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Living with Fibromyalgia: What Helps Me

  [ 208 votes ]   [ 13 Comments ]
By Kathy Gamble, RN • www.ProHealth.com • January 8, 2014


Living with Fibromyalgia: What Helps Me. Image Copyright (c) 123RF Stock Photos
Image Copyright (c) 123RF Stock Photos

Reprinted with the kind permission of CFIDS & Fibromyalgia Self-Help.

Editor's Note: Kathy Gamble, a fibromyalgia patient from Florida and graduate of the CFIDS/Fibromyalgia Self-Help course, works full-time as a nurse.

When I was diagnosed with fibromyalgia, it felt like the last straw in my world coming apart. My divorce had been final the month before, and the year had already been filled with other emotional traumas. While I was grateful that the diagnosis explained the aches and the fatigue I had experienced for several months, having a chronic illness felt like one more loss.

My doctor reviewed with me a short list of options for treatment of fibromyalgia that included medications as well as other treatments such as heat, massage and stretching. He also advised staying as active as possible and suggested something I found amusing: "Eliminate unnecessary stress in your life."

I was taking only over-the-counter pain medications and did not want to start more medications yet. I preferred to see how I could manage on my own first. I was still working full-time as a nurse and I rarely missed work due to my symptoms. Most days I did okay, so I thought I would just continue on as I always had. I functioned at 75 on the CFS & Fibromyalgia Rating Scale.

Looking for Answers

However, in my second year with fibromyalgia, my health declined. I would come home from work and collapse in bed, unable and unwilling to move. Each morning brought another struggle to get out of bed, and I would drag through work. This daily grind of dragging myself out of bed, struggling through the day and then collapsing when I got home did not seem to be much of a life. I was too exhausted to do anything else that had been helpful to me before - all I wanted to do was rest!

But I knew I couldn't keep on like this, so I started to look for more answers. The thought that there might be other ways to manage this condition motivated me to look for more information on fibromyalgia. Usually if one is ready to learn, the teachers appear and I found this to be true for me in this case.

One teacher was a book by Stacie L. Bigelow titled Fibromyalgia: Simple Relief Through Movement. The author compared the muscles of a person with fibromyalgia to wet concrete. She stated that if muscles aren't moved frequently, they can stiffen and set, just like real concrete does. She explained how movement can assist with feeling better from the pain of fibromyalgia.

I found this book to be extraordinarily helpful. It distinguished between "movement" and "activity" on the one hand and "exercise". I learned that I would feel worse if I stayed in one position for too long. I began to pay attention to how long I was sitting in a meeting, working at a computer, or even lying down and resting. I found that a change in position, moving around, or walking briefly, meant less soreness and stiffness.

Self-Help and Guaifenesin

Shortly after reading the book, I started exploring the About.com section on Chronic Fatigue Syndrome and fibromyalgia. This is where I found out about the CFIDS Self-Help course, now called the CFIDS & Fibromyalgia Self-Help course. The course was described as a "blending of Cognitive Behavioral Therapy with group support and principles of self-management". The description was appealing to me, because it seemed consistent with what I was gradually learning: that I was the best manager of my condition and could learn what was helpful and what was harmful to me. I signed up.

I found in the class that there were other people like me across the US and in other countries. Plus, there seemed to be hope, as specific behaviors were identified that could help to manage the symptoms. The course textbook alone would have been a benefit, but to have a group that worked through the chapters together was even better.

I also continued to explore the CFS/FMS section of About.com. It was here that I first read about the guaifenesin protocol, and people who claimed wonderful responses to this treatment. I checked out a linked website: www.fibromyalgiatreatment.com . I was intrigued, so I ordered the source book, What Your Doctor May Not Tell You About Fibromyalgia, by Dr. Paul St. Amand.

I started the guaifenesin protocol on my own, as I am a nurse and since I had taken guaifenesin previously for coughs. After only a few days, I noticed that I had some energy again. My energy kept improving for the first month or so, and I didn't seem to have any of the expected worsening symptoms. But then I experienced the first of several "reversal cycles," in which my symptoms worsened and I felt as bad as before starting the treatment. But these have faded over time and I credit guaifenesin with helping to improve my quality of life.

What Works for Me

In the three years since being diagnosed with fibromyalgia, I have encountered various treatments, activities, and learning experiences. I do have to admit that I really wanted something to "cure" my fibromyalgia. I wanted to get rid of this condition, like taking an antibiotic for an infection.

I know now there is no single panacea for treating this condition. But I have discovered ways of being and coping that have worked for me in managing my health with fibromyalgia. Here is what I have learned so far, what I have found helps me: 

  • Resting - I rest when I need it, and also when I think I don't need it. When I listen to my body, it tells me when I need to rest. I do much better when I listen and respond appropriately than when I ignore what I am trying to tell myself. I had to learn to rest, as I was used to using my time "productively." I had to learn to stop and rest, and use the self-help course's definition of rest: lying down with eyes closed in a quiet environment. Being on the phone or watching TV while lying down did not qualify as rest.

  • Sleeping well at night - My outlook on life improves dramatically when I have had a good night's sleep. In contrast, if I am awake all night or even part of the night, the next day is difficult. To help me sleep better, I had to quit staying up late, eliminate stressful evening activities (like being on the phone), and identify what could help me get a good night's sleep. This includes going to bed by 10 p.m., taking 20 to 30 minutes for reading or prayer, and using medications, as described in the next section.

  • Taking medication as needed - Besides the daily Guaifenesin, I also take Ibuprofen (Advil, Motrin) during the day as needed, and a dose of Naproxen (Aleve) at night. I also have a prescription for a muscle relaxant that I take only at night which usually helps me with sleep. Sometimes I will add in an Excedrin PM tablet to help with sleep.

  • Using low heat - Either a heating pad or an electric blanket, depending on how much and where I ache. If I turn the heat up past low, I start to feel worse. A warm bath also helps!

  • Avoiding certain foods - I read the Sugarbusters book, The Zone, and the dietary guidelines in the book on guaifenesin. While I don't adhere to all their principles, I do feel better when I keep to the guidelines than when I don't, particularly in avoiding foods with white sugar.

  • Moving/activity - I feel better if I take "walk breaks" at work or have some sort of change in position if I have been sitting for more than 30 minutes. As mentioned earlier, I learned this from reading Stacie Bigelow's book. Mild stretching in the mornings or in the evenings also helps to decrease some of the aches and soreness, particularly in my lower back.

  • Being aware of how I feel - Denying my pain and not paying attention to myself and how I feel can lead to my feeling worse, so I have learned to adjust and do what helps me. At the same time, it doesn't help me to ruminate on how bad I feel, because then I feel worse and notice the pain more.

  • Limiting social activities and having a quiet home life - Being around a lot of people is hard on me, and I have that situation every day at work. So when I get home, I usually let the answering machine take the calls, and I keep to myself with just me and my children. It helps me to be at home in quiet surroundings and to be peaceful.

  • Planning for work - It helps me to have some control over my work hours. Having to be at work very early or staying late is hard on me but manageable one or two times a week, as long as I plan for how I will make up for it on other days. Also, I have learned that I am more effective if I set a limited number of priorities for each day. Otherwise, the details can overwhelm me.

  • Reframing - I don't have control over what happens in my day, but I am working on determining how I will react to what happens. Sometimes that means choosing not to react or not to respond. For example, I get a lot of emails at work that contain new assignments or requests for information. Some are rather demanding. If I responded immediately to every one of them, I would spend time and energy on things that may be better handled another way. Now I choose whether to respond immediately or answer later when I have had an opportunity to think it through or talk with others first. Sometimes I choose not to answer at all, and that has helped me on several occasions. I have either followed up with a phone or a conversation in person to explain. These strategies have often kept me from reacting negatively to uninvited demands.

  • Scheduling in recovery time - By scheduling planned time to rest, I can help defray some of the excesses as they come up. For example, if I have to stay late at work one day, then I may leave early the following day. Likewise, when I have company during holidays, I set aside days before or after when I can have time by myself to rest. By planning for and scheduling my needed recovery time in advance, I am more likely to stick to it. This strategy helps me decrease additional pain or flares from overdoing.

  • Seeking help from outside sources - When life becomes too much for me, I seek help from outside sources. I have participated in some online and in-person 12 step groups, and I entered counseling. Both have been extraordinarily helpful. Also, allowing and requesting help from others has been helpful. Sometimes this has resulted in positive development for others, as well as decreasing my burden tremendously.

  • Praying/meditation - I have found that particularly in times of increased symptoms, simply to be quiet and reflect or pray can have a very calming effect.

  • Scheduling massages - It may be painful at the time, but I usually feel better afterwards.

  • Utilizing aromatherapy - Particularly lavender and some of the citrus scents, either in candles that I burn or in lotions.

  • Taking the self-help follow-up courses and participating in the alumni group - I participate in two groups offered to graduates of the CFIDS & Fibromyalgia Self-Help class: followup courses and an alumni group. The followup courses focus on helping people reach short-term goals. Despite knowing what I need to do to manage fibromyalgia, putting it into practice is not always easy. The followup courses have been one of the best opportunities for putting knowledge into practice through making weekly targets. Even when I don't meet my targets, I learn more about myself and what I can do to manage this condition. The alumni group provides an opportunity for ongoing support plus discussion of topics related to living with chronic illness. We all continue to learn from each other through our responses. We also can keep up with one another through the monthly "check-ins" with our responses.

  • Making a NOT TO DO list - I pickup up this wonderful idea for me from one of the other articles on this site! It helped to know what things I consciously wanted to avoid.  

 Conclusion

Over all, my quality of life has improved dramatically using the strategies I've described. I rate myself currently at 90 on the CFS & Fibromyalgia Rating Scale. I am not back to "normal," but I've learned that that is OK. I don't want to be as driven as I was before getting fibromyalgia.

I have a clearer understanding now of my boundaries and I do well as long as I stay inside them. It took some time, but I finally learned that I have to respect and honor my body, and listen to the messages it gives me. The messages are to slow down, to learn to "be" and not just "do," and to focus on what is really important. 



Please Discuss This Article:   Post a Comment 

I'm sorry....
Posted by: scottyojai
Jan 16, 2014
I can't believe Prohealth still has no idea what fibro/cfs is all about. This article has nothing to offer, does not cover the fact that Fibro/cfs is far more serious than this womans problems. She works full time? Impossible. Treats her problem with over the counter meds? Impossible, and dangerous. Articles like this only serve to trivialize the absolute horror and disability of this illness. No wonder the public has such a wrong opinion of this disease. I wish the author of the article well, but she does not have the illness that my wife and I have had for over 25 years. Please get serious and print stories about the extreme disability, the agony, the pain, the cancers and heart disease, the loss of careers, the divorce....i could go on and on but the point is that this illness is far worse than what this woman suffers.
Reply Reply

 
Re: I'm Sorry
Posted by: LonewolfLakota
Jan 27, 2014
I'm so with you. I've had this terrible disease for over 20yrs myself. It has slowly destroyed my life. I have lost friends, family, my career and my hope to ever get back what I had. I believe this disease is a lot like Leukemia. It has remission times as well as chronic times. The longer you have it the worse and less remission times you get. I believe it is a progressive disease and affects different people in different ways. When people that don't have it as severely as others, talk like it is so easy to deal with, makes it very disenchanting for people who are just fighting to keep going. My former partner killed herself because she could no longer stand the fight of trying to keep the life that Fibro takes away. Do you realize you can no longer just get life insurance if you are diagnosed with Fibro due to the high suicide rate. This is a TERRIBLE disease for people that get it severely! And that needs to be respected by those that are lucky enough to not get it so badly. I respect those that have it easier than I do fighting it, but hearing how great it is you are able to work and all just makes me feel worse since I have lost the work I did and just fight every day to function. I understand that you are just trying to help, but sometimes it can hurt more than help those of us that have it so severely. Do I have an answer as to how to communicate to us that are suffering so badly? No I don't, that's the problem, we haven't gotten together and figured that out.

 


What
Posted by: annmc
Jan 16, 2014
I cannot believe this lady. Her fibromyalgia is a walk in the woods on a sunny day. The terrible pain and other problems I have going through are the real thing. Going to pain drs and ctrs today to get pain medication to keep me able to function at all is getting more difficult every day. The government does not want doctors to prescribe pain meds that they have been using for over 30 to 40 years. Get alternative pain relief and I would be the first in line if it really got rid of the intense pain of screaming on the inside and wanting to rip out my entire nerve center whatever is causing all the misery. Plus put out info that helps us. Ms Sunshine is just a daydream for someone. Not me.
Reply Reply

Comment on last two entries
Posted by: 24/painsenior
Jan 16, 2014
Just wanted to say a heartfelt "AMEN" to the last two posts. I can definitely identify. I can hardly walk without fear of falling, have pain literally everywhere in my body, am losing my sense of balance, can hardly get out of bed in the morning, and the doctor doesn't want to give me anything else that would even begin to help. I am depressed, despondent, have just about given up hope of receiving any sort of help. So, I must say "Amen" to the last two entries in this section. I understand what you speak of and am glad you posted how "you felt". Thanks.
Reply Reply

Potential dangerous combination of overcounter drugs
Posted by: pwick
Jan 17, 2014
Kathy Gamble needs to do some research on the drugs she takes. Regular use of and combining Naproxen,Ibuprofen and Excedrin is a potential disaster waiting to happen.
Reply Reply

Levels of Fibromyalgia and Chronic Fatigue
Posted by: Dollyonline
Jan 17, 2014
While I agree that she should not be taking most of those medications as they really are not good for you, I find that those of you who have written with the disbelief that she could still work etc. with Fibromyalgia need to do a little more research.
I have suffered with Fibromyalgia since the early 80's and also have Chronic Fatigue. I worked with handicapped children for 22 years since being diagnosed. I deteriorated slowly due to watching what I was involved in, what I ate, how I slept, stress levels etc. etc. You all know what we each had to go through to try and feel better. The specialists I saw who believed that Fibromyalgia was in fact what I had, told me that those with Fibromyalgia did not all suffer the same and that I could find that I could continue to work as long as I didn't over do it. With the understanding of my boss I was able to continue working. I retired at the age of 62, as I could no longer do my job without being in extreme pain in my back. During the years I worked, I was told I did the job of a healthy 20 year old.
I know some of you would not be able to do the things that some people with Fibromyalgia do but the symptoms of your condition are not the same as everyone else with Fibromyalgia. I am now where you are at as I'm not able to work and my ability to put in a days work at home are few and far between. So you see, if you understand that there are levels of illness it will help you understand why some people can continue to work where others can't. I have also invested in a variety of supplements which help me tremendously. One of the ones that I can't do without is MSM. I also have upped my Vit. D3 to 4000 iu. There is so much the doctors don't know with regards to what you should take and you will find you have to do research on your own. Find out what others take that help them (natural supplements). Regular doctors will prescribe drugs which really aren't good for anyone to take but that is all that they know about. Hopefully in the future, all doctors will take courses in Natural Medicine and cut back on prescribing prescription drugs.
Talk to a Naturopath about supplements that could help you. Not all supplements help everyone as our bodies are different and react differently but they will know what has helped other people. Hopefully one day they will find out what the cause is and find a cure. Peace be with you all.
Reply Reply

all are different & treatment needs to be multi-faceted
Posted by: serenebeth
Jan 17, 2014
I agree with the previous post that people with FM &/or CFS (I happen to have both) all suffer in various ways & at various levels of severity. We even tend to differ ourselves individually over time.

In addition, our own treatment plan must include more than just pain medication: That is simply covering up one symptom. There are ways we can help ourselves feel better from so many different angles, & it all takes trial & error, for the most part. We can improve our diets, our movement, our rest/pacing & sleep hygiene. We can further our education & knowledge about our condition(s) through reading & networking. We can try alternative therapies such as massage, cranio-sacral, yoga, acupuncture, supplements, cognitive behavioral therapy or just plain counseling, to name a few of the more commonly successful ones. (Remember, what is helpful now may change over time, so stay in tune with your body!)

All of these strategies fall on us patients --as far as the responsibility to initiate, follow through, & adjust. More importantly, we're responsible for the cost. Maybe that is why several do not pursue some therapies. Perhaps someday people with our diagnoses will be allowed to have the variety of services required to treat our conditions covered by our health insurance. For now, it is up to each of us. So for now, try to complain less & instead, start figuring out what you CAN do that helps. You are investing in your quality of life.
Reply Reply

What Helps Me Article
Posted by: Faithful1
Jan 17, 2014
I was also initially a bit surprised at the "abilities" of the author to work full-time, especially as a nurse; however, as a couple of other posters stated, everyone is different, and levels of disability follow a broad range.

Often people with Fibromyalgia and or CF may also have other underlying health conditions, as I found out I also have Sjogrens Syndrome, which Fibro and CF can be an offshoot of that.

People also of course have different levels of tolerance. I knew I was miserable, but did not know why and had myself convinced it was "in my head".

The author may have a very high tolerance, or she may not be as advanced as some of the concerned posters. Regardless, I found much of her information to be helpful and encouraging. At least we have resources to look at whereas when Fibro first started being diagnosed it was seen as a "psychological disorder". Thank goodness we have medical basis now that it is indeed a physiological condition.

Everyone take care.
Reply Reply

Hard to believe, but true
Posted by: Emmasma
Jan 19, 2014
I know there are a lot of people out there in terrible pain and disability due to their fibro. Thirteen years ago, I was one of them. However, the strategies the author describes in this article CAN manage fibromyalgia. I will say, though, that nothing was possible before I read and followed the protocol outlined by Dr. St. Amand. Guaifenisen has saved my life, plain and simple. I will say, however, that if the author is using lotions with lavender and other oils in them, she is not following the protocol.

There is nothing dreamy or far-fetched about the information in this article. It IS possible to have fibro and work full-time. It's possible to do a lot of things if you find the right treatment. And for many of us, that is guaifenisen. Please read What Your Doctor May Not Tell You About Fibromyalgia by Dr St. Amand and Claudia Marek. I had plenty of doubts 13 years ago when I first read it, but I figured, what have I got to lose? I'm very glad I did.
Reply Reply

Not heard
Posted by: Barneyoo7
Jan 19, 2014
I have fibromyalgia and also was in denial about my ability n future. First diagnosis I though the dr, were crazy but the illness caught up with me after pursuing my BA degree n some master cause I stop retaining new information n old one to. There goes my goal to being a nurse when I'm a patient full time. The pain is excruciating cover it up how ever you want but at the end of the day your alone crying dwelling in agony. This illness is tricky, one has remission on body part for a day , minutes, month who knows but it travels like pin ball machine where it hit it hurts, can't be touch and memory diminish.. Medication can helps some but not completely it get to the point depression, anxiety and panic attack are accompany by Just trying to endure the pain like being in trauma but you are not hurt, but in pain. Stress is the main factor n no one can like without multitasking,thinking and moving in life. I can go on with this but yes for most of us with fibromyalgia is different for most of if accompany with another disease because then doctor have something to treat than just fibromyalgia can be challenging like me. I have many symptom and they are hard to treat when it a ghost disease that no one believe n can do much but, medication after meducation.
Reply Reply

Blue Days?
Posted by: JuliusCaesare
Feb 3, 2014
I went to the doctor today and a new nurse was imputing info to the new system so I was like a new patient. Q do you have days where you feel blue- A. More like deep purple Q do you ever have days of depression. A. I have depression as a side effect of my disease. Q Do you ever have moments of loosing thought or process of thought and how often, A- Yes my brain will have a word but my mouth can't comprehend it so I stutter around giving the impression of being drunk and my family finally finishes my sentence, thankfully. Q Do you have periods of memory loss. A. Yes the coffee pot. I couldn't remember if I turned it off, so fam bought me a Keurrig. Q Have you fallen in the last three months A. Yes, Q. How often A. Often Q. what do you do to eliminate falls. A. Eventually I hit the ground and that brings an end to it. Q. Really do you get a trigger that you are about to fall. A. Sometimes. I notice I am shaky inside and stumble off balance like I am intoxicated. Q on a scale from 1-10 was is your pain level. A. Resting pain level is about a 5. Active pain level 8-9 like grocery shopping longer than 30. And Residual pain in three days after shopping, trying to straighten the house and doctor visit I will be down for the count for at minimum 2-3 days. Q. Are you able to do your own house work A. No Q. Do you need help with your daily living ie mild cleaning, bathing, dressing, etc. A. Yes that would be a miracle. Q. Do you receive help and why or why not A. I am a disabled Respiratory Therapist that now gets SSI. I do not have any money for extras. Q. Do you ever feel so depressed or sad that you could hurt yourself or others or think of death as options. A. Yes- today actually. My septic tank is backed up, my oven stopped working, one burner on my stove stopped also, my laptop crashed so this one is a loaner because this is my outside life. There are days I do not even step outside my front door. I chipped my tooth chewing gum and a sweet little dog walked up to me while sitting outside and pissed on the blanket I was wrapped up in. And all that happened from Friday to Saturday. So yeah I think I am in pain, I have no money, my kitchen is falling apart and I have poop in my bathtub. I think I qualify. SSSSooo obviously you can tell I have had this disease that does progress for 21 years and articles like this leave my give a darn busted. I say do a re write in 5 years and see if you the writer agree with your on article.
Reply Reply

Replying to this article
Posted by: amymack
Feb 8, 2014
I agree with the other replies to this post. This woman makes it sound like fibromyalgia is easy to deal with. I do a lot of things in this article but I haven't been able to work for over 10 years. But maybe she is fortunate to have a workplace that is understanding. But taking PM meds and muscle relaxers together is NOT a good idea. And the more I do the more pain I have. Sometimes it can take days, even weeks to get over having a good day or a stressful event. Fibromyalgia has completely stopped me from scheduling anything in advance. All it takes for me to have a flare up is a change in weather, especially hot, humid weather or extreme temperatures. I have also learned that pushing yourself only leads to more pain and more down time. I have to force myself sometimes to get some rest, whether I can get to sleep or not. But I will admit that when I first got fibromyalgia it wasn't as bad as it is now. But I have lost a lot of family and friend relationships, am completely broke and praying everyday for my SSI to get started. I think she will realize how wrong she is when the fibro develops into the later stages, if she lives through mixing OTC drugs with muscle relaxers, that is.
Reply Reply

I agree with her way of living with fibro
Posted by: rhettaedgar
Feb 18, 2014
I have had fibro for years. Since the 90's. I always used ibuprofen and saw my chiro. I do not like taking the drugs that turn me into a zombie. I have pain so bad that I feel like I am going to die. I am also allergic to most meds so that I have to wear a medic alert bracelet. I also come from a family that is very heavy into substance abuse and suicide. I am not going there. What does work for me is the ibuprofen or I will alernate with tylenol, robaxin as a muscle relaxer. I make myself get up and move. I don't get out much but I do have to make it to my appts. and I do have to get groceries. I haven't worked in 3 years and am awaiting my disability hearing. I live in Maine and the weather can be brutal. But I still make myself get up and even if it is walking around my house, I do it. I will sit for a bit then I am walking around again. Having a massage when I can afford it, attempting yoga for fibro helps. Also my sacrum refuses to stay in place. I learned how to put it in myself through PT. I use a heating pad and have a heated mattress pad. What she says is true. If I have the heated mattress pad on too high, I do not sleep. I also found that taking magnesium malate helps with achy muscles. It also helps you to sleep if you take it before bed. I have started mixing tumeric into my meals but one has to mix pepper with it for it to work against inflammation. I prefer to treat this holistically. I am 60 and find it hard to get around like I used to but if I need a cane, so what. I refuse to let this take my life away. I may have to do things differently and slower but I do what I have to do. My washer and dryer is down cellar. I may have to take each step at a time and crawl back up using my hands like a child but I am moving. And with the moving about, I do feel better. I think we have to find what works for us and to be brave enough to push on. I can only walk on my treadmill for 3 minutes and 23 seconds. I am hopeful to someday walk 5 minutes then 10 minutes , etc. Otherwise I can sit on my rump, letting my arteries clog up and feeling depressed. My father died from ALS. I cannot say this won't get me but until I die, I am going to live.
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