I have been taking Lyrica and doing the recommended exercise. But still have extreme fatigue and pain in most afternoons. Is there anything that helps.or could I be doing something different?
I have tried everything, I can’t exercise or else I am in a lot of pain. I take Lyrica but I’m still exhausted not matter what. I’m starting to accept that this is just the way it’s going to be and that doesn’t leave a person in a very good place. I’m sorry I couldn’t be of help but I wanted to let you know you’re not alone!
Also, I dread 1:00pm because that is when my body and brain are like nope. So i understand the afternoons. My rheumatologist just told me to try not to use up all my energy in the morning, try to save some for the afternoon. i don’t ever have any anyway so that also isn’t much help
Have you tried removing sugar and simple carbs from your diet?
Try brown rice instead of white, gluten free pasta instead of wheat - bread & potatoes, just avoid. and if you see any benefit, try getting very strict. fruit, (meat if you eat it) and veg… if that hopes but there is still pain, cut out EVERYTHING else that has ANY sugar, even down to ketchup, mayo, etc… 100% cocoa chocolate is also a good antioxidant.
That plus exercise seems to keep me ok for the most part. Working at a computer doesn’t help but since I took 15 mins of every hour to move, stretch, get air - it helps and there is also Wim Hoff breathing techniques that help: https://www.youtube.com/watch?v=tybOi4hjZFQ
Everything he offers is free and it works. All the best
Hi Thirene - I feel your extreme exhaustion most of the time. I have been taking Lyrica for 4 years and it alone was not able to touch my pain level. So my Dr and I have been changing up what “cocktail” of medications helps more so in addition to my Lyrica, I am also taking Duloxitine, Morphine and just recently we added a anti-depressant as well. I have some better days and I have some really bad days with all of this in my system. It is a funny thing about Fibromyalgia; each person has their own “recipe” that works for them. I would not say you are doing anything wrong you just have got your “recipe” down pat yet. I wish you the best in your journey with Fibro and hope there is good news on the horizon of new treatment or better yet a cure! All the Best to you
ElaineVT49, you are lucky to have a Dr. that actually cares and tries to help you. I’ve been seeing the same Rheumatologist for over 2 years and he’s never once check my blood. In the beginning we tried Gabapentin, it worked for 2 days, I felt like me again, since I haven’t had a good day. He switched me to Lyrica, I don’t think it does anything but my husband explained what his perspective was and he thought that the Lyrica helped the flareups not be so bad. I think all of them are really bad so I am not really able to see these types of things. I had scheduled an appt for a second opinion with a new rheumatologist in February, they couldn’t get me in until May 10 but I figured it was worth the wait. Then the Pandemic hit and I had to cancel. I’m also 2 years in remission for thyroid cancer so I get the double whammy of no energy and fatigue.
Hello Thiriene as one of the moderators for the site Welcome as other members stated it is finding what is right for you I feel the first lesson to learn with Fibro is how to pace yourself and remember if you cannot manage something one day there is always another.Hope you get some ease soon take care Annette
Thank you for the kind reminder that you are all here with me. There are so e days I just want to curl up in a ball and cry. Other days I have a positive attitude and remind myself I am bot alone.
I tried various meds at the beginning of this (not so) fun voyage and nothing seemed to work for me. Finding a doctor that actually cares has been an ongoing challenge for me. With that being the case, it’s difficult to try anything as nobody is around to monitor how or if it’s working.
I have mostly just tailored my life around pain and brain limitations. By the afternoon I don’t even want to try and think any more. I used to believe I wasn’t having any thinking problems but that gets me in trouble with work because I will make mistakes and not even be aware.
Anyway, welcome to the group! Take care of you <3
Hi It nice to hear that people experience the same problems as myself. Fatigue is awful and I agree is worse for some reason after lunch. I am not working at the minute because of the virus but have to really stop myself falling asleep. I live in the UK which it is not really talked about much here, people don’t understand as its an invisable condition.
thanks for sharing what you have, it makes me feel I am not alone x
I personally didn’t have any luck with the Lyrica; in fact it lowered my blood pressure to the point I’d almost faint going from sit or stoop to stand, and I experienced swelling of feet and hands. BUT: I find that afternoons are typically worse anyway. In fact, the last 4 or 5 afternoons in a row have been tough.
I pay attention to these patterns and to me anyway, it feels like there is a direct correlation between the barometer moving up or down prior to weather events. Here in Ct were having some rapid warm ups and severe thunderstorms) I started making this connection about 6 years ago. I notice also the same weather related affect on the places where I have arthritis.
Certainly there are other factors that seem to trigger flare ups. High stress for sure.
While I cannot do much about the weather, just knowing WHY -when I’m minding my own biz and doing the things I’m supposed to do- pain and fatigue will seemingly ramp up out of nowhere. To the best of my ability I heed the message and try to get home to relax, do my stretching exercise or meditate. Sometimes… and even better treatment (for me, anyway) is to get to the forest for a little while… walk slowly, bird watch, animal watch, just breathe in the strength and grace of the big old trees.
Stuff like that… for me… better than any meds they’ve got on offer.
Good luck!! Remember to be GENTLE WITH YOURSELF during flare ups. Go within, listen to your body.
I definitely have less energy in the afternoon so I take a short nap around noon which helps me to get through the rest of the afternoon. I might even need another nap around 5pm. I keep them to less than 30 minutes but they really help keep the pain down.
I also take Lyrica, Effexor and Low Dose Naltrexone which help me combat the pain.
Like others have said, each of us Fibro patients need to find what works best for us as our bodies are so different.
Hi Thiriene! I’m sorry you’re having such rough afternoons. I didn’t seem to have any success with any of the ‘fibro drugs’. That’s not to say that you won’t; we all respond differently to meds. Most of these meds just made me feel more tired than usual. One thing that my rheumatologist told me at the very beginning (1995) was to take a very good multivitamin. My gynecologist actually recommended that I take a prenatal one, so that’s what I’m doing now. You don’t have to look for the most expensive one either. The other thing he stressed that I take was magnesium with malic acid. I take FibroResponse that I purchase through Amazon. I’ve taken it off and on over the years, and the one thing I’ve noticed is that if I take it regularly, my pain is indeed less. It’s not something that gives immediate relief; it takes time. The other thing that helps me is a muscle relaxer. Since our sleep patterns are interrupted, we don’t get the to the restorative sleep cycle that allows our muscles to fully relax. I take a 1/2 or full tablet at night. Other than Ibuprofen/ Tylenol, this is really the only thing I take for any pain. I don’t take muscle relaxers during the day; it makes me drag too much. Although, if I’m in a big flare with a lot of pain, I will take a 1/2 during the day and just rest.
You mentioned exercises. The ONLY exercise that makes me feel better is water exercise. If you can find a place with warm water, it really helps. Stretch and stretch some more. Start out by just walking and gradually work your way up to doing more. Stretch afterwards. On those bad days, soak in a tub and stretch as much as possible.
Our bodies respond to things differently- medication wise and exercise wise. If you try something and it doesn’t work, don’t get discouraged. Try something a little easier and different. Be patient with your body.
I’ve written this as if you’re new. If you’re not, I apologize for sharing so much. I’d rather share too much than not enough. Know you have a community of friends that understand and are willing to help anyway we can!
Living in Montana, I have definitely started to make the connection between bad days and the weather. Lately the rapidly changing weather has been hell. Thank you for the advice and support.
Thank you for the advice. I will have to try a short nap and see if that helps. I am still all new to this. I have dealt with severe chronic migraines and depression for the last 20 years but this fibromyalgia is a whole new problem. It feels like I just can’t get a break at times.
Hi @Thiriene and everyone else,
Fibromyalgia is so tricky isn’t it? What works for one person doesn’t always work for the next. Can be extremely frustrating. We can’t give up hoping that there is something for each of us out there that may help. I tried Gabapentin and that was short-lived for me. I’ve been on Lyrica for YEARS but seeing what others have said collectively about their symptoms of being on it makes me wonder so my next appointment I will chat with my Rheumatologist. Mornings are horrible for me. Afternoons and evenings are my happiest. Anything after 11pm and my body is like nope. We all sit when we are in pain and maybe turn into a couch potato and we all know it’s a bad idea lol. For me I have to put some music in my ears and just walk to the end of my dead end street and back which is only maybe 1,500 steps. Maybe I will do some stretches. I don’t always feel like doing anything but I know if I want to feel a little better I have to do some exercise because doing nothing just makes it worse.
COVID doesn’t help are situation at all because we are confined to the house more and lack of movement makes the fibro flare. It causes the depression and I know I had some depression pre-Covid so it’s been a challenge. We can’t give up. It sounds easy to say but I of all people know how hard it is. I am always here for anyone. Sometimes naps work for me.
@Thiriene you know what causes me to get migraines? My fibromyalgia tenses up my neck so bad the pain radiates up my brain stem and causes a headache. I had one yesterday for hours. Do you get the tense neck before the migraine? If so, maybe try some stretches of the neck to help. I know it’s frustrating but something out there has to work.
Stay healthy everyone!
I completely understand your frustration! In fact, despite having this crummy condition for over 20 years now; I STILL will find myself surprised by a flare up, be completely thrown by it, confused, thinking, “ what is WRONG with me???” And shortly thereafter…” Oh yeah… that’s right. Fibro flare.” And in those moments I feel resentful because you’re sailing along, doing all the things you know you should, the things that help; yet seemingly out of the blue- BAM! I get knocked down, precisely at a time when I don’t HAVE TIME to be derailed by widespread pain and fatigue.
It can feel so unfair.
But more and more; in recent years, and thanks to the practice of meditation, I’m able to just be aware of these feelings, accept them, vs. making matters worse by resistance, anger or frustration. And of course, I can always stop by here and share with other good people, if only to be reminded that I am not alone.
I hope today will be a GOOD day, for you and all the Fibro Warriors our there.