By Wyatt Myers Medically reviewed by Cynthia Haines, MD everyday HEALTH
If you have fibromyalgia, you're undoubtedly familiar with the chronic pain and fatigue that often accompany this disorder — which affects about 5 million Americans, primarily women.
But feelings of pain and exhaustion aren't the only symptoms of fibromyalgia. Other signs that aren’t necessarily visible to others can affect you and make the condition even harder for those around you to understand.
Here are some of the lesser-known signs of fibromyalgia that you may experience:
Allodynia. You might not give a second thought to rubbing a loved one’s shoulders or patting a friend on the back. But for someone with allodynia, being the recipient of these simple gestures can result in excruciating pain. Allodynia is a heightened sensitivity to touch, which results in pain from things that normally would not cause discomfort.
“This increased skin sensitivity and pain from touch is hypothesized to occur for a number of reasons,” says Jacob Teitelbaum, MD, medical director of Fibromyalgia & Fatigue Centers. “Over one-third of people with fibromyalgia develop a small fiber neuropathy caused from the chronic pain. In addition, the chronic pain causes amplification of pain signals in the brain itself, as well as changes in three key neurotransmitters related to pain.” Dr. Teitelbaum says medications known as NMDA receptor antagonists — memantine (Namenda) is one — can help.
Allodynia is also related to a lack of restorative sleep, so standard treatments for fibromyalgia — such as physical therapy, exercise, stress relief techniques, and practicing good sleep hygiene — can also help ease allodynia.
Sensitivity to fragrance. This fibromyalgia symptom is almost directly tied to allodynia and occurs for many of the same reasons. “Increased light, sound, and smell sensitivity are all common,” says Teitelbaum. “We have an enormous amount of sensory input coming in, and it takes energy to sort through all of this to separate the noise from the static. Fibromyalgia predominantly represents an energy crisis, and as the body has trouble sorting through the signal from the noise, it reflects as increased sensitivities.” In addition to whole-body approaches to treating fibromyalgia, Teitelbaum says the anti-seizure medication gabapentin (Neurontin) can often help decrease these sensitivities.
“Fibro fog.” Also called “brain fog,” this is a very serious fibromyalgia symptom that leaves many people in distress. “Brain fog or fibro fog is a classic component of the energy crisis we call fibromyalgia,” says Teitelbaum. Some of the common signs of fibro fog include a difficulty with word finding or substitution, loss of short-term memory, and occasionally even episodic disorientation that lasts for about 30 to 60 seconds. "With this disease, calling one’s husband by another man's name is not a Freudian slip," Teitelbaum notes. He explains that there is no single cause for fibro fog; rather, it can be caused by a combination of many factors including low thyroid levels, poor sleep, hidden infections such as Candida, and alterations in blood flow to the temporal lobes of the brain, which regulate speech.
Stephen Soloway, MD, a rheumatologist in private practice in Vineland, N.J., attributes much of the difficulties with fibro fog to sleep issues affecting people with fibromyalgia. Practicing good sleep hygiene and getting help from a sleep specialist may be useful.
Paresthesia. Paresthesia is an unexplained feeling of tingling and numbness that people with fibromyalgia may experience. Often it's related to anxiety or nervousness over the disorder and can be accompanied by rapid, deep breathing. This in turn can lead to acroparesthesia, a tingling in the hands and feet from lack of carbon dioxide. Considering that anxiety is a major player in parasthesia, the stress relief techniques recommended for fibromyalgia patients can help. Exercise can also play a role in treatment.
Lipomas. These benign fatty tumors that can appear as lumps in various parts of the body are not directly related to fibromyalgia, but they may cause you to experience more discomfort than the average person does. This may be related to where the lipomas develop — parts of the body that are susceptible to the excessive or inappropriate pain that patients experience, explains Elliot Rosenstein, MD, director of the Institute for Rheumatic and Autoimmune Diseases at Overlook Medical Center in Summit, N.J. “Alternatively, these may be fibro-fatty nodules or localized areas of muscle spasm.”
Excessive sweating. Some people with fibromyalgia perspire heavily and may even believe they have a fever. This is due to what’s called an autonomic dysfunction within the hypothalamus, the almond-sized area in the brain that controls sleep and regulates sweating, bowel movements, and other automatic body functions. “The autonomic dysfunction causes the increase in sweating," Teitelbaum says. Some medications and lifestyle changes that can keep you cool and dry may help with this fibromyalgia symptom.
Many of these unusual fibromyalgia symptoms respond to general treatment approaches. If not, talk with your doctor about targeted recommendations that may help.
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this information has really helped me to see that I am not going crazy and that there are others going through this too. I will forward this to my husband so he can better understand too..Thank-you
ReplyDeleteI am so glad this Fibromyalgia info has helped you and i hope it helps yours husband better understand.
DeleteAmen thank you this helps my anxiety reduce greatly knowing I am not ill with some other sickness after being diagnosed with fibromyalgia after double container lorry hit me two years ago god bless and he is all
DeleteI agree many drs and partners think we are a little crazy - thanks for your supprting site
ReplyDeleteyou are very welcome... we all need to know we are not crazy
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Thanks so much Dennis for your kind offer.
DeleteMy body pains stopped after I went on gluten free diet
DeleteGreat advice and information about these scary symptoms
ReplyDeleteThanks S.H. Hopefully the more reliable knowledge we have on Fibro the less scary it will become.
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DeleteAn interesting read Lee. I would love to know what the medications / lifestyle changes are that can help with excess sweating. Although it doesn't cause the same level of issue as the pain and fatigue do, it is one of the niggling frustrations. I find creative concentration causes bad sweating for me (colouring/crafting, applying makeup (I scarcely bother any more as it is washed off with sweat) applying nail polish etc) I can even be cool in most of my body but my head is hot and my hair dripping wet! The joys of living with Fibro.
ReplyDeleteHi Susan, it's interesting you mention about excessive sweating with the application of makeup, as I get that as well. Also my daughter suffers with extreme sweating/perspiration - I do hope she does not ever get fibro. With her sweating her doctor did administer a contraceptive pill initially - however has since stopped that one in favor of another. Some of us are a bit beyond that kind of pill, so like you it would be good to know if there is any kind of medication that fixed the sweating.
DeleteExcessive Sweating
DeleteI am so happy to know this information. I was diagnosed with Fibromyalgia about 20 years ago.
About 3 or 4 years ago, I started with the EXCESSIVE SWEATING. My dr told me that it is caused by at least 2 of my medications. And he proceeded to tell me to lesrn to live with it. And that I am on the best medications for me. I sweat any time I go through a temperature change. I can have chill bumps and be sweating at the same time.
I discovered by accident that Oxybutynin for bladder issues works very well to control sweating.
DeletePlease try not to take Oxybutynin. Not good for long term use.
DeleteThe Lipomas - wow that's really interesting, like a kind of cyst that dogs get it seems. The sweating I always wondered about that, as I remember getting that even when I was younger before suffering any form of significant trauma. I hated the sweats on my forehead around the time Covid first came out in Australia, I used to freak out (and consequently) sweat even more because I was worried other people would assume I had Covid. At the time I put it down to being perimenopausal; perhaps a combination of both.. we will never know.
ReplyDeleteLike so many medical symptoms and their connections they remain a mystery. even doctors often don't put 2 and 2 together.
DeleteThank you for linking some of the strangest symptoms I have back to fibro. The part about lymphomas blew my mind.
ReplyDeleteOddly it turns out I have every one of these symptoms but the allodynia has caused a great deal of pain especially in the evening while I relax or sleep. I came up with a solution/hack that helps, I wear my clothes inside out so the seams don't hurt me and I have found wearing firm (not tight) fitting leggings inside out to bed helps as nothing is moving and brushing against my sensitive skin.
I hope this helps others too.
I never considered wearing my sleeping clothes inside out. That is brilliant! Avoiding seams completely!
DeleteThanks so much for your helpful suggestions, Anthea.
DeleteI sleep without pajamas………. Pressing on seams is excruciating. Causes My skin to burn and the pain begins. Also burned My bras at seventy……. Shoulders and ribs feel better.
DeleteClothing like CuddDuds, Muk Luks and many others sold on QVC.com have saved my skin. Also sleeping on fleece blankets, other than sheets is a God scent. Just don't use fabric softener on this type of material.
DeleteCan everyone help me with diet help I have 3 bulging discs in my back and can’t exercise over the past year I have gained 3 and a half stone and obviously it’s not helping the fibromyalgia and psoriatic arthritis. Any help please
ReplyDeleteHello..I have suffered for yrs with arthritis..bulging discs in back and neck, knee, ankle, hip and now ankle and hand joints are all involved..excacerbated by fibro.Going gluten free, taking collagen and magnesium all have helped on top of finding a great pain clinic with medication (gabapentin for fibro and an anti inflammatory) Honestly, if you are able to begin stretching...find exercises on pintrest and buy an excercise ball..it will help.I find regular swimming has been so therapeutic and the gentle, non weight bearing movement is the best.I can do way more in the pool than on land! Good Luck!
DeleteI have bulging disc in my low back as well. I have had Fibromyalgia since 2001. I found Dr. Livingood on fb 2 yrs. ago. He has helped thousands of people including me w/Fibromyalgia, arthritis and hundreds of other diseases without taking prescribed medications. He has a group you can join & supplements you can get that helps your body get all the nutrients that you need. He also has monthly lifestyle challenges that you can join. On there you can get information on hundreds of diseases to back pain, hips, shoulders & all of your organs. It’s great site and it’s helped me tremendously. My back, fibromyalgia, Lupus, migraines & rheumatoid arthritis were so bad I couldn’t hardly or do anything. I started following him & his wife (a nurse). They work together & have published “Make Food Simple” cookbook that tells you what & why to eat & not to eat, to help your body heal & get rid of the inflammation. I was on 10 meds. & I’m down 2. I have lost, feel tremendously better. I’m moving, exercising, walking, getting out and doing stuff now. He has all kinds of YouTube videos you can watch for free all & has supplements that have really helped me. Just check it out!! I think He will help you as well.
DeleteAll very real.
ReplyDeleteMakes me feel better for what I try to explain to family and friends! They think I’m a bit crazy at times !!! Thank you so much for this important information!!!
ReplyDeleteMy family too
DeleteThank you for this information!! The Lipomas were always so puzzling to me.
ReplyDeleteyou are welcome
DeleteThis article has almost everything I've suffered with over the last 15 years. Thank you for making me feel as though I'm not alone!
ReplyDeleteYou are most welcome Diane. Half the battle is the aloneness we all feel when living with many invisible symptoms. You might consider joining the Facebook group we have called FIBRO CONNECT to find some others who just 'get it'. https://www.facebook.com/groups/1953366574685173
DeleteI stop going to the Dr. about 20 years ago.I have fibromyalgia and is keeling me,I use Salonpas and it help me for about 5 hrs. The fibro fog and the swelling is is getting worse, but I do the breathing exercise and I take Advil,when I can manage the pain and I pray that God take this sickness away.
ReplyDeleteWe all live in hope. I'm glad to hear that the breathing exercises and advil are helping reduce your fibromyalgia symptoms. We have to try small things to get some reduction in pain. Hopefully there will be more understanding about Fibro soon.
DeleteIt’s so wonderful to be validated. Thank you.
ReplyDeleteYou are welcome and thanks for commenting
DeleteOf all the symptoms I gave with fibromyalgia...I hate the excessive sweating the worst..it is so embarrassing..I soak my hair just standing still
ReplyDeleteHelp...is there a medication to help .e?
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OMG! I thought I was going crazy. I remember when my husband and I started dating. He would hold my hand and rub his finger across my arm by my wrist. It was so painful! Felt like he was rubbing a hole right through my skin. Or pat my back when he hugged me. He had a hard time accepting it back then. Like I was making it up. Took a long time to get it through his head that the pain was real. I’m glad his was posted. And I sweat at he drop of a hat. I thought that was from my thyroid surgery. But now I know differently. Thank you!
ReplyDeleteYou are not crazy! But I do know that feeling and trying to explain these symptoms to loved ones or doctors can make us sound crazy. Glad this post helped you and thanks for letting me know by taking time to share here.
DeleteIt was a relief to actually read this and know that this really exists and its not just me. I have often wondered if I was the only one that experienced such pain just if someone barely touched them, now I know what it is! Thanks for confirming
ReplyDeleteIt's not just you! Glad you felt validated by reading the strange signs of fibromyalgia. touch is such an important sense but our bodies just seem to have gone haywire.
DeleteI have the allodynia .it sucks
ReplyDeleteApparently I fit this mold along with other symptoms
ReplyDelete