Newly diagnosed - will I be able to exercise again?

[kait0220]

28 F, recently diagnosed with the "all tests are negative, sounds like fibromyalgia"
I don't really understand what having fibro does to my body. Just six months ago I was weightlifting in the gym like a boss. I loved it! I would feel great. Once COVID shut down the gyms - I stopped going and lost a lot of steam. Cardio exercises like running and burpees are just too hard on my heart and joints. Also I get ridiculously overheated very easily. My symptoms have been getting worse - pain, fatigue from doing simple chores. It's not just laziness because I LIKE working out. I just feel so miserable so often that it's put on the far back burner. I went swimming with my 4 year old niece this weekend and was totally wiped out. I used to be so strong and energetic and I am afraid of being too weak to do anything. It's so early in my life with fibro that I don't know what is going to happen to me.

I just want to know if anyone out there with fibro is able to lead an active life. It seems like almost everything I enjoy is so hard on me right now. And I don't know how to explain to my family or my job that sometimes I literally CAN'T drive out to see them, or work 10 hours a day. I don't even know how to explain to myself that it's okay that I've taken so much time from my healthy routine. That it's not my fault, I'm not lazy, I'm not weak. Partly just needed to vent. Thanks as always

 

[FibroKate]

Hi, Kait0220! The biggest challenge considering FM is to explain to others how this syndrome affects you and your daily routine. Since there's nothing obvious - that's why it's called an 'invisible' condition very often - it's hard to "prove" that something is really wrong. I had the same problem, I seemed to be either too anxious, lazy or a crock because I couldn't explain the simplest: most days I just CAN'T move or do a thing!
You definetely don't have to feel weird about it; it's very common and to people who choose to respond me with "But you seem fine and your tests are clear - it's on your mind" or "it'll get better - you're tired/anxious/depressed" etc. I just tell them to google about the condition and then we can discusss again. The most significant is you to understand that this syndrome affects more than your stamina or your muscles. The symptoms vary from patient to patient for several reasons, but if you read or listen to others' stories, you'll find out similarities - and differences, too.
The thing that helped me is to keep a daily log about my symptoms; this helped my doctors as well. After we ruled out every possible disease which has similar symptoms to FM, and I mean after almost 4 and sth years of neurological and other kind tests, lots of diagnoses and comparisons, I was extremely lucky to be examined by an excellent neurologist who was absolutely sure I suffer from something rheumatological rather than neurological. After some visits to rheumatologists, the diagnosis "matched" every kind of symptom I have as well as others which I couldn't connect them to the specific syndrome since I was unaware of its details.
Therefore, you need to consult a rheumatologist, list every symptom you may experience and be prepared. At first, I was in denial and I just tried to do the same things with absolute failure. I t was my fault because I hadn't dealt with the situation. After I took the right steps - for me - I managed to find a balance regarding the syndrom's everyday challenges, such as working out. I suffer from most symptoms of FM so I have to cope with them both separately and in combination. I got help from other people: physiotherapist, psychotherapist, personal trainer, neurologist, and even group therapy members, this forum members, true friends and people who may not understand exacty the kind of pain or your symptoms, but they are willing to be there for you and help you. I suggest you not try to handle it alone, on the contrary.
And as for the symptoms, yes, extreme fatigue or days when you 're too weak to do anything can match a FM profile. Whatever is going to come, it may seem unbeatable, but it's not. Personal care as well as professional opinions help a lot and the approachment to all this should be gradual and in accordance with your personality, symptoms and personal strength. Try to stay positive! I hope I helped a bit! Good luck with everything!

 

[sunkacola]

28 F, recently diagnosed with the "all tests are negative, sounds like fibromyalgia"
I don't really understand what having fibro does to my body. Just six months ago I was weightlifting in the gym like a boss. I loved it! I would feel great. Once COVID shut down the gyms - I stopped going and lost a lot of steam. Cardio exercises like running and burpees are just too hard on my heart and joints. Also I get ridiculously overheated very easily. My symptoms have been getting worse - pain, fatigue from doing simple chores. It's not just laziness because I LIKE working out. I just feel so miserable so often that it's put on the far back burner. I went swimming with my 4 year old niece this weekend and was totally wiped out. I used to be so strong and energetic and I am afraid of being too weak to do anything. It's so early in my life with fibro that I don't know what is going to happen to me.

I just want to know if anyone out there with fibro is able to lead an active life. It seems like almost everything I enjoy is so hard on me right now. And I don't know how to explain to my family or my job that sometimes I literally CAN'T drive out to see them, or work 10 hours a day. I don't even know how to explain to myself that it's okay that I've taken so much time from my healthy routine. That it's not my fault, I'm not lazy, I'm not weak. Partly just needed to vent. Thanks as always

I have fibro and lead an active life.
OK, I am not active every day, and I can't do what I was able to do ten years ago. But I can do a lot more than I thought I would be able to do when I first started dealing with this syndrome.

I, too, was a weight lifter and I *loved* working out. It was the highlight of my day a lot of the time. Now, I cannot lift weights at all and probably never will again. I have tried over and over. I would work up slowly, doing it right, but every time ended after a month or less with me in pain for a week or so unable to do anything. I was pretty depressed about it. But eventually I just gave it up.

I looked at it like: OK, those days are gone, that body is gone, and that's a bummer. But I still have my legs and arms and brain and ten fingers and toes and I can do other things. Now I concentrate on what I can do and love to do, and for me that is hiking and dancing. I don't look back; it doesn't help.

The thing I would say to you is that your symptoms may be getting worse because you have stopped moving. Start moving again, even if you have to start with 5 minutes of mild exercise and build slowly from there. Maybe try pilates, yoga, some form of exercise from YouTube videos, whatever. Don't push your body, don't be hard on yourself. But at the same time, don't just give in and give up. This is very important. Often when a person becomes unable to do something any more it's because they stopped doing it when it got a little bit harder - they gave up. Now, sometimes you have to (see above). But then, find something else that you can do. Just don't give up on yourself or on your body.

As for explaining yourself, that it a terrible road that most of us have to walk with this thing. People will not understand and some won't believe you. I have had to cut from my life the toxic relationships I had that treated me badly because they didn't believe me. But one thing: you find out who genuinely cares about you and who only likes you if you can go dancing (or whatever) with them whenever they want you to. The former is a friend, the latter you do not need.

Clean up your diet, eat very healthy foods, get some form of exercise every day and work with what you can do. Be grateful for what you have left, and hang in there. I am sorry you have to deal with this, but at least this is a place you can get support. Best of luck to ya, and keep in touch with us.

 

[alexsmum]

hi just wanted to say I enjoyed your post. I kind of gave up with excersize but your post showed me there is light at the end of the tunnel.

 

[SableLuna]

I just wanted to empathize. I used to be incredibly active. I did HIIT workouts, pushing myself to the limit. I used to walk to and from work almost every day - an hour and a half each way. I was always moving. Now, walking up one short flight of stairs or bending over to pick something up off the floor totally winds me. I do get up and move around frequently, taking short walks, mostly because if I sit for longer than a few minutes my body gets too stiff. But I can't seem to handle exerting myself in any way. Sometimes I wonder if I just pushed myself too hard in the past and exhausted my systems.

 

[sunkacola]

hi just wanted to say I enjoyed your post. I kind of gave up with excersize but your post showed me there is light at the end of the tunnel.

Thank you.

Sable Luna, I have wondered if I pushed myself too hard in the past, as well. But I don't really think that is why I have fibromyalgia. I do know that having this issue has made me learn to listen to my body and respect what it is telling me, which I did not do before. When you are weight lifting the whole concept is about "no pain no gain" and pushing yourself through whatever you feel. Now I no longer believe that is a good way to do it. It takes discipline to progress with any sport or any form of exercise, and there's a certain amount of pushing that has to be done or you don't progress. but more respect and attention should, I think, be paid to the body's needs than often is with young people who are trying to achieve a physical goal. It's really hard to learn the lesson this way, but it's given me a different relationship with my body.

 

[Melissa4pooh]

Kait0220,
I was really active up til the last 2 years. I used to run, bike, aerobics, skate, hike, horseback riding, etc. And I think one of the most frustrating thing I have experienced is the drastic drop in my ability. I, like you, have the drive, but sometimes I just can't. I have had to learn to slowly build up to being active again. I've also learned that massages after intense workouts helps immensely! But most importantly, listen to your body and workout on days you can, and drink a lot of water. And rest on days you just can't, and don't feel guilty about it. Also, when I first was diagnosed back in January, I posted on Facebook about my condition and what it meant to my life. I didn't want to have to explain myself and my situation over and over again. How some days I'm perfectly fine and can function almost normal. But I also didn't want people "judging" me because I was having a day that "I just can't." I often explain to people that even taking a shower and getting dress on a "flare up" day is monumental. Best wishes on your journey.

 

[nadia]

Hi Kait,

I made this video a while back explaining fibromyalgia in details including my relationship with working out.


I hope it can help! I went to a really good hospital that has a fibromyalgia center that helped me understand my personality and why I have a tough relationship and flare ups after working out (especially when I used to be so active!)

I suggest you have a look at it and maybe it will help answer questions.

 

[AnnieMJ]

Thank you for this. I have shared it with my newly diagnosed daughter. Great video!

Ann