto, IBS, LPR, Reflux, Psoriatic Arthritis, Gut dysbiosis or leaky gut, low vit D, allergies and chronic sinus, leg cramps, muscle spasms, type 2 diabetes, psoriasis but only of the nails and one elbow. I have lost so many toenails..they just fall off and some get psoriasis on them and slowly peel off and what a mess that is. I take no pain meds. I do not even use NSAIDS cause they say they do not help anyway. Never really helped me. I was on TRamadol but stopped about 3 yrs ago. Have horrible insomnia my entire life but I take Lorazepam at night and do sleep. I have anxiety and depression and panic attacks. I know symptoms from one disorder or disease can overlap so when they do it just exacerbates the pain or feeling. Sometimes I feel like my body has a low vibration. Happens once in awhile usually when I am laying down. Have had neck pain for over 7 yrs and it is better now but do get tension headaches from it tightening up. Itching from fibro, Hashi and feeling like my skin is burning and the ph is off. If all this happened at once I would go nuts. Thankfully it is on and off and random and migratory and then I will catch a break and only have 3-5 symptoms at once. The pain I know primarly comes from the fibro..it has always felt like it was in the ligaments or muscles around my joints. Chest tenderness at certain points all around my ribs and upper chest was what alarmed me to this diagnosis. I think I have had it for 30 yrs or more. All of a sudden I had a lightbulb moment and fibro came to the forefront. When I really researched it I saw that most with Hashimoto have fibro. People with IBS, which i have had since I am a child have fibro. They all inter-relate to one another. The stomach, the gut bacteria are the nucleus of all diseaes with auto-immunity. I seem to have so many but think if physicians can get on board they would be more helpful in our journey. Most GP’s have no knowledge on how to treat any of these issues correctly and will not even consider that they all correlate with one another in some way. Sorry for writing so much. Sometimes just putting it down on paper or in a forum such as this can help.

    • Lotty says:

      Dear God! I will keep adding you in my prayrs for the rest of my life, for Him to give you some release and a breake. You realy deserve His attention. I`m not realy an active religious person, but this realy got me.
      My heart goes out to you, Love Lotty

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