Depending on how severe our fibromyalgia (FM) symptoms are, and how many other physical issues we’re dealing with, we pay a high personal price. By that, I mean this illness is a very demanding task master that keeps us from doing things we used to enjoy.
The pain of sitting too long keeps me from taking long car rides. It’s been over five years since I was able to make the seven-hour drive to see my mom and other siblings. I worry that when my mom passes, I won’t be able to make it to her funeral. My fatigue, in particular, keeps me from enjoying vacations of any kind.
Some of you may have grandchildren who you’d like to play with and take on outings. (I do not have any grandchildren yet.) If they’re young, you can get away with reading stories and playing board games. As they get older, it becomes a challenge to find things they will enjoy and that you are able to do — thanks to the limitations forced on us by FM. (If this includes you, please share how you deal with this challenge in your own life.)
My son is getting married in a couple of months, and I worry that my FM will prevent me from being able to dance with him, sit through the ceremony and reception, etc., without needing to lay down. It’s a dilemma for sure. I don’t want to be a disappointment to him, or his beautiful bride to be.
Gone for me are the days of sitting through a concert or a movie. Of course, one of those theaters with uber-comfy chairs that serve food might entice me to give it a go. I’ve had tailbone pain for years, and it’s exacerbated by sitting for too long. My form of entertainment these days tend to be Netflix, Hulu, and Amazon Prime.
Then there’s the job issue. FM has kept me from working in the medical field, which was my dream job. The question becomes: “Should you work full-time, part-time, quit, file for disability, or what?” I guess all that depends not only on your FM symptoms, but your age and the type of profession you’re in.
I have a good friend, Christy, who recently moved across the country with her husband to take a full-time job as a nurse after spending the previous year or so in bed. I’m so proud of her, because I know this is not easy for her with FM. I have another friend, Kelly, who had to leave her real estate job of 17 years because of her illness. She is now helping others with chronic illness to go from coping with their diagnosis to working from home. Both of these ladies have my utmost respect. My FM keeps me home most of the time, so I make use of that time working from bed.
I don’t know about you, but I struggle with lengthy phone conversations. Don’t get me wrong, I love to talk on the phone, but the fatigue just wears me out. Conversations always initially energize me — do they do that for you? For me, it seems that emails and text messages are the easiest ways to communicate. I’m thankful for caller ID, because if it’s someone I know who is chatty, and I’m not up for a conversation, I can call back when I’m able to. I need to watch my energy and not overdo it.
I would love to hear your story and ways you cope with your FM. It may help someone else to hear about it, too.
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.
HI Fibro Friends,
I have Fibro a Primary Immune Deffiency called Common Variable Immune deffiency Sjogrens and RA. Being in pain and exhausted all the time is the norm. After spending 4 years in bed I decided to take control of the illness instead of allowing it to control my life. THIS IS NOT EASY. I have two beautiful grandchildren and I am not willing to allow this illness to rob me of my joy. I get up and out of bed almost every day. It is hard so I compromise now. I usually stay in bed until around 11:00. No TV or its harder to get motivated. I get up and get dressed and move around. Take short walks or go shopping. Moving helps thenstiffness and pain and helps my energy. I also see a wonder therapist once a month to keep my depression from illness in check. It helps to have a friend to talk to and be real since it is so hard to have real friends. I have my grand minds spend the night every other friday and this helps me have something to look forward to. Hang in there one day at a time. Hugs to all that suffer from this baffaling Desiese. Oh and by the way, we have an SUV so when we travel, I put a soft mattress in the. Ack and sleep!!
I have had Fibromyalgia, RA, Heart Disease, Interstitial Cystitis, and a host of other problems to go along with all these for 25+ years. There is not a day that I’m without pain and sometimes just getting up is hard to do. With the certain guidelines for decreasing everyone’s meds now I have to depend on my wheelchair if I go grocery shopping or have to walk for some distance. Before I was able once in awhile to do things with my family but now that’s not the case as it has made my pain worse so I’m unable to do much of anything!
Terry, I know it’s so hard when pain keeps you from normal activities ? I would love to have you in our Facebook group if your interested: In Spite Of My Illness
Yes, I would love to join your group. How do I join? It would help knowing there are more people in the same boat that won’t judge how we feel.
Thank you!
Just click on the link
I was exactly like you. Fifteen years ago I started Dr. ST
Amand’s protocol which reverses fibromyalgia. Fifteen years layer at age 69 I can now do the majority of the things I want to do. I have my life back.
Sharon that’s awesome!!
Wow, I thought that I was alone having Fibromyalgia pain when I sit. Mine are the trigger points just under the buttocks. It feels like you are sitting on a sunburn 24/7. The trigger point injections( 3) never worked for me, the pain returned when the Lidocane wore off after 3 hours. The only time the pain relinquishes is when I walk for 1.5 miles with my dogs. It is hard to get to sleep and I take sleep meds. Sometimes I take a Percocet but only to help me sleep, it lasts 4 hours. My daughter lives 4 hours away and I would have to stop after two hours to walk a bit. Now we have a Tahoe with comfy heated seats that help and I am able to drive the 4 hours but I am stiff and sore afterwards.
Dave, you are certainly not alone. I can’t even sit for 45 minutes in a car without the tailbone pain kicking in. Keep walking those dogs ?
I described my buttock pain like having a blister the size of a dinner plate
Before reversing on Dr. Paul St
Amand’s protocol 15 years..I was wheelchair bound, couldn’t lift either arm,constant migraines I had every pain imaginable. So thankful for my mobility now. Of course now I have arthritis, but I just did a 25 minute walk ao I am happy.
I was diagnosed with Fibro back in ’98..the fog was really bad, with the pain, and the repercussions for being co-dependant got me…when I learned to tell people “NO” they then said I was just lazy! Somehow I had a reprieve in 2004 and was able to work (after giving up my house, yard, etc and moving to an apartment). I was able to work for years with a few bouts of being exhausted.
In 2013 I was injured on the job and the fibro reared its nasty head once more. What I thought was gone for good, reminded me that it was still there. This winter has been super hard on me. Snow is fine, but the rain brings pain.
I also have osteoarthritis and have to take methylated B12 for a genetic problem.
I find most of the relief I get now comes from “Tapping.” It’s worth a try..I suggest you look it up.
I also take methylated B12. For some reason our body doesn’t seem to want to absorb what we get through our diet alone. I am familiar with tapping and I’m glad you’re finding some relief!
Hi Robin. I love this article. I agree. Fibro absolutely has a way of controlling our lives. Plans have to be made carefully. Sometimes we can’t follow through with plans due to symptoms and flares. Work and the ability to earn money becomes greatly affected and therefore, quality of life. It’s a trickle down effect that causes Fibromyalgia to quite literally dictate our lives and how we live day to day. It’s sad. I really hope any reseachers or doctors reading this hear our cries for help. More needs to be done about this illness. More money needs to set aside for research, testing even creating a medication that can really help to manage symptoms. I’ve tried so many meds and find a little relief here and there but it would be nice to have a better medication that would actually treat this illness rather than mask symptoms.
Sandra, I completely agree!!