Fibromyalgia Symptoms Can Be Really Weird
Are you looking for a list of fibromyalgia symptoms? We’ve put together the real list. It’s not just what you will see in a textbook. These are our real symptoms. Our means the real people suffering the real experience of fibromyalgia symptoms every day. This is you, me and many others who have shared their experiences.
Below you will find a list of some of the effects of this weird illness. We’ have the right to say it’s weird if we want to, right? In fact, it’s weird that fibro is not even referred to as a disease process. It’s either symptoms or a syndrome.
What I’ve tried to do below is to compile a pretty concise list of fibromyalgia symptoms and provide you with some additional information to help you along on your fibromyalgia journey. If you have any symptoms you would like to add, just let me know.
A couple of other things. To help you understand what you’re going through. Even though you may feel like it sometimes, you are not crazy. No matter what the bad days look like or feel like, you are still a wonderful person with much to offer the world. You just have this nasty little thing called fibromyalgia.
Lastly, we’ll wrap it up with some great resource information. If there’s anything of value, it’s knowing what resources to tap into. This is half the battle when dealing with mysterious illnesses. If you’re interested, you can learn more about some of my personal struggles here in my about page. You may find, as I have, that understanding the struggles of others helps you understand your own.
Read on to get a really personal view of what a fibromyalgia life is like inside and out.
Fibromyalgia Symptoms & Fibromyalgia Syndrome Are Crazy
Let me start out by saying that fibromyalgia makes you think you’re crazy. At least in the beginning, that’s the way it
is. You just don’t know what’s happening to you. The bigger problem is that most people and doctors just don’t understand.
Now, let’s get into what it’s really like to deal with this crazy thing called fibromyalgia. Perhaps you’re not even diagnosed yet, in that case, let’s get busy helping you understand.
Do you suffer with strange aches, pains, brain fog or even confusion? You might have depression, sleep too much or not enough. It’s really hard to give a “textbook” example because it affects us all in various ways. I’ll do my best though.
Please remember, your symptoms may be different from mine and others as well. That doesn’t mean you don’t have fibromyalgia. It just means you could have a different compilation of symptoms.
First, let’s sort out the difference in fibromyalgia symptoms and fibromyalgia syndrome (FMS). It’s kind of a fine line, but many of us are diagnosed with the symptoms before the syndrome. I’ll explain why and what that’s all about.
When doctors diagnose someone with the syndrome it means that they have a certain amount of the diagnostic criteria present. According to the National Fibromyalgia Research Association (NFRA), the American College of Rheumatology (ACR) define the syndrome as follows:
- Pain on both sides of your body
- Above and below the waist pain in specific skeletal points
- Actual pain, not just sensitivity, in at least 11 of the 18 “fibro” spots (see picture below)
The difference in the syndrome and just having symptoms is that you may have many of the symptoms, but just not enough to receive a diagnosis of fibromyalgia syndrome. I know that sounds crazy, but that’s the truth of it.
Questions about Fibromyalgia
Besides the diagnostic criteria for the syndrome above, there are many more symptoms you could have. It’s highly likely that you have said and/or felt most of these things when dealing with them.
- Why is this happening?
- What’s wrong with me?
- How did this happen?
- Will I ever be normal again?
- Am I dying?
Some of these questions are easy to answer and some not so much. We’ll start with the easy ones.
- No, you are not dying. You just feel like you are.
- If you have a lot of the symptoms, there’s a good chance fibromyalgia is what’s wrong with you. So…your are not crazy. You’re not dying. With proper care and treatment, you can and will feel better. I hesitate to say normal because what is normal after all?
- How and why this happens is a great question. Unfortunately, no one knows for sure. There are a lot of hypothesis and opinions, but no one really knows. I’ve done some work investigating “possible” causes. If you’re interested in knowing what’s being said, you can check that out here.
Now back to the symptoms. Have you had to deal with any of this?
- severe, unexplained exhaustion
- unspecific, unexplainable flu-like symptoms, but you don’t have the flu
- getting plenty of sleep and still feeling like death warmed over
- enormous trouble sleeping
- weird pains in various spots all over your body
Do you have trouble explaining it all?
If you answered yes to many of these questions, it’s time to get help. Already working with a doctor, that’s great. Just know you may need a rheumatologist to get the best treatment.
Your doctor should ask a lot of questions. Specifically they should be assessing your pain, listening to you about your concerns, and questioning you about other symptoms like those below.
Common Symptoms of Fibromyalgia
Below you will find a pretty thorough list of fibromyalgia symptoms. I’ve also included some commentary to try and help you understand and associate with others in your fibro family.
Pain related fibromyalgia symptoms
- The primary symptom of fibromyalgia is chronic widespread pain in the upper and lower body as well as on both sides of the body. Pain can be mild to severe and described as a deep aching, throbbing, burning, or gnawing. The pain can be different with each person.
- Tender points – (pic to right) Remember the syndrome diagnosis requires pain in at least 11 of the 18 points.
- Painful menstrual cramps occur in approximately 30-40%.
- Migraine or tension headaches occur in 70-80%. This can have different causes. They may be due to muscle spasms or from myofascial trigger points around the head, neck, or shoulder area.
- Pelvic pain syndromes can pose problems such as bladder spasms or dyspareunia (pain or discomfort during sexual intercourse).
- Joint pains are common but different from other arthritis types in that it does not cause joint destruction.
- Temporomandibular disorder usually stems from the muscles surrounding the jaws and not the joint itself. It causes jaw and head pain and affects 75% of FMS patients.
- Numbness, tingling, or nerve pain most commonly occurs in the extremities but can occur anywhere.
Cognitive related fibromyalgia symptoms
- Cognitive and memory problems can pose problems and is often referred to as “fibro fog”. There are multiple opinions about our brain fog. Some researchers believe the cognitive problems are due to depression and/or lack of sleep. No one knows for sure.
- Depression and anxiety occur in 1 out of 4 fibromyalgia sufferers. The pain and fatigue may cause you to withdraw and become less active. This in turn can contribute to and worsen depression. Research shows that at least half of us will experience depression at some time.
- Depression is present in many of us. Our memories can be effected by depression but no one knows whether the depression contributes to the cognitive/memory problems or vice versa. You might experience problems such as:
- Forgetting where you put your keys
- Remembering recent conversations
- Having trouble expressing your thoughts
- Difficulty learning new things due to attention problems, etc.
Digestive & Urinary related fibromyalgia symptoms
- Irritable bowel syndrome(IBS)
- Gastroesophageal reflux disorder (GERD)
- Acid indigestion
- Abdominal pain
- Abdominal gas
IBS is significantly more prevalent in fibromyalgia patients.
IBS occurs in approximately 15% of the general population, whereas, 33%-77% FMS patients are found to have IBS (Horowitz, 2008).
- Irritable bladder – Symptoms such as bladder spasms and frequent urination are present in an estimated 25 %. Having this issue can further contribute to sleep problems.
Sensitivities & Dizziness in fibromyalgia
- Temperature sensitivity – Hypersensitivity to hot or cold can cause chills or profuse sweating when others around you are comfortable.
- Sensitivity to loud noises and bright lights – Hypersensitivity to loud noises, bright lights, and odors can add to the already bothersome symptoms you may have such as headache and nausea.
- Dizziness can last from a few seconds to days at a time and can pose safety issues. Dizziness can bring other symptoms of nausea, near fainting, headaches, etc.
Musculoskeletal related fibromyalgia symptoms
- Stiffness is present in over 75% of fibromyalgia sufferers. It is more prominent in the mornings upon rising. Stiffness can last anywhere from a few minutes to all day.
- Restless Leg Syndrome (RLS) is often described as a severe sense of un-comfortable tenseness sometimes painful feeling in the legs which can be relieved with movement. It makes you want to get up and jiggle your legs like crazy to make it go away. Restless legs syndrome is found to be significantly prevalent in fibromyalgia patients (Yunus, & Aldag, 1996).
- Leg cramps – If you have fibromyalgia, you may have low magnesium levels which can contribute to muscle spasms and leg cramping.
Exhaustion related fibromyalgia symptoms
- Fatigue is a major factor in FMS and is thought to be caused by lack of restful sleep. Performing everyday activities can feel daunting and just impossible.
- Sleep disturbances – Research shows that the sleep disturbances associated with fibromyalgia are caused by an abnormality of deep sleep, chronic pain, or restless leg syndrome. During the deep sleep cycle, if you have FMS, you will have abnormal brain waveforms. This abnormality prevents an adequate deep sleep cycle. The inability to achieve deep sleep disrupts the hormone somatostatin which is important for the health maintenance and repair of muscles. Ouch!
Fibromyalgia Syndrome (FMS)
Fibromyalgia syndrome (FMS) can be a very exhausting illness. It can even be incapacitating. Simply said it can take the zap right out of you and your life. If you have this condition you may have trouble getting out of bed in the mornings not to mention the difficulty you may have with everyday activities.
It is considered one of the most common rheumatic syndromes affecting 3-10% of the general population with the majority being women aged 20-50.
Fibromyalgia symptoms can negatively affect your quality of life.
Unfortunately, fibromyalgia symptoms can mimic other diseases such as rheumatoid arthritis, thyroid insufficiency, lupus, and polymyalgia rheumatica as well as other autoimmune disorders. Due to these similarities, the other diseases may need to be ruled out first. This is really a bummer, but it may be necessary.
Do You Have Fibromyalgia?
This is what we all want to know at one point or another. If you have the above symptoms you may very well have fibromyalgia. However, you do need to talk to your doctor to discuss your symptoms and possibly rule out other illnesses. Your doctor is the only one who can diagnose you with fibromyalgia.
Here is a helpful Fibromyalgia Symptom Checklist you can download and print. Be sure to write notes in the ‘note column’ to help you remember what you need to talk to your doctor about.
Fibromyalgia Symptoms Resources
You are not alone. This is perhaps one of the most critical things for all of us to understand. If you are plagued with these weird, hard to explain symptoms and you have been to the doctor again and again trying to figure out what’s wrong, you are probably at your wits end. Maybe you’ve even wondered if you are crazy. It’s even possible that some of your friends and family think you might be.
Please do know we understand. There is an enormous family of co-sufferers out here who understand. We’ve been there and still live there to a certain degree. The great thing is that people now know this stuff is real. Sometimes we feel like life is a blur, but we are here for you too.
There are a number of resources to help you connect with others who share your journey. Of course, there are local support groups, if you feel like going anywhere. If not, you can find some great friends in internet support groups and just be online buddies.
These types of resources truly help. Having someone to talk to, type or text to and who understands what’s going on with you can make a world of difference. It kind of depends on what kind of interaction you are interested in as to which will be best for you.
There are many Facebook groups you can check out when you’re ready. Just begin typing fibro in the search bar and you will find many to choose from.
If you’re not into Facebook, there are also several online forums where you can chat with fellow fibromyalgia sufferers. For some folks this doesn’t feel quite as personal as Facebook and they like it better.
Educational & Informational Resources
Other online resources are educational and informational. From the National Fibromyalgia & Chronic Pain Association (NFMCPA) to WebMD resources, the list goes on and on. Fibrotalk used to be a pretty good one, but they seem not to be taking any new members currently. Maybe check them out later to see if they’ve opened up again. Don’t worry if they haven’t, there’s plenty of other resources to choose from.
I really wanted to do an awesome job of explaining what different resources are available, but I have run out of space here. Never fear, I decided to go ahead and write another post about just that. It’s not gonna be all bells and whistles, but you’ll find lots of information on great resources, what they offer, cost/free and more. I’m trying to do a little homework for you. Thought that might help a bit.
I’m running over there now to put all my resource information together so you can have a concise one stop shop for just about anything you could need. I’ll update the “check out this post” in the next sentence with a hyperlink as soon as it’s ready. Check out this post and let me know if I left anything out. I’m always happy and willing to update information so we can all share.
In the meantime, you can check out some of the resources below. Empower yourself with knowledge to understand. Embrace your co-fibromyalgia sufferers, make friends and live! Share your personal experience because there’s only one you!
Natural Health Post as a Resource
Here at NHP we don’t have a support group set up yet. We may in the future, but honestly first we need to grow our readership. We (and I mean you, me and all the NHP readers) should begin to establish a dialogue first and once we get enough folks involved, you can help decide if a support group is in our future.
I would like start off, though, by offering you a chance to share your story. Please comment below and share your story with fellow Natural Health Post (NHC) readers. We learn much from one another about the disease process, but we also learn what helps and what doesn’t.
One word of caution though. It’s important to remember when reading through the comments, just because a solution does or does not work for someone else, it may be just right for you. So as they say, “don’t throw out the bathwater just yet.” You need to dip your toe in first and see what works for you!
Until next time friends…in nature with you,
Read More about Fibromyalgia:
Fibromyalgia Network: Symptoms
Tierney, L.M., Jr., McPhee, S.J., & Papadakis, M.A. (2001). Current medical diagnosis & treatment.;New York: McGraw-Hill.
American College of Rheumatology: Fibromyalgia
WebMD: Fibromyalgia Symptoms
Yunus, M.B., & Aldag, J.C. (1996). Restless legs syndrome and leg cramps in fibromyalgia syndrome: a controlled study. British Medical Journal, 312, 1339.