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  • What do you want others to understand about your fibromyalgia life condition, that others don’t seem to realize?

    What do you want others to understand about your fibromyalgia life condition, that others don’t seem to realize?

    My fibromyalgia is considered to be at the severe end of the scale.

    When one has a disease/illness/condition where we frequently get the “but you don’t look sick” cry from the healthy unknowing masses, it is a foreign concept for outsiders (for lack of a better term) to understand the concept of widespread chronic pain.

    The first thing we need you to know is that we aren’t suffering from something that will eventually just go away. My diagnosis was made in 2009 and has been confirmed by several other doctors since then – 2 rheumatologists, 1 sports medicine specialist, 2 orthopedic surgeons, 2 general surgeons, 4 family practice MDs, 1 endocrinologist, 2 cardiologists, and a GI doc.

    They pay close attention to what I say too. They know that if I have to have a procedure of any type, that I will not have the typical healing of the rest of the population. They all got to know me well enough to know that if I say “I’m having trouble getting (fill in the blank with whatever they are specifically treating me for) pain under control,” that I am in serious trouble.

    It doesn’t go away. It is everywhere. It is relentless. And for me, as the years go by, it just gets worse. It is also not something that I can just get over either.

    Click here to Get this or Visit Fibromyalgia Store

    I have no way of planning what days will be good and what days will be bad. On bad days, I go into hiding. I even hide from my significant other as much as I can. Since right now I am unmedicated, I don’t have any way of relieving my pain to a lower level. For me, a good day is one where I can actually walk through a supermarket without the use of an electric cart. Those days just don’t happen often.

    I don’t enjoy not working. I miss my old life. I miss being able to pull off the 100 hour work weeks. I miss the companionship of various different kinds of people. I miss associating with healthy people. I would give anything to be that person again instead of this woman whose doctors, over the course of two years, finally convinced her that she needed to permanently go out on disability – the federal, social security kind that one never comes back from.

    Another misconception is that if we smile and seem happy that we must not be suffering that much. When one has had this condition for a long time, one learns to cope with it. Coping does not mean that we are improving, it means that we have learned to mask our pain in public.

    I know that some with fibro do go to the Emergency Room more often than others. Personally, I don’t. When I lived in Colorado, my doctors specifically had a note put in the system at my local hospital network noting that my fibro was very much real and that I am quite possibly the most stubborn person they will ever encounter.

    What I want new ER doctors who I might encounter in the future to know is:

    1. I most likely should have been there anywhere from hours to days before I actually have shown up. I am not a drug addict nor a pill seeker. I do not get high off these, I get some degree of actual relief.
    2. If it seems like everything they do is hurting me, it is. When someone puts a blood pressure cuff on me and begins to inflate it, I get tears in my eyes. I actually cry.
    3. If I give them a number on the 1–10 pain scale, it is probably several points above anything than other patients have reported at that number.
    4. And finally, listen to me. I know my body. I know my body in such a way that I actually speak in medical terminology, I have taken the time to educate myself, and I am smarter than you will ever know.

    Finally, I have also had people say to me that they think that they could handle what I go through. I seriously doubt that. I would not wish this on my worst enemy. If a normally healthy person walked in my shoes for even one day, I am betting that before the end of that day, they would be at a doctor’s office begging for pain meds.

    And since last September, except for a couple of brief time periods where I had to give in and get them (shingles, tooth extractions, and a sprained back), I have operated without any sort of opioids. I needed to know just how bad my pain was. I now know, and I want my meds back!

    https://fibromyalgia-6.creator-spring.com/
    https://www.teepublic.com/stores/fibromyalgia-store

    Click Here to Visit the Store and find Much More….

    For More Information Related to Fibromyalgia Visit below sites:

    References:

    Fibromyalgia Contact Us Directly

    Click here to Contact us Directly on Inbox

    Official Fibromyalgia Blogs

    Click here to Get the latest Chronic illness Updates

    Fibromyalgia Stores

    Click here to Visit Fibromyalgia Store

  • Do you know the most misunderstood aspects of living with fibromyalgia?

    Do you know the most misunderstood aspects of living with fibromyalgia?

    Fibromyalgia itself is still very much a mystery. Although doctors now have more information, and many doctors now accept it as a “real” issue, we still have a LOT to learn about fibro and chronic pain conditions in general. I personally agree with doctors who believe that fibro is not a condition in and of itself, but the result of other traumas or illnesses.

    I was diagnosed with fibro in 2002 when I was in my early 30s, so I’ve had this condition for a good while. I actually went to a young doctor at LSU-S medical center who was a researcher in the field at that time, and to a very good rheumatologist. These and later doctors have certainly helped my condition improve.

    I also try to eat healthily (that is, not heavily processed) foods, and MSG drives me nuts, so I avoid it like the plague, but fibro still impacts my life far more than many people would suspect. And, yes, I’ve tried some of the much-advertised medicines. They work, but they also made me gain a lot of weight, which makes the fibro even worse. I prefer to use OTC pain relievers and natural remedies.

    Click here to Get this or Visit Fibromyalgia Store

    1. Everyone with fibro has slightly different symptoms, and symptoms can vary widely day to day. The pain and tender points are common to everyone, but symptoms vary WIDELY, as does the level of disability. Symptoms also very widely from day to day. Some days I may be doing GREAT and I’ll be outside trimming goats’ hooves or even pounding t-posts. Another day I may not be able to get off the couch. The unpredictability is maddening. I love to be busy; I love to be outside doing things in my garden, but sometimes I can hardly drag myself to the kitchen. Just because yesterday I could do something doesn’t mean that I can do the same thing today.
    2. I hurt all the time, all over. Most of the time, thanks be to God, it’s only just above consciousness-level, but it’s there. I usually describe it as the ache you have when you have a slight fever. This all-over-ache is there when I sit down, when I stand up, when I walk, and when I lie down. It never goes away completely, although I can block it out SOMETIMES if I can keep busy. Other people have HORRIFIC pain, much worse than mine.
    3. FATIGUE for me as just as bad or worse than the pain. (I may have CFS as well as fibro.) I’ve had doctors quip, “Well, I’m tired all the time, too.” We’re not talking about “tired,” here. We’re talking about feeling like you were just unplugged, like you have a bad case of the flu, or like you have on-the-verge-of-tears exhaustion. If you’ve never felt it, you can’t completely comprehend it. Again, the CLOSEST I can compare it to is a BAD case of the flu, where you are so weak and tired you can barely get up, if you can even do that. Your arms and legs feel like they weigh 100 lbs. each. Let me put this in real terms: there are times when I cannot get to the kitchen to make something to eat or when I’m so tired that I cannot go to the doctor’s office even if I’m sick. Getting dressed can be a major undertaking. At the worst times, I even slur my speech. I can hardly think or feel any emotion, because both of those require energy.
    4. My “tiredness” isn’t relieved by sleep or rest, either. The fatigue comes and goes as it pleases, although it often DOES seem to be worse before weather-changes or after I’ve tried to do too much. Rest certainly helps a LOT, but when I wake up in the morning I often feel as if I’d been beaten. My muscles are incredibly stiff, and it usually takes me at least 30 minutes to be able to walk normally. On a “bad” day, my muscles STAY stiff. In other words, even with medication, I do NOT sleep well. Some doctors have surmised that this poor sleep also means that our muscles aren’t being repaired, which leads to pain.
    5. My body over-reacts to some sensations…(and perhaps ignores other pain.) When I’m having a flare, anything that touches my back or hits my lower legs or feet feels like an electric shock going up my spine. Do NOT come up from behind me and touch my back, especially my lower back. I will hit you. Seriously. Hard. It’s like you touched me with a taser. This is how bad it is: I was working with a filly one day and she came down on my foot. That hurts, of course, but as it was during a flare the pain was so intense that I fell down on the ground and literally could NOT get up for what seemed like minutes. I was terrified that she would trample me. Finally I was able to pull myself up on the fence with my arms. After that I had to admit that I could no longer safely work with horses.
    6. That leads me to this: although my fibro is really quite mild in comparison to many people’s it has altered my life in SO many ways. I would simply not be able to work outside the home anymore in most jobs. I get clumsy as heck, and sometimes my hands don’t work well. I don’t drive long distances, either, because if I have a fatigue-flare I would not be able to drive safely. I have to plan my shopping, because standing up can be EXTREMELY painful at times and I’m too proud to use a cart. I’m also not very reliable, because I never know when I’m have a spell. It isn’t that I’m depressed; there is SO much that I’d love to do if I had the energy and ability (like try living off-grid), but I know that’s not reality. I often get in trouble because I plan MUCH more for myself than I can do.
    7. I want to zero in on one aspect of fibro that literally hits close to home: housekeeping. When you have fibro or chronic fatigue syndrome (now called Myalgic encephalomyelitis) you have to use your brain (if it is functioning that day) to spare your energy. That means that I look around and take as much as possible to on each errand to a part of the house rather than make multiple trips. I now actually have to have someone help me clean. (It’s embarrassing, really.) Sometimes jobs like folding clothes take several attempts; it’s honestly exhausting.
    8. NO, exercise is NOT a magic bullet. I think doctors often say this because it IS partially true. Obviously if a person is literally lying around with no interests or excitement some exercise MIGHT make him or her feel better. During a flare, however, exercise is like a normal person exercising while having the flu, and it can reduce you to tears. During my “normal” times I can walk a mile (it takes me about 25 minutes because I am rather clumsy and have balance problems on the treadmil) fairly easily; during a flare I can hardly walk to the kitchen. Exercise DOES help, but it’s not a cure and, during a flare, it can do much more harm than good. It can take us DAYS to recover.
    9. No, all those quack products and supplements aren’t magic bullets, either. Sometimes nutritional products, or gluten free items, or this or that do help certain people who have deficiencies or unknown food allergies. I do think the reason that I do as well as I do and am not completely bed-ridden, is because I keep moving to some extent (the baby goats are excellent therapy), I DO try to eat a reasonably healthy diet, and I discovered by chance that MSG was a major trigger for me (it makes me feel like there is drill going into my joints.) Eating fruits, veggies, whole grains, and lean meat (as long as you aren’t allergic to any of these) and cooking them at home really helps some people. (Not all. Again, I think “fibro” is so maddeningly different because it’s actually the result of very different conditions in different people.)
    10. Fibro may not kill a person, but it can make a person wish he or she were dead. That’s the sad truth. Long-term chronic pain is life-changing, it sometimes occurs in the prime of life, and can bring hopelessness. I’m blessed, but many people with fibro lose their jobs, their spouses, their hobbies/sports, and their friends. What makes it even worse is the fact that it is “invisible,” so many doctors and family members completely dismiss it. Imagine being in a lot of pain and constant fatigue and having a doctor basically tell you that you’re just crazy or a hypochondriac. (Funny, but that’s also what doctors used to say about menstrual cramps and then about lupus. Basically it’s the first answer often given when doctors don’t know what to do about an issue.)

    So there are 10 things to know about fibro. Again, every case is different, and I feel very blessed to be able to do what I can do.

    https://fibromyalgia-6.creator-spring.com/
    https://www.teepublic.com/stores/fibromyalgia-store

    Click Here to Visit the Store and find Much More….

    For More Information Related to Fibromyalgia Visit below sites:

    References:

    Fibromyalgia Contact Us Directly

    Click here to Contact us Directly on Inbox

    Official Fibromyalgia Blogs

    Click here to Get the latest Chronic illness Updates

    Fibromyalgia Stores

    Click here to Visit Fibromyalgia Store

  • My Fight with Fibromyalgia (My Best Way to Tackle this Illness)

    My Fight with Fibromyalgia (My Best Way to Tackle this Illness)

    I don’t know if my way is best, but I’m nearly symptom-free. I take medication and I slowly increased my exercise and activity.

    The worst:

    In the spring of 2008, my fibromyalgia (technically fibromyalgia syndrome or FMS) was destroying my life. I couldn’t move without crippling pain. I would move in small increments like going to the bathroom or switching from the bed to the couch. I needed help getting to appointments. If my ride’s car didn’t have soft seats, I was in agony.

    Medicine:

    Sometime that summer, I was prescribed Lyrica. It wasn’t the first thing I tried, but it was the first thing that helped. It made a big difference. I did a little bit of housework, a little bit of caring for my kids, and I could get myself to appointments.

    I lived like that for years. I got Social Security Disability Insurance (SSDI) after a long appeals process. A couple of times, I tried to be productive and return to school or get a job. Both attempts failed.

    Exercise:

    In 2012 or 2013, I began physical therapy for the FMS. Fortunately, they started me in a therapy swimming pool. That way, the exercises weren’t “weight-bearing.” It did add a little bit of resistance, but really it was less than holding a 1 pound weight. I started with 5 minutes of exercise – plus after I got out of the pool, they would stretch my legs gently.

    I don’t remember how many months I continued with them. I think it was close to a year and a half. They added two minutes a week at first. Later, they added five minutes a week. With the added minutes, they added exercises. I was much stronger when they finally started having me work on the land. Eventually, I could exercise for 30 minutes weight-bearing. At that point, they discharged me.

    Click here to Get this or Visit Fibromyalgia Store

    With all this exercise, something very nice happened. The constant widespread pain declined. It was still pretty bad when I was discharged, but not agonizing. I also disagreed with the discharge because I still couldn’t do a lot of basic household tasks. The fact was, I still wasn’t as strong as the average couch potato.

    At home, I kept doing the exercises. I really liked the reduction in pain. Then, I got a virus and I was sick for a week. The FMS symptoms worsened to the point that I couldn’t do the exercise routine anymore.

    It wasn’t at its worst. I decided on a plan. I chose a YouTube exercise video for beginners. I picked one that used the whole body and seemed to be a true beginner level – for average people. In order to make it possible for me, I started with the first 5 minutes of the video.

    I did it every morning. After a week, I added a minute. I kept adding minutes in small numbers week after week. When I was finally doing the whole video, I felt better all the time again.

    Activity:

    In 2015, I decided that I could manage a part-time job. I did a job search, which is a story in itself. August of 2015, I began working 15 hours a week. The job involved some walking and some stairs, which worried me at first.

    The walking and stairs turned out to be a good thing. Don’t get me wrong; it hurt to walk and climb stairs. But they were absolutely necessary to my job. And since I care about work ethic, I did both with a positive attitude. My symptoms improved further.

    When I was laid off in 2016, I was ready for a job with 30 hours a week and some activity. A year later, I went to 40 hours a week and more activity. Last fall, 2018, I increased my activity again. When I had a smartwatch (I recently lost it), I learned that I’m walking about 9000 steps most days.

    The difference is profound. I still have a ghost of pain all the time, but it’s not a problem. I seldom notice it.

    If I get too much activity, I will feel it. It’s horrible. But since I started working, I’ve gotten more and more careful to monitor my activity. I’ve become aware of the way a muscle feels when it’s starting to reach that point. That means I don’t have problems often.

    Another restriction:

    I have to avoid NSAID class medications except in emergencies. For some people with FMS, they increase symptoms. These include aspirin, ibuprofen, naproxen sodium, and everything related. The safest way to check whether you have this issue is to take a dose of aspirin. It will be out of your system in 2 to 3 days. If it does make you worse, you won’t have to suffer for weeks.

    Of course, in case of a heart attack, I would take aspirin as directed. A couple of days of extra pain doesn’t even matter at that point.

    The over-the-counter pain medicine that doesn’t hurt is acetaminophen (often called Tylenol or Paracetamol).

    https://fibromyalgia-6.creator-spring.com/
    https://www.teepublic.com/stores/fibromyalgia-store

    Click Here to Visit the Store and find Much More….

    For More Information Related to Fibromyalgia Visit below sites:

    References:

    Fibromyalgia Contact Us Directly

    Click here to Contact us Directly on Inbox

    Official Fibromyalgia Blogs

    Click here to Get the latest Chronic illness Updates

    Fibromyalgia Stores

    Click here to Visit Fibromyalgia Store

  • How does fibromyalgia usually start initially?

    How does fibromyalgia usually start initially?

    I’m not sure what it is like for other people, but I suspect I have had Fibromyalgia my entire life. As a child, I was always hurting, but I was told it was just “growth spurts“. Things that didn’t seem to hurt other children (rough playing) were excruciating to me. I didn’t have a lot of energy, even when most kids were busy running and playing.

    I was very sensitive to weather changes and preferred to stay indoors, and I was “sick” a lot. I seemed to get every cold that come along, but sometimes I would fake being sick, so I could stay home from school because I was just so tired all the time. As a teenager, I didn’t go out and do a lot of things with my friends, because I couldn’t keep up with them.

    I didn’t participate much in school events, clubs or sports, because I didn’t have the energy. I struggled in school, because I had a hard time learning, concentrating, focusing, and remembering things. I barely passed tests, and even though I was learning the material, I had trouble getting it back out on paper for assignments.

    I felt like my memory was like swiss cheese, full of holes. Especially when it came to remembering history dates and names, math formulas, and chemistry equations. When I was 17 I started college but after a year and a half, had my first major flare-up, and collapsed doing an aerobic routine. I was sleeping literally 18 hours a day and was so exhausted I could barely get myself to the bathroom or chew my food.

    I became so severely anemic I almost died. My doctor said if my iron level had dropped even one more point (it was 14. Should be at least 50-100) she would have forced me into the hospital. I had to quit college. A year later, I went back but again had to leave because I was flaring up again. I had to quit or was fired from jobs, because I was too slow, and couldn’t keep up with the workload, no matter how hard I tried, and the more I pushed myself, the sicker I got.

    By the time I was 25 I couldn’t work at all. I was young and looked healthy, so my doctors just told me I was depressed. It was years before I got a full diagnosis. It took two different psychologists to suggest to my doctor that I get tested by a specialist for Fibromyalgia before I could get anyone to realize I wasn’t JUST depressed.

    Day to day, my pain level is at about 6/7. It’s primarily manifested in both my legs, my left hip (sciatica), my back, shoulders, and neck. Occasionally have so much pain in my hands I can’t even type on the computer (which makes my chosen profession as a writer more difficult than most).

    Click here to Get this or Visit Fibromyalgia Store

    My life is pretty limited because any physical activity beyond a 20-minute walk once or twice a week sends me into a major flare-up that lasts weeks at a time. When this happens I can not function at all and am bedridden for days at a time. I can’t do much but watch TV and sleep.

    During one flair, I once slept for three days straight, because I was so exhausted. I didn’t even eat. I woke up once, to use the bathroom and sip some water, and passed out again. Once I woke up, I felt really good for about six hours, and then the fatigue hit again.

    I have very few days when I feel “normal”, or energetic. No matter how much sleep I get, I am ALWAYS exhausted. I suspect it’s the same kind of tired new parents feel when they haven’t slept a full night in a year. I remember one time, when I was about 14, I woke up in the morning and actually felt refreshed and energetic, like I could face the day head-on and bounced out of bed. Literally, bounced.

    I remember it so well because the entire day I was confused. I had never felt that before, and it was so foreign to me. The next day it was gone. I have never felt that again. EVER. If that is what it feels like to be “rested” I’ve been screwed out of good sleep my whole life. One day out of 32 years isn’t much.

    Out of a 30 day month, I have maybe one “Less Bad Day” a week. If I’m lucky. I am lucky enough to have a man in my life who understands my limitations and doesn’t expect me to do more than I am able to. He often does the errands, and a majority of the housework, because I just can’t finish it all.

    When you have Fibromyalgia, there are no good days. Not really. Days fall into three distinct categories:

    1. Flair ups: Days when you are in so much pain you pray for death but it never comes. You feel like you’ve been hit by a truck. No amount of drugs help.

    2. Bad Days: When all you can do is take a shower and brush your teeth if you’re lucky. Housework and errands have to wait because you’ve used all your energy just bathing. Strong pain meds take the edge off, but you have the energy level of a geriatric slug wading through tar.

    3. Less Bad Days: When the meds kind of work, but you still hurt, and you don’t really want to do anything. But, you suck up the pain and the exhaustion and force yourself to go grocery shopping because if you don’t you’ll starve. It’s really a matter of survival priorities when you have Fibro. Most of us just try to get through each day and do whatever we can to not cause a flair-up of symptoms.

    https://fibromyalgia-6.creator-spring.com/
    https://www.teepublic.com/stores/fibromyalgia-store

    Click Here to Visit the Store and find Much More….

    For More Information Related to Fibromyalgia Visit below sites:

    References:

    Fibromyalgia Contact Us Directly

    Click here to Contact us Directly on Inbox

    Official Fibromyalgia Blogs

    Click here to Get the latest Chronic illness Updates

    Fibromyalgia Stores

    Click here to Visit Fibromyalgia Store

  • Do you know someone who was diagnosed with Fibromyalgia and Polymyalgia?

    Do you know someone who was diagnosed with Fibromyalgia and Polymyalgia?

    I can tell you as someone who was diagnosed with PMR and fibro, most PMR info on the internet isn’t all that accurate. PMR usually affects elderly women, but it’s not so rare for younger folks to have it. And, most who are below the age cut off aren’t even given the blood tests needed to confirm the diagnosis because doctors just think it’s impossible to have PMR at 30, 40, 50 years of age.

    I was 54 when I woke one morning thinking I must have the flu due to the unexplained pain and stiffness in my body. Over the course of two weeks, I had two primary care visits, pretty large doses of pain meds, increasingly painful stiffness that lasted until 2 or 3 p.m., severe sleep deprivation, rapid weight loss.

    I thought my normally attentive primary care dr might have a cruel streak in her when she denied prescribing me steroids (I was desperate for relief) even for just 2 or 3 days until my appointment with the rheumatologist arrived. She explained it could mess up important blood work the rheumy would likely need.

    By the time I saw the rheumatologist (just 2 weeks from the onset of symptoms), I could not dress my upper body, wash my hair, or brush my hair because of the pain and extreme lack of mobility in my shoulders, upper arms, and neck. I couldn’t drive because I could not turn the steering wheel or press on the brake hard enough to stop it from moving.

    I couldn’t turn my head to look to the side let alone behind me to back up. I literally performed an off-balance hobble to the bathroom when needed, and spent the rest of my time in a recliner. It was the least painful thing I could do to help myself. I could barely hold a fork or spoon let alone cut any food.

    My lower body was crippled by horrible pain and unbelievable stiffness. Feet, ankles, knees, hips are all affected. This was sheer hell. Every single day my condition worsened exponentially. My first time in a wheelchair was my first appointment with a wonderful rheumatologist. I needed help getting out of the wheelchair and into the SUV to go home because I couldn’t rise without falling back to the wheelchair seat.

    Click here to Get this or Visit Fibromyalgia Store

    I went into all that because when I googled my symptoms, PMR was often a result but I didn’t think it was that because the information didn’t even touch on the severity, that it could be completely disabling within just a few days time, or the widespread symptoms outside of the upper body morning stiffness. No way did those symptoms cover what I was experiencing!

    Upon diagnosis, I started a prednisone regimen and found a couple of PMR groups on Facebook. When I read thru the posts of the first group, I did it through heavily flowing tears and frequent nose-blowing breaks. I scrolled and read all night long. THESE PEOPLE WERE DESCRIBING MY EXPERIENCE!!! I truly felt 100% alone in this outside of my rheumy understanding what was happening and assuring me I’d get better.

    Nothing in print truly confirmed my symptoms. When you are at a pain level of 8 to 10 every single moment of every single day, when the 30-minute increments of sleep you manage a few times a night end with the sound of yourself moaning in pain loud enough to wake you, when you’re hypersensitive to light, sound, motion, touch, and the best-printed info you can find makes it sound like you have some aches and pains in the morning, you feel A.L.O.N.E.

    It was in the FB groups where I learned that the severity of symptoms and problems simply getting yourself to the toilet to pee was the norm. Countless people younger than me had PMR. Countless people suffered for months, got addicted to pain meds (which do not help PMR, by the way), were brushed off by doctors as complainers or drug seekers, never even received referrals to rheumatology! It’s a fairly rare condition but frequently misdiagnosed or undiagnosed, and not treated properly.

    Bloodwork alone doesn’t 100% confirm PMR. But, bloodwork combined with improvement with prednisone is confirmation. Unfortunately, so many in the FB groups have struggled for years–even decades–because we are individuals who respond differently to the same treatments.

    Prednisone is the cure (although some have achieved success with an anti-inflammatory diet & lifestyle change). No amount of pain meds will help. I know. I was on heavy doses for 2 weeks.

    I was fortunate to start low-dose pred, increasing dosage until I was able to function. Stayed on that dose for a couple of months & tapered down (which was scary because each small decrease in dosage brought on flares for a few days) over the course of a few months. I’ve had a few flare-ups since, but the bloodwork was borderline, so I chose to wait it out & I was lucky enough that the flare-ups passed on their own.

    When my rheumy diagnosed the PMR, he said he thought there was something else going on too but he wanted to get the PMR under control first. It was later that he was diagnosed the fibro. Fibro is a bitch. I hate it. It’s unpredictable & the brain fog not only makes you feel like you’re losing your senses, I think it can actually make you crazy at times.

    It’s a struggle to mentally and emotionally deal with the daily pains & bouts of extreme fatigue, and flare-ups that can leave you bedridden, but it’s the unpredictability, the making plans and doing everything possible to be prepared to keep your plans or commitments, and not knowing until the time comes if you’ll be able to do it….and if you are, how long will you last?

    The two conditions are similar in that they push the limits of pain & fatigue, but they are very different, at least for me, in how adversely they affected my life. I’m one of the lucky PMR-ers because my length of treatment fell within the parameters of most descriptions, and my steroid dosage was in the middle range too.

    As much as I hate fibro, I’d choose it over PMR if I had to choose one or the other. Unless there’s a guarantee PMR will be treated with success in getting off prednisone, I’d choose fibro cuz I wouldn’t stick it out for years and years with PMR pain, or OMR pain-free but stuck on prednisone forever.

    So, if anyone had the patience to sit thru my ramblings, I hope you felt you gained some helpful insight. My intent was to inform readers that most material describing PMR (including that handed out by doctors) makes it sound like a Club Med experience compared to the living hell it really is.

    If you suspect you may have it, insist on seeing a rheumatologist for the best chance of successful treatment. Successful means little to no pain and steroid-free! This turned out to be therapeutic for me and I’ve never discussed my experience like this with anyone–ever!

    https://fibromyalgia-6.creator-spring.com/
    https://www.teepublic.com/stores/fibromyalgia-store

    Click Here to Visit the Store and find Much More….

    For More Information Related to Fibromyalgia Visit below sites:

    References:

    Fibromyalgia Contact Us Directly

    Click here to Contact us Directly on Inbox

    Official Fibromyalgia Blogs

    Click here to Get the latest Chronic illness Updates

    Fibromyalgia Stores

    Click here to Visit Fibromyalgia Store

  • Do you know back in the 1800s fibromyalgia is a psychiatric ailment condition?

    Do you know back in the 1800s fibromyalgia is a psychiatric ailment condition?

    Fibromyalgia was first described in the early 1800s. It was considered a psychiatric ailment for decades. It wasn’t until a study done in 1980 that doctors were able to identify it scientifically. I got sick with it in 1989, a very stressful time in my life.

    The problem was that even though the year 2000 many, if not most, doctors continued to refer their patients to a mental health professional. Doctors refused to believe it was real. In the 1990s internationally known and respected rheumatologists (thankfully I have forgotten his name) continued to claim that FM did not exist.

    He wrote about his opinion and addressed numerous medical conferences to tell the doctors attending to not let what their patients were saying sway their understanding that this “condition” was basically all in their mind, and to continue to refer them to mental health facilities.

    Could this (especially in the 19th century and early 20th century) be because 98% of those patients were women? Who knows.

    The idea that fibromyalgia may be the symptom of inactivity deserves an answer. If you do not have FM or live with someone who does, it is virtually impossible for someone with FM to explain. My way of explaining it is that it is a circle or cycle of pain.

    So, I wake up in the morning in pain. It doesn’t matter how well I did, or did not, sleep. The pain comes from all over my body. Some of it is a dull ache but for me, most of my pain feels like a bruise. It is very easy to elicit pain in a specific area simply by pressing on it. I feel like someone with a ball-peen hammer (the hammer with a round ball on one end) spent the night hitting me with it all over my arms, neck, back, and legs.

    When I get out of bed, I’m dizzy and the pain is bad. But as I go through my day, and my muscles loosen up the pain level drops. I have a few good hours on most days from 10 am to about 2 pm. By the time it gets to 3 pm, the fibro fog has descended and I can’t think clearly.

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    Trying to have a conversation with fibro fog is impossible. I can see somebody’s lips move but what they are saying doesn’t make sense. I can start to answer them but somewhere along the way I forget what I was saying and fall silent. I often say something but the words don’t go together. I am aware of this difficulty, but I am powerless to fix it.

    During this time I am overwhelmed by fatigue. Often I can actually feel my energy drain out of my body. The need to sleep is strong.

    I remember one time when my husband and I were going to go to a nice hotel for the night while my parents watched our two teenagers. We spent the morning packing and taking care of things. We finally got in the car about 1:30. We hadn’t eaten, so we stopped at a restaurant we liked about four miles from our house.

    As we were finishing our meal, I could feel my energy drain away. I decided to ignore it. I wouldn’t tell my husband. We had a three-hour drive ahead of us and I thought I could just nap in the car.

    When we walked back to the car I started crying and told my husband what had happened. He was very used to this. He asked if I wanted to go on or return home. I told him how sorry I was but I needed to go back home. When we got there I went straight upstairs and went to bed, still crying. Eventually, the tears stopped and I fell asleep.

    Now that I’m older, that need to sleep in the afternoon is even worse. I plan my day around it. Doctor appointments have to be finished by 1:00 or my husband has to take me.

    As the afternoon and evening progress, the pain begins to ramp up. I am powerless to get on top of it. By the time I go up to the bed, I am drained. My pain is bad, but my fatigue barely lets me brush my teeth. I fall into bed and as my body relaxes, my mind, which has been sleeping most of the day, wakes up.

    I know I desperately need sleep but my mind is wide awake. Thoughts run through it for hours keeping me awake. I think about my day, about where we should go for our anniversary, I sing songs. Often a bit of a song runs through my thoughts in a continuous loop.

    Three hours later, about 1:30 am, I get up and go to the bathroom. Then I take two Tylenol and go back to bed. I am finally able to sleep until about 8 am.

    And the cycle continues.

    Here’s the thing about exercise. Some days are a little better than others. On those days I may run an errand and come back completely worn out. On those days, if the weather is nice, I may decide to walk half a block. I return worn out.

    On the days when I’m feeling especially good, I might take my three-year-old grandson to the park. It is a significant walk but I love walking with him. By the time we get back home, I can’t move. I go to bed and can’t get out of it in the morning.

    If I really have an active day, sometimes I have to spend the next day in bed. I’ve had severe FM for 30 years and I still can’t figure out how much activity is right for that particular day. It’s constantly changing.

    Doctors who don’t fully understand FM advise their patients to get outside and work up to walking a mile, go swimming, take up a sport. They simply do not understand the pain and fatigue cycle of FM. I have a primary care doctor and a pain specialist.

    Too much exercise causes great setbacks in FM. We have a good exercise bike and I decided to get on it and build up my endurance. The first day I pushed myself and felt horrible that afternoon. I haven’t ridden it since. The amount of time I rode the bike? Two minutes. I think that says it all.

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    References:

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    Official Fibromyalgia Blogs

    Click here to Get the latest Chronic illness Updates

    Fibromyalgia Stores

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  • Fibromyalgia: Do you think that Fibro Patients are imagined to live without pain?

    Fibromyalgia: Do you think that Fibro Patients are imagined to live without pain?

    I would think that would qualify as an oxymoron, calling Fibromyalgia a “comfort zone”! Since I noticed the first pains, it seems as though I haven’t been comfortable again.

    I know you mean more on a mental/emotional level, however. I would still be inclined to think not. From what I’ve read, the people I’ve talked to a majority of people with Fibromyalgia were “type A” personalities. Meaning, they were movers, shakers, doers, overachievers, survivalists– we were always moving, cleaning, hustling, being as efficient with time, so to do as much as possible, with the least amount of time.

    Plus, we did it right, we did it without asking for help, and we did it for everyone but ourselves. I’ve said, although I’m stuck with FM now, I can still say I lived one heck of life before. And, even since.

    So, when FM hit us, it not only took away our ability to move, it took away who we were at our core. The way we always functioned was yanked away, and after all the Dr’s, tests, and fear before our diagnoses were gone, we were left with that same energy running laps in our brains. Some of us were predisposed to mental illness, some not, perhaps. But, I know a lot of people get depressed. Who wouldn’t? Fibromyalgia is a beast of mythical power.

    It attacks you at your senses-sight, smell, sound, touch, taste, temperature- everything is affected. Sound tones (dog barking), feel like knitting needles to your ears. Sunlight is blinding, phone lights give me headaches. And, smells! I get nauseous walking to the store from car exhaust, cigarette smoke on people walking by, detergents used by the store, (not to mention the detergent aisle-my eyes water & burn &my lungs close), 20 different people with 20 different smells from cologne, perfume, lotion, bath soap, everything.

    It’s unpleasant, at best. Worst case, I get headaches, nausea, I “taste” the smells, I get dizzy. It’s not great. I break out into a sweat several times a day, for no apparent reason. Some people are constantly cold, like my icy feet & hands. I constantly have every symptom of a bad kidney infection, which is a gift from FM called Interstitial Cystitis.

    FM is different for everyone, except in that it’s typically different for each of us every day. I often say it would be easier to draw what my body feels like. My skin would be lumpy with huge knots, black and blue, and on fire from the waist up. My eyes, nose, ears & throat would have fire coming from them, as well. My bones would all be broken to some degree.

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    The worst would be my pelvic/hip/tail bone, and my feet would be mutilated, full of broken glass, and look like ice. My hands would also be swollen, black and blue, full of broken bones and glass, with rubber bands wrapped tightly around them. Sharp blades that cut into my wrists, would go down the insides of my wrist, into the bend of my elbows.

    I would have various bugs biting me, making me itchy, and I would have stickers poking my skin. There would be people around me, stabbing me with knives, randomly. I would have twisted metal for my neck/upper spine. Thick, strong cables would be my tendons, and invisible powers will pull them in the wrong directions, at inopportune times, making it easy for a knee/hip/arm to “give out”. A sick marionette doll, of sorts.

    I definitely don’t count nausea as comforting, either. Unable to take meds because of stomach pains/nausea, or getting nauseous from said medications. Feeling your head swim when you’re trying to figure out what to do, or say, because of fibro fog.

    The headaches, body aches, pain all the time take a toll on your mind, body & spirit. Your friends don’t understand or want to hear about it. Your family doesn’t believe you, and why would they? DOCTORS don’t believe you, half the time!

    So, you question your own sanity. You become depressed, isolated, withdrawn. You stop getting invitations because they assume you’ll say no, again. You lose respect from & for others, because you have nothing but time on your hands, and Fibromyalgia WILL be in your thoughts- like it or not. You simply cannot live a “normal life“.

    In my case, I can’t stick to a schedule if my life depended on it. I’ve had FMS for fifteen years, and I get disability, subsidized housing, free rides to dr appointments, and in-home services-someone who comes to help me with cooking, cleaning, etc. I don’t HAVE to do anything, except collect my services, and be “COMFORTABLE”. Yet, I’m constantly trying to do BETTER.

    I’m a double Psych major at the local college, and it will take me longer than most, to finish with my degrees. I’ve gone to Heald college twice for a Business degree. Each time, I have to “fix” my financial aid mess caused from the last time my health stopped me from completing school.

    Each time, I’m older, my abilities are less, and my confidence wavers, when my cognitive abilities are slower, and I’m scared to death I’ll fail. So, why bother, if Fibromyalgia can be a “comfort zone“? Why try to be anything more than who I am TODAY?

    Because I AM NOT FIBROMYALGIA! I HAVE Fibromyalgia! But, I REFUSE to stop moving, stop trying, stop living. Even if I can only move, try 1 day of the week, I’ll take it. And, I won’t feel bad the other 6 days, because ignorant, (read: uneducated, have never felt how I feel, so can’t possibly fathom what it’s like), people often think I’m lazy, I’m lying, I’m scamming the system, or I’m simply comfortable with this horrible condition with which I’ve been afflicted.

    I hope this answers your question. I’m hoping you can answer one for me? Most people don’t know about Fibromyalgia, much less what it does to someone. What would drive you to ask this question, and in the way you asked? With FMS being a pain condition, why would you suggest anyone could/would find any comfort in having Fibro? What is your experience, if any, with Fibromyalgia?

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    Official Fibromyalgia Blogs

    Click here to Get the latest Chronic illness Updates

    Fibromyalgia Stores

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  • What is daily life like for people living with fibromyalgia pain?

    What is daily life like for people living with fibromyalgia pain?

    On a scale of 1-10, my average daily pain level is a 6 or a 7. All-day. Every single day of my life. It’s always there, and cannot be ignored no matter how engrossed in something I may be.

    Being in constant pain is exhausting. Fatigue is a huge issue in my life. Unrefreshing sleep is one of the hallmarks of this disease. I sleep about ten hours per night and still wake feeling like I used to in college when I pulled an all-nighter studying. That’s on my good days.

    Bad days are more like staying up for three days while having the worst flu of your life. Fibromyalgia has what are called “flares” where the disease is more active than usual. For me, these can last for weeks, and during a flare, I’m almost completely bedridden, sleeping up to 20 hours a day. Literally too exhausted to leave the house, sometimes even to shower or fix myself a meal. Careful management of my energy levels helps limit these to just a couple a year.

    Even on good days, energy is in very short supply. I’ve had to learn to plan not just my day, but my entire week carefully. A three-hour grocery shopping trip requires me to build a day in before it to rest up for the activity, and a day afterward to recover.

    Cognitive dysfunction is pervasive, especially on days when the fatigue is severe. Putting together a coherent sentence or following a simple conversation becomes a struggle. My favorite TV shows may as well be in Swahili as far as my understanding of what’s happening. Handling money, paying bills, filling out forms, reading Quora questions correctly, all become simply too difficult when I’m tired.

    Words desert me. My family has become remarkably good at deciphering what I mean when I ask them to go get me the “thing for the thing” (usually accompanied by a vague hand gesture). I lose track of where the thought is going before I finish a sentence when talking. “Sweetie, can you run upstairs and get…” Get what? I have no idea.

    I’ve had to teach my family that a blank stare and a “huh?” means start over with whatever you just said to me. From the beginning. Repeating just the last few words will do no good, and please don’t raise your voice (see below). Slow down. Speak clearly. Watch my face to see if I’m following.

    My memory is completely shot. Yesterday I was going into the next room to tell my husband something. I completely forgot what it was before I can completely stand up from my desk. How I wish I were exaggerating for dramatic effect. I rely heavily on routines and reminders. My smartphone is a lifeline. I have so many alarms and reminders programmed in it’s ridiculous. If I had a dollar for every time I showed up for an appointment on a wrong day, I’d have a fistful of cash.

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    There’s a hidden silver lining, though. I can read a book (on a good day) or watch a movie repeatedly, and it’s new to me each time. Usually, I’ll get about three-quarters of the way through and turn to my husband to ask him if I’ve seen it before because it starts to seem familiar somehow. He finds this amusing. I prefer to watch movies at home because sitting still for two hours is very painful. It helps to be able to get up and stretch from time to time. We do have a wonderful theater with cushy recliners a couple of hours away now, so that helps.

    It’s not just nerves endings that are oversensitive. Bright lights, too much noise, fast motion, slightly rough fabrics, strong smells or flavors. Everything causes pain and distress. If someone raises their voice at me, I can’t understand what they are saying, because the sound overwhelms my senses. They start to sound like Charlie Brown’s parents. “Whaaaw whaaw whaaw.”

    Talking on the telephone is stressful. I avoid it as much as possible. My hearing is perfect. I just can’t process spoken words well anymore. Without facial expressions and non-verbal cues, I have a really hard time understanding what people are saying. It’s really embarrassing to ask people to repeat themselves, especially when I often don’t catch it the second time either.

    I much prefer communicating in writing. Then I can take as much time as I need. I’ve been working on this answer for about an hour now (and am writing this sentence after the five paragraphs below). On a good day, I can dash off an answer in ten minutes. Today is not a good day, but not so bad I’ve lost the ability to read yet. It’s still early, though.

    Fibromyalgia wreaks havoc in other ways besides pain and fatigue. Bowels and bladder are irritable and unpredictable. I make sure I know where the nearest bathroom is at all times when I have to go out. Clean panties and wipes in my purse at all times.

    I’ve lost the ability to regulate my body temperature. It feels a lot like having a fever and chills. I can be burning up and shivery at the same time. Any temperature above 75 or below 60 is debilitating. Today it’s 70 degrees here in this room I’m sitting in. I’m wearing a sweater, drinking hot tea, and using a heating pad right now, and I’m still chilled through.

    All of this is complicated by the fact that it’s an invisible disease. I look normal, and like most fibro patients, I have developed a good game face. People judge. If I let the pain show, I’m judged as a whiner. If I hide it, I’m judged as a faker when I say I can’t do something. I can sympathize with peoples’ impatience/skepticism. It does seem unbelievable if you haven’t experienced it for yourself.

    A lot of people feel I should just “suck it up and push through”. They don’t realize the amount of mental fortitude it takes to resist my own impulse to do just that. I’ve learned the hard way that the price for doing is just too high. If I “soldier on” and mop the floor today after I do the dishes and laundry, I’ll be bedridden for the next three days, and fall behind on everything. But the temptation to do so is always there. It takes a lot of discipline to pace yourself during simple activities you used to do with ease.

    The worst part isn’t the physical difficulties. It’s the loss of self-esteem, of self-confidence, of my health. I grieve for the person I used to be. Twenty years in and that loss hasn’t become any easier to accept.

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    Official Fibromyalgia Blogs

    Click here to Get the latest Chronic illness Updates

    Fibromyalgia Stores

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  • How Fibromyalgia Suffer can start Strength Training?

    How Fibromyalgia Suffer can start Strength Training?

    Exercise helps break the chronic pain cycle associated with fibromyalgia syndrome (FMS) by improving fitness and functional levels, relieving physical and emotional stress, and boosting one’s confidence and self-esteem. While you probably have heard a lot about the benefits of aerobic exercise, you may be wondering about strength training. Women at risk of osteoporosis commonly hear about including strength training activities in an exercise program.

    Should a person with fibromyalgia perform strength training activities? Is it safe? Will this type of exercise hurt you? In the following article, we will answer these commonly asked questions and describe how you can include basic strength training activities in your exercise regimen.

    First Steps

    There are three important steps to take before beginning an exercise program.

    First, let your doctor and other health care providers know about any change in what you are doing to manage your health—including exercise. While exercise has many physical, emotional, and social benefits, there may be health issues you need to address before starting an exercise program, such as unresolved foot pain or back pain. You may be directed to stay away from certain forms of exercise because of other health issues.

    Second, an exercise program is most effective when you do it consistently. Decide on what you are going to do for exercise and where you will do it. If your exercise is not enjoyable or convenient, you probably will not do it regularly. Follow a basic program, like the one at the end of this article, or get the help of a knowledgeable professional—exercise physiologist, physical therapist, doctor, nurse—to formulate your exercise program.

    Does it make sense for you to be outside or inside at this time of year? Do you like to exercise alone or with others? You can exercise at home, in a community center, or in a commercial fitness center. Once you decide what to do and where to do it, make a commitment to yourself to make time in your schedule to exercise. The more hectic your schedule, the more important it is to review your other commitments and plan your weekly exercise schedule. Consider the times of day and days of the week that works best for you.

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    Finally, anticipate that you may be a bit sore or uncomfortable at first, especially if you have not been physically active in recent months. You should not be in severe pain, however. If you experience severe pain, then you probably have done too much and started too fast. Listen to your body—learn to know the difference between your chronic fibromyalgia pain, the pain of overused muscles, and the acute pain of an injury; they are different.

    One way to help judge your level of pain when exercising is to utilize a 0-10 numerical scale with zero signifying no pain, 5 moderate pain, and 10 the worst possible pain. In general, if your pain is 1-4, exercise as you planned; if the pain rates 5-7, cut back on the amount and intensity of exercise you do that day; if your pain is an 8 or 9, don’t do your regular exercise routine, but you may still be able to perform some gentle stretching and maybe go for a short walk, and if you are experiencing pain that is a 10 it is best if you do not exercise that day.

    While fibromyalgia can be extremely painful, it is important to remember that you are not damaging your muscles and joints when you exercise appropriately. Making good judgments about how much to exercise takes time to learn, but is essential to your successful self-management. With practice, you can become your own exercise expert.

    Adding Strength Training to Your Exercise Program

    Recent research has demonstrated that strength training exercises, when done appropriately, can be safe and beneficial for individuals with FMS. Strength training exercises increase your muscle strength and can make daily activities, such as climbing stairs and carrying laundry, easier. 

    Stronger muscles use less effort to do work than weaker muscles. Some think that by using less effort, your muscles do not get as fatigued. For many years, when FMS was thought to be a disorder of the muscles, people believed that you might damage muscle if you exercised it too hard. Therefore, people with FMS were discouraged from doing strength training type exercises. Today, research demonstrates the safety and benefit of this important type of exercise for the person with FMS.

    Strength training activities can be incorporated into your exercise regimen regardless of your level of experience or fitness. The strength training part of a program ideally should include one exercise for each of the major body areas (legs, chest, shoulders, back, arms, and abdominals). Strength training exercises should be done 2-3 times per week with at least one day of rest between workouts to allow muscles time to rest and recover.

    Exercises can be performed with free weights, machines, stretchy bands, household items (e.g., soup cans), or the resistance of your own body. Exercises can use one or more of the above methods to provide resistance. There is no magic about how you provide resistance. The key is to perform the exercises correctly and regularly, so convenience should be considered when making your decision of what you will use for resistance.

    When beginning a strength-training program for fibromyalgia, you should first learn and master the proper techniques for all exercises. You can learn proper techniques from a book, an introductory session with trained health or fitness professional, or by participating in a class where an instructor will keep a watchful eye on you while you learn with others. More guidance from a knowledgeable professional usually translates into faster learning.

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    A repetition of “rep” is the performance of an exercise one time, and a “set” is a sequence of repetitions of an exercise performed without prolonged rest. The number of repetitions and sets and the amount of resistance is how strength training exercise is quantified or measured. Begin with a level of resistance that allows you to perform eight repetitions “fairly easily.”

    If you can comfortably lift the weight eight times (8 reps), it is safe to progress to 10 reps the next time you exercise. After you are comfortable with 10 reps, you can try to perform a set of 12 reps. When you can perform 12 reps of an exercise for two sessions in a row, you are ready to increase the weight/resistance slightly. When you increase the resistance, remember to reduce the number of reps to eight and repeat the process of gradually increasing the number of repetitions with the new resistance.

    There are several important keys to remember while performing strength training exercises. Always use proper exercise techniques. Avoid “guarding” sore muscles when you perform an exercise. Contracting muscles around an aching body part leads to more tension and poor posture. Poor posture puts unnecessary stress on other body areas. Exercising with good body posture and technique will work the muscles in a balanced manner and reduce the chance of injury.

    Breathing during the exercise is very important for keeping muscles relaxed, comfortable while exercising, and supplied with oxygen to do the work. To breathe properly during an exercise, inhale and exhale slowly as you perform the part of the movement that requires the greatest effort. As you return to the starting position of the movement, breathe in slowly and smoothly. An easy way to remember this is to “exhale on exertion,” and inhale on the less strenuous part of the movement. Remember, you should never hold your breath while performing an exercise.

    Speed or the pace of a movement is also extremely important to your strength training program. In most strength training exercises there are two parts to each repetition. The first is the concentric or “positive” phase. The concentric phase is when the muscle you are exercising shortens while performing the exercise movement. An example is the biceps muscle, on the front of the upper arm, when you move your hand from your thigh to your shoulder.

    The second part is the eccentric or “negative” phase of the movement where the muscle you are exercising lengthens while you return to the starting position of the exercise. The biceps muscle lengthens when the hand moves from the shoulder to the thigh. Strength training exercises should be performed to a count of two seconds for each of the concentric and eccentric parts of the exercise.

    Our work over the past several years with the SELF-study (Self-management and Exercise for Living with Fibromyalgia) has shown that shortening the eccentric phase can help decrease muscle soreness in people with FMS when beginning a strength training program.

    Strength training exercise has many health benefits for people of all ages. While people with FMS have often been discouraged from performing strength training exercises in the past, evidence today suggests that when performed appropriately, strength training can be an enjoyable and beneficial part of a balanced exercise program. As with any new type of physical activity, it is important to start and progress slowly to allow your body time to learn the exercise and safely adapt to the level of effort.

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  • How much Stressful Experience will Face by Fibromyalgia due to their Illness? Tips to face their Disease

    How much Stressful Experience will Face by Fibromyalgia due to their Illness? Tips to face their Disease

    Tips for the Warrior

    Caring for someone with CFS or FM can be a stressful experience. You may take on extra responsibilities, experience financial strain, feel frustrated and resentful at times, lose companionship, face uncertainty about the future, and experience both reduced socializing and sexual difficulties.

    Even with all the challenges brought by serious illness, there are many ways to take care of yourself. Here are nine to consider.

    Maintain Your Health

    This is the number 1 recommendation of experts on warriors. To serve your loved one well and to avoid resentment and burnout, take time to get adequate rest, to eat well, and to exercise.

    Accept Help

    When people offer to help, accept the offer and suggest specific things that they can do. If your finances allow, consider paying for help in such areas as meals, house cleaning, and transportation.

    Take Time for Yourself

    Get a respite from caregiving by spending time away from the person who is ill, for example by pursuing a hobby. Give yourself an opportunity for leisure and enjoyment, a way to recharge your batteries.

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    Educate Yourself

    Seek information about CFS or FM, especially strategies for reducing symptoms and improving quality of life. One source is the articles on our website. See the article “Educate Yourself” for a list of patient organizations, other websites, and books about the two conditions.

    Stay Connected

    Avoid isolation and reduce stress by maintaining relationships with extended family and friends. This may mean getting together regularly for exercise or outings with friends, spending time with children, or any other kind of socializing that keeps you connected with others.

    Consider Counseling

    Be sensitive to signs of stress and consider seeing a counselor if you detect them. Signs that counseling might be appropriate include feeling exhausted, depressed, or burned out, or over-reacting, such as by angry outbursts.

    Counseling can be helpful for gaining perspective on your situation or exploring communication problems. You might get help in individual sessions or in joint sessions with the person who is ill.

    Grieve Your Losses

    Just as people with CFS and FM experience many losses, so do those around them. They are deprived of part of the companionship the patient used to provide, as well as her work around the house and, in many cases, financial contribution.

    And, just as the person who is ill has lost the future she hoped for, so do you have to adjust your dreams for the future. Like the person in your life with CFS and FM, you, too, need to grieve your losses.

    Create New Shared Activities

    Serious illness may make it impossible for you to spend time with the person who is ill in the same way as before, but you can develop new shared activities to do together.

    One couple told us they took up the study of music using courses on DVD. The husband in another couple said that once he realized his wife’s new limits, they shifted from camping and hiking to dinner and a movie.

    The point is to create occasions for shared pleasure so that the relationship is strengthened and both ill and healthy members of the family don’t come to see their relationships as just about illness and deprivation.

    Seek Support from Other Warriors

    Fellow warriors can offer strength, support, inspiration, and models of successful adaptation. You might meet such people through patient support groups.

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    Fibromyalgia Contact Us Directly

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    Official Fibromyalgia Blogs

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    Fibromyalgia Stores

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