“The List…”

This is…BY FAR…the best list of Fibromyalgia symptoms I have ever found.  Yes, the Google addict is at it again.

 This is comes from http://abarnabas.tripod.com/indexfibrosymptoms.html .  The website states that this list comes from a college project.  Let me just say, I am impressed.  The list is long, and you know what?  It should be! So many of these symptoms are left off of the usual lists you’ll find, even those lists made by medical professionals.

PAIN – diffuse musculoskeletal pain and fatigue. The syndrome is defined by the presence of musculoskeletal tender points on physical examination. Pain is often described as aching, burning, throbbing, gnawing, shooting &/or tingling. It can be localized, generalized, can feel like muscle spasms and can be scattered throughout the body. It may be migratory, with pain presenting in one or more areas on one day and other areas on another day. Pain is often experienced very quickly after any repetitive movement – even something as simple as holding arms up to brush or comb hair etc.

(I’m so glad they mentioned repetitive movement.  This is why I, personally, can’t lift weights.  Sometimes repetitive movements with things like scrubbing while cleaning can also send me into a flare.)

Numerous vague unspecified symptoms that wax and wane and cause fibro sufferers to “just never feel good”.  

(Absolutely!  Always feeling kind of “sick,” or in my case, constantly feeling like I have a fever.  This had lead me to multiple wasted co-pays made to doctors thinking I was sick when I actually wasn’t.)

Due to the lack of Stage 4 sleep, muscle repair does not occur properly and therefore muscles take longer to heal and regenerate after micro injuries or trauma, as is experienced by everyone in day to day life. Micro trauma during exercise is not repaired in FMS patients in the same manner as it is in normal people – thus the muscle stiffness causes much more distress in fibromyalgics or FMSers and takes longer to subside, therefore exercise is not refreshing but continuously causes pain making patients reluctant to engage in an exercise routine.

(I wouldn’t say it’s not refreshing, you have to continue to try exercise programs that finally bring that refreshing feeling, but it does come with giving yourself time to recover.)

Fibromyalgics have 3 times the amount of Substance P in their bodies than do normal people. Substance P is the vehicle that carries pain stimuli to the brain. The brain may also interpret the pain improperly and respond inappropriately. What might be experienced as a “tickle”, itch or annoyance normally – is often experienced as pain in those who suffer with FMS. There are often more pain receptors in FMSers, therefore pain is magnified.

(So…what does pain feel like to “normal” people??  I wonder that all the time!)

Bilateral Pain in various points in areas throughout the body. There are 18 TPR’s – Diagnosis of FMS is made if pressure on 11 of these 18 points causes pain. Areas throughout the body may feel “bruised” when touched. The tender point is considered to be positive if an approximate force of 4 kg. of pressure causes pain when applied to the specified points. Widespread pain must have been present for at least 3 months with the associated tenderpoint pain in order for Fibromyalgia to be diagnosed.

(This takes FOREVER to get diagnosed, and usually people wait much longer than three months before they are pushed and pinched in these tender points by a doctor. If you’ve ever had your sinuses pushed on by a doctor during a really bad sinus infection, take that pain times ten, only they’re pushing on places on your body from head to toe.  After a Doctor’s appointment where this happens, it feels like you’ve been hit by a truck.)

FMS patients may bruise more easily than others and some may experience excessive bruising.

(Thank you, thank you, thank you for mentioning this!  I bruise so easy!)

Temporomandibular Joint Disorder: in many FM patients, problems are encountered because of the abnormal tone in muscles around the joint, not because of abnormalities in the joint itself. (Pain in the face and jaw.)

Grinding of teeth at night.

Clenching of jaw at night.

(These three have all combined for me in the last few weeks.  My teeth are KILLING me.  I questioned going to the dentist, but wasted co-pay…the last time I mentioned pain at the dentist, they found nothing really wrong.  My teeth have hurt so badly, then my jaw hurts, and it’s just plain miserable.  This usually passes after awhile, but it takes awhile)

Headaches: tension &/migraine. Visual Migraines may also be experienced. (Search Visual or Ocular Migraines for more information)

(usually the reason behind my morning Aleve.  I wake up almost every morning with a headache that feels like a hangover)

Recurrent sore throat.

(again…wasted co-pays)

Chest Pain: Non-cardiac pain that may simulate cardiac disorder. This may be Costochondritis which is pain in the sternum or breastbone where the ribs attach. (Search Costochondritis for more information.)

(I wrote a blog about this.  This is not only painful, but scary.)

Heart murmur: may be Mitral Valve Prolapse. (MVP occurs in up to 75% of fibromyalgics. Search Mitral Valve Prolapse + Fibromyalgia for more information.)

(hmm…I get heart flutters when I’m really tired)

Heart palpitations.

Heartburn and digestive problems.                      

(Heartburn is an understatement.  I might as well put a lit match on my chest when this comes up, I think the burn from the match would be less painful)

Esophageal dysmotility or reflux.

(self explanatory)

Back Pain: usually low back pain – may be exacerbated by muscle spasms in this area. A pillow placed under the thighs to tilt the pelvis while in bed may help, as it flattens the low back against the mattress. Pillow should not be under the knees as this might contribute to causing blood clots.

(hehe…hear that Hubby?? The argument still continues about having my extra pillow between us each night.)

Sacro-iliac instability and pain.

Joint Hypermobility and Laxity: lax ligaments or what is commonly referred to as being “double-jointed”. People who have this condition often ache and are more susceptible to osteoarthritis later in life. Studies suggest that joint hypermobility and fibromyalgia are associated and that the hypermobility can play a role in the pathogenesis or development of pain in fibro.(For more information search Joint Hypermobility + Fibromyalgia)

(I have double jointed elbows and toes.  “Monkey toes” as they’ve been nick-named.   Had no idea it could have an impact on my Fibro.)

Arm and Shoulder pain: Often burning type of pain – often between the shoulder blades. May go across shoulders and down arms. Neck may also be sore &/or stiff. Arms may ache or pain may be severe in them. One side may be more painful than the other. A small pillow placed under the arm to elevate it slightly when lying down is often helpful, as arms tend to drop down on the bed and pull on the neck and shoulders. When riding in a car, it is often helpful to place a pillow over your knees and rest your arms on it. This helps elevate the arms and shoulders and can alleviate the “drag” one them and stop arms from going numb if this is a problem.

(*ahem* again…they’re suggesting an extra pillow.  My shoulders and neck are where I carry almost all of my “regular” pain.)

Postural Changes: shoulders hunched forward or rounded, head thrust forward with neck kinked forward, chest sunken, low back pushed forward causing abdomen to protrude, knees locked, muscles in back of thighs flexed – all a mechanism to find a comfortable position.

(This is terrible for people like me who work on a computer all day.)

Painful lymph nodes: under the arms and in the neck.

(Hmm..interesting!)

Carpal tunnel syndrome: numbness, tingling and pain in wrists, hands and/or fingers. Pain in hands makes writing, typing, wringing out dish cloth etc difficult. Pain when plunging hands into cold water. (also pain maybe experienced on entering the water if swimming in cold water).

(Again, terrible people constantly on computers.  I also totally agree with the cold water.  It’s like being burned in reverse.)

Paresthesia: Numbness or tingling (non-dermatomal) Numbness in arms and legs.           

(This is also a little scary.  I pushed myself too hard working out the other night and lost all feeling in my wrists.)

Raynaud’s – like symptoms – numbness and tingling in the extremities especially in fingers, exacerbated by the cold.

Many fibromyalgics feel cold even when it is not particularly cold inside or out. Often hands & feet are very cold. Sometimes the sensation of cold seems to cause pain as well as giving the sensation of cold. A warm shower will usually help to alleviate this sensation whereas turning up the heat in the house does not.

(A total problem right now at work, as my office mates LOVE air conditioning.  I keep my space heater going, even through the summer, as well as keeping all my windows open just to try to stay warm.  It makes me super grumpy and impatient because I just can’t get people to understand cold is not just “annoying” but very painful.)

Tennis Elbow: Pain in elbow and forearm.

(I do ok in these areas.)

Dry, itchy, blotchy skin &/or skin rashes. Especially on the face by ears and jaws and on forehead.

(My legs and hands are my problem, especially in the winter. It gets really ugly by the end of the season.  I’ve yet to find a solution to this problem, as I seemed to have developed a resistance to steroid creams to help it.)

Ridges: may develop in finger nails and toe nails. Nails may split. Nails may break off easily. If they do grow they may curve or curl under.

(checking my fingers and toes…they look ok to me!)

Restless Leg Syndrome: Aching in legs especially at night causes legs to be moved constantly in an attempt to ease the pain or aching.

(I go through phases where this is an issue, thank God it’s not ALL the time for me, it’s not only annoying to the person who has it, but to anyone else who shares a bed with that person.)

Weak knees and ankles. Cramps in legs.

(I have to constantly change tennis shoes for Zumba to prevent this.  It’s an expensive problem.)

Foot Pain: Plantar arch or heel pain, may be plantar fasciitis or just “fibro feet”. Orthopedic shoes and orthotics may help.

(see above)

Muscle and joint aches.

(duh)

Severe muscle weakness.

(yep)

Muscle spasms: may feel like tight knots or charlie horse or lumps. Muscles contract but do not release properly. Muscles apparently may contract without receiving stimulus from the brain.

(Ever get a “runner’s cramp”- Try getting them is really weird places like the bottom of your foot, or your neck.)

Twitching: can be muscular – may experience eye twitch or a facial twitch.

(My face twitches during Pilates.  I can only hope my instructor doesn’t think I’m winking at him.)

Burning sensations in muscles throughout the body.

(I’m not really one for this problem, but many other fibro people mention it.)

Nausea: may be caused by overload of pain stimuli bombarding the brain – nausea may also be experienced when moving from a horizontal to a vertical position.

(Welcome to my mornings)

Recurrent flu-like illness with muscle pain and aching.

(ahhh…I’m now realizing…oh..SO many co-pays wasted!)

Weight change: – usually gain – a feeling of swelling or puffiness might be experienced. May experience retention of fluid for a few days and then return to “normal”. May “feel” swollen even if inflammation and swelling are not actually present. Weight gain may also be due to various medications used to treat fibro.

(Thank goodness for Zumba)

Hair loss: hair may come out in great “gobs” when combed or brushed. May notice hair coming out when it is being washed as well.

(This was a problem for me a few months ago.  Seems to be doing better.)

Sleep disturbance/non restorative sleep: may be described as not being able to fall asleep, not being able to stay asleep or more common, “I feel like I haven’t slept at all”. May awaken frequently and be unable to return to sleep for some time. May wake up “full” of pain and feel “more tired” than on going to bed.

(I can’t remember the last time I didn’t wake up feeling completely exhausted)

There is a disturbance in the sleep pattern and fibromyalgics are not able to enter into stage 4 sleep, thus they awaken frequently through the night when they reach Stage 4. One may also feel that they are awake and asleep. In essence what happens is that there is brain wave activity of sleep going on in the brain and at the same time there is brain wave energy of being awake going on – almost like the sleep patterns and awake patterns are playing in the brain at the same time. Restful sleep is never achieved. Thus there follows deep aching discomfort throughout the body and the feeling of being exhausted. The shoulders, neck and low back are often the most painful.

(This is one of the worst feelings in the world.  I wake-up (?) often wondering if I’m actually awake or asleep.  The only thing I know for sure is I just feel really tired and I know I’m not resting properly.)

Frequent, unusual nightmares or being unable to dream – “black” heavy sleep may be experienced if medication is taken to aid staying asleep.

(Screaming in my sleep, or when I do dream, it’s so incredibly realistic it puts me back into that “Am I awake or sleeping” feeling.

Night sweats: wake up drenched in perspiration, then become very cold and maybe even start to shiver.

(All the time)

Intolerance to cold: muscles contract in response to exposure to cold – cold weather, cold drafts, ice packs etc. Sometimes referred to as muscle jelling as in jello – jello is fluid and liquid when warm and jells when chilled. Extreme sensitivity to seasonal changes, climatic changes – rain and impending storms. Most Fibro patients find that their muscles respond to the application of warmth but that application of ice packs or cold intensifies pain.

(I actually just read where someone recommended Ice packs to put on Tender points.  Do they have ANY idea how much this would hurt?)

Body temperature fluctuations – hot one minute and cold the next. Perhaps inner “controls” (thermoregulatory system) are out of whack.

(Again…all the time.)

Fatigue – can be described as feeling tired to being extremely exhausted after minimal physical exertion. Sometimes a short nap in the afternoon may help relieve the feeling of fatigue, yet some people require frequent rest periods to get them through the day. Sometimes the fatigue can come on suddenly for no apparent reason and can be very debilitating. Short periods of exertion can require long periods of rest to recuperate. Can be severe and have a sudden onset even with minimal physical exertion. May experience sudden debilitating fatigue that makes it necessary to immediately stop whatever one is doing and go and rest. May be experience as a sheet of fatigue descending over one. It is so debilitating that patients are often left wondering how they can carry on – “I’m just too tired to keep on living”

(That sudden onset is also awful to deal with.  I just had an instance where my husband and I went out to breakfast and we drove home with me in tears because I was just so damn tired.  Miserably tired.  I took a three and a half hour nap for the rest of the day.  I get so frustrated with this symptom, feeling like I’ve lost whole days of my life to sleeping.)

Lightheadedness

(Again…welcome to my morning)

Vertigo

(No more roller coasters or rides for me!  I would walk sideways for a week!)

Disequilibrium – impaired co-ordination: misjudge distances – bang into door frames, walk into furniture, walls etc.

Cognitive function problems: such as attention deficit disorder, calculation difficulties, memory disturbance, spatial disorientation, difficulty with concentration and short-term memory. These things are commonly referred to by FMSers as “fibrofog”.

(My husband just point to all of these and said “Yep to that one, Yep to that one…”  Guess that answers that one…humpf)

Neurogenic inflammation: rashes and hives, inflammatory sensation, with rashes that may be severe, severe itching with inflammation – initiated by nerves.

(Hives.  Sometimes right after Zumba and I’m not sure why.)

Alteration of taste, smell, hearing. Some odors may make one nauseous.

(The smell of our bathroom spray at work just about sends me running out in tears.  I would rather them just not use it…yes, that’s gross, but so is green apple scented spray…yuck..I’ve got to stop thinking about it, it’s making me nauseous.)

Sensitivity amplification: may be more sensitive to smells, sound, odors, lights, pressure and temperature fluctuations, vibrations and noise etc. – the buzzing from fluorescent lights, hum of computer, buzz of overhead hydro lines may become almost unbearable to an FMSer at times. FMS hyper-sensitizes nerve endings.

(The sound of the copier at work sometimes give me that “nails on a chalk board” feeling.  Not good for an office manager.)

May develop food intolerances, allergies and chemical sensitivities.

(I’m all of a sudden having issues with cranberries…weird.)

Changes in visual acuity: impaired function of smooth muscles used for focus as well as skeletal muscles for tracking. May experience blurred vision &/or double vision. Some people require two or three different eye glass prescriptions as their needs change with the Fibro symptoms. May experience Visual or Ocular Migraines.

(I have trouble on highways.  It gives me the feeling that the road is moving side to side.  I actually thought something was really wrong with my car for awhile.)

Exaggerated nystagmus: involuntary rapid movement of the eyeball.

(Not that I know of)

Intolerance of bright lights/sunlight.

(*Bright light, Bright light!*  Did anyone catch that reference??)

Dry eyes and mouth: dry mouth can cause dental problems – dry eyes may cause inability to wear contact lens, may cause other visual problems, may require eye drops to keep eyes moist and free from infection. Eyes may be very dry at times and water at other times.

(Dental problems!  Oh no, now I’m worried about my teeth again!)

Hearing Loss: low frequency, sensorineural hearing loss.

(I’m blaming my hearing loss on the speakers in Zumba, not my Fibro.  This one is my own fault.)

Decreased painful sound threshold. Sometimes normal everyday noises become very irritating. May not tolerate radio or television well.

(Fire alarms-ouch.)

Ringing in the ears – ringing and sounds like the rolling ocean or whispers may be experienced.

(I’m sorry, I can’t hear you over the Latin music.)

Allergies: Severe nasal and other allergies and patients may also have a deep sinus infection.

(And they come unexpectedly and end with a night in the E.R. having an allergic reaction to a medication you’ve taken multiple times.)

Environmental sensitivities may develop.            

(Fresh cut grass, some people love it.  It makes me feel the same way as the bathroom spray.)

Enhancement of medication side effects.

(see above)

Intolerance of medications that were previously tolerated.

(Ha!  See above again!)

Intolerance of alcohol.

(teehee…I’m a lightweight!)

Intolerance of caffeine.

(But I love it so…)

Intolerance of processed white sugar and most artificial sweeteners.

(I’ve heard this causes headaches.  I’ve cut it out since being diagnosed just for good measure.)

Premenstrual Syndrome: swelling, tenderness and lumps in breasts are often experienced with PMS, painful periods as well as mood swings, exaggerated emotional responses etc. etc. as common in PMS.

(EXAGGERATED EMOTIONAL RESPONSES!!!! SHUT UP!!!….)

Fibrocystic Breast Disease: may be experienced by FMSers especially prior to period. Breasts may become very swollen and sore and be full of cysts or lumps that disappear after period.

(yep)

Frequent vaginal yeast infections.

(*sigh*…yep)

Vulvar vestibulitis or vulvodynia.

(I think I’m ok here.)

Interstitial cystitis.

(yep)

Irritable Bladder/Frequent Urination: might be uncomfortable or painful. Also bladders spasms may feel like a bladder infection.

(lord yes)

Foul or strong smelling urine: May smell like green hay. May be dark in colour.

(Maybe I’m just a city girl but, first off…that’s kinda gross, and second…what the heck does green hay smell like?? Do I want to know?)

Irritable Bowel Syndrome: alternate between constipation and diarrhea. Frequent abdominal pain, gas and nausea.

(awful, horrible, embarrassing, painful…I could go on…but my stomach is currently rejecting my McDonald’s dinner choice, so yes, some of this is my own fault.)

Depression: may be reactive or clinical. Often pain and feeling ill all of the time causes the depression. FMSers are depressed because they hurt. They do not hurt because they are depressed.

(self explanatory)

Anxiety: may include panic attacks.

(Hence the recent and WELL SPENT co-pays to the therapist)

Emotional lability or mood swings. May be tearful at times because life seems overwhelming.

(yep)

Irritability probably due to pain and inability to do the things that you need to do and want to do.

(see above at my frustration with my co-workers and the air conditioning.)

Personality changes: usually a worsening of a previous tendency. People who have FMS sometimes have a hard time accepting their limitations and the loss of the person they “used to be” – they may actually go into the mourning process. Because FMS is an “invisible” sort of illness – and patients often see many Doctors before being properly diagnosed, they often begin to doubt themselves.

(Terrible personal conflicts go on here.)

Fibromyalgics desperately need support and understanding from those closest to them but they often feel alienated because of their illness and inability to participate fully in many common activities of daily living. Many are unable to continue working at the jobs they love and thus lose part of the identity that their job may give them. They begin to lose their sense of independence and productivity and their sense of value.

(Read this closely)

Anger and resentment towards lack of understanding may alter FMSers personality drastically and cause even further alienation from family and friends. Along with this sense of helplessness and worthlessness that may develop, they may begin to feel guilty for not being able to be the person that others need or expect them to be. They may become extremely depressed and begin to lose interest in life altogether.

(Read this closer)

Fibromyalgia does not usually respond to anti-inflammatory medications. Initially there may be a positive effect but often this initial response subsides. Low doses of anti-depressants are often administered in an attempt to modify sleep patterns and serotonin uptake. Analgesics likewise often become ineffective once the body has become accustomed to them. Doctors are sometimes reluctant to prescribe narcotic analgesics due to the possibility of addiction. Various herbal remedies are found to have some positive effects by some fibromyalgics as are various vitamin and mineral supplement preparations. There are special herbal combinations specifically for FMS.

(Herbal combinations?  Hmmm…something to look into. My husband would like to add this “may or may not” mean pot.)

Exercise Programs are effective for some FMSers while they exacerbates the pain for others. Swimming is helpful for some people. Warm Baths are sometimes comforting especially if sea salt or epsom salts are added to the water. Heating Pads are helpful – either regular pads or moist heat. Infra Red Pads are also helpful for some patients. Analgesic rubs or liniments also bring some temporary relief. Massage, Reflexology and Chiropractic treatments are effective for some FMSers but tend to be aggravating to others.

(Find what works for you and stick with it!)

It is very important for those who suffer from this syndrome to remember that THEY have fibromyalgia and that fibromyalgia DOES NOT HAVE them!

(Read this the closest!)

 

 

 

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9 Comments (+add yours?)

  1. Ginger Ray
    Aug 21, 2012 @ 18:07:51

    Oh my goodness – this information is awesome!! I have read so many things online and I have to agree that this is a keeper. Sadly I am like you and as I read the symptoms I think I found that I DON’T have 5 of them. This illness is so frustrating. Blessings to you for posting. I may have to re-post this one.

    Reply

  2. Ginger Ray
    Aug 22, 2012 @ 19:20:48

    I have nominated you for the Lovely Blog Award. You can see info about this award at: http://dailylifewithfibromyalgia.com/2012/08/22/lovely-blog-award-2/ Congratulations!!

    Reply

  3. LadyNay
    Mar 07, 2014 @ 19:41:50

    I stumbled across your blog while searching for how to deal with a cold with fibro. After reading your post and the original list you linked to, I’ve come to the startling realization that while I thought I was dealing with cold symptoms for the last several weeks, it’s more likely that I’m having a major flare. Thanks so much for sharing.

    Reply

  4. Brenna
    Jun 20, 2014 @ 08:31:06

    Wow I really need to show my doctor and family this. Thank you for sharing the article. I keep trying like all these depression pills to help with the fibro and they just make me feel worst. I got diagnosed with fibromyalgia when I was 16 as a result of an accident when I was 14 involving my back and ankle. I’m 26 now and having a hard time trying to get independent. Work feels impossible to do and exercise makes me hurt, but I keep trying. My sister has been calling me worthless lately and it’s just making my mood worst. I try acupuncture, but it’s odd it makes my muscle spasms worst. It does help that I don’t get my legs going straight up and down for 8 hours non-stop anymore. I had to switch to home school in junior high and high school. I did manage to graduate college thanks to my mom and disability service, but now I’m just trying to figure out how to keep enough energy from my work at home job, getting certified to do taxes, and move out on my own. The article just hit on so many points I’m facing now.

    Reply

  5. Jackie
    Jun 25, 2014 @ 12:27:22

    wow! i just found your blog yesterday and i’m so glad i did! this list is amazing, especially the part on night terrors!! i always had nightmares as a child but since i started having the start of my pain two years ago it’s gotten rediculous and turned into full blown night terrors! my poor husband wakes up to me screaming bloody murder and he has a hard time waking me up (my record was 5 minutes, bad sore throat the next morning) what must our neighbors thinks O_0 thank you for finding this research and sharing!

    Reply

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