While the hallmark symptom or sign of fibromyalgia is chronic widespread body pain, that is not the only symptom of fibromyalgia. Nor does simply saying widespread body pain really express what that means.
The same is true with the other standard symptom of fibromyalgia – chronic fatigue. The problem is that both widespread chronic pain and chronic fatigue are not just symptoms or signs of fibromyalgia, but they are also symptoms of many other illnesses.
The Common Symptoms of Fibromyalgia
- Chronic Widespread body pain – there are two keys in this symptom. The first is that the pain is chronic, meaning that it has lasted typically longer than 6 months. Widespread means that the pain is located in a variety of areas across the body.
- Doctors will generally test specific tender points by applying a slight amount of pressure. It’s not so much pressure that it should hurt, but when you have fibromyalgia pressure on those tender points often does hurt.
- There are also a lot of different types of pain that you may experience with fibromyalgia that are not common, these include allodynia and parasthesia.
- Doctors will generally test specific tender points by applying a slight amount of pressure. It’s not so much pressure that it should hurt, but when you have fibromyalgia pressure on those tender points often does hurt.
- Chronic Fatigue – The chronic fatigue that comes with fibromyalgia is not unlike what is experienced by those who are diagnosed with chronic fatigue syndrome, Epstein Barr, or who may be undergoing chemotherapy. This fatigue is over-arching and all-encompassing exhaustion. It’s not something you can just get a good night’s sleep to correct. You wake up tired and you go to bed tired. Napping may not help, if you can even manage one.
- Sleep Problems – Despite how tired you are and have been all day, when you try to sleep you simply can’t. You may struggle to fall asleep or stay asleep (or both). You may also wake too early and be unable to get back to sleep. Some theories believe that sleep problems may be at the heart of fibromyalgia
- Fibro Fog – Mental fog is common with many illnesses and even as a long-term side effect of chemo drugs. But, you might have thought that foggy brain was just normal. It’s not. Fibro fog often makes you feel like you can’t remember basic words, and at times can make you wonder if you are actually dealing with Alzheimer’s. This fog can also leave you feeling unable to concentrate on a task, whether it’s remembering what you were doing, or simply re-reading the same line repeatedly.
- Anxiety or Depression – It’s not uncommon to experience anxiety or depression with fibromyalgia. Anxiety is understandable as you are living a life when you never know if you will be in pain or what pain may keep you from doing. Depression is common with fibromyalgia as well as this pain is keeping you from living a normal life. You have a right to be depressed.
- Morning Stiffness – Whether or not you are able to sleep, you often wake up feeling stiff and as though even moving a single muscle is difficult. The lack of sleep may make the stiffness worse. Stretching daily can help ease this stiffness, as can massage and myofascial release therapy.
- Headaches – Headaches, of all kinds, are common among those living with fibromyalgia. There is some overlap between the symptoms of fibromyalgia and migraine, and the incidence of migraine among those with fibromyalgia is pretty high. Stress and anxiety related to dealing with other symptoms, as well as lack of sleep, can certainly exacerbate migraines, as well as cause stress headaches.
- Irritable bowel syndrome – Fibromyalgia is believed to be a nerve disorder. Those same nerves run throughout your entire body including through your digestive system. This may be why the incidence of IBS among fibromyalgia patients is high. There is also quite a bit of overlap between the symptoms of fibromyalgia and celiac disease.
- Urinary Problems – Those living with fibromyalgia may also have more urinary issues, including increased urinary tract infections, and problems with incontinence. Interstitial Cystitis is also very common among female fibromyalgia patients.
- Increased menstrual pain – The symptoms of endometriosis and fibromyalgia overlap as well, and it’s not uncommon for a woman who is diagnosed with one to eventually be diagnosed with both. Because endometriosis can only be properly diagnosed through surgery, it’s possible that many woman are suffering from it without knowing, thinking that their PMS symptoms and painful periods are completely normal. They aren’t.
- Nerve Twitches and Muscle Spasms – Nerves misfire and muscles seem to want to tighten up and release at their own, often alarming, pace causing often painful muscle spasms. These twitches and spasms can be downright dangerous if they hit at the wrong time while walking or driving, or simply embarrassing as they cause you to drop things.
Strange Signs and Symptoms of Fibromyalgia
For those of us who have lived with fibromyalgia for a while these symptoms may not seems so strange. For those who are new to the illness, you may think these symptoms are perfectly normal parts of life – they aren’t.
1. Allodynia – This funny sounding word, just means it hurts to be touched. Sometimes it hurts to be touched by something as light as clothing or a sheet… or something as wonderful as a hug. Long before I was diagnosed I would sometimes feel like it hurt to even sit next to someone so that our legs were touching.
2. Sensitivity to Fragrance – For some reason it seems that many of us with fibromyalgia have heightened senses of smell, even for something light, but definitely for chemical scents like perfume. There have been many times when I’ve smelled someone entering a room and felt like I needed to stop breathing before it stopped me from breathing.
3. Paresthesia – This is commonly known as numbness and tingling. You may experience this anywhere on your body, but it seems most common in the extremities (hands and feet). This symptom was actually my first and the one that started me down the road of a million tests leading to the Fibro diagnosis.
4. Lipomas – These are fatty tumors. You can have these anywhere on your body. They aren’t really dangerous but can leave you wondering if you should be worried. You should get them checked out just to be sure.
5. Excessive Sweating – Excessive sweating may be a symptom or sign of fibromyalgia, but it’s also a common side effect of many of the medications that we take for fibromyalgia.
6. Sensitivity to Light and Sound – Those with fibromyalgia often have a difficult time in crowded or noisy environments. Not only is the risk of a painful touch higher, but bright lights and loud noises can activate the nervous system increasing other symptoms.
7. Swelling and redness – With fibromyalgia it’s not uncommon to find that your fingers, feet, or ankles swell for no reason. You may also experience random redness and flushing in your hands and feet, or across your face or neck.
8. Neuropathy – Neuropathy is feeling of burning pain in your hands and feet. Small fiber neuropathy is a specific type of neuropathy that is common among those with fibromyalgia. This pain may be accompanied with swelling and redness.
So what do you think about these “strange” signs? Are they “strange” or completely normal for you?
Looking for more symptoms of fibromyalgia? Or, want to know what fibromyalgia feels like?
Sherri says
I was shocked to read the comment about the BP cuffs causing pain. I have to actually meditate and breathe measuredly to get through a bp reading without crying because they hurt so bad. SO bad! If I don’t meditate, my BP and heart rate soars. I thought it was anxiety!
Wilma says
I have suffered from Fibromyalgia for over 45 years. I am always in pain, I suffer from Cluster headaches, IBSD, joint pain in my hands, knees and feet. I have neuropathy and depression. My doctor told me that I needed to exercise more that would fight the pain. However fatigue sets in quite regularly. The fatigue is annoying because I am on that can go almost 24/7. Not anymore. I lay on the couch and I am out.
Thank you for sharing your journey with us. My journey is to push forward and do what I have to do to get by. Thank you , I am glad I am not alone. However I will say ti those who have this, May God’s blessing help you through each day.
Dianne Hallman says
I am in the same boat plus I have more. And stage 4 copd. Learn all you can and take good care of yourselves. God bless!!
Eli says
I’m 56yo, huge problems started 34y ago, I suffer from Fybro, RA, Artrosis, hernias and stenoses in neck and lower back, and 1knee needs a prosthetic and the other for now a “cleaning”.
I’m never sure what of my problems gives me most pain. I use a walking stick for short walks and a walker for longer. Both prevent me from falling but give me a lot of pain in hands, arms, shoulders and neck, but I have to move , so I keep going.
From every point you make I think I’m a poster girl. But as I said with all things going on in my body and all meds I’m on, I’m never sure who’s the culprit. Still hoping on some help on all other problems then Fybro, so maybe something will give me some relief
Kathy says
Dolores Lyles says
December 27, 2022 at 11:02 pm
I am 88 years old and have had fibromyalgia and chronic fatigue forever. I am hurting so much all the time it is unbelievable. There is no time I do not hurt, I try to do as much as I can but it is never enough. Makes me feel a lot of times I am lazy because I really cannot function. Just touching my skin is terrible. When a Dr. Takes my blood pressure it hurts so bad I could scream.i try to keep my life going but it is really hard, paying bills etc. I have two shoulder inserts and two knees redone. So enough about me so I will try to follow you and pray something can be found to help us.
I wanted to reply and let Dolores know I’ve had the same issue where my skin hurts when it’s touched and I can’t function on a daily basis due to being so tired. I’ve been dealing with this for over 15-20 years. I just started using weed gummies and they have worked wonders for me. You have to make sure not to take too much or drive when you take them but they help a ton. I hope This helps
Bonita says
Good day all ..I was first diagnosed with RA and then fibro. If got fibrous cysts in my breasts and under my arms. Had to remove have my thyroid and have a C5 and C 6 herniated disk in my neck causing even more pain. A lot of other diseases have been ruled out but my Dr is still looking for more causes for my chronic pain and brain fog. It feels like I only have 1 brain cell left and my memory is non existent. I have an appointment with a neurologist on the 29th Aug 2023 to test for motor neuron disease CIDP need a spinal tap MRI a EMG or EGM or something like that.. my doctor prescribe me 100 synaleve some Targinact and …can’t remember the other pill now. I am also on a hand full of meds for my heart because I get coronary spasms..I often feel like just quitting all meds because I am just in so much pain and still have all these symptoms. I was taking CPD capsules that helped a lot but was told to stop by my cardio. There is just so much over lapping that no one can get a final answer. I lay in bed every weekend. Miss my son’s rugby games and just feel useless as a mother and a wife. I am still maintaining a permanent job driving about 200 to 500kms a day and it is just killing me. The stress to keep my job often causes flair ups and so the cycle continues… no one listens and no one understands… it is so nice to read all your stories and relate… I am thinking of each one of you and pray for a treatment to give us our lives back
Linda says
I was diagnosed with Fibro by my family Dr. Mostly from tender spots. Have had many other symptoms and health problems. I am full of lumps, Sometimes they itch. I mention them to every doctor, but they shrug them off as fatty tumor. I wonder if they have anything to do with my lymph nodes.
Kay says
I read the article on fibro and the unusual not so unusual signs and symptoms. It was like someone else living my daily life. People think you’re just being unkind when you turn down a hug or say your clothes hurt you,and even you’re complaining for attention. I lead a very solitary life now. It’s just easier than explaining yourself.
Susan says
I have every single symptom including the unusual ones! I am 67 so don’t have period issues but very little will to live since I am in constant pain & live alone with almost no support. My kids try but they just don’t get it & dismiss my complaints. I actually look forward to death as my only chance for relief. I push thru each day but can’t stop crying cause we have enough problems in the way things are these trying times without having to deal with constant pain & loneliness & inability to sleep or digest properly. I’ve become addicted to alcohol cause I can’t find any help or support which does compound the problem. My only true escape is in reading & being with animals which I have little access to since I live in an apartment that doesn’t allow pets. I need to join a support group & make some friends, I don’t even have a trusted friend
Kim says
I have Fibro and I also had Endometriosis as well. Had a full hysterectomy about 6yrs ago but I do believe the two are tied together in some way. I have spoke to several woman who have had both as well. I would LOVE to have a few days without any pain now. But unfortunately, that is not going to happen. It does change EVERYTHING!!!
Valerie Norton says
I was diagnosed with Fybro and Chronic Fatigue in 2014 by a Rheumatologist after. Several illnesses caused me to have undiagnosed pain issues and depression.
Before I go on I have to say I suffer with Epilepsy and All 5 lower back discs. L1-L5 have degenerated so the base of my spine feels like it’s grinding.
When the Rheumatologist diagnosed Fybro my Dr at the time admitted she and the rest of the surgery knew nothing about this condition and advised me to read up on it as much as possible. The next stop was the pain clinic at the possible where an MRI showed possible wear on vertebrae and worry that muscles in back were breaking down. To cut a long story short my carear as a Pharmacy Technician came to an abrupt end, brain fog hit me hard trying to remember different drugs for different patients so I was made medically redundant.
At the beginning the 24/7 pain and constant itching all over especially my face drove me mad until I found some soothing cream.
My major problem now is I have to take very strong pain relief for my back which the Drs think as its a 24hr slow acting drug should help with the Fybro. How wrong can they be, constant ligament pain in hps and knees, being told I can’t take anything stronger because of epilepsy meds, cbd ha that’s a joke even that affects my epilepsy meds so it’s a no go. I’m that used to this pain now I’d just pay for one or two nights peace a month in a luxury hotel to make me feel a bit better every so often.
I hope you all find some relief.in treating this horrific condition.
Best wishes to you all ‘
Dolores Lyles says
I am 88 years old and have had fibromyalgia and chronic fatigue forever. I am hurting so much all the time it is unbelievable. There is no time I do not hurt, I try to do as much as I can but it is never enough. Makes me feel a lot of times I am lazy because I really cannot function. Just touching my skin is terrible. When a Dr. Takes my blood pressure it hurts so bad I could scream.i try to keep my life going but it is really hard, paying bills etc. I have two shoulder inserts and two knees redone. So enough about me so I will try to follow you and pray something can be found to help us.
Sharon says
I have had fibro over thirty years lose friends sometimes because of flareups
Mishka says
I don’t know until I wake up what the day will be like, so can’t make any plans. Some days I lay in agony wondering if I have the will to go on after fighting this for over 30 years. Each day is a battle just to get to the grocery, or clean the house. I’ve been to many doctors, but to no avail, which led to a necessary early retirement from a career that I loved. I’ve been told to go to a therapist for Cognitive Behavioral Therapy, I guess as a coping mechanism? Does anyone else do that, and does it help? On the side, I’ve found that soaking in a hot tub with Epsom Salts and peppermint oil drops help immensely on bad days. Heating pads have become my best friend! Massages also help with relaxation, but working out the pain as well.
Ruth Johnsey says
I have been told “I wonder if you may have fibromyalgia “. I don’t want the doctors guessing, I want to know. I have terrible pain, terrible sweating and sensation of being so awful hot. I’m also diabetic and have arthritis everywhere. Most days I can hardly stand the pain. I know I am stubborn but really don’t want to take narcotics for the pain. How can I get to the bottom of this with a doctor? I wouldn’t wish this pain on anybody but would like them to understand this pain is real. Do you have any suggestions? Ruth.
Brenda says
If I missed a mention about this, please excuse me. I have been wondering if one of my strange symptoms is fibro. This is a symptom starting perhaps several years back. Occasionally, I will experience a feeling of warmth in a broad swath move across my back and disappear. Have you experienced or heard about this?
Julie says
I’m not a DR, but it would seem to me that it could be related to the nerve issues that are at play in fibromyalgia. I’ve often gotten many weird sensations with fibro.
Melissa says
I have been living with Fibromyalgia longer than when I was diagnosed properly. My PCP years ago just told me I had Chronic Fatigue Syndrome but, being a nurse, I knew it was more. I just didn’t want to say anything because as you know, people look at you differently. Well, until lately. I see a rheumatologist and I have been tested for everything because my inflammation markers in my blood work are off the charts and all he definitely knows is that I have fibromyalgia and chronic inflammation syndrome and osteoarthritis. When someone taps my arm it is like they hit me with a hammer. I also get burning skin feelings daily. Like I have a sunburn. I often get rashes out of nowhere. I feel like I have the flu every day of my life. I also have Restless Leg Syndrome that was accidentally found with a sleep study. The life of pain is so disheartening. I hate to be a complainer but no one around me gets this. I will take all the sharing of your wealth of knowledge I can get!! So did I read earlier that cannabis does help some? What about supplements? I just need something to try.
Judy says
I am certified by the state for medical cannabis. It has advantages but it’s a little trial and error for how much THC is in it and what dose works for you. Pharmacists help figure out what is best for your goals. I’ve been doing it for several years and find it highly useful for sleep. However you can’t take it across state lines or into states that don’t accept your states registration. You can’t fly or go on other Federally controlled transit. It slows down pain and helps me sleep all night which is a blessing. Good luck to you all.
Courtney says
Allodynia this what I’ve lived with for many many years before numbness and full chronic pain my brother who plays like a big kid would always say I barely touched you that couldn’t have possibly hurt. He had no clue at only diagnosed at 42 because ALL my symptoms showed up to a party. I truly thought I was going to have a nervous break down to look fine and feel like you’re living in a 90 year old body that aches continuously I have lot of symptoms now and can’t find the right meds to help and stay active
Thank you for sharing
April Leigh Shular says
So I have celiac disease but I was diagnosed with Fibromyalgia for 15 years now. I have, startling, ALL of these symptoms! They are all part and parcel of me! I have stopped taking my Fibromyalgia meds in favour of Cannabis tablets. There are no side affects. I used to get bad sweating sessions with Naprosyn. It is nice to still be able to function well enough to get my family taken care of. Brightest Blessings to you all!
Julie says
I can’t say cannibus helps everything for me, but it definitely helps a lot.
Nicole says
I have been trying to Iive with Fibro, Fibro fog, chronic fatigue and other symptoms that im sure have not been diagnosed has of yet since the official diagnosis in 2012. It’s hard when most don’t believe that the pain you go through is real. Thank you for letting me share my story and thank you for sharing yours.
Julie says
The pain is definitely real. Don’t let anyone tell you different.
Melissa says
I was diagnosed with Fibro in 2010 after 3 years of tests ruling out everything else. I have widespread pain, 14 of the 18 tender spots, IBS, painful periods and heightened sense of smell prior to onset of Fibro symptoms. Sleep issues and chronic fatigue as well as swelling, tingling and burning in my hands and feet. Sometimes I think my extended family thinks I am faking a lot of these things. Thankfully my husband and children know differently. My husband says he can see it on my face when I think no one is around to see and that I try to hide how bad it is when he and the kids are around. It’s nice to know that my symptoms are not unusual for someone with Fibro. That they are real.
Sarah says
I am curious as to whether this list is your own personal list of symptoms or if this is an “accepted symptoms list” from a particular place (medical journal, advocacy group, etc.).
The reason I ask is because it would be useful for sufferers of these symptoms to be able to present this list to their doctors who may be “Fibromyalgia skeptics,” and it would be more effective if there was some sort of “respected reference” for it. Thank you.
Julie says
Short answer, it’s a combination. The list above is compiled from both the standard diagnostic criteria for fibromyalgia and the many other symptoms (and co-morbid issues) that are widely reported. The main symptoms (at the beginning of this list) are the standard symptoms that are part of a fibromyalgia diagnosis (widespread body pain, fatigue, and sleep problems. These are the criteria that most doctors use along with the “tender point exam” (although many doctors don’t bother with this anymore) for diagnosis.
Originally, a fibromyalgia diagnosis was based primarily on the tender spots – if you had pain in enough of the tender spots you had fibromyalgia. Around 2010, the criteria was updated and became some point system that included the tender points, plus ratings on a variety of other symptoms including insomnia, fatigue, migraine, and IBS. What it really comes down to is there isn’t really a standard that is used widely, and more often than not a diagnosis is often a result of a doctor not finding a better answer for your symptoms (whether or not they’ve really completely ruled out all potential causes).
Sarah says
Julie, thanks for taking time to explain so thoroughly. I understand that Fibromyalgia, like ME/CFDIS, seems to be a diagnosis of exclusion and yet, there ARE so many common but “unusual” symptoms among sufferers, like the ones on your list. If only ONE cause could be determined, so there was a way to “cure.” Have you followed Jennifer Brea’s story of being in remission with ME? Because of a MECHANICAL issue…SO MANY POSSIBILITIES.
By the way, I did not meant to publish my last name! If it’s possible to take it off my posts, I’d be grateful!
Julie says
Unfortunately, as much as there is overlap in our symptoms there’s still also so much variance. Researcher are trying to find a cause or a commonality that can be used to lead to treatment. For instance, the blood test from EpiGenetics and the treatment they are working towards. But, there’s still a lot of inconsistencies even there. Then add in all the misdiagnoses of people where other issues haven’t been fully ruled out.
It often feels like with Fibro and ME/CFS that which diagnosis you get is dependent on the doctor you see. The symptoms overlap so much. Progress is slow but it’s being made. Many do find relief but then others try the exact same things and get no relief, so it’s just really difficult.
Julie says
Glad you found it too Terry. I wish I could help you find some more info relevant specifically to men with Fibro. It seems like Men suffering from Fibro is a rarity so there’s little info out there specific for you. Perhaps you should start a blog to help those who come after you.
Fishdoc66 says
I may be in the minority here being male, but have been diagnosed with Fibro. Don’t have all the strange symptoms listed above, but numbness, and the fog. Prior to pain starting, I noticed my interenal furnace went from luke warm to roasting. Wife told me I had male version of menupause! Haha. Oh, yeah also had a fatty/nerve gagnlion remove about 10 years prior.
I am glad I found your blog. Now if I can find one more specific to men dealing with it.
Thanks,
Terry
sand625 says
Completely normal (unfortunately!) though I suspect the periodic sweats are linked to my hormones *Grrrr*
Very interested to see lypomas linked! I had one removed in my 20’s – there’s DEFINITELY a genetic type linked to Fibro. Shame we have to be it eh?
Gentle hugs and spoons
Sand
Lauren says
I have Fibro as well as excessive sweating of the hands, feet, and armpits, but since I do not take any prescription drugs, I’m thinking it might be related more to the neuromuscular component of Fibro than it is to the drugs. Some of the suspected “causes” of FM that I’ve read suggest overly active or sensitive nerves; I think excessive sweating can be linked to that as well. Very interesting….
Hot Tub Helper says
I’m sure it can feel odd to both you as the sufferer, and also to your friends and family. As someone trying to learn more about Fibro, I appreciate your trying to describe these “Stragne Signs” in laymans terms.
God’s blessings as you keep up the good fight.
Becky says
Yep…these are “normal”!
Julie says
So sorry you are having a flare right now. of all the times to deal with extra pain this is not it, and following surgery too.
Patty says
Oh how I hate having Fibro….in a bad flare now just after having surgery. I feel so sick there’s noting left to do but lay here and cry.
Thank you for this post.
Patty