Once again, fibromyalgia — or more specifically, the symptom known as myofascial pain syndrome — defeated me in a hard-fought battle. Acutely painful muscle spasms (think emergency room visit-worthy pain) in my upper back have been part of my life for more years than I care to remember. Occasionally, I speculate why these episodes occur — severe fatigue, repetitive motion, prolonged stress, etc. More often, they appear randomly — and suddenly. Their presence has ruined so many occasions that I think of it (and fibromyalgia in general) as the cancellation disease.
During the two months leading up to Christmas, these episodes occurred much more frequently and more painfully than ever before. Recognizing a full-blown flare in process, I did all the things my pain management specialists recommended. I spent days attached to a TENS unit; applied heat, ice, and lidocaine patches; stretched; had massages and acupuncture. I consulted with my neurologist, my physiatrist, my general practitioner, my psychotherapist, and a spiritual adviser — even resorting to increasing and changing my narcotic pain medication. Nothing worked. By Christmas week, the spasms were occurring every three to four days. I had no choice but to cancel travel plans to be with my family for Christmas.
Travel is a challenge for people with fibromyalgia, even under the best of circumstances. Holiday conditions add to that challenge. The decision to cancel was made easier for me when those conditions reached a ridiculous level. With extra security precautions in place for the Christmas season, Los Angeles International Airport announced a requirement to be at the airport four hours prior to all departing flights. No doubt, this spelled inconvenience for all of the million-plus travelers heading home for the holiday from the West Coast’s busiest airport. However, for me, in the midst of a major fibro flare, it spelled impossibility. The four-hour functional day that is normal for me would likely have been extended to at least nine hours or more — with no place to lie down if needed.
Fibro fog also played an important role in my decision to cancel. Inevitable fatigue would have been accompanied by the inability to think clearly or to make decisions. Accommodating likely changes and delays brought about by unusually large crowds, heavy air traffic, or weather conditions would have been difficult, to say the least. Add that to unpredictable muscle spasms and there were just too many factors over which I had no control. So, I disappointed myself and my family and spent another holiday without them.
Disappointed? Yes. But, did I make the best decision for me? Absolutely. I could not have risked a sudden episode of pain of this magnitude on my journey or during my stay in someone else’s home.
I’m unhappy about my situation. These muscle spasms have plagued me for decades. They and IBS-D are the most life-altering of all the fibromyalgia symptoms I endure today. The good old days for me were when pain and fatigue were my worst problems. But, this doesn’t mean I’m giving up. I see an acupuncturist regularly. I continue to walk, and I stretch the affected muscle group daily. I fill my life with friends and laughter to provide much-needed distractions as much as possible. I try to focus more on the good times I manage to have rather than on times I need to cancel.
I search magazines and websites for potential therapies. I try everything new that’s clinically proven — and occasionally things that are not. Although intolerable side effects have prevented me from taking any of the drugs currently available for treating fibromyalgia, I look forward to the next one being approved. That might be the one that works for me! In the meantime, I focus on living the best life possible.
Please, continue to visit this column each week in Fibromyalgia News Today. I look forward to writing one that’s titled, “I’ve Been Cured!” For the sake of my readers, as well as for myself, I hope this happens very soon.
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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.
Dear Christine
Thank you for writing the above article. I find there are so many different symptoms with fibromyalgia and this is the first one I’ve found that refers to the difficulties travelling and needing to lie down. My husband doesn’t drive, so this year will be the first where we can’t go on holiday, atall. Five years ago I was able to drive to our usual place in Cornwall, from Shoreham-by- Sea, then only as far as Wareham in Dorset. Last year, we had to make it just a short hop along the coast to Selsey for a week, and even that was too much for me. So, sadly we are confined to our house most of the time now which just adds to the depression.
Sue
As soon as I started on Tramadol my horrific pain went away. I take it twice a day. Maybe it’s not for everyone but may be good to talk about with your doctor.
Christine-I cried when I read your recent article because I thought I was the only one who suffered with myofascial pain as the primary agony in the fibromyalgia complex. For SO many years I tried and tried to figure out what I “did” to make my muscles cramp, spasm and “lock up” and I never could figure it out-It moves from muscle group to muscle group but for me, mostly in my series of buttock muscles-glutes, pirisformis etc. I also have multiple chemical sensitivities and it seems there is nothing to help. Your article made me feel more at peace with my constant wonder of it all. I’m so sorry that you suffer as well, but you have made at least one person feel that she has company in her daily struggles. The best to you.
When I have localized active trigger points especially in back and neck I use Salonpas small 2.56×1.56 patches. These are amazing. Do not shower or do anything to open your pores prior to application as they are strong. Unfortunately, this particular type is being discontinued. I can only pray the newer ones work as well.
My husband and I were married in 1999 and in 2000 I hurt my lower back shampooing carpets. Nothing has been the same since.
Passing up telling my story of doctors. My stepson became a father a few years back, they live in Texas, so my husband and I got on a plane and flew to Texas for a week to see our first grandchild. We were not in flight very long and the changes in altitude affected my whole body. Most of my pain is in my legs, but this trip my pain increased and affected my back and legs the most. I spent the whole week in bed and barely ate anything. No more plane trips.
Thank you Christine for your accurate and thoughtful article. I am trying to accept my many limitations but it has always been a struggle. I’m 25 years into this (I had just turned 29 – woke up from a very bad car accident with this). I am trying to accept and manage this as a single woman (never married in great part due to this disease). I too await your “There’s a cure for fibromyalgia!” article.
i can totally relate to your daily lifestyle and you’re right it is a cancellation disease. I’ve just learned not to make plans especially in January. I started taking magnesium throughout the day from 3000 mg show up to 5 and it has helped with my muscle spasms a lot not sure if you’ve tried this but I thought I would just make a suggestion as there is a lot of documentation on magnesium now and it is definitely something that people with fibromyalgia lock in their bodies hope this is helpful.
I use CBD lotion and CBD gummies irratically because no one really knows dosage and how person is going to react. It is very expensive to experiment. My big thing is to go out and walk my dogs, biggest fear is I cannot walk. I cannot take chemicals either. It seems no matter what I take it doesnt work so keep on moving.
I have had fibro with Myofascial Pain Syndrome for over 30 years. to say it has changed my life is an understatement. I have struggled to work for all those years, always using up all my sick time and occasionally going out on Short Term Disability for the issues. I finally am no longer working and had hoped my symptoms would improve. Alas, they have not. I do not travel at all anymore as I am miserable. Mostly due to not sleeping well. It is a daily struggle to not get super depressed. Like someone said previously I can’t take most of the medications recommended as I can’t tolerate them. I am remaining hopeful that science is on the edge of a breakthrough with this disease. Reading that others have these same issues is a minor comfort in that I wish I were reading about them telling me something else other than how fibro has changed there lives.
Hi, Darleen
I’m sorry you’ve suffered as I have. But it is very comforting to me to know that I’m not alone. I’ve recently had a great deal of success with physical therapy, and I now apply the new Salonpas Lidocaine patches at the first sign of muscle tightening. Although not a total cure, I think they’ve saved me some bouts of agony. Keep fighting. You know that there are ups and downs with this awful illness. You just have to make it to the next “up”.
Thank thank thank you for talking about myofascial pain syndrome. There is not a square inch of my body that doesn’t have one or more trigger points. Docs go blank when you say MPS to them. The only people who seem to know anything about it are PTs. I have long suspected that FM and MPS are related. I think some day, probably in a science fiction future, researchers will find out that FM is really a rubric for multiple conditions with different etiologies.
Very good article. I too suffer from Fibro, myofascial pain, Rheumatoid and Osteo Arthritis. I have pain every day. The best way I can describe the pain is, bad day pain, good day pain but never a day without pain. I am blessed with a PT who is very skilled at the treatment of all. I use to tell people that when I got a message it felt like Rice Crispies. It would snap, crackle and pop! Hugs to you.