In 2003 I started to have pain in the muscles of my legs. A doctor’s visit found nothing wrong. As time went on I started to feel pain in other muscles. Down my back, back of my arms, calves, and back of my neck. OTC pain relievers did nothing. Trip to the doctor got narcotics.
They did nothing. Tried muscle relaxers with no results. The pain kept getting steadily worse. The doctor finally me told there was nothing he could do for me. I asked if there might be a doctor anywhere that could help. He said he didn’t think so but he put me in the hospital for some tests.
After 5 days my pain lessened somewhat. He didn’t find anything wrong so I went back to work. Within 1 day my pain level was so high I had to leave work. Called my doctor in tears and begged for help. After saying he didn’t think my pain level was that bad, he recommended that I see a Rheumatologist.
That doctor asked if I had trouble sleeping. I told him I dreaded going to bed as I knew I would wake up feeling worse than when I went to sleep. I told him it felt like I had been run over by a train. He asked if I had any places that felt sore when they were touched. Yes, two on my shoulder.
He started running his hands down my back and pressing different spots. Each spot was extremely painful. He found 16 different spots that were painful. After asking me several more questions he asked if I had ever heard of fibromyalgia.
No, l said. He explained the symptoms to me and some were things I was going through but didn’t think were related to my pain. I was in tears when I left his office. I knew I could not live the rest of my life in severe pain. He offered no medication or treatment plan except to say try to stay as comfortable as possible.
I headed to the internet. At that time very little was known about fibromyalgia. The word means muscle pain. I lived 5 years in constant pain until I came across a pain reliever that gave me some relief. I went to my regular doctor because I was getting very depressed.
When I started taking the antidepressant, I found more relief. I have been on these two medications for 17 years and on most days my pain level is around 2 or 3. In winter I have more trouble and the rainy weather isn’t so good.
I am of the opinion that they still don’t know what it is or what causes it. The medications they advertise on TV have never worked for me or else had too many side effects. I can tell you if you find a medication or combination that works for you stay with it.
The mix of non-narcotic pain relievers and antidepressants is what works for me consistently. I have tried everything that is recommended for fibro and these are the only two that works for me.
Anyone that has fibromyalgia has my sympathy. Good luck. I found out I can stand a lot more pain than I thought even though I am more pain-sensitive.
There are several issues in here, I’ll chop them into physical and mental issues just so I can tackle them separately.
Fibromyalgia is a serious illness. The pain goes on and you don’t know why or where. A friend of mine describes it as “you are in pain, that is all you know”. Treatment is scarce, sometimes what helps may cause the patient to lose other senses like they can’t smell anymore.
Living with someone with fibromyalgia means being sensitive to their pain. Pain is something that can be seen by another person but after a while, you get frustrated when you can’t help. Accepting your limit and not excepting your spouse to function normally is key.
Major depression is another issue. While depression can be treated or at least managed, in many cases the patient does not cooperate in treatment or the illness is severe. Living with a depressed person means you will have to understand that their mood may not have anything to do with you or anyone or anything at all. A lot of patience and the ability to be vigilant about your spouse’s mood changes will be required.
Quick to anger is a possible symptom of depression, so see above. Note additionally that a good plan for safety is required. Don’t aggravate your spouse in anger, it will further damage them and may put you or others in danger as well.
Never accepting responsibility is a very serious concern, which led me to this question: how do you know that someone never accepts responsibility? This is a behavior trait that can only be accurately stated with an extended period of observation with neutrality.
If you love or hate or have any preconceived emotion about this person, then your characterization may not be accurate. What really matters is: if you are considering marriage or are married to this person, this is not a condition that happens, it’s something willful. Are you willing to accept this willful behavior? It’s selfish and will be extremely damaging to the relationship.
One can fight depression and fibromyalgia with their spouse, people face illnesses together. But, this behavior trait, if true, will most likely be the deal-breaker or the ship sinker. The only thing you can do is to accept that everything in the relationship is your responsibility.
Please note that all of this is based on the assumption that all of the above is true. I’ve seen people in marriage with depression, anger issues, fibromyalgia, all of the above, some of the above, and their marriages are just fine. The lack of responsibility is something totally different.
Lastly, just because someone has a mental health problem does not mean they have terrible behavior traits. Look closely and know the exact detail before you proceed or advise someone.
I am 5’4”. When my fibromyalgia symptoms started, I was 22 and weighed 140lbs. I was, and still am, an endorphin junky who loved swimming and running. I had to give up running because of pain spreading to all my muscles, particularly after weight-bearing exercise. My weight plummeted to 105lbs. I most likely lost some muscle mass along with the fat, and I was depressed and nauseous from medication side effects. I was rolling down my jeans several times over and folding down and pinning my skirts in the back.
After I learned to manage my symptoms better, I got back to swimming, using fins to spread the work over my entire body, thus avoiding a major flare in my shoulders and obliques. I picked up a sport called underwater hockey.
My weight rose back up to around 125lbs after I started feeling somewhat better, and it mostly hovers around this amount. However, when I feel worse, it can drop back down to between 110–115lbs, again because of loss of muscle mass from having to lie on the couch so much, compounded by depression from missing out on my favorite activities and whatever current flavor of side effect is plaguing me due to whatever new medication I am attempting to manage my symptoms with.
I also recently came to the realization that I have quite a bit of anxiety sprinkled into my depression, due to never entirely knowing if some new treatment or activity is going to make my symptoms worse or better. And having to answer questions like this one. This question makes me lose my appetite.
I realize my story is not typical and that most people gain weight after developing fibromyalgia. However, to my understanding, being overweight or obese comes with a specific set of symptoms, which can include pain, but that is distinct from our understanding of fibromyalgia and other chronic pain syndromes. In other words, fibromyalgia can affect people of all sizes, and there is still much work to be done to narrow down all the possible causes and risk factors.
Because they are ignorant and cruel. I was struck with this disease in my late teens. I was, if anything, underweight at the time. The blood bank routinely turned me away from donations because I didn’t meet their minimum weight requirement.
Gaining weight didn’t cause my disease. I was slender until my mid-thirties. The sedentary lifestyle enforced by chronic pain and fatigue eventually caused me to gain weight. This is exacerbated by the fact that being sick all the time makes it much harder to shop for and prepare low-calorie, healthy meals.
I’m now nearly fifty and considered clinically overweight by about fifteen pounds, but I have never been in the category of obese.
I am a 41-year-old female with Fibromyalgia. 5’5″ 215lbs. Fat. Well, I haven’t always been sick, and not coincidentally, I haven’t always been fat. Like many fibro patients, I am fighting other things as well, but Fibro was the downfall of my active life and the subsequent rise of my weight.
I think many people see my sedentary lifestyle and think that I would be much healthier if I would just exercise more. (They’re not wrong) That my pain and fatigue are the results of my laziness. Thus, “Fatso–myalgia“
But the pain came first. The fat came later.
Now it’s just the revolving door of pain=lazy=fat=pain.
It would depend on your definition of ascension. I suspect that just like almost all illnesses can be viewed from an anatomic, biochemical, and biophysics perspective, and often explained largely from each of those perspectives individually, it can also be explained from a Mind/body/spirit perspective.
I have discussed the mind-body perspective of fibromyalgia elsewhere. But not so much the spiritual interplay with the physical. So please bear with me as I give a perspective to consider.
In metaphysical terms, Ascension can be seen as moving from a perspective of Duality to Unity. People with fibromyalgia, overall tend to be more empathic, and often have difficulty setting clear boundaries (as in saying “No” to requests that feel bad). Setting up an energy crisis in their lives.
The thymus gland, which is the seat of our immune function is the ability to set boundaries between self and others. An ability that needs to be learned to be able to move to ascension, or Unity, while still also maintaining our unique individual perspectives at the same time. Fibromyalgia is a common problem in that growth path, as we learn to develop a perspective of Unity (Ascension) while maintaining ourselves.
In that way, it can be viewed as a milestone on the path to Ascension, teaching us to love and respect all, and all perspectives, while still being able to simply say No to things that feel bad. An important lesson of the illness.
Yes, yes yes!!!!!! My ex-husband started abusing me emotionally and mentally after I moved in with him. Before that, he was so sweet kind, and very loving. The symptoms we not from just my feet burning, I had that for CPL years before I met him. How did the intensity come on fast? I had to quit my job and was literally bedbound for 2 years before I got a handle on it.
When I was diagnosed in 2009, my rheumatologist, while she was examining me, made the observation that I had been badly abused. She asked when the abuse had taken place, what type of abuse I had endured, and if I had been raped.
As I answered her questions, I began asking some of my own and she noted that in her years of practice that she had noted that those who had suffered from abuse displayed different characteristics in their conditions. Those who showed symptoms early in life were more likely to have more serious trigger events and symptoms later in life.
I have been now told by three different rheumatologists and two different pain management practitioners that I have one of the worst cases that they have ever seen. It is not a condition that is easy to deal with, but it is one that can eventually affect every aspect of your life.
Domestic abuse is extreme stress, which can in some cases trigger Fibromyalgia. It’s one of those weird conditions that have a whole mountain of things that can trigger it. I’d consider domestic abuse to be pretty high up there on the list.
For me, it was (I think) a car accident after I had just had neck surgery (3wks post-surgery, augh, I know), plus the stress of not being well enough to function at my job. 900% not fun, I’ll tell you that much.
Fibromyalgia is tied up into psychological yet physical pain which is why some people do really well on Cymbalta as a part of their treatment. Cymbalta, while helping agitated nerves calm (much like epilepsy), also acts as a mood stabilizer. That can help with the psychological state post-trauma (i.e. the domestic abuse, which hopefully has been dealt with accordingly), allowing the abused party to step back from the situation long enough to breathe and begin to heal and provide a scientifically proven way to relieve nerve pain.
In short, your emotions are tied to your physical well-being. Fibromyalgia is, very literally, in your head and in your nerves. Brain scans show that the electrical activity in a person that has Fibromyalgia is much, much higher than in someone who doesn’t have it. Great stress changes the body (I know since I’ve lived a life of intense stress myself and am a survivor of child molestation), which affects the mind. Invasive surgeries can also trigger Fibromyalgia – great stress on the body, which, again, affects the mind.
You might go through 20 surgeries and not get Fibromyalgia. You might go through 50 instances of domestic abuse and not get Fibromyalgia. Or you could have two surgeries and get in a fender bender that changes your whole life, triggering Fibromyalgia. It’s a lotta weird for a complex set of conditions that may or may not leave someone suffering from Fibromyalgia.
If you think there’s something wrong, see a Rheumatologist right after you take that harrowing leap out of that shitty domestic situation. Get yourself out of the stress, contact a shelter, go live with your mom, get safe and then get answers.
I have so many auto-immune diseases going on, I’ll begin with fibromyalgia.
When I lived in Vermont, one morning I could hardly get out of bed…all my muscles and joints hurt very much. I thought I’d have to call an ambulance. I lie there a while in bed. Eventually the severe pain eased us. I had what is known as a “flare”.
I went to my Dr. She said her office would make an appointment with a teaching hospital in New Hampshire. I was given a ride there. The Physician’s assistant pressed on various muscles…wow! Did that hurt! I was given no information. I didn’t know a thing!
A friend of mine had scads of information.
What happened is how our brain and spinal cord process pain signals. They are very exaggerated! Most of fibro. patients are women. Also if you have another painful disease like arthritis, and have anxiety and depression. Also, if you were emotionally abused or physically abused.
Fibro. can give you headaches, dry mouth, nose, and eyes. Sensitivity to light and sound, heat or cold.
Treatments: moist heat, gentle exercise…meds used are Cymbalta and Lyrica. But the best one for me was Plaquenil. it’s a malaria drug. It helped immediately.
Seriously, no two days are the same. I think that is the reality that most people can’t wrap their minds around. I have absolutely no idea what my pain will be like a month from now. The only thing I know for certain is that I will have pain. Every day. For the rest of my life.
I’d say it’s like being trapped on a roller coaster and you can only see two feet in front of you.
Although, if you pay close enough attention for long enough (I recommend a pain diary), you can get a decent handle on some patterns. Different factors have different effects, like weather and stressors. For instance, my primary influence (outside my control) is barometric pressure. I am a human barometer. If I tell you that the weatherman is wrong, trust me, he’s wrong.
At this point, I’m realizing that this is coming off way more negative than I intended. There is much more to my life than pain, that is just one part of my existence on this planet.
By the way, this human barometer lives in north-central Wisconsin.
Sorry, I got to add one more thing. Fibromyalgia is neurological, not psychological. This is important. Those two words do not mean the same thing and they are not interchangeable. If my pain was “all in my head,” I would not be able to predict the weather.
Three Fibro Warrior shares their experience with fibromyalgia.
In my experience, the biggest misunderstanding is that people think we can control it. It’s unlike other diseases/syndromes/etc. because it’s so inconsistent. One day I could get up, put on makeup, work hard, be cheerful and function apparently like everyone else (even though a good day is still full of aches, pains, symptoms, and exhaustion-but relatively it’s a good day) and the next day has explosive diarrhea all day, migraines, pain so bad I could scream, exhaustion, muscle weakness, confusion, etc. so bad I can’t function.
People around me have acted like I’m choosing the days I’m well or making excuses because they think I’m “well” because I had a good day, week, or month. They also seem to think that normal things like exercising a lot or doing common sense things that others do will help a me-every person with fibro responds to meds differently and has different symptoms and other problems.
Pilates messed up my bulging discs, some meds made me feel like a zombie, some did nothing, some worked for a bit then quit…The only thing that has worked for me was resting, minimizing stress, learning how far I can push myself, yoga, trying to stay generally as healthy and positive as possible, and getting unsupportive draining people out of my life.
When I get overwhelmed with life, family, work, it gets worse-people to think we just want to be lazy but for whatever reason overwhelmed brains make us nosedive really quick. It’s in the brain, nerves, muscles, and affects our neural pathways, we tend to have problems with sensory overload and our brains start shutting down and misfiring-the constant pain and fatigue put our whole system on the edge, so too much of anything can send us over the edge. Have compassion and empathy for everyone who fights a chronic illness.
The most misunderstood thing about fibromyalgia is that it’s actually a disease, a complicated one at that. Because you look normal, people, including family members and doctors, don’t think you’re sick. And as for finding someone who can heal you, they don’t exist except for the marginally few who have $25,000 or more to spend.
This is an expensive disease to treat because it requires expensive supplements, doctors who don’t take insurance, treatments (like IV nutrition and Ondamed) that insurance won’t pay for, and experimental procedures. Not to mention the organic food you have to eat because of your already toxin-filled body.
I have been sick for 35 years and some of my family members still don’t believe I’m sick.
I apologize for whining. You pressed my hot button today. May you have an understanding family who loves you and wish you well. You will need their support.
I think that the most misunderstood thing about fibromyalgia is that there is no cure. There will be times that we feel better due to various meds or treatments, but there is no cure. For those of us with true Fibromyalgia, we will never be totally well.
Another misconception about fibromyalgia is that our days do not redundantly flow one into another. Each day is different. Some days, my hands are completely immobilized. Other days, I can’t put any weight on my right hip.
Still another day, maybe one of my knees won’t hold my weight (and I am not considered overweight). The pain is always there it is just that some days it might be worse in one part of the body than it is in the other.
When I am in a flare, all bets are off. All of me is in complete agony. You won’t hear from me. You won’t see me. I will be hiding under the covers in bed, in the fetal position, whimpering at best. Unfortunately, flares can last for days, weeks, months – I have even heard of people being in a flare for years. For me, once I adjust to my new reality of a flare (which usually takes a couple of days at the minimum), I force myself to move.
I hate it, but I know that if I stay completely immobilized that I won’t be able to get through it. My best way of dealing with extreme pain is to distract myself. This can include watching TV, reading, writing (not longhand – on the iPad as longhand is impossible when I’m in a flare), cooking, and spending time with my significant other.
Sometimes this is easier said than done, but unless something else is wrong – like when I was immobilized by the shingles for 5 weeks earlier this year – but for me, forcing the issue is key to getting through a flare with any sense of sanity.
Last but not least is the simple fact that no matter what we do, it does actually get worse over time no matter how hard we try not to let it happen. These things are more for those of us who have experienced our trigger event which sends our fibromyalgia from manageable to having to learn to live a completely different life because there is no real relief ever again. My trigger event was a fall down half a flight of stairs in 2009. I have been in constant pain ever since and was diagnosed shortly thereafter.
I’m not telling you what not to do, but a way to get to the point where you can do things. Avoiding things with fibromyalgia is a slippery slope. It reinforces how disabled you are. You need to be active, but very slowly increasing what you’re doing
Go to a physiotherapist and tell them you want to start SLOWLY you are able to move your knee fives. Do it. Tomorrow do six times, and soon. Each day add one muscle group with the same gradual increase. Start doing very short walks just half a block a day for a week, then ¾ block a day for a week. People will say that’s not going to help. Of course, initially, you won’t notice a difference, but after a few weeks, you’ll find you can do a surprising amount.
Tai chi is a very gentle exercise and if you go for only 10 minutes initially and gradually increase You will feel better mentally too. Get input from a physio as to the best muscle groups and how to exercise them.
One of the things that fibromyalgia patients often do his nap during the day. However hard it is, don’t nap. Go to bed at the same time every day and get up at the same time (set an alarm if necessary) Saturday and Sunday too. Getting back into a regular sleep pattern.- patients always said it was impossible.
I’d say if you went to Japan, within a week your sleep pattern would change. So you can do it! It takes determination, but it does help. Sleep disturbance is a major problem with fibromyalgia and it’s not helped by napping. If you wake up in the middle of the night get up for a few minutes have a drink of warm milk or a small snack and go back to bed. If you’re in pain use a hot pack or whatever works for you while you’re having your drink.
Eat meals at regular times. Remember how miserable young children get when they don’t get food on time. Get massages, go swimming in a warm pool ( most Ys have an evening when a small pool is warmed for very young children. Try an aquatic exercise class and remember to start slowly (5–10 ) minutes to start increasing by 10 minutes a week.
One of the big keys to improving fibromyalgia is to consciously get your body back into a routine. Another thing I saw over and over was someone in the early strange of working this program was they’d go out and mow the lawn or spend two hours at the grocery store and lifting heavy bags. Tell everyone when you start what you are doing and that you are working very slowly.
Initially, you need to get lots of help, but after a month you will find you can do a little more. Buy prepared meals or get delivery. Get family members to load the dishwasher, do the laundry for the first few weeks. That’s all exercise. Do not lie around in bed. Read, play music, etc get friends over for tea or coffee go to the movies.
Gradually increase the amount you do as your physical fitness improves. And it will. Can you wiggle your foot five times? Of course, you can. You won’t feel bad tomorrow when you wiggle it 6 times. You can increase daily or alternate days. If you work and sit all day, get up stretch and go for a short walk down a corridor or to the washroom. Sitting in one place really stiffens you
Depression makes management of pain more difficult, so if you are depressed go and see your doctor and get help. Pain clinics and acupuncture can sometimes help. Meditation, relaxation creative imagery with a therapist can help
I have helped many people with fibromyalgia and they usually do very well. The key is to go slowly. If you overdo it you’ll get discouraged. One of my family does sweet nothing for days and then vacuums the house from top to bottom. He then lies in bed for a few days moaning and groaning and feeling martyred. He sabotages any recovery.
Doing things slowly may be frustrating. The house may be in a mess, you may be living on take-out, frozen pizza, etc. But it’s not forever and your family and friends should understand if you explain.
If prescribed take antidepressants, and pain medication. I advise fibromyalgia patients not to get on tranquilizers like Valium Type drugs. They really don’t help fibromyalgia and it’s easy to become dependent. Also, they mess up sleep patterns. A nonaddictive medication for sleep that works quite well with no hangover is Melatonin with L theanine. Just check with your pharmacist that it won’t interfere with any of your other medications
Ask your pharmacist. I know Costco has it So do many stores selling healthy foods, vitamins, etc.
Good luck. If you really commit to this I guarantee you will improve your quality of life. This is not about what to avoid? It’s about getting going and taking control of your illness.
Fibromyalgia has a bad reputation because many members of the medical community doubted that it was a real disorder until the last several years. Even with the change in perception of the disorder, there are still a number of medical personnel who do not believe in it.
Fibro is one of those things that cannot be proven by standard medical testing. As a result of this, many who are relatively naive about it still think it is all in our heads.
It isn’t.
The perception is slowly changing. Recognition by the CDC over the past several years has helped this. Having Social Security add it as a recognized disability further helps. There are still those out there who doubt it, and unfortunately, many of them are highly outspoken about their thoughts.
Coming from someone who suffers from it, this attitude is detrimental to us fibro patients. It is hard enough living with the unrelenting pain as it is. Since they have taken away many of our medications, we have discovered that it is even more debilitating than many of us were aware of. I went off my meds voluntarily almost a year and a half ago.
I was sure that I could handle it. I was wrong. I’m now at a point where I am very aware of what I am unable to do because of my pain. My depression over my pain has increased. I have tried many different alternative treatments including the low dose ketamine infusions that only served to poison me and put my butt in the hospital and in a position where high dosages of steroids had to be used which then served to crash my immune system.
I’m currently looking for a new pain management practice that is willing to take me on as a patient.
I do want to make something very clear here – I’m not addicted to pain medication. I never was. Since my fibro reached epic proportions in 2009, and actually before that, I get no buzz from opiates. I only experienced enough relief to function as a normal healthy person to some degree – not completely mind you because that can never be with my levels of pain.
When I took myself off of my meds in 2017, I experienced almost no withdrawal symptoms, and those that did show up faded after 48 hours. I do not crave them but I will admit that I miss them, and some days are worse than others.
Chronic pain in the upper and lower aspects of the same body side suggest a musculoskeletal disorder. In cases of fibromyalgia, a constellation of symptoms can exist which reflect simultaneous painful dysfunction of the pelvic and shoulder girdles.
My clinical researchers have discovered that females can incur looseness and hypermobility (subluxation) of their pelvic girdle sacroiliac joints (note for physicians: diagnostic criteria are found in the Occupational Disabilities Guidelines). Pelvic instability can become a chronic pain condition due to ongoing mechanical stress of pelvic ligaments attempting to hold together the loose pelvic sacroiliac joint.
Pelvic sacroiliac joint hypermobility can be due to childbirth, pelvic girdle mechanical injury (such as extreme sport participation), an underlying Joint Hypermobility Syndrome (JHS), obesity, musculoskeletal deconditioning, poor nutritional musculoskeletal status, or an admixture of these and other circumstances.
Different people can come to this type of pelvic sacroiliac joint dysfunction from varying causes. Secondary to the unstable pelvic girdle ring, the shoulder girdle can tilt and droop on one side, usually the same side that the lower spine (sacrum) droops into the painful and unstable pelvic sacroiliac joint.
When the pelvic girdle ring is unstable, the body tower, the spine surmounted by a shoulder girdle and head, is induced to tilt and gyrate into a spinal formation called “functional scoliosis“. Scoliosis causes the shoulder girdle to tilt, and the shoulder on the same side as the loose and painful pelvic sacroiliac joint is caused to tilt downward.
This chronic and unconscious posture of unilateral shoulder droop can often be seen in photographs and/or in the mirror. A chronically tilted shoulder can develop signs and symptoms of Thoracic Outlet Syndrome; with tingling, pain, and numbness down the arm (usually to the pinky side of the hand) and spasm of adjacent neck muscles.
As a consequence of chronic head tilt, the muscles on one side of the neck become chronically spastic, and the symptoms of chronic “muscle tension headache” can evolve. The unseen force of gravity acts upon all these tilted masses stationed above an unstable pelvis, and gravity is a participant in the evolution of these chronic pain syndromes.
Osteopaths and Physical Therapists are the best medical experts to diagnose these postural changes, muscle spasms, painful tendon and ligament mechanical stress, and the consequent generalized pain generation that occurs as a cascade of causes and effects. In a Fibromyalgia Cure Quora Space, I discuss the relationship of these musculoskeletal disorders, as well as the occurrence of “endometriosis” in women with this constellation of disorders.
The genetic background condition called Joint Hypermobility Syndrome (JHS) is also described. It is no coincidence that women with JHS experience a high incidence of fibromyalgia. Subluxation/hypermobility of one sacroiliac joint is the unifying biomechanical principle.
