25 ‘Taboo’ Symptoms of Fibromyalgia

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When anyone hear the word fibromyalgia, the first image which comes to their mind is that it is “just” chronic pain and fatigue. However in reality, those living with fibromyalgia know how much more it is. Fibromyalgia has more than 250 symptoms. Sometimes fibromyalgia can even cause symptoms that others may see as “taboo”.

We asked on our facebook page a question that “What’s a “taboo” symptom of fibromyalgia we don’t talk about? What do you wish people understood about this symptom?”. More than 500 people have particpated in the survey and shared their opinion on the topic. They told us their taboo symptoms of fibromyalgia they did not shared with others. In this article, we have compiled their views and share it with you.

There are still so many people who think it’s a “catch-all” diagnosis and not a true illness. People tend to dismiss the symptoms of fatigue and brain fog as part of the normal aging process. They don’t understand that with fibro, these symptoms are on a whole other level.

Here is the short summary:

This is what community share with us:

1. The confusion and loss of word retrieval. It’s embarrassing, especially in professional situations. My most embarrassing instances of this is forgetting people’s names!!!! I’ve known them for years but when put on the spot I can’t retrieve their names! I feel so embarrassed because of fibro fog and have to explain why I couldn’t spit it out rather than me just forgetting their name. – Thea L.

2. Fibromyalgia affects speech, causing slutering. Not being able to brush or detangle your hair because you can’t hold your arms up that long from the pain and fatigue. Then feeling ashamed because you know you look a mess. – Crystal B.

3. How much all the stuff we go through causes mental stress that no one gets. The doctor is like “reduce your stress”. I’m like fibro is my stress!!!! — L Mae.

4. Not wanting to be touched. I’m uncomfortable in clothes and sometimes even in my own skin. People touching me, a hug or pat on the shoulder even from a child can hurt.– Carla P

Related Articles:

> Effect Of Different Types Of Clothes On Fibromyalgia Pain
> What to Wear When your Clothes Causes Pain
> What Everyday Tasks Feel Like for Someone With Fibromyalgia

5. Fatigue. I don’t think I have ever told someone how tired I am without them responding with sarcasm- Lisa M.

6. Waking up everyday not knowing how you’re going to feel, that’s hard for people to understand and empathize with. The chronic pain and fatigue and hunt for really good doctors is unending. — Tauyna P.

7. Tinnitus, Misophonia. It is so maddening, when you’re trying to sleep and the ringing is just so loud.– Maira W

8. If your hinting at sexual (lol) some days dry as a bone and others overly wet…sometimes nipple pain is out of control!! –Desiree M.

9. Making Plans When You Have Fibromyalgia is very hard because of upredictable flare ups and when you cancel people think its a made up excuse because you dont look sick. — Amanda C

10. Heavy periods and uterine fibroids. It was horrible. So much so that I had a hysterectomy 7 years ago. – Kelly D

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11. That it’s exhausting to just “keep going” all day every day, because you know when you stop, it’s over and you’re done for the day. Or, no matter how much sleep you get, you’re still tired, but the more sleep you get the worse off you are…- Clarissa H

12. Fatigue. It’s taboo to mention you’re overly tired without seemingly doing anything that would require a lot of effort. – Jasmine D

13. My Fibro fog is so bad I feel incompetent at work and feel like I can not communicate the way that I want. And memory….it is so bad I feel like I have early dementia. It is embarrassing, frustrating, and scary. — Dawn R.

14. The countless times I would bring doctors notes to prove to my family my illnesses are real and what they say “ your doctors are quacks.” I’ve came to a recent decision that I will stop explaining my health issues to family. it’s exhausting trying to make them believe me. Most of the doctors I’ve encountered throughout this journey have been just as bad or worse. – Maria R.

Also Read: To The Person Who Thinks My Illness Isn’t Real

15. Mistaking someone’s physical and mental inability (at spontaneous times) to ‘laziness’. If they want to think I’m lazy, whatever. I know my body and the limitations it has at times due to fibromyalgia. The body is bad enough, but the mental toll is draining. – Woods K.

16. The awful Costochondritis, it’s horrible. Itching is non stop! Cramping in my feet and legs. — Lucy B

17. That I can barely make it through a shower without sitting down…a shower wears me completely out. And the IBS that goes along with it.ugh. — Michele B

18. Not knowing if a symptom is fibromyalgia or if it’s something I need to get checked out. Recently I have been going to an oncologist because of high platelets. He said it could be from fibro, the body’s response to it. Thankfully he isn’t just blowing me off and has been running all kinds of tests. I also have to go see a cardiologist cuz I don’t know if my chest pain and shortness of breath is because of fibro or my heart is giving me problems. — Elizabeth H.

Related articles:

> 15 Common Fibromyalgia Diseases Probably You are not Aware
> Fibromyalgia and Bruising: Effects of an invisible disease
> 5 Severe Diseases Associated With Fibromyalgia. Probably You are not Aware

19. Feeling like I am loosing my mind.I’ll will be having a conversation and my mind goes blank and I forget what I was talking about. “Flares” in general. I’m fine yesterday when you saw me, but, today , it’s a whole different person I am. Please don’t touch me. It hurts. To my kids: I love your hugs but they really hurt in certain spots. — Lisa P

20. It’s a wicked, invisible, exhausting, excruciating, curse! Fatigue to the point of nausea even if I’ve had a decent night’s sleep ( thanks only to otc sleep aids) Pain 24/7 365 with no relief. Progressive-so every year ( I’ve had it over 35 years) gets harder to bear. Now in my 80th year it’s all compounded with other age related difficulties-arthritis, stenosis, diabetes, etc. And zero research being done- likely because it mainly affects women. — Diana O

21. That a flare can come up without warning in as little as a few minutes. The unpredictability that makes us inconsistent and not dependable. With that can come insecurities that lead to depression and anxiety which of course can cause a flare up. — Lea Taylor

22. Allodynia, mine happens a few times a month and my skin feels like fire ants crawling(its called formication) all over me biting everything touching my skin makes me wanna scream. — Cartwright T

23. IBS, brain fog, forgetfulness, leg cramps etc…. I have found some awesome things to help with some of the symptoms like magnesium cream for the legs, lymphatic cream to detox the lymphatic system and natural hormone replacement. — Mona F

24. Libido has drastically decreased. Menopause and fibromyalgia is a lot to deal with. Mental health is my top priority. – Gloria G

25. Excessive sweating. Not only is it very embarrassing but it is also a big hassle and sometimes can cause painful problems. It is bad enough that I have to change underwear, bra and shorts often in the summer but it has also caused painful skin rashes. This summer every crease on my body that sweats a lot the skin breaks out and feels rubbed raw. All summer I have been using diaper rash cream in various places. Mitzy R.

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Fibromyalgia Awareness Store: With so many people across the world affected by the pain, fatigue and brain fog of fibro, it is critical we raise awareness of the condition.Along with speaking, lets spread out fibromyalgia awareness with some others means, let the things speak out it self. Like you can have customized T-Shirts, Mugs, Stickers, Pants, Mobile Covers, Socks, Wall Tapestry. Click Here to visit the Store 

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