I have read this many times before but found it again and thought I would share it. It is written so well and expresses how lupies feel in general… I did not write this although it fits me well…
A letter to be shared with friends and family
by Theresa Stoops in Florida
WHAT YOU SHOULD KNOW ABOUT ME
My pain – My pain is not your pain. Taking your arthritis medication will not help me. I cannot 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 not well understood, but it is real.
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.
My forgetfulness – Those of us who suffer from it call it brain fog. 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 caused by chronic pain. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.
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.
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 Chronic Pain 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.
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.
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 ability to control my appetite is broken, and nobody can tell me how to fix it.
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.
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, weeks, or even months. In fact, the good days are what keep me going.
My uniqueness – Even those who suffer from chronic pain are not alike. That means I may not have all of the problems mentioned above. I do have pain above, below the waist, and on both sides of my body that has lasted for a very long time. I may have migraines, 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,
I have shared these thoughts with many “Lupies”, as we call our self, and they agree with me. So when you see someone at the store who gets out of the Handi-cap space and they look fine — Do not judge them as you may Not know their Inner pain.
==== And always remember I LOVE YOU! ====
Yup, it’s me again. I loved all your responses to the last post about sleeping! It truly does help knowing we are not alone in this battle we are in!
As I am writing this post, I have the overwhelming urge to go back to sleep! Again. Considering all the sleep I have had lately, it still surprises me that I am so fatigued. Yet, I made myself get out today and get a few things. By the time I got back home, I was totally wiped!
Now I am sitting here with my puddy tat in my lap, in the recliner, and will probably fall asleep once I sign off. At some point I truly would like a day with no fatigue or pain. Just one! Yeah, I know, pity party for one here. I just wish I could do the things I want or need to do!!! That being said, I am thankful to have another day of life and I really do appreciate it! Even on these bad days, I am thankful to know that at least I am here! There are others who would trade me the chance if they could.
I hope you are all well and happy today! I am up and down. I will survive this day (hopefully) and think about a better day tomorrow! Keep the comments coming! I love to read your comments. Please do not feel neglected if I do not respond to each of them. Some days it is hard enough just to post and if I missed replying to your comments, please know that I read each of them and when the energy is there, I respond. Just have had a bit of bad flaring so not all that “chatty” online. It really means a lot to me when you share because I know that I am not alone too! Thanks to you all for your comments, encouragement and personal stories! ~Jen
Ok, the down time from the title of this post that probably sprang to your mind is a vacation, holiday or something along that line. How great would that be? To take a break and have some fun!
Sad to day, this down time I am talking about is not that type. When you have an autoimmune disease like lupus, one of the most frustrating symptoms is the “toxic” fatigue you can suffer at the drop of a hat. I know, fatigue is not bad, it just means you have worked hard and deserve to rest, right?
Wrong. The type of fatigue I am discussing is the all consuming, total shut down of your body where you have no control of when and how long you will be down. That is the fatigue I have had for the last five days.
It started innocently enough, just sleeping in one day. Or so I thought. It soon manifested itself into high gear and as of today, I have only been awake a total of about 20 hours in five days! No kidding! I mean, I sit in my chair for a few minutes and next thing I know, hubs is waking me up after several hours of me sleeping. I mean, I wonder when it happened and how. It is like a light switch has been flipped. I am “on” and suddenly I am “off”. It is utterly strange and scary when you have this happen.
I did call my rheumy and he said he thinks it may be both fibromyalgia and/or lupus acting up. He is hesitant to prescribe prednisone in case it is the fibromyalgia. He wants to see me on friday. Great… now another of my autoimmunes is acting up too? So in the meantime, I am taking ultram for the pain and waiting for friday. Some days I think I have forgotten how to feel “normal”.
So, as I sit here, or should I say “sleep” here, I hope things will work out and I can feel better soon. Have any of you had this toxic fatigue?
Some days it doesn’t pay to get out of bed. I am vigilant about hand washing and covering my mouth and nose. I have even donned the “masked” look while in public. I try really hard NOT to get anything out there. Why? Because I am immunosuppressed and more prone to getting everything out there if I am not careful.
So much for planning and being careful. I woke up yesterday feeling totally horrible, with congestion and fever and chills and aching all over. If you add diarrhea to the mix you can see the misery. Some of these symptoms I have most days, but the fever and chills anad congestion are new and painful. My ears are involved too so my balance is off. Yup, just what I did not need!
So now instead of feeling just lupie, I am also fighting this flu thing. So, I have been in bed with a bug and feeling puny. Thank goodness I have my husband. He literally waited on me and took care of me. What a sweetie he is! He made me food to eat and I mean, he did it all!
I am feeling much improved today but still resting so I don’t get back to sicker again. You see, most people can push through illness and go on. For a lupus patient, we have to rest, really rest,so our bodies can heal. If we try to puch through it, we will pay a heavy price in getting even sicker than we started out. So now I feel better, but am resting in bed so I can heal better and be able to do more in a day or so.
A word to the wise here is this: Do not ask a lupus patient why she/he is in bed. We would much rather be out of bed, believe me. It is not a choice, nor is it a fatigue that is like you have. It is an overwhelming tiredness that permeates every part of our body and can be painful even. Some have called it toxic fatigue. It is not an excuse to lay in bed. It is a neccessity. Next time you think, “Oh there she is in bed again”., think again. We would love to be like you and able to jump out of bed and rush into a new day… we just can’t. Ok? Nuff said!
Ok, this is one of my personal posts. The last seven days have been an exercise in fluctuating emotions and symptoms. I have had good days and bad days. The good ones I accomplished much. The bad days were spent in bed, in pain, and severe fatigue. I have noticed the pain is getting progressively worse. It is a scary feeling, entering into painful waters on this journey of the wolf.
I have got an appointment at the pain clinic but I have to wait until December. I will update when the time comes. I am also waiting for the results of my tests from the neurologist. I am taking the path that no news is good news. I am not sure how much I can deal with right now.
On my good days, I have done much housework and other chores that wait for my good days. I closed the trailer up for the winter, with the help of my son. I also washed the dishes. We do not have a dishwasher, unless you can say it is me. It is amazing how the dishes stack up and wait for me to do them.
So, that is that. I am getting really upset about trying to feel better when my body will not cooperate. In my head, I am fit and able to do much. In my body, I am like an eighty year old who can only do so much and must take naps. Who knows what tomorrow brings? I am keeping cautiously optimistic that it will be wonderful tomorrow! Thanks for listening to the boring moan from me. Have a great day and hope it is pain free!
I wanted to post about this because I also have this as an overlapping disease with lupus. I know many who have both as well. I found this information on mayoclinic.com. Hope you read it and will have a better understanding when you are done. Always discuss any issues with your doctor.
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|Fibromyalgia tender points|
Fibromyalgia is a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points — places on your body where slight pressure causes pain.
Fibromyalgia occurs in about 2 percent of the population in the United States. Women are much more likely to develop the disorder than are men, and the risk of fibromyalgia increases with age. Fibromyalgia symptoms often begin after a physical or emotional trauma, but in many cases there appears to be no triggering event.
Signs and symptoms of fibromyalgia can vary, depending on the weather, stress, physical activity or even the time of day.
Widespread pain and tender points
The pain associated with fibromyalgia is described as a constant dull ache, typically arising from muscles. To be considered widespread, the pain must occur on both sides of your body and above and below your waist.
Fibromyalgia is characterized by additional pain when firm pressure is applied to specific areas of your body, called tender points. Tender point locations include:
- Back of the head
- Between shoulder blades
- Top of shoulders
- Front sides of neck
- Upper chest
- Outer elbows
- Upper hips
- Sides of hips
- Inner knees
Fatigue and sleep disturbances
People with fibromyalgia often awaken tired, even though they seem to get plenty of sleep. Experts believe that these people rarely reach the deep restorative stage of sleep. Sleep disorders that have been linked to fibromyalgia include restless legs syndrome and sleep apnea.
Many people who have fibromyalgia also may have:
- Chronic fatigue syndrome
- Irritable bowel syndrome (IBS)
- Post-traumatic stress disorder
- Restless legs syndrome
- Rheumatoid arthritis
Doctors don’t know what causes fibromyalgia, but it most likely involves a variety of factors working together. These may include:
- Genetics. Because fibromyalgia tends to run in families, there may be certain genetic mutations that may make you more susceptible to developing the disorder.
- Infections. Some illnesses appear to trigger or aggravate fibromyalgia.
- Physical or emotional trauma. Post-traumatic stress disorder has been linked to fibromyalgia.
Why does it hurt?
Current thinking centers around a theory called central sensitization. This theory states that people with fibromyalgia have a lower threshold for pain because of increased sensitivity in the brain to pain signals.
Researchers believe repeated nerve stimulation causes the brains of people with fibromyalgia to change. This change involves an abnormal increase in levels of certain chemicals in the brain that signal pain (neurotransmitters). In addition, the brain’s pain receptors seem to develop a sort of memory of the pain and become more sensitive, meaning they can overreact to pain signals.
Risk factors for fibromyalgia include:
- Your sex. Fibromyalgia occurs more often in women than in men.
- Age. Fibromyalgia tends to develop during early and middle adulthood. But it can also occur in children and older adults.
- Disturbed sleep patterns. It’s unclear whether sleeping difficulties are a cause or a result of fibromyalgia. But people with sleep disorders — such as nighttime muscle spasms in the legs, restless legs syndrome or sleep apnea — often have fibromyalgia.
- Family history. You may be more likely to develop fibromyalgia if a relative also has the condition.
- Rheumatic disease. If you have a rheumatic disease, such as rheumatoid arthritis or lupus, you may be more likely to develop fibromyalgia.
Fibromyalgia isn’t progressive and generally doesn’t lead to other conditions or diseases. It can, however, lead to pain, depression and lack of sleep. These problems can then interfere with your ability to function at home or on the job, or maintain close family or personal relationships. The frustration of dealing with an often-misunderstood condition also can be a complication of the condition.
Preparing for your appointment
Because many of the signs and symptoms of fibromyalgia are similar to various other disorders, you may see several doctors before receiving a diagnosis. Your family physician may refer you to a rheumatologist, a doctor who specializes in the treatment of arthritis and other inflammatory conditions.
What you can do
You may want to write a list that includes:
- Detailed descriptions of your symptoms
- Information about medical problems you’ve had in the past
- Information about the medical problems of your parents or siblings
- All the medications and dietary supplements you take
- Questions you want to ask the doctor
What to expect from your doctor
In addition to a physical exam, your doctor may check your neurological health by testing your:
- Muscle strength
- Muscle tone
- Senses of touch and sight
Tests and diagnosis
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|Fibromyalgia tender points|
The American College of Rheumatology has established two criteria for the diagnosis of fibromyalgia:
- Widespread pain lasting at least three months
- At least 11 positive tender points — out of a total possible of 18
During your physical exam, your doctor may check specific places on your body for tenderness. The amount of pressure used during this exam is usually just enough to whiten the doctor’s fingernail bed. These 18 tender points are a hallmark for fibromyalgia.
While there is no lab test to confirm a diagnosis of fibromyalgia, your doctor may want to rule out other conditions that may have similar symptoms. Blood tests may include:
- Complete blood count
- Erythrocyte sedimentation rate
- Thyroid function tests
Treatments and drugs
In general, treatments for fibromyalgia include both medication and self-care. The emphasis is on minimizing symptoms and improving general health.
Medications can help reduce the pain of fibromyalgia and improve sleep. Common choices include:
- Analgesics. Acetaminophen (Tylenol, others) may ease the pain and stiffness caused by fibromyalgia. However, its effectiveness varies. Tramadol (Ultram) is a prescription pain reliever that may be taken with or without acetaminophen. Your doctor may recommend nonsteroidal anti-inflammatory drugs (NSAIDs) — such as aspirin, ibuprofen (Advil, Motrin, others) or naproxen sodium (Aleve, others) — in conjunction with other medications. NSAIDs haven’t proved to be as effective in managing the pain in fibromyalgia when taken by themselves.
- Antidepressants. Your doctor may prescribe amitriptyline to help promote sleep. Fluoxetine (Prozac) in combination with amitriptyline is effective in some people. Duloxetine (Cymbalta) may help ease the pain and fatigue associated with fibromyalgia. And milnacipran (Savella) was recently approved by the Food and Drug Administration for the treatment of fibromyalgia symptoms.
- Anti-seizure drugs. Medications designed to treat epilepsy are often useful in reducing certain types of pain. Gabapentin (Neurontin) is sometimes helpful in reducing fibromyalgia symptoms, while pregabalin (Lyrica) is the first drug approved by the Food and Drug Administration to treat fibromyalgia.
- Physical therapy. Specific exercises can help restore muscle balance and may reduce pain. Stretching techniques and the application of hot or cold also may help.
- Counseling. Cognitive behavioral therapy seeks to strengthen your belief in your abilities and teaches you methods for dealing with stressful situations. Therapy is provided through individual counseling, classes, and with tapes, CDs or DVDs, and may help you manage your fibromyalgia.
Lifestyle and home remedies
Self-care is critical in the management of fibromyalgia.
- Reduce stress. Develop a plan to avoid or limit overexertion and emotional stress. Allow yourself time each day to relax. That may mean learning how to say no without guilt. But try not to change your routine completely. People who quit work or drop all activity tend to do worse than those who remain active. Try stress management techniques, such as deep-breathing exercises or meditation.
- Get enough sleep. Because fatigue is one of the main characteristics of fibromyalgia, getting sufficient sleep is essential. In addition to allotting enough time for sleep, practice good sleep habits, such as going to bed and getting up at the same time each day and limiting daytime napping.
- Exercise regularly. At first, exercise may increase your pain. But doing it regularly often decreases symptoms. Appropriate exercises may include walking, swimming, biking and water aerobics. A physical therapist can help you develop a home exercise program. Stretching, good posture and relaxation exercises also are helpful.
- Pace yourself. Keep your activity on an even level. If you do too much on your good days, you may have more bad days.
- Maintain a healthy lifestyle. Eat healthy foods. Limit your caffeine intake. Do something that you find enjoyable and fulfilling every day.
Complementary and alternative therapies for pain and stress management aren’t new. Some, such as meditation and yoga, have been practiced for thousands of years. But their use has become more popular in recent years, especially with people who have chronic illnesses, such as fibromyalgia.
Several of these treatments do appear to safely relieve stress and reduce pain, and some are gaining acceptance in mainstream medicine. But many practices remain unproved because they haven’t been adequately studied. Some of the more common complementary and alternative treatments promoted for pain management include:
- Acupuncture. Acupuncture is a Chinese medical system based on restoring normal balance of life forces by inserting very fine needles through the skin to various depths. According to Western theories of acupuncture, the needles cause changes in blood flow and levels of neurotransmitters in the brain and spinal cord. Some studies indicate that acupuncture helps relieve fibromyalgia symptoms, while others show no benefit.
- Chiropractic care. This treatment is based on the philosophy that restricted movement in the spine may lead to pain and reduced function. Spinal adjustment (manipulation) is one form of therapy chiropractors use to treat restricted spinal mobility. The goal is to restore spinal movement and, as a result, improve function and decrease pain. Chiropractors manipulate the spine from different positions using varying degrees of force. Manipulation doesn’t need to be forceful to be effective. Chiropractors may also use massage and stretching to relax muscles that are shortened or in spasm. Because manipulation has risks, always go to properly trained and licensed practitioners.
- Massage therapy. This is one of the oldest methods of health care still in practice. It involves use of different manipulative techniques to move your body’s muscles and soft tissues. The therapy aims to improve blood circulation in the muscle, increasing the flow of nutrients and eliminating waste products. Massage can reduce your heart rate, relax your muscles, improve range of motion in your joints and increase production of your body’s natural painkillers. It often helps relieve stress and anxiety. Although massage is almost always safe, avoid it if you have open sores, acute inflammation or circulatory problems.