I don’t know off the top of my head, but I’m sure that was something they would have tested for. But thank you for the information. :-)
I don’t know off the top of my head, but I’m sure that was something they would have tested for. But thank you for the information. :-)
We need more awareness.
I’m so sorry to hear that. The diagnosis phase can be very depressing and very frustrating. I remember nights where I would keep myself up planning for what I would have to do if I was diagnosed with this, or that.
It can be very difficult to find people who understand. Just try talking with people about. Explain your situation to them if you haven’t already. I guarantee that there will be at least one person out there who understands.
And trust me, you’re definitely not crazy. Just because it’s still an unknown doesn’t make it any less real. An answer will come. It may take some time, but it will come. I’m sure of it.
If you need anyone to talk to, I’m always here. :-)
I have a diagnosis but nothing to give me relief from the pain. So all I’ve really gained is the ability to eloquently explain to others what’s wrong with me.
Me: I have fibromyalgia.
Person: Ooh…sounds fancy.
Thank you so much. I was thinking the same thing, but I was like, “Why don’t I just post more?” So hopefully, I’ll be able to keep it up.
If you were born with healthy genes, you may know me but you don’t understand me. I was not as lucky as you. I inherited the predisposition to chronic pain, fatigue and forgetfulness. I was diagnosed with fibromyalgia (FMS) after months, years or even decades of mysterious physical and emotional problems. Because you didn’t know how sick I was, you called me lazy, a malingerer, or simply ridiculous. If you have the time to read on, I would like to help you understand how different I am from you.
WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA
1. FMS is not the newest fad disease. In fact, it isn’t a disease at all, and it isn’t even new. In 1815, a surgeon at the University of Edenburgh, William Balfour, described fibromyalgia. Over the years, it has been known as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Rheumatoid arthritis and lupus are also syndromes.
2. The many physical and emotional problems associated with FMS are not psychological in origin. This is not an “all in your head” disorder. In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability.
3. Syndromes strike life-long athletes as viciously as they do couch potatoes. They can be disabling and depressing, interfering with even the simplest activities of daily life.
WHAT YOU SHOULD KNOW ABOUT ME
1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.
2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can’t. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can’t help you with yard work today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability.
3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.
4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.
5. My sensitivities - I just can’t stand it! “It” could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the “aggravating everything disorder.” So don’t make me open the drapes or listen to your child scream. I really can’t stand it.
6. My intolerance - I can’t stand heat, either. Or humidity. If I am a man, I sweat…profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don’t feel compelled to point this shortcoming out to me. I know. And don’t be surprised if I shake uncontrollably when it’s cold. I don’t tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.
7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian’s patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.
8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I’m not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.
9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.
10. My need for therapy - If I get a massage every week, don’t envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.
11. My good days - If you see me smiling and functioning normally, don’t assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.
12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.
I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.
Author’s note: This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia. It does not represent any one of the over 10,000,000 people with FMS, but it can help the healthy person understand how devastating this illness can be. Please do not take these people and their pain lightly. You wouldn’t want to spend even a day in their shoes…or their bodies.
These are the things that I would like you to understand about me before you judge me…
Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day flat on my back in bed and I might not seem like great company, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.
Please understand the difference between “happy” and “healthy.” When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker than ever. Please, don’t say, “Oh, you’re sounding better!” I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.
Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover - imagine an athlete after a race. They couldn’t repeat that feat right away either. With a lot of diseases you’re either paralyzed or you can move. With this one it gets more confusing.
Please repeat the above paragraph substituting, “sitting up”, ”walking”, “thinking”, “being sociable” and so on …. it applies to everything. That’s what a fatigue-based illness does to you.
Please understand that chronic illnesses are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the kitchen. Please don’t attack me when I’m ill by saying, “But you did it before!” If you want me to do something, ask if I can and I’ll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don’t take it personally.
Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. Fibromyalgia may cause secondary depression (wouldn’t you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct - if I could do it, I would.
Please understand that if I say I have to sit down / lie down / take these pills now, that I do have to do it right now - it can’t be put off or forgotten just because I’m doing something. Fibromyalgia does not forgive.
Please understand that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.
If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with Fibro then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Fibro, if something worked we would KNOW.
If after reading that, you still want to suggest a cure, then do it, preferably in writing, but don’t expect me to rush out and try it. If I haven’t had it suggested before, I’ll take what you said and discuss it with my doctor.
Please understand that getting better from an illness like this can be very slow. People with Fibro have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out.
I depend on you - people who are not sick - for many things.
But most importantly, I need you to understand me.
Hi….My Name is Fibromyalgia, and I’m an Invisible Chronic Illness.
I am now velcroed to you for life. Others around you can’t see me or hear me, but YOUR body feels me. I can attack you anywhere and anyhow I please. I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over. Remember when you and Energy ran around together and had fun? I took Energy from you, and gave you Exhaustion. Try to have fun now! I also took Good Sleep from you and, in its place, gave you Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh, yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away, too. You didn’t ask for me. I chose you for various reasons: That virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma. Well, anyway, I’m here to stay!
I hear you’re going to see a doctor who can get rid of me. I’m rolling on the floor, laughing. Just try. You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded, and MOST OF ALL, not taken as seriously as you feel when you cry to the doctor how debilitating life is every day. Your family, friends and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I’m a debilitating disease. Some of they will say things like “Oh, you are just having a bad day” or ”Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said 20 DAYS ago. Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a “Normal” person, and can’t remember what you were going to say next!
In closing, (I was hoping that I kept this part a secret), but I guess you already found out…the ONLY place you will get any support and understanding in dealing with me is with Other People With Fibromyalgia.
Thank you so much for sending this. It brought a tear to my eye. I’m so glad to know that I’m able to help people. :-)
If your love is strong, then you will endure. I don’t know the reason for your separation, but if you’re both willing, then you should wait for each other. And you can wait until the right, opportune, moment when you will be able to be together.
You should be able to be together with no problem. I would request to see a copy of his release papers if possible, just to make sure there won’t be any conflicts in the future.
Can you text him? Maybe he just doesn’t like talking on the phone. Or perhaps you always catch him at a bad time.
Talk to him about your feelings. There’s no point in giving up if you don’t know how he feels. Go for it!
By: William W. Deardorff, PhD, ABPP
It is not uncommon for those who suffer from chronic pain to feel stressed and depressed at times. This is no surprise, given the fact that “chronic pain” usually means pain that lasts more than three to six months. Prolonged pain appears to set up a pathway in the nervous system that sends pain signals to the brain, even in the absence of an underlying anatomical problem.
Some chronic pain may be due to a diagnosable anatomical problem, such as degenerative disc disease or spinal stenosis, that can cause continual pain until successfully treated. More often, the chronic pain has no clear anatomical cause, as in failed back surgery syndrome or chronic back pain without an identified pain generator. In such cases, the pain is itself the disease. Click here for more Depression Symptoms
For some people, the stress and depression resulting from chronic pain can become consuming, and can even worsen and prolong the pain. (More information on Depression Causes.) Increased pain can, in turn, lead to increased stress and depression, creating a cycle of depression and pain that can be difficult to break. There are things a person with pain can do, however, to prevent or manage the chronic pain and depression that may develop:
1) Minimize the chances of developing chronic pain
Talking to a physician about symptoms of depression or stress, or a history of depression, while still in the acute pain phase can alert a physician to the need for consideration of both conditions in creating a treatment plan for the patient’s spine health. While one patient may demonstrate a full recovery from the initial injury, a patient who is more prone to depression and stress, shows signs of depression and/or stress, or who has a history of clinical depression may be more vulnerable to developing a chronic pain problem that persists beyond the initial acute pain complaint. An informed physician can suggest a treatment plan early on that treats the patient’s mental state as well as their physical pain, minimizing the chances of the patient developing a chronic pain problem.
It is advisable for patients to talk with their doctors if they experience any of the following common symptoms of depression:
Stress can manifest itself in several ways. Patients should talk with their doctors if they believe they exhibit symptoms characteristic of stress-related back pain, which are similar to those of fibromyalgia:
In many stress-related back pain cases, patients complain of the pain “moving around”
Chronic pain can also be exacerbated by things such as physical de-conditioning due to lack of exercise and a person’s thoughts about the pain. Patients can help thwart their pain from developing into or minimizing chronic pain by engaging in an appropriate exercise program and practicing distraction, guided imagery and other cognitive techniques.
2) Identify stress triggers that can increase chronic pain
Patients can monitor how their own stress and anxiety affects their back pain by keeping a diary of when their back pain changes and what kinds of stress could be triggering the pain. This exercise can redirect a patient’s focus from the pain to the elements in their life that affect their pain. Identifying stress triggers or emotional triggers that affect the pain will give the patient the opportunity for better pain relief through avoiding or eliminating these stress triggers. Recognizing how depression and stress affect their pain can lessen anxiety by giving patients more control over their chronic pain problem.
3) Communicate about depression
Depression and an emotional reaction to chronic pain are normal. Many patients do not speak to their physicians about their depression because they believe that once the initial pain problem is resolved, the depression, anxiety, and stress they are feeling will go away. However, secondary losses from a chronic pain problem, such as changes in the ability to do favorite activities, disrupted family relationships, financial stress, or the loss of a job, can continue to contribute to feelings of hopelessness and depression.
Talking to a physician about feelings of depression will keep the physician better informed and better able to provide appropriate care. Depression can affect the frequency and intensity of pain symptoms, and the healing rate. Getting simultaneous back pain treatment and depression treatment will give the patient a better chance of a full recovery.
4) Seek multi-disciplinary care for pain and depression
Informing a physician of depression can create an opportunity for a multi-disciplinary course of treatment involving both a physician and a mental health professional. With a team approach, both the pain problem and the depression are monitored simultaneously, and both doctors can communicate about how each area affects the other. It’s important for physicians to understand that changes in the physical symptoms of pain can also be related to changes in a patient’s mental state.
In addition, some common treatments for pain, including opioid pain medication, can actually make depression worse. This worsening depression can then affect the physical presentation of the pain. If both physical and mental well-being are being monitored closely by medical experts, treatment and medication recommendations, including antidepressants, can be made that take both the physical pain and the emotional health of the patient into account.