Fibromyalgia ranks among the most puzzling and common chronic pain conditions. Fibromyalgia pain moves around from one area of the body to another or it seems to be everywhere at once. We experience several different types of pain. The intensity of the pain also changes. It can be very difficult to describe fibromyalgia pain to others. We often feel misunderstood and disbelieved.
It is hard for people who do not have chronic pain to understand how it is for us to live with it. Even those closest to us can not fully understand. They cannot and do not know the painful life we experience.
It can be just as difficult to describe how your pain feels to your doctor. Many doctors use a 0-to-10 pain rating scale, which has its limitations. Each of us experiences our pain differently. One person 8 may be another person’s 4. I often feel that because I always have pain, I under-rate my pain on the pain scale.
We have to rely on our words to communicate our pain to our doctor. The better we can describe our pain, the easier it may be for our doctor to help. Your doctor needs to know not just how much the pain hurts, but how the pain hurts and how it impacts your life.
Those of us with fibromyalgia suffer from different types of pain. Some words that can help you describe the way your pain feels include:
Keeping a pain diary is a good way to track your pain over time and will help you be more specific at your doctor appointments. You can also use the American Pain foundations LOCATES memory aid. It is a good way to remember how to describe your pain. Each letter of LOCATES stands for the information you should tell your doctor:
Location of the pain and whether it travels to other body parts. Other associated symptoms such as nausea, numbness, or weakness. Character of the pain, whether it’s throbbing, sharp, dull, or burning. Aggravating and alleviating factors. What makes the pain better or worse? Timing of the pain, how long it lasts, is it constant or intermittent? Environment where the pain occurs, for example, while working or at home. Severity of the pain. Use a 0-to-10 pain scale from no pain to worst ever.
If you want your pain to be taken seriously, don’t ever rate your pain at a 10! Unless you actually look as if your pain is a 10, your doctor will think you are exaggerating.
Dealing with fibromyalgia pain is a process. The more specific and detailed you can be when describing your pain, the more likely your doctor will be able to help you manage your pain.
Chronic pain not only makes us feel helpless, sometimes it makes doctors feel helpless, too.
Do you experience pain from a simple touch? Do you cringe when someone goes to give you a hug? Do these simple gestures result in excruciating pain? Skin pain is another one of those fibromyalgia symptoms that just doesn’t seem to make sense. This type of pain is called Allodynia and is usually felt as a burning sensation.
Allodynia is believed to be a hypersensitivity to stimuli that would normally not cause pain. The pain can be provoked by a light touch to the skin, pressure from clothing, showering, combing, or brushing your hair. Even a light breeze blowing across your skin can feel like agony.
Allodynia is considered to be the result of a process called central sensitization. The pain comes from a malfunction of specialized nerves, called nociceptors. These nociceptors sense information about things like temperature and painful stimuli right at the skin. For some reason, our nociceptors become chronically activated and send persistent pain signals. Any sensation felt by the skin becomes painful.
Allodynia is a fairly rare type of pain. It is only associated with a handful of conditions. These conditions include fibromyalgia, complex regional pain syndrome, neuropathy, postherpetic neuralgia (shingles), and migraine. Allodynia is also linked to the lack of restorative sleep.
Mechanical Allodynia: pain caused by movement such as your clothing brushing against your skin or the breeze from a fan or the wind blowing across your skin.
Allodynia often overlaps with hyperalgesia (abnormally heightened sensitivity to pain), which seems to be the case with fibromyalgia. So not only are we experiencing pain from stimuli that should not cause pain, the pain is amplified.
The skin pain comes from a malfunction of specialized nerves. It is also related to a lack of restorative sleep. Standard treatments for fibromyalgia can also help ease allodynia. This includes eating healthy, exercising, reducing stress, and improving your sleep.
Some people also get relief from topical pain creams. You may have to be careful about the way you dress, as well. Loose-fitting clothing made from soft natural fibers is recommended.
If your skin itches, burns, tingles or you have numbness, it could be a condition called Paresthesia. It’s also seen in Fibromyalgia and migraine patients. The sensations are usually felt in the hands, arms, legs, or feet, but can also occur in other parts of the body.
Painful skin is a new symptom for me. It seems to be triggered by temperature. It doesn’t even have to be hot. When I feel a little warm, my skin starts stinging and burning, then anything touching or moving across my skin intensifies the pain. Being exposed to the sun makes it worse.
My doctor increased my dosage of amitriptyline and said if that doesn’t help we would try gabapentin. It’s been three weeks since the dosage increase and so far it hasn’t helped. Since summer is almost over, I am wondering if the skin pain will lessen when the weather gets cooler.
There are basically two ways to deal with Fibromyalgia: accept it or resist it. We start out fighting against it. We push ourselves. We resist. Eventually, we realize resistance is only creating more suffering for ourselves.
We begin to accept things are different now. Our life has changed. Fibromyalgia is not going away. We have to look at our situation realistically. Our old life is being replaced by a new life full of limitations.
I was diagnosed with fibromyalgia over 10 years ago. At first, I could not accept that my life would have to change. I kept trying to do everything the same way I always have. Pushing and pushing myself to get things done. Working, taking care of my grandchildren, housework. I’m sure you can guess what happened -I crashed.
I spent three years barely functioning. I was taking at least 9 medications for various fibromyalgia symptoms. I couldn’t think straight. I had no energy. I lived in a daze. Couldn’t even call it living. I was existing.
Eventually, I had to accept that life had changed. I accepted fibromyalgia. I had to create a new life. One that was worth living. For the most part, I am happy with my new life. I never took time for myself before. I do now. I appreciate the little things more. I write which is something I have always wanted to do. My life is peaceful and quiet which is what I prefer.
I was sure that I had fully accepted this chronic illness. I was sure that I had stopped resisting. But, I haven’t, not completely. I have been practicing mindfulness/meditation and am becoming more aware of my pain-related thoughts and my true feelings about pain. I am noticing how they increase muscle tension, anxiety, and pain. I realized there is one symptom in particular that causes me the most stress.
Resistance creates suffering. Stress happens when your mind resists what is. The only problem in your life is your mind’s resistance to life, as it unfolds.
Fibro Fog. Instead of giving myself a break, I push myself. In doing so, I make myself feel worse. Stressed out and frustrated. Brain fog is the one symptom that scares the h*** out of me, especially memory loss. I don’t want to accept it.
Fibro fog is not something I experience, at least not at this level unless I am also fatigued. It’s been a long time since I have suffered this level of fatigue and brain fog. I have been doing so well, it’s just so frustrating to backslide. I have to keep telling myself this too shall pass. It’s just a bump in the road.
I haven’t felt well since Oct. 5th. That was the day I lost my 14-year-old poodle, Nyka. If you read my post: Chronic Illness in Pets, you might remember she had congestive heart failure. I had been preparing myself for this day for at least a year. Her bad day’s way outnumbered the good, especially in September, and I knew it wouldn’t be much longer. I was focused on taking care of her and not myself so much.
Within 2 days after Nyka passed, I was in so much pain, I was back to using my cane. But this time, instead of lying in bed, I stayed active. I had to or the grief was overwhelming. I felt lost. I didn’t realize how much time I spent taking care of Nyka. Giving her medications on time. Cooking for her. Hand-feeding her so she would eat. Taking her out frequently. Cleaning up messes, when she didn’t make it out in time.
I got the pain back under control by using my foam roller and stretching 3-4 times a day instead of my usual once or twice a day. I also cleaned every room in my house from top to bottom. Little by little, each day.
You would think the fatigue would have come from all the cleaning. But it came a few weeks later. Now, I can’t seem to shake it. Of course, it brought brain fog along for the ride. I know it is probably due to stress and grief. Another factor may be that I ran out of CoQ10. Since CoQ10 is a supplement that helps the mitochondria make energy, that may explain why I have none.
Acceptance is not submission; it is an acknowledgment of the facts of a situation. Then decide what you’re going to do about it.
– Kathleen Casey Theisen
I started taking CoQ10 again a few days ago. And I am going to rest. I am not going to expect more out of my brain than it is capable of right now. No to-do list. And I am not going to feel guilty for saying “NO”.
Well, there you have it. Brain fog is the fibromyalgia symptom I resist the most. What symptoms do you resist?
People with fibromyalgia are usually prescribed pain relievers, sleep medicines, antidepressants, muscle relaxants, and anti-seizure medications to help with their symptoms. These medications all come with risks and side effects so they are just as likely to do harm as to help. In this guest post, Marco gives us some tips to treat fibromyalgia pain safely.
Fibromyalgia is a very distressing disease, and very challenging to treat. A vast number of interventions have been tried. Many have shown no evidence at all of their effectiveness, but for many others, the basic story is that they seem to produce good results for a small fraction of sufferers while the majority of sufferers see little if any reduction in pain.
This applies to treatments such as mind-body therapy, resistance exercise training, aquatic exercise training, acupuncture, and cognitive behavioral therapy, as well as a number of drug treatments. The unfortunate reality is for that the majority of people with fibromyalgia no available treatment causes the pain to go away.
Before going any further it is important to say clearly that every person is a unique individual and advice from a personal physician who knows the details of a specific case should always trump generic advice such as this article gives. With that in mind, let’s proceed.
The first point is that interventions that don’t involve drugs tend to be the safest. Even if exercise or cognitive therapy don’t alleviate the pain – and to be honest, there is a good chance they won’t – they aren’t likely to do any harm. Thus, it makes sense to try those sorts of lifestyle-related approaches first, and only turn to drugs if they don’t work.
In the United States, three drugs have been approved for the treatment of fibromyalgia: pregabalin, duloxetine, and milnacipran. The fact that they have been approved shouldn’t be overrated, though – all it means is that careful clinical trials have shown that averaged across the full population of patients they are more effective than a placebo.
As a matter of fact, they are just barely more effective than a placebo. Their effectiveness is so low that in Europe none of them has been approved for the treatment of fibromyalgia. (No drug has been approved for fibromyalgia in Europe, actually.)
Pregabalin, most commonly marketed as “Lyrica”, was the first drug approved in the US for fibromyalgia, in 2007. It falls into a broad family known as “antiepileptic” drugs because they reduce the likelihood of epileptic seizures.
People who take it generally find it to have moderate mood-elevating effects, and in the US it is classified as a “Schedule V Controlled Substance”, which basically means that it has a low but nonzero potential for abuse.
This is more of a potential than an actuality: there have been essentially no reports of addiction resulting from pregabalin use.
There have, however, been reports of withdrawal symptoms in people who stop taking it after a period of use, involving symptoms such as sleeplessness, headache , anxiety, etc.
A substantial number of people who try it experience side effects that cause them to stop using it: the most common are dizziness and drowsiness, but changes in vision, appetite, mood, and other functions can also occur. And it is rather expensive, typically costing $300-$400 per month out-of-pocket in the US.
Bottom line: Lyrica is not an innocuous drug, and probably won’t work, but it might be worth trying if nothing else works.
The other two US-approved drugs are duloxetine (usually sold as “Cymbalta”) and milnacipran (sold in the US as “Savella”). Both of these drugs fall into the broad family known as “antidepressants”, along with drugs such as Prozac and Effexor. Indeed, both can be used to treat depression as well as fibromyalgia.
However, for unknown reasons these two drugs seem to be somewhat more effective than other antidepressants against fibromyalgia. Again – to repeat the same sad refrain – “somewhat more effective” just means more effective than placebo: they really aren’t very effective at all, on the whole.
Antidepressants, including these two, present very little risk of addiction. Most users actually find their direct effects – including a reduction in appetite and reduction in sexual motivation – to be rather unpleasant.
There is a much greater risk that the drugs will have intolerable side effects, including sleep problems, anxiety, and even (though this is controversial) an increase in suicidal thoughts.
Bottom line: Cymbalta and Savella are not innocuous drugs, and probably won’t work, but they might be worth trying if non-drug approaches don’t work.
Although pregabalin, duloxetine, and milnacipran are the only drugs specifically approved in the US for fibromyalgia, they are not the only drugs that a doctor could theoretically prescribe. In the US the general rule – there are exceptions – is that if a drug is approved for one use, a doctor has the ability to prescribe it “off label” for other uses, at discretion.
This means that a doctor could, at least in principle, prescribe an enormous variety of drugs to a patient with fibromyalgia. And indeed, a number of other drugs are occasionally used that way. None is used at a high enough rate, though, to justify specifically discussing here.
Finally, there is one other type of drug that absolutely needs to be mentioned: opiates – such as morphine, codeine, oxycontin, fentanyl, etc..
Because they are so effective for some other types of pain, their effects have been examined in a number of high-quality studies, and the invariable conclusion is that for fibromyalgia they just don’t work.
If anything they make things worse. Even with this information at hand, people often use them anyway.
Surveys have found that as many as one-third of people with fibromyalgia regularly use opiates. The temptation is easy to understand: opiates are obviously very effective for some types of pain, such as cancer pain, so why not give them a try?
But pain is a very complex entity, and the pain of fibromyalgia is completely different from cancer pain: it comes from the nervous system, not from tissue damage. Drugs that work for cancer pain don’t work for fibromyalgia; drugs that work for fibromyalgia – such as they are – are completely ineffective against cancer pain.
If you are tempted to try an opiate, don’t (unless your doctor recommends it). Overlaying a possible serious addiction on top of a case of fibromyalgia won’t improve your life.
Already using an opiate, and finding it unhelpful? Withdrawing from an opiate on your own is very difficult, especially if you are hypersensitive to pain due to fibromyalgia; please consult a doctor. There are plenty of ways of escaping from that trap without the misery that goes with direct withdrawal.
To sum up, then, the best way to manage your fibromyalgia pain safely are as follows:
Above all, discuss any change you want to make with your doctor.
Focus first on lifestyle changes such as exercise, sleep, diet, or therapy.
If those don’t work, consider trying one of the approved drugs, and discuss with your doctor which one is likely to work best for you.
Stay away from opiates.
If nothing works, try to maintain a positive attitude and realize that a lot of research is going on in this area, so there is a good chance that better solutions will be available in the not-too-distant future.
As Chief Editor for a leading drug and alcohol addiction blog, Palo Recovery, I aim to deliver value in the topics that I write about. My aim is to help as many people as possible who are going through the same struggle. Staying true to A.A’s values about anonymity, the author uses the pseudonym Marco.
“The tender point test also has a gender bias because men may report widespread pain, but they generally aren’t as tender as women. Fibromyalgia may be under-diagnosed in both men and women because of the reliance on 11 tender points, and also due to failing to account for the other central features of the illness,” said Katz.
Additionally, due to the confusion regarding the tender point test, the authors note that most primary care doctors don’t bother to check tender points or they aren’t checking them correctly. Consequently, fibromyalgia diagnosis in practice has often been a symptom-based diagnosis. The new criteria will standardize a symptom-based diagnosis so that all doctors are using the same process.
The tender point test is being replaced with a widespread pain index and a symptom severity scale. The widespread pain index score is determined by counting the number of areas on the body where the patient has felt pain in the last week. The checklist includes 19 specified areas.
The symptom severity score is determined by rating on a scale of zero to three, three being the most pervasive, the severity of three common symptoms: fatigue, waking unrefreshed and cognitive symptoms. An additional three points can be added to account for the extent of additional symptoms such as numbness, dizziness, nausea, irritable bowel syndrome, or depression. The final score is between 0 and 12.
This is indeed good news. The tender point test did seem rather minimal since it only takes into account pain and ignores the other predominant symptoms. Certainly, it could lead to earlier diagnosis in FMS patients, because, seriously, if it takes a decade to diagnose someone there are some issues with the methods. I recall when I finally got my diagnosis that they were too late… by then FMS had impaired a great deal of my ability to function in many aspects that I simply had to cope with on my own, often including stopping activities that became too draining or painful, when in fact early treatment would encourage a certain level of activity.
Helping with the cognitive impairments and sleep issues early on sure would have been nice as well. What I most remember of my official diagnosis, which by then was rather moot, was that the tender point test was damn painful. Damn painful and lasted quite a bit after as well. It is like poking a bruise… yeah it hurts and hurts quite a bit if you put that much pressure on it. Of course, there was also some relief. That final moment where finally there is a name for what is wrong with you. And that hope that finally someone will help. Of course, they didn’t then. But the more medications and treatments they look into the better the future outlook for those of us that have this dang syndrome.
Venturing out of my abode got me thinking about fickle fibromyalgia pain.
Recently I have been thinking about the variety of FM symptoms because some of them overlap with chronic migraine symptoms such that I don’t know which is the cause… such as vertigo; migraine-associated vertigo or FM-related vertigo, or the balance problems and even the sensitivity to sound and light. The thing is FM came first and migraines later and then chronic migraines so no matter how much my neuro wants to label everything chronic migraines he is actually just saying things doctors had actually labeled everything fibromyalgia before.
But my trip and any trip actually or any unexpected activity remind me of the fickle fibro pain. How it can hit like lightning in any muscle group or all muscle groups. How it can be a deep muscle ache that gets worse and worse, grinding and deep until your mobility is completely restricted, or a sharp nerve pain that arches through you or stings like cold fire or burns. The pain can be crippling and many of the incidents I remember can be so different and triggered by different things or nothing at all… so fickle.
Excluding the aches I had as a child the first sharp crippling pain came when I worked a job where I was standing for eight hours at some customer service job. I remember the pain of doing that but I was familiar with that sort of pain already and not diagnosed at the time. I believe at the time they had said I had ‘hypermobility with soft tissue pain’ so pain from standing was due to me being double–jointed. It sucked but it was familiar.
What wasn’t familiar was the fact that after enduring it for eight hours and getting home and sitting down, with profound relief, I couldn’t stand up. After a brief moment of rest and I tried to get up for supper and pain arched through my legs and they collapsed. Just gave out from the very pain itself.
It was the first time I realized if you have severe fibro pain you cannot stop and rest. There is no point to it because resting and getting up causes severe pain, sometimes causing your legs to just give out but most definitely causing a lot of difficulty in getting moving again because of intensepain… so it is better to just keep going, no matter how slow.
The next incidents of intense fickle fibromyalgiapain occurred when I was an undergraduate in university.
Because that is when my fibro because more severe due to sleep cycle changes and so forth. Also when I was officially diagnosed but not treated (I was told too young to be treated). I flared up really bad one year but there was no reason for it. I was living off-campus at the time. I was physically fit in the sense I walked to school every day. I walked my dog every day. I rollerblade and so forth. Fairly active for someone with chronic pain. I was doing what they want us to do… exercise. The flare-up nearly crippled me.
My fifteen-minute walk to school went from fifteen minutes to forty minutes and was extremely painful. It took a lot of willpower to achieve. Even when I got there it was difficult to sit at my desk, to actually sit down, and then to sit for the entire time. I just remember trying to pay attention through the pain. And that is why I remember that flare up so much because it reminds me of a migraine…. trying to think through pain and not being able to. That pain was all over pain. It hobbled me pretty good… but it was not just the legs, it was back, shoulders, neck… every damn place. And no cause. It lasted about six months and then was gone. It was in summer and wasn’t a weather thing. Just not sure what was the cause.
One thing about fibromyalgia was that I could not work during school. I wasn’t capable of it. Work took too much out of me, so during the summer was my saving up money time. But unfortunately, sometimes it took a little too much out of me anyway if I chose the wrong job. We learn that the hard way with fibro being as it is so fickle we learn what jobs we can and cannot work. I learned as a kid, and during summer jobs that standing for eight hours is extremely painful but what can you do? Service industry jobs are easy to get when you have no experience.
Next job I learned lifting things repetitively or moderate lifting is a very bad thing to do if you have fibro… I got costochondritis. But I didn’t know it. I started getting twinges of chest pains which I ignored, they got more frequent more painful than more constant. The local doc said it was stress. So I ignored it and it got worse and worse. Until when I lay down it felt like someone was squeezing the life out of me, pressure and pain. I ended up in the ER one night because it got severe one night when I went out drinking. That doc said he didn’t believe in fibromyalgia (as was common back then) and sent me away. Needless to say, this pain wasn’t going away so I made the trip home to my family doc who did a chest x-ray and told me what it was. I guess because I have fibromyalgia and maybe because I had aggravated it so much by working with the pain it lasted well into the school year. The pain receded very slowly over six months. It has never, ever been as bad as that.
When I was in graduate school and I needed to get my thesis signed by all the dudes who needed to sign off on it I had to get my copies printed then run around to find the professors to get them to sign and then get the thesis to the right place in order to meet my deadline. This campus was huge. I did a lot of running around. I can’t walk, walk, go upstairs, walk, walk, go upstairs without beginning to feel pain. It isn’t possible.
So I started getting pain in my hips, knees, and feet. I had to keep going because I needed to get it done. I started moving slower and slower and getting more and more distraught. I was running out of time but I couldn’t physically move faster. In the end, I was moving so slowly that I might as well not have been moving. I ended up in my department crying because I couldn’t get it done. A professor found me and I explained (I had not been aware I could get disability benefits on campus by the way so no one knew I had fibro) he called my missing prof and got him to come to me and then got someone to bring my thesis to the right place. I was extremely thankful. I was also stuck there for an hour before I could move again. It was embarrassing to me as well. I never wanted to admit it could actually affect me. Not like the migraines were… and the migraines are what killed my academic career.
The next incident was years later because like a good fibro girl I aimed for a desk job and settled into it. But flares for no reason happened anyway. This one just occurred and surprised me because I could not explain it. It started in my feet, in the arches. Severe arch pain in both feet. I could barely walk just shuffle around. I could not really lift my foot and every step hurt. I tried fake arches. An anti-inflammatory cream my doc gave me. Foot exercise. Nothing. It lasted a year and then just gone. Then started in my wrists, both wrists, tendinitis I guess but so painful I could not put any pressure on them, had a hard time writing with them, and had to wear a brace at night and sometimes at work. They hurt like that for about eight months and then just stopped.
So when my feel suddenly hurt when I wore those sandals I remembered that pain. Those are flares of pain. And the pain in specific spots. Pains other people get for different reasons but we get those sorts of pains for no reason they are part of our normal life. The aching muscles, and general soreness… that is every day, not a flare. Skin pain is a different kind of pain altogether. Nerve pain is also a different kind of pain. Fibromyalgia has a lot of different types of pain. Because it is fickle. It can hit when you take a fifteen-minute walk, which has happened to me, or not until you have walked for an hour. Random, completely random. And these Hellish Flares of Doom… I don’t know what causes them. Sometimes we overdo it and pay and pay and pay. Sometimes they hit for no reason and we pay and pay and pay. I don’t get it but they are way worse than any other flare we have… and we have enough of them as-is.
Pediatric Rheumatology Online Journal, 2012, states Juvenile Fibromyalgia (JFM) is correlated with 40% of children and teenagers who also have benign hypermobility (HM). In fact, in adults hypermobility is an often seen comorbid condition.
Pediatric Rheumatology, however, undertook an observational study to see if hypermobility affects the pain experience of adolescents with juvenile fibromyalgia. It must be mentioned that juvenile fibromyalgia is a relatively new area. Often the reason it took people a decade or more to be diagnosed is that early symptoms were ignored, puzzled over, and passed on leaving the patient to continually get worse and eventually get diagnosed in their twenties if they were lucky.
So there has been a great deal of progress to see people acknowledging the syndrome presents far earlier than they had initially thought in many patients. In fact, there was a study done to see what the prevalence rate was for subjects who had fibromyalgia and hypermobility.
The study carried out by the Department of Pediatrics at Louisiana State University (study) had a study group of 338 students and the prevalence of JFM was 6% and of that six percent 40% had hypermobility.
The study included one hundred and thirty-one JFM patients between the ages of 11 and 18. They completed a daily visual analog scale (VAS) pain rating for a week and did the 18 tender point colorimeter assessment as well.
The results show that 48% of the sample size of JFM subjects was found to be HM+. HM+ and HM- patients did not have any differences in their self-stated pain intensity ratings. However, those who were HM+ had significantly greater pain sensitivity, their tender point threshold was found to be lower, and they had a larger amount of those tender points contrasted to HM- subjects.
From the study, we can say that a juvenile with FM and joint hypermobility does not necessarily report more pain intensity, but that there is increased physiologic pain sensitivity. They are looking to further study the relationship between increased pain sensitivity associated with hypermobility with juvenile fibromyalgia.
From this study, we can see a high co-occurrence of juvenile fibromyalgia with hypermobility. As research into juvenile fibromyalgia is relatively new it will be interesting to see what comes of it. Fibromyalgia is often considered to have an onset in the thirties that increases in probability with age. Researchers still investigate and speculate about rapid-onset cases where someone develops FM after an accident or illness, but it is an entirely different matter if it develops with no trauma and in childhood. It would be interesting to see how many adult-onset people with FM have hypermobility and if the occurrence rate is far lower why it would be that developing FM at such a younger age comes with such a high incidence of hypermobility.
I had no idea about this but apparently, they have a class of fibromyalgia called Juvenile Fibromyalgia… so they are actually looking at children and teenagers and diagnosing them properly. Would have been nice had they done that when I was younger because I was one of those people with FM that had it at a very young age and so spent a lot of time going to the doctor for blood work and tests and no answers. Took a long time to get my diagnosis and by then it was pretty bad. So I’m glad they have finally figured that out… not everyone gets in their thirties or older and not everyone gets it after a trauma or illness… sometimes we have the syndrome and it just slowly gets worse over time. I also have hypermobility syndrome.. that I was diagnosed with early by the way. And it is one of the things that is comorbid with FM, a lot of us are hypermobile and apparently about 40% of JFMers are. I wonder if it is just those who develop it as children who are more prone to having it or if it is all around common to have this co-occur and I wonder why so many of us have this… FM is in the brain and it is all about the nervous system, whereas hypermobility is the joints and connective tissue. An interesting puzzle.
There was a site that had this and I had linked to it on Tumblr but it is gone. So I had to hunt down someone who found my post and posted the whole thing in a forum. Anyway, it is around but I’m posting it here so I will not have to hunt it down to reference it. Now we all know the major symptoms are the widespread pain, but our pain isn’t just muscle pain… it can be nerve types of pain as well, fatigue and insomnia. And even among symptoms, there are some far more frequently than others, but it should be said we have categories… like the cognitive dysfunction, which is a broad one that has more than one symptom and we often just say fibrofog. Insomnia… more than one sleeping disorder. So the list is interesting.
GENERAL __ Fatigue, made worse by physical exertion or stress __ Activity level decreased to less than 50% of pre-illness activity level __ Recurrent flu-like illness __ Sore throat __ Hoarseness __ Tender or swollen lymph nodes (glands), especially in the neck and underarms __ Shortness of breath (air hunger) with little or no exertion __ Frequent sighing __ Tremor or trembling __ Severe nasal allergies (new allergies or worsening of previous allergies) __ Cough __ Night sweats __ Low-grade fevers __ Feeling cold often __ Feeling hot often __ Cold extremities (hands and feet) __ Low body temperature (below 97.6) __ Low blood pressure (below 110/70) __ Heart palpitations __ Dryness of eyes and/or mouth __ Increased thirst __ Symptoms worsened by temperature changes __ Symptoms worsened by air travel __ Symptoms worsened by stress
PAIN __ Headache __ Tender points or trigger points __ Muscle pain __ Muscle twitching __ Muscle weakness __ Paralysis or severe weakness of an arm or leg __ Joint pain __ TMJ syndrome __ Chest pain
GENERAL NEUROLOGICAL __ Lightheadedness; feeling “spaced out” __ Inability to think clearly (“brain fog”) __ Seizures __ seizure-like episodes __ Syncope (fainting) or blackouts __ Sensation that you might faint __ Vertigo or dizziness __ Numbness or tingling sensations __ Tinnitus (ringing in one or both ears) __ Photophobia (sensitivity to light) __ Noise intolerance
EQUILIBRIUM/PERCEPTION __ Feeling spatially disoriented __ Dysequilibrium (balance difficulty) __ Staggering gait (clumsy walking; bumping into things) __ Dropping things frequently __ Difficulty judging distances (e.g. when driving; placing objects on surfaces) __ “Not quite seeing” what you are looking at
SLEEP __ Hypersomnia (excessive sleeping) __ Sleep disturbance: unrefreshing or non-restorative sleep __ Sleep disturbance: difficulty falling asleep __ Sleep disturbance: difficulty staying asleep (frequent awakenings) __ Sleep disturbance: vivid or disturbing dreams or nightmares __ Altered sleep/wake schedule (alertness/energy best late at night)
MOOD/EMOTIONS __ Depressed mood __ Suicidal thoughts __ Suicide attempts __ Feeling worthless __ Frequent crying __ Feeling helpless and/or hopeless __ Inability to enjoy previously enjoyed activities __ Increased appetite __ Decreased appetite __ Anxiety or fear when there is no obvious cause __ Panic attacks __ Irritability; overreaction __ Rage attacks: anger outbursts with little or no cause __ Abrupt, unpredictable mood swings __ Phobias (irrational fears) __ Personality changes
EYES AND VISION __ Eye pain __ Changes in visual acuity (frequent changes in inability to see well) __ Difficulty with accommodation (switching focus from one thing to another) __ Blind spots in vision
SENSITIVITIES __ Sensitivities to medications (unable to tolerate “normal” dosage) __ Sensitivities to odors (e.g., cleaning products, exhaust fumes, colognes, hair sprays) __ Sensitivities to foods __ Alcohol intolerance __ Alteration of taste, smell, and/or hearing
OTHER __ Hair loss __ Mitral valve prolapse __ Cancer __ Dental problems __ Periodontal (gum) disease __ Aphthous ulcers (canker sores)
COGNITIVE __ Difficulty with simple calculations (e.g., balancing checkbook) __ word-finding difficulty __ Using the wrong word __ Difficulty expressing ideas in words __ Difficulty moving your mouth to speak __ Slowed speech __ Stuttering; stammering __ Impaired ability to concentrate __ Easily distracted during a task __ Difficulty paying attention __ Difficulty following a conversation when background noise is present __ Losing your train of thought in the middle of a sentence __ Difficulty putting tasks or things in proper sequence __ Losing track in the middle of a task (remembering what to do next) __ Difficulty with short-term memory __ Difficulty with long-term memory __ Forgetting how to do routine things __ Difficulty understanding what you read __ Switching left and right __ Transposition (reversal) of numbers, words, and/or letters when you speak __ Transposition (reversal) of numbers, words, and/or letters when you write __ Difficulty remembering names of objects __ Difficulty remembering the names of people __ Difficulty recognizing faces __ Difficulty following simple written instructions __ Difficulty following complicated written instructions __ Difficulty following simple oral (spoken) instructions __ Difficulty following complicated oral (spoken) instructions __ Poor judgment __ Difficulty making decisions __ Difficulty integrating information (putting ideas together to form a complete picture or concept) __ Difficulty following directions while driving __ Becoming lost in familiar locations when driving
Yes, that is right. I know that there are times when you don’t feel tough. I also know that there are days when you truly lack physical strength, but that doesn’t mean that you aren’t tough.
As long as you are fighting for your life, looking for ways to improve it, finding joy in every day, and not giving up, YOU ARE TOUGHER THAN YOUR ILLNESS OR CHRONIC PAIN!
I know that taking a nap may feel like your illness has won, but it isn’t true. You win when you acknowledge that your body needs to rest. It takes guts to do what your body demands of you, instead of forcing your body to follow your desires. It takes immense strength to go to physical therapy, to keep trying new treatments, change your lifestyle, make healthier choices, and most importantly accept that all these things must be done in order for you to remain strong enough to survive.
Here are three examples to help you build and maintain the emotional strength that is necessary for living with a chronic illness or pain.
Number One: Spend more time with people who lift you up and less with those who bring you down.
Those who constantly remind you of your limitations or are always bringing up your shortcomings, are only going to weaken you.
People who point out your strengths, help you find alternative ways to do things, or just cheer you on when you try something new will build your confidence.
Who are you spending most of your time talking to?
My life isn’t filled with people who understood how difficult living with fibromyalgia, psoriatic arthritis, psoriasis, endometriosis, and its fallout, degenerative disc disease, and coccydynia is.
The difference between my life then and now is that I choose not to spend much time with those whose favorite word is CAN’T. Tweet
The more I hear that I can’t do something, the more I believe that I can’t do anything.
I may not be able to do everything the way I used to, but I CAN find new ways to do what I want.
I am not talking about joining a social media support group. Those are okay to meet other people who “get” it but not for truly dealing with your fears and life choices. Nor is it fair to expect your family or spouse to be the ones to counsel you. There are many options available for counseling depending upon your needs.
If You Need A Crisis Hotline The National Suicide Prevention Lifeline – 1-800-273-8255 SAMHSA (Substance Abuse and Mental Health Services Administration) – 1-800-662-4357 RAINN (Rape, Abuse, and Incest National Network) – 1-800-656-4673
Lifeline Crisis Chat Veterans Crisis Line – 1-800-273-8255 (Press Option #1) National Domestic Violence Hotline – 1-800-799-7233 MentalHelp.net (An American Addiction Centers Resource) – 1-866-308-2184 NAMI Helpline (National Alliance on Mental Illness) – 1-800-950-6264
And for those wanting regular therapy with a licensed therapist, but either have crappy healthcare coverage or none and have either transportation issues or are just in too much pain to travel one or more days a week, Online-Therapy.com offers therapy when and where you want it.
Number Three: Start envisioning your future WITH your chronic illness.
I know that you are hoping and praying for a cure. I am too. But the reality is that our chronic illnesses are most likely going to be with us for the rest of our lives, especially for those of us over 50.
If your chronic illness isn’t included in all of your future dreams and plans, your future will be filled with disappointment. Not only that, but you will be unprepared for the hard times that await you.
Sorry to sound like a Debbie downer, but living with your head in the clouds waiting for life to magically be transformed will only lead to more heartbreak.
When you envision a future that includes your chronic illness, you aren’t giving up, you’re getting real!!!
Instead, you will grow stronger because your mind will be focused on figuring out what you will be able to do, making alternative plans, or finding a different way to do what you had originally planned for.
Will things go wrong? Of course, they will! Do you know anyone who hasn’t had anything goes wrong in their life? I don’t! The difference is that you will be better prepared.
I know you are tough because if you weren’t you wouldn’t be reading this blog post. If you are feeling like you are stuck in your life, take a deep breath, assess your situation, make plans to move forward, and never forget that you are a warrior!
The pain in fibromyalgia often first shows up as chronic upper back and neck pain. In fact, recent studies have shown that the majority of fibromyalgia patients have lost the natural curve in the cervical spine. In this post, I am going to tell you how a device called the Posture Pump® Cervical Disc Hydrator can be an effective home therapy for neck and upper back pain.
One of the possible causes for fibromyalgia discovered by researchers is cervical stenosis. Cervical stenosis is a narrowing of the spinal canal in the neck area or upper part of the spine. This narrowing places pressure on the spinal cord resulting in nerve compression which can affect the entire nervous system.
Another area of interest is the straight neck abnormality that in itself can cause spinal cord compression. In one study, cervical spine x-rays of 138 fibromyalgia patients were analyzed. Turns out that 88% of the FM patients in the study had a straight neck based on measuring the Cobb angle and 90% had a straight neck by visualizing the lateral view of cervical spine x-rays.
When you lose the normal neck curve, the weight of the head is no longer balanced by the opposing curve in the upper back. This can cause significant pain for the neck muscles, headaches, reduced range of motion, premature disc degeneration, disc herniation, numbness, tingling, or weakness in the arms. It can also lead to a loss of bladder control, loss of balance, gait disturbances, and dizziness.
This is where Posture Pump® comes into the picture.
Posture Pump® is a spinal health product recommended by doctors to thousands of patients throughout the USA and other countries. Not only it is recommended by doctors, but the Posture Pump® was also created by a doctor with over 30 years of experience treating the neck or back.
Normal spinal curves allow nutrients to flow into the joints. Loss of postural curves causes disc compression and blocks the flow of nutrients. This forces the head forward. Every inch your head is moved forward an extra 10 pounds of weight is added to your neck. As a result, forward head posture leads to chronic pain, numbness in the arms and hands, improper breathing, and pinched nerves.
The Posture Pump® Cervical Disc Hydrator shapes and restores the cervical curve hydrates the joints of the neck and back and helps decompress the joints to increase your range of motion.
The Posture Pump® Cervical Disc Hydrator (Model 1400-D) comes fully assembled and easy to follow operating instructions. All you have to do is adjust the head strap until it feels comfortable and secure. Then you use a hand pump to pump up the air cells to your level of comfort. Wait 10 seconds and release the air out. You repeat filling and deflating the air cell 10 to 15 times.
Next, inflate the unit and relax 1 to 5 minutes the first time and gradually work up to 15 minutes before deflating the air cells. There is a warm-up routine that acclimates the neck muscles. Do this before and after using the Posture Pump®.
The first time I used the Posture Pump® Cervical Disc Hydrator the muscles on both sides of my neck got so tight I could barely move my head. I found out it is normal to be sore the first week. I was only sore the first time. After that, I feel a warmth in my neck muscles as though I can feel the blood circulating through my neck.
I’ve had neck and shoulder pain since my teens. X-rays at that time showed that my neck had lost its natural curve. The Posture Pump® Cervical Disc Hydrator is made to restore the natural neck curvature. It definitely brings immediate relief to the pain in my neck, shoulders, and upper back. So far, the relief is temporary but with fibromyalgia ANY relief is good. I am going to continue using the Posture Pump and see what happens.
Key benefits of The Posture Pump® Cervical Disc Hydrator:
Relieves Painful Neck and Upper Back Stiffness, Headaches and Fatigue
