Those of us with fibromyalgia have different degrees of symptoms, more or less support from friends and family, different living situations, and various job arrangements — some work at home while others leave home and go out to work. We all need to find ways that help us cope on a daily basis, especially since our symptoms can be so erratic.
I would like to share my top coping tips and would love to hear yours.
My fatigue is truly debilitating at times, so I spend a lot of time in bed. I keep a small table next to my bed where I keep the things I need daily: my meds, tissues, water, cellphone, tablet, TV remote, lip balm, a notepad, and a pen.
I make an effort to go for a 10-minute walk every day to help fight my muscle weakness and improve my mood. Because I’m in bed most of the time, I get up throughout the day just to move around. When I go shopping I use a shopping cart to lean on. It gives me more stability moving around the store.
Reading is a passion, but it’s difficult to hold a book, so I have an eReader that contains lots of books and is so much easier for me to hold. I also like books I can listen to by just closing my eyes and getting lost in hearing a book being read to me.
Coping for comfort
I am a stickler for buying clothes that are soft and have no tags. I never wear a bra unless I’m going somewhere important. They cause pain in my already tender ribs. Comfort is everything — and for that reason I wear mostly T-shirts, sweats, and very comfy jammies.
Listening to uplifting music, reading my Bible, and praying daily really help to keep me centered. When I’m too tired to think, I get lost in a TV show or a good movie. It’s important that I accept my limitations and take good care of myself. Part of that for me is knowing the best time of day to do something. For example, I shower late in the afternoon or early evening because it really wipes me out.
I don’t let other people tell me what I should be doing or not doing to get better. I choose not to let negativity in whenever I can. I also do my best to eat healthy foods, but when I’m exhausted and just grab something easy, I don’t feel guilty about it.
What are your top tips for coping?
Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.
Interesting how we gravitate to similar coping. The walk is a good idea but tough. I have not adjusted well to a sudden decline over the last three years after 30 years of relative peace with FM. Tomorrow I will meet and agree with my PCP that I am now forced to try opiates and other powerful meds, can’t stand the pain. I like your not listening to (probably wrong) advice from others. The only thing coping idea I have is thinking of switching from regular button shirts, which are now annoying and frustrating, to western style pearl snap shirts.glta
Steve, I love the idea with the shirts. We all have to do what gives us a greater quality of life. If the advice is sound, I will listen to it, otherwise I just let it go. I’m sorry to hear you need stronger meds, but it’s ok. ????
Steve, if you do go on opioids, speak to your pharmacist about when to take them. They are not like the other pain meds that you take to get “ahead of the pain.” They will work in 15 minutes. I started taking them as prescribed – every 6 hours – and after 4, started vomiting. Called my pharmacist (unfortunately we are on a first name basis and I have her number memorized,) and she told me the correct way to take them…as needed. I only take 2 per day for now. Want to make sure they will continue to work and am praying medicinal marijuana will FINALLY be available for people in pain in Florida! I’m also taking the CBD oil, but it’s too early to tell if it is helping. I was told 1-6 months. We’ll see. Good luck!
How do you get drs to listen to you??? I have been to 4 drs and er for this skin pain on my stomach…it is killing me….and I have had it for 3 months….no rash…no redness …nothing…they look at me like I have two heads….I have pscoratic arthritis…and am diabetic….im going crazy
I really like your idea about using snaps instead of buttons! Velcro might even be better for us!
How have you created multiple streams of income coming in???? Interested in how??
Marcia, it has happened over time as I add things I know I can do.
Hi, Robin. Thank you for contributing your time to this very worthy cause. I’m only 38 and was diagnosed ten years ago. Probably had it much longer but every year it seems to get worse. I’ve been a freelance writer and blogger as well for six years. It really helps to have an outlet and distraction. I wish more fibro patients would share their experiences. It really helps to hear others stories. Chronic illness effects every aspect of our lives.
Sandi, it’s my pleasure! I’ve heard that’s it’s not a progressive illness like autoimmune diseases, but I find my symptoms worsening over time as well. I sent you an email. ????
Robin, I agree with what you said about it supposedly not being a “progressive” illness. I, too, have gotten worse over the years and have just recently felt like I’ve sort of leveled off. (Perhaps the right combo of meds/physical therapy?) I find it incredibly ironic that the folks that say it isn’t progressive have probably only just recently started studying it! So, how would they know? My research shows that the medical community has documented the “symptoms” as far back as the late 1800’s. Yet Big Pharma just started producing meds for it in the last 10 or so years! So again, how the heck would “THEY” know????????????
I like to plan so documenting a week worth of activities helps me keep on track. It also teaches me to “live in the now”, so if I don’t reach my weekly goals, its okay. There’s next week. Tracking also lets me see that my days are still productive, even if the task require more time. *S*
Pamela, I love that idea! ????
Coping with fibromyalgia on a man’a point of view. I’m expecting to be the person to fix and repair daily, and work along with my wife to keep what we have in perfect shape is very hard for me. Before I was diagnosed with FM, I was involved in many organizations and was able to enjoy the great outdoors. Now I have coped with dropping all but one organization and one favorite outdoor activity of fishing. I am extremely saddened for that as people think I’m faking the whole FM thing. Even my manager does not believe I have it when I call in to ask to work from home or even sick. I cope with the everyday denial of having FM and pay for it afterwards. I have yet found my true coping device. That a true man should have with FM. Please help me!!!!
Brian, you’re right, as a man with fibro, you are in the minority. How difficult it must be to still have to provide for your family AND endure people who don’t believe you. I’m going to email you a link that I think will be helpful. Also, I know there’s at least 1 group on Facebook for men with fibromyalgia. ????
I am a nurse who has continued to work despite my pain and fatigue to provide for my family. My husband works and says he understands but I stopped working a couple of weeks ago as I hit a wall! All I get is ‘how are we going to afford everything ‘ and ‘I don’t want to go bankrupt again ‘ as if I’m not stressed and feel bad enough myself. I’m really struggling on a daily basis and can’t see things getting better!
Donna, I applaud you for working as long as you did! I don’t think it’s your husbands intent is to make you feel bad, it just sounds like he’s scared and feeling less secure financially. I would try having a conversation so that you both have a better understanding of what each is feeling
I am also male ,65, with a very high degree obtained from a university in Texas, USA. I also came down this horrible disease called by Fibromyalgia. I went through two years of very difficult time. However, having my own education in medicinal chemistry and family practice of herbal medicine, I then developed a regimen of tonics and supplements of natural origin along with dietary balance plus gentle exercises, my problems have solved by 80 % able to live normal life and a job. These natural medicines might also take out other people around the world from the caged and confused life with pains and miseries . I don’t have a website yet but could be contacted by email or skype. E.mail:[email protected]
Hi Brian! What tremendous courage it takes for you, as a man, to comment here and tell us all how hard it is for you to cope with FM. We at FibroNewsToday would encourage you to check out the links Robin Dix emailed you. Believe me, a true man, can have fibro and your masculinity is not defined by how much pain you can endure. It is defined by the courage it takes to ask for help.
Brian. You know what, I think more men have it than they would like to admit, less men go to the Dr. So in turn less are diagnosed. Just curious. How old are you and how long have you had this illness? I think my ex has it from the symptoms he’s having. I feel bad for him but it unfortunate all the years I dealt with it he didn’t believe me. I think it does run in families. Almost like Lyme disease how it can effect entire families. My mom has rheumatoid arthritis and my brother has mixed connective tissue disorder, all similar in nature.
Steve from MA: Before you try opiods (which I do use, but only when near tears in pain and husband is forcing me to take it) may I suggest calling the staff at Healthy Hemp Oil and tell them about your pain. They have numerous ways to take the CBD and can only sell CBD w trace amounts of THC. I use their Blue Label. Comes in a syringe full of thick dark goo. You push out only the amount you need and put under your tongue. You can use as little or as much and as often as you need. My rheumatologist was thrilled when I told her. A whole syringe of $60 lasts me a good month depending on pain. I am able to work, albeit and gratefully on computer from bed. Good luck. I will be praying for you. Hang in there.
Fantastic comment and encouragement Sha’ula! Thank you!
I too have had success using cannabis for pain. It has the added benefit that it doesn’t cause physical dependency like opiod medications do. I went to pain management and they put me on Fentanyl but it didn’t do anything for me but make me tired, itchy and nauseous. For me, Wellbutrin, cannabis and super hot baths give me as much pain relief as I’m going to get. The thing that keeps me tethered to the earth more than anything is my faith. I’m so grateful that God’s provision show up at my door every day. Also I’ve been blessed with an amazingly supportive husband who is very kind to me.
Thank you for the comment and encouragement! Keep your faith and continue with the hot baths!
Tim:
Yes, I too have had great success with Wellbutrin, several times have gone off to see where I was without it and it was a bear dealing with the detox and side effects. Wellbutrin has been the only Western medication that I can use with out horrible side effects, and I have tried most all of them and in different combinations of medications. I think that most of the problem is around sleep and not getting the REM sleep needed to function which causes the exhaustion. That and as we all now know our defective brain cells that scream “Pain” when there should not be that reaction. One day we will find out how to re-train the brain not over react and scream “pain”. That is why CBT (Cognitive Behavior Therapy) yoga, tai chi, self awareness meditation and deep breathing works so well with Fibies. It re-trains the brain to react to situations differently and have positive self talk and awareness. My thought is fibro may have started with all the viruses I had during childhood and young adulthood. Also, the childhood sexual abuse did not help being in a constant state of hyper-vigilance of fight, flight or freeze with disassociation of the pain and fear to survive. It one point I had a family physician that not only tested me for allergies, but did skin patch test for different viruses. He then made and gave me serum injections of the dead viruses I was most reactive. For a long time this helped, but I moved to another state and he retired. Keep up the fight and continue sharing. One day we might find a cure or at least a preventative.
I would be curious to know how many people suffered from childhood abuse, trauma, sexual abuse, narcissistic mothers, etc. You hit the head on the nail when you spoke about “fight or flight.” My body feels like it is almost always in that mode. There is a website called, “Daughters of Narcissistic Mothers.” I have one and was absolutely shocked when I went to that site. I read though all the pages and it was my mother to a tee. At the end, where it talks about health, the author says MANY daughters have developed fibromyalgia and chronic fatigue syndrome – including herself! A real eye opener…Thanks for sharing! Denise
Great reply! Let us all keep that hope that one day many of these diseases will be cured and people will be able to live pain and worry free.
I am lucky that I don’t have to spend all day in bed,but I do sleep on my schedule, not someone else’s, and make appointments late to early afternoon when I have a little more energy.I also have overwhelming fatigue much of the time. My coping skills are to make a list of 3 things I want to accomplish during the day. Sometimes I only am able to do one; sometimes none. I don’t let myself worry about it. I can only do what I can do. Thankfully my husband understands. Also I am getting further and further behind in everything with my home business and household chores and on good days really try to catch up on some of it. THIS really bothers me but I TRY to stay positive. I try to do some sort of exercise everyday; I too have to hold on to a shopping cart to shop and wear very comfortable clothing. Over the past several years I only give gift cards for birthdays and presents as shopping is too exhausting. I try not to look at the big picture but just what I can handle right now.
Wow Pamela… it sounds like you are doing quite well with coping and we are a greatly inspired by it! Keep looking at what you can handle and do what you can. 🙂
My list: Healthy Hemp Oil CBD blue label, warm salt water therapy excercises daily, a Yin yoga and a tai chi teacher, acupuncturist, chiropractor and massage therapist, and dental hygentist experienced with how to deal w Fibro, a super husband who understands, an inexpensive maid to clean house (college students have been great), 15 minutes daily sunshine, camping chair in shower and next to tub when bathing, soft Irish wool sweater and long wool socks, yes a chest next to my bed with everything I might need including small dorm refrigerator to keep cool packs for inflammation, bottles of Green Machine with protein juice smoothie by Naked (get at Target) when I can’t get up and eat, small microwave for heating up buckwheat packs and to warm Green Matcha tea from Japan (China has lead in soil) lots of water in large artic thermos, in drawers I have along with the usual suspects, ear plugs, eye mask, headphones, Zen music, Resound app on my phone, I-pod, extra socks, extra loose Soft Night clothes so when I wake up in a sweat from fever I can change clothes, fruit and protein bars, putting in under bathroom tile floor electric heat liners, high doses of all B vitamins, C, Magnesium citrate at night and Allicin Max (garlic but no bad taste), Cat’s Claw (liquid herb), theraputic grade essential oil of peppermint for headaches and drink 1 drop in water for indigestion and gas, lavender to relax and sleep, Weleda brand Arnica oil to rub on body, essential oil diffuser, epsom salt with lavender in bath with headrest on tub and wrap soaked handtowel in water and put on neck and shoulders, two pets who sense when I am in pain and come near to comfort me (soft cat and small soft dog). These are what I use to survive after 30 years. I have found Western meds to cause horrible withdrawals or side effects. Switched to totally vegan diet which stopped most of the IBS as nothing else worked, guaifinisin for sinus and sudafed when needed along with steam showers. If I think of others will add later.
Shaula, those are some great ideas and I know others will be helped by them. Thanks so much for sharing! ????????
I am really interested in the Healthy Hemp Oil;I looked at their website and was immediately unsure of what I would need or how to take it. Advice on this would be welcome. Also I really want to get off the Gabapentin due to the weight gain it has caused and want to know if the Hemp Oil really does help with the pain as the Gapapentin does. Will be interested in hearing back. Sha’ula- I am really impressed with your list and am going to try some of these things. I do some vitamins but no essential oils. Thanks!
I have discovered that the Nature Made calcium tablets go thru my body whole. In other words they do not break down in my digestion system and thus I receive no nutritional value whatsoever. I’ll be making better efforts to get my calcium from veggies and dairy products.
@Sha’ula, what essential oils do you prefer?
All of them, but mostly use Peppermint for headaches, nausea, indigestion and it has so many other issues it is good for. I keep peppermint oil (and grow peppermint) and Trader Joe’s dried and sugared ginger for nausea, it stops nausea cold. Lavender for relaxation and also for headaches.
I would like to say that even though men are in the minority for having fibro, women, like myself who had my their own successful business, good income, beautiful home, etc. find it just difficult when dealing with this bizarre illness. I have taken care of myself most of my life. It was quite humbling to have to apply and then fight, fight, fight for disability. Be happy you have a spouse who is supportive and helpful. Before fibro kicked in, I was on my second marriage. (The first was when I was very young.) After 6 years, he actually told me that he “just stopped caring about me when I started getting sick.” It showed. So I dropped 210 pounds of stress and haven’t looked back. I may not have what I had then, but I do have wonderful friends who care about me! Life is nothing but change. No one said it was going to be a success only journey! Be grateful for those who help and care and try to do what you can to help others…
Yes, I completely understand Denise. This husband is one I hand picked with Fibro in mind. I can say there are men out there that a super, but may be difficult to find who can handle dealing with the fibie’s roller coaster ups and downs. I don’t know if I was without fibro if I could do what my husband does for me. Seriously, because before I was so athletic, type A personality, all bubbling over with energy and enthusiasm, go, go, go, traveled the world and love adventure. It felt like my whole life had been ripped away due to loosing the person I used to be. I had to grieve and mourn that loss and build new and different type of dreams, and fewer and different types of relationships. It has and still is a major adjustment for me. It took many years before I found the right one that was a fit and I thank G-d daily for him. If I were you I would look for someone who has a very caring and nurturing personality who loves to cook, shop, provide and take care of people. Again I am serious. Before I gravitated to men like me, athletic, outgoing and always on the move, searching and having numerous outdoor adventures. With Fibro those traits do not do so well in a relationship with a Fibie. When I started dating again I wrote a top 10 list of traits I needed in a partner. The first one on this list was Integrity, second was personality that “loves” (not just tolerates) to tend to my needs as a Fibie, third was great sense of humor. Without humor it’s a tough and steep up hill road. Hang in there, it will be easier to handle over time.
I too was a type A personality, travelled the world, had my own business. Still am Type A, just can’t do what I used to! It has been quite humbling, to say the least. Thanks for giving me hope that there just might be a caring man out there for me!
Shaula: that is funny, handpicking a husband! But I understand too its not funny. I guess I lucked out that my husband once I got fibro truly understood, but he is an amputee and knows pain. So he is truly a good support, but lousy at handyman stuff, ect!! Still love him dearly.
What is it that the Beatles said, “Love is all we need”?
Are there any Fibromyalgia support groups in Australia that you ow about?
We have thermal mineral hot springs in NT Aus I find these really help me.
As a Newbie, I am permanently exploring online for articles that can benefit me. Thank you
My brother suggested I might like this website. He was once totally right. This put up actually made my day. You can not believe just how much time I had spent for this info! Thanks!
I’m so glad you found us!!