I used to be very active. I managed fast food restaurants and was on my feet running around ragged for hours on end. For fun, I loved to dance the night away to my favorite band.
My weight began to slowly creep up in my early 20s, even with my active lifestyle. I could lose weight, but I had to work out constantly to do so. As soon as I stopped exercising, I’d gain it all back, plus some extra bonus pounds for good measure.
I was never one to ease into anything, exercise included. I always ended up getting sick and would have to give it up for a while. I didn’t know I had fibro until much later on, so I didn’t understand what was going on.
I got to the point where I hurt too much to attempt exercise. A simple walk was too much. I gave up on losing weight and getting fit. Why should I bother if all I’m going to do is pay a heavy price later?
After my fibro diagnosis I tried different treatments to help ease my symptoms, starting with acupuncture, and massage therapy. I began a journey that I am on to this day. The purpose of this journey is to feel better and to get back to being active again, even if it is at a level just above couch potato. Being realistic, I know I will never have the energy or stamina I had in my late teens, and early 20s. I’ve come to grips with the fact that I will never dance the night away again — but a couple songs would be nice.
Last week I made another stop on my journey: Physical therapy. I’ve had therapy before for various injuries and surgeries, but never for fibro. I had high hopes going into my first appointment.
One of the first questions the therapist asked was “What do you believe helps fibromyalgia?” I had no idea what he was getting at, but I should have. Exercise was the response was he looking for.
Are you trying to kill me? I was floored, not because I didn’t believe he said it, but because he actually believed it! I’ve heard that before, but my personal experience had shown it not to be true. I’ve been told countless times that all I have to do is work through it, and I’ll be fine. As far as I was concerned, if you make that statement, you know nothing about fibromyalgia.
My therapist was adamant. I must exercise and deal with the pain in order to feel better. Is this a risk I want to take? How much suffering will I have to endure before I feel better? What if I never feel better and end up doing more harm than good?
After our talk, he had me exercise in a heated pool. To my surprise, there was an underwater treadmill, which is my favorite way to exercise. I walked for about 10 minutes. There wasn’t any pain during, and no flare after. Exercising underwater is amazing!
When I asked how often I should do this, his said as often as possible. I would love to, but living more than 50 miles from the wellness center makes it tough. I go to this particular wellness center because it is a free benefit from my husband’s employer. My therapist said he will design an exercise plan for me to work on at home on the days I can’t make it to the center.
Now I had a huge decision to make. I’ve seen amazing results from less than 10 chiropractic adjustments. Could exercising bring me even more relief?
After days of soul-searching, I’ve decided to proceed with the exercise program. I have to do this while I still can. I’m not getting any younger, and if I wait a few years, I know I will be in worse shape than I am now.
Only time will tell if I made the right decision. I’ve always loved challenges and now I have a new one. I’d love to write more, but I have a date with a heated pool!
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That’s amazing that your going back to exercise of any kind!! I have fought severe FM since the early 90’s. Due to server illnesses and lots of weight gain and almost suffocating due to really badly damaged lungs I had to have a gastric bypass in 2012.
…. I’ve lost 160 pounds since then and have had some difficulties. Last year I found out that I had a buldged out L5 disk that was laying on my L4 – L1. I also have severe perephial neuropathy due to no range of motion being done when I died in 2009 and was in a drug induced coma for 2 months.
….Last October I had a pain implant put onto my spine, which is a product of St Jude’s Medical. Now I have no more pain and I’m off of ALL of my opioid medications, praise GOD!!
…. I realize this isn’t for everyone, but this comment may help someone who could use the information!!
Susan, Thank you so much for sharing your story. While I am sorry to hear of your past suffering, I am so happy to hear you are no longer in pain and are off the meds! I’ve never heard of that implant before.
Exercise is not for everyone and I would strongly encourage anyone thinking of beginning any exercise program to consult with their physician or trusted professional. I’ve learned the hard way that I can’t do this without the guidance of a physical therapist. I am very thankful for the one I have. He seems very knowledgeable when it comes to pain management and FM. He said I can do only light walking or bike riding for 10 to 15 minutes a day. He also gave me some stretches to do. I think I can handle it but it will be hard and painful at first.
I wish you all the best and thank you again for sharing your story. Even though that implant may not be for everyone, it may mean a chance for a new life for someone.
Warm water therapy was very beneficial and it felt amazing, too. I would actually lie about how many reps I had left, say I had much more to do than I did… just so I could stay in the pool longer….
As for physical therapy on dry land… I had so many physical therapists who did not help. I would look around and see people getting heat treatments with heating pads, or getting massaged. Never me, though! I questioned it, but my therapist responded more like a drill sergeant than a health care provider. I was a bit taken aback, but I continued to do the program… with not much advancement after a point. Funny thing, the therapist was known locally by the doctors as the person to send fibro patients to… It was the first time they gave me the name of someone to ask for. She gave me exercises but no empathy and definitely no massage, no heating pads.
I got a new physical therapist when I again got sent for physical therapy. She was different. She did massage and heat treatment and was so compassionate. I worked hard for her… but it was because I could! My muscles were looser, thanks to the massage and heat. I realized that I was trying to exercise tight muscles before…
I asked her over and over why she gave me heat and massage when other therapistside in the past did not. She finally told.me that she was taught that fibromyalgia patients would become “addicted to massage” and not want to exercise. Originally, I had been sent to her for non fibro issues (pelvic floor therapy) but my fibro doctor also started sending scripts and was thrilled I was seeing a physical therapist.
I got the most benefit from her. And maybe I changed her perception of fibro patients. But I think she treats people as individuals anyhow. I think that she is less inclined to make generalizations despite what she had been taught.
When I got arthritis in my hips, I found walking to actually relieve the stiffness and pain. It is a favorite exercise now. I have developed a weekly routine. I also got a gym membership where they have hydromassage beds (you lay on them fully clothed, thankfully).
I had gotten a sleep apnea diagnosis and my fibro seems to be in (remission?). I believe the sleep apnea fed the fibro beast… My doc said they don’t know what causes fibro and so he can’t officially say it but he unofficially believes that my fibro was sleep-deprivation induced. I still have lots of osteoarthritis to contend with though. That pain is localized and pretty predictable. My fibro pain that has been absent was a roaming, unpredictable pain that felt differENT than I experience now.
For me, movement helps my fibromyalgia, as the commercial says. I think of it not so much as “exercise” but more as “getting my juices flowing.”
The key with physical therapy for FMS is to choose a clinic that treats more people with chronic illness or age-related issues, rather than a place that sees more injury or surgery recovery patients.
If you have a specific pain that physical therapy can help, like a hip pain or neck pain, a surgery-/injury-focused therapist can make a huge difference. I have certainly experienced great pain relief from that kind of PT.
At other times, after a series of flares and illnesses, I became just generally “de-habilitated,” as many of us FMS sufferers can. When I went back for PT, my original therapist seemed bored with me. I changed to a clinic that sees more elderly and seriously ill patients, and, voila!, the therapists were so much more compassionate and encouraging. I would joke with them about the “fake” exercises they would give me, but those little exercises helped me overcome stasis and get moving again.
Also, I think that studies of FMS patients do not support heat, cold or massage as effective across the board. As a result, some insurance just doesn’t pay for more extensive adjunctive therapy. It’s not that we get “addicted” to massage. We just can’t prove with clinical studies that it makes a significant difference in the course of the illness. I think the results are really hard to quantify, scientifically, so the insurers won’t cover the costs. The answer is to offer to pay out-of-pocket when you need massage. Also, keep advocating for large, well-designed research studies.
I so enjoyed reading everyone’s comments and sharing their experiences! Your article and insight came at the perfect time, Carrie. God knows what we need to hear. Anyway, at this time, I am gaining weight rapidly (13-14 lbs this past year). However, I was at my lowest weight last year and failed to maintain for very long to get the new ‘set point’ established. So in reality, I am 3-5 lbs over what my highest weight and yes, I guess acceptable would be. Still….I am aging and realize I have been careless in my eating habits once again 🙁 I loved the comment about ‘being just above a couch potato’. I’ve arrived–especially in the aftermath of winter. I have had FM since 1996 after a whiplash; OA shortly thereafter (everywhere); Hashimoto’s Disease; Dupuytren’s Disease; Fuch’s Dystrophy; Celiac Disease; and now Osteoporosis (especially my spine). I also have Season Affective Disorder (depression) and Celiac Disease. Due to childhood sexual abuse, I developed an eating disorder (binge eating). That still ebbs and flows. I also ‘sometimes’ deal with PTSD. If it wouldn’t be for the Lord’s grace, I would not be alive today. But since I am and desire set a good example and be the best I can be, I seek to do better. I was an avid dancer and walker; use a glider and foot bike; plus do some 3 song dancing now and floor exercises. However, it’s not enough….. My feet have prolapsed so I can no longer walk as far as I would like at a time. I feel frustrated but not defeated. I believe I will do better with the full bloom of Spring and consistency of warmth once again. Sometimes, what is good to do for OA, FM doesn’t like! I was doing well with yoga movements until my one leg rebelled big time. Spine issues and extreme tailbone issues are what are upfront now and working on getting some further help. I know that going back to water therapy will be where I am headed, too. It used to be cost effective and right around the corner from me. I went 3x a week. I’m gathering info for my options and will need to make a decision by Fall. Walking poles are a God-send, too. I would say that chiropractic care is not for me and would not be advised any longer anyway. However, if only insurance would pay for acupuncture and massage as I did receive some help. Perhaps I can find a PT who offers both and has ways to bill. My last one–no. It costs out-of-pocket. I just appreciated this timely article and all the comments. Have a lovely day.
I do honestly believe that my aqua therapy has saved my life. I am only physically able to go two times a week. I learned pretty fast that three days was too much. Hang in there!!