…the most dreaded, utterly useless, and dangerous question asked by doctors if the patient may have Fibromyalgia. It only took me about 52+ doctors and a trip to the Mayo Clinic to develop physiological reaction of fury when I hear those words. Those words almost killed me on multiple occasions.
This is my personal list of my chief complaints depending on what day you ask me:
No I don’t have all of these at one time
I have a handful of any of these at any given time. Alternatively, I may be having a great day with no symptoms.
Most Fibro’s lists begin with “pain,” I, however had been taking a drug called Tramadol(Ultram) for a nasty untreatable back injury. Tramadol just happens to be a very effective medication for the pains associated with Fibromyalgia, hence I got lost for 7 years in the maze of the United States medical system.
Generalized Anxiety Disorder: This is my absolute worst symptom and would be the one that would make me want to end my life. constant, relentless worrying about things or in my case there is no situational cause. I can describe it best as: There is a little person on my brain there jumping up and down on my fear button for no reason whatsoever.
little situational anxiety. It just comes and stayed for many years until the
Xanex and the Gabitril. (Praise Gabitril!!!)
I’ve been in the medical system since 2003 now and have seen a lot of very horrible treatment of patients with anxiety. Let me make this one thing clear, because of doctors who insist that no one should take benzo’s, or should be weaned off asap. Too bad. I have been trapped in my home for a couple years with no benzo’s because of the doctor’s view of benzo’s and I had to order what I could find on the web or when that was not possible I would have to nibble on an Ambien all day to try to keep the adrenalin down.
I have many horror stories of extreme panic attacks, which could’ve been easily averted with a benzo. There was a time with a doc in Kansas City, who literally took away my bottle of Xanex I got from the Mayo clinic visit, she was so anti-benzo.
My mom has had severe anxiety for over 30 years non-stop and takes 2-3 atavan a day for the past 30 years and does just fine. She’s tried every medication for anxiety and nothing works. She is 71 and has a boyfriend and lives a happy active life. If you even try to convince her to try just one more pill, she has refused. Yes Fibro’s actually seem to become more energetic when taking a benzo, not groggy. It acts to reduce inhibition.
Listen up all doctors treating a Fibro patient whose anxiety is so bad it can lock them in their homes for months at a a time. So let’s get this straight right now: I keep a stash of benzos. I cannot afford to go to the hospital and pay $1000 for them to give me a Xanex. Just the fact that Fibro’s know there are the pills there if needed, is enough in and of itself to keep anxiety lowered. When we first moved to Chicago it took 15mg of Valium just to allow me to leave the house, and drive my car to a mental health clinic a few blocks away. In addition, a month to keep trying to get the guts to leave the house for any reason was impossible, due to the associated agoraphobia.
Agoraphobia-- Can feel like anxiety about everything and nothing all at once. Everything in your being is telling you not to leave the house today for no reason, or because you have too many other Fibro symptoms and feel like you might cause an accident. Sometimes it’s just the lack of inertia to leave the house and once you force yourself you feel great. Only you can judge if it’s an inertia problem or you really are too clumsy or fibro-fogged or anxious to be going anywhere.
Clumsiness, loss of balance and coordination-–with or without anxiety or agoraphobia, so it’s not a good time to leave the house or drive when it is severe.
Depression—depression is often associated with those who develop a life-altering chronic illness and has a major impact on a current lifestyle that has to be changed. Learning coping skills and reaching the “acceptance stage” will significantly reduce depression.
Suicidal Depression—is usually experienced by those who do not seek treatment, or refuse to adhere to lifestyle changes and are not allowed to have tranquilizers when they are clearly called for. By this point you are no longer able to answer the pone (you even have to turn the ringers off to avoid the adrenalin rush, which can set off a panic attack.
Misdiagnosis leading to incorrect medical treatment is a common problem in the medical system today that leads to hopelessness and suicide. The illness has no cure, can leave you to believe it will never relent, and believing you will always be a burden on your loved ones is a miserable state of living. Remember Kevorkian assisted 2 Fibromyalgics to end their lives. They tell us Fibromyalgia cannot kill us. Yes it can.
Mood swings –mild bouts of depression are often due to changes in air pressure or weather in general or not having eaten a proper low-carb, high protein diet that day or allowing yourself to get to the hunger stage. Resulting in low blood sugar that can cause fear, rage, anger, mania, anxiety, sweats, fatigue, etc.. EAT YOUR PROTEIN. Never get to the hunger stage. This will ease anxiety as well or better than tranquilizers.
Constipation and/or diarrhea, abdominal pain, at the SAME TIME!!!
Low-grade fever that can raise over 100 in the afternoon, resulting is:
Chills—Feeling like you are coming down with a cold or flu, but it never materializes
Below normal fever-usually during “better days”
Dry Eye-, which is not often relieved with OTC preparations
Fatigue and Deadening fatigue
Lethargy -loss of inertia to get up and do anything. It’s a mild form of anxiety and can actually be relieved by a tranquilizer. Sounds pretty much like the opposite of what a tranquilizer is for, but it’s true.
Feeling like you’re having a heart attack
Itchy anywhere or everywhere
Jaw Pain one side or both
Nodes under jaw pain
Teeth pain, all or localized: there have been Fibros who have had unwarranted root canals because the pain was never associated with Fibro.
tinnitus (ringing in the ears)
Eyelids: Upon wakening or during the night you rub your eyelids and there is fine sandy grit. Many develop a habit of rubbing their eyelids during the night and aggravating the fragile skin around the eyes and the eyes themselves.
Memory lapse, difficulty concentrating/ “Fibro Fog” This is a result of the previous nights lack of deep sleep. You can be looking for your keys and staring right at them and not see them. You can get lost driving in your own neighborhood.
Transposing numbers and words. Inability to remember even a 3-digit number for more than a few seconds.
Noun substitution—You want to say: “Open the garage door” but what comes out is “Pop up the toaster”.
Severe Fibro Fog can result in not being able to form a full sentence, loss of a large portion of your vocabulary, and forgetting what you were saying by mid-sentence, thus sounding drunk or retarded.
Inability to multi-task – when it gets bad it’s difficult to even manage one task. Like making a simple sandwich takes all the mental abilities you have at that moment, and you can still forget an ingredient.
These brain related problems can cause anger and frustration “Fibro Frustration” or “Fibro Fury” when you lose the ability to even describe your symptoms. When these symptoms are severe you often feel overwhelmed and just have to leave a situation in anger and tears because you cannot handle even the simplest of tasks or instructions. You feel like an idiot and are embarrassed.
Numbness and tingling in hands, arms, feet, legs, and/or face
The numbness can feel like there is no circulation going to that area.
Both my feet went totally numb while on a trip to the grocery store. I wanted so badly to get out of the house I held onto the cart and it felt as though I was walking on the nubs of my ankles.
Cold hands and feet. I’ve been told this since I can remember.
Veins sticking out of your skin that look navy in color. While your skin is almost white. Squeeze your wrist tightly for about 30 seconds to demonstrate this symptom.
Sensitivity to light—The sun seems too bright. Images are retained/retina burn-in, so when you look into the darkness you see the negative of the scene you were just looking at. However, the image persists much longer than is typical. The darkest of sunglasses don’t’ help when there is still light pouring in the sides. It can bring out skin problems like rosacea, melasma, etc. Often people describe these times as feeling like a vampire.
Sensitivity to sound: When you are having a bad fibro day sound can drive you mad. I always use earplugs and a pillow over my head or move to the couch if my spouses’ alarm clock is gonna go off…I know I’ll be like a frightened cat that flies to the ceiling with it’s claws dug into the ceiling and you’ll want to KILL THE SOUND OR THE PERSON MAKING IT. Again this is directly due to the severe anxiety. I used to freak out every time a cat jumped on the bed.
Vision changes- frightening anomalies, many due to retinal burn-in.
However, there are more severe ones. I had one while driving and in the blink of an eye it was as though I was driving totally drunk. It was the scariest and most dangerous thing that’s happened to me where I could’ve endangered myself or could’ve killed another driver. I tried to close one eye, shook my head. If I’d been on an expressway, I’d be dead. I finally got over to a curb and was only 5 seconds from home, so I made it alive. I no longer have a car and never drive far from home and only on side streets. It only happened that one time.
Painful vision: looking in different directions by moving only your eyes hurts the muscles behind the eye.
Floaters—(Small bugs seeming to fly around) bits of debris in the vitreous humour, the gel substance mine are just your regular garden variety bug-type floaters -- not serious.
Pain at the back of your tongue when sticking your tongue all the way out can be used as an indicator if your body pain you are feeling that day is related directly to fibro as opposed to just a workout the previous day.
Weather changes: temperature seasonal change, humidity change, and/or changes in the air pressure. Weather related changes often bring out generalized anxiety, agoraphobia, and pain or just about any Fibro symptoms that want to pop out. I have the air pressure problem. When the barometer is dropping quickly I get anxiety/agorophia. In addition, flying makes my Fibro flare up for days/weeks after a trip. This has been awful for our marriage, as I cannot take vacations or plan anything ahead of time.
Sleep disturbances—In severe cases of total insomnia, if I am awake for 4 days I am in danger of having a seizure. Other problems include: nightmares if my blood sugar drops in the night. Having to pee multiple times during the night. Or seeming to sleep just fine but never reaching the deep levels of sleep which is as bad as not sleeping at all. It results in groggy mornings and fatigue, etc.
At the 4 day mark of not getting sleep I begin to get the visual disturbances, which are an indicator that I need to prepare to have a seizure (put on hospital appropriate clothes, wear a maxi pad in case I pee! Unlock the front door for ER technicians, and call my husband to check on me.) The final symptom I have prior to the seizure is that something of bright color appears impossibly vivid and glowing. The first one was the pineapple at a buffet, the 2nd one was a pink Ethernet cable.
The first episode I was standing and collapsed, causing a few injuries, so they diagnosed syncope, even though a registered nurse watched the whole thing and insisted to the ER guys I had a grand mal seizure. They said I didn’t pee my pants so it wasn’t a seizure! The next time I was lying on the couch watching TV…kind of hard to faint while lying down! Since I’m not there to witness these things, I have to rely on my husband. He seldom will discuss it because it was just too graphic and frightening to him.
Serious carb and salt cravings. Usually worse at night. When flares are bad carbs are the only thing you can even imagine eating. However, this makes the Fibro worse so I must have low-carb snacks and no carbs in the house whatsoever. I once gained 40 pounds on Toaster Strudel, but they medically needed to get my weight back up to a normal range. It hurt to digest food more than not eating, but eventually the dehydration sent me back to ER for a $1000 container of saline to get me pumped back up!
Unexplained toothaches: It can feel like all your teeth hurt, or some have undergone multiple root canals when they were not necessary, I’ve had a root canal of a tooth that appeared fine (my front tooth)…I’ll never know if it was actually needed because there were no signs except my pain.
Severe Menstrual cramps: How ‘bout SEVERE/and UNBARABLE Menstrual cramps! Keterolac was the only pill strong enough to combat the heaviest day, and yes I know the danger of that pill. I only needed one or 2 each cycle, then step down to diclofenac, then to melexocam, then to Advil for the remainder of that cycle.
Hypoglycemic symptoms. I must carry a low carb protein shake if I ever get the chance to leave the house.
Difficult to urinate-having to push and it never empties completely. I was having a trans vag sonogram and had just emptied my bladder, or so I thought. When she began the test, I was told my bladder was still very full.
Mouth lesions—not too bad now, but I still want surgery to cut off the extra skin (scares) that are creeping into my smile
Osteoarthritis Mom had both hips replaced at age 55, no I’m not kidding. Call her 828-665-9855. Ask her about how long she’s had anxiety while you’re at it.
Swollen glands—I think so.
Difficulty swallowing feels like a lump in throat—twice, but scary
Sore throat—constant in the AM
Stiff neck—I never thought so, Rheumatologist says it’s bad
Reflux esophagitis GERD- this goes with the heart attack question, yes.
Headaches-tension: like a band around your head
Headaches- occipital: at the rear/base of my skull
Ocular Migraines: visual anomalies without the pain.
Night sweats—all gone since keeping great sleep hygiene+Melatonin
Shortness of breath
Loss of libido-again, stupid question. YES
Low back pain-
Nail ridges and/or nails that curve under—I file the ridges down
Difficulty speaking known words. Yup, I’m actually beginning to stutter a bit.
Directional disorientation—don’t all women have that?
Tearing/reddening of eye, drooping of eyelid I had surgery to correct the extra skin.
Loss of ability to distinguish some shades of colors I’m a color scientist and have not had access to the best test on the planet since the loss of my career, but this disturbs me since teaching about how we see color was one of my tasks before I got sick. Very ironic and saddening in my case in particular.
Falling sensations before sleep –don’t most people have that?
Irregular heartbeat –very seldom and just one beat kind of seems like it hesitated, just a split second longer than the others.
Heart attack-like pain used Prilosec, fixed it up.
Bloating pretty bad
Mottled skin-melasma in the lupus shape + forehead
Tendency to cry easily- If you had all this crap wouldn’t you cry a lot? What a stupid thing to list.
Night driving difficulty-Can no longer do it at all.
Lax, pendulous abdomen
lower leg cramps
Tight Achilles tendons
Numbness and tingling
Hypersensitive nipples/breast pain
Problems climbing stairs (on Guai I could run for miles, but the stairs, forget it, too hard. Only going up though.
Unaccountable irritability—only with fast weather changes
Handwriting difficulties…getting worse since 2003
Problems holding arms up (as when folding sheets) ouch and weak
Restless leg syndrome-seldom with use of Melatonin
Myoclonus (muscle movements and jerks at night)
Feeling continued movement in car after stopping
Pressure of eyeglasses or headbands is painful
Stripes and checks cause dizziness—any regular frequency pattern appears to move or is actively waving, I am forced to look away and things like mini-blinds on windows.
Flourescent flicker feels like I'm gonna have a seizure
Flourescent flicker feels like I'm gonna have a seizure
Bruxism (teeth grinding) I must use a “night guard”
Inability to recognize familiar surroundings mostly in the dark. I’ve run smack into a wall when I was sure that was the entrance to say the bathroom.
Family clustering My Mom has Fibro pretty bad, but refuses to admit it. She insists she does fine on her Atavan, and has never had to increase the dosage in 30 years. She’s really is quite amazing for 71 with her happy attitude and the only other pill is for thyroid. You’d swear she was on some sort of happy pill.
Tissue overgrowth (fibroids, ingrown hairs, heavy and splitting cuticles, adhesions) --Yup got all them. I really should get another laparoscopy to have my scraping done. It’s a war zone in my pelvic area. I’ve had fibroids the size of a grapefruit.
Small areas all over your body that when touched right on them feels like a bad bruise, but there is no bruise.
Subcutaneous lumps-often surrounding these small bruised-feeling areas. Always had them until Guai, but not gone on the hips. In addition, since starting
Absence seizures. I’m still in there at the beginning but it’s usually a decision I’m having to make and the decision section of my brain is turned off.
Therefore, they start with a needed decision:
Example: ”Choosing a soup bowl for a meal”.
I run through all the pros and cons of the 2 bowls, then awaken not knowing how long I’ve been standing there and what I was even there for.
Can you imagine the problem grocery shopping on a day when I have that symptom? I am forced to take one of every brand or flavor or force myself to go to the next item on the list. It takes me about 2+ hours and afterwards my blood sugar is usually so low I feel I may faint at the check out line. I’m drenched in sweat and so weak and mood swings way over to anger, (at my condition) seldom outward, that I can recall.
I have to leave the groceries in the car until I get some food in me. And cry my eyes out ‘cause poor little helpless Debbie can’t even get the groceries purchased….we call those “pity parties” on the Guai support group site.