I don’t have flares, I just got this condition 7 nearly 8 years ago and I have gradually deteriorated since. My chronic fatigue improved, but I see that as different to fibromyalgia. My fibromyalgia started with weakness mainly lifting my legs, holding my back up or picking my back up from a bending position, and lifting my arms up. It progressed to really painful thighs, and the whole of my back, and after taking up swimming I ended up with really painful arms, basically my whole body was saw. The sawness has turned into pain. The pain never goes away, the only time it gets worse is when I do too much, or progressibely over years, keeping in mind that I am housebound. If I try to move furniture, or clean a large area, then I can expect far worse pain maybe for two weeks. But flares no, my increase in pain is always related to having tried to do too much. This seems to me to be different to everyone else. What do you think? barb
not sure but maybe u r having flares and they r just timed with doing to much. i know my fibro seems to flare with weather changes or sometimes illness. i know that during my flares my pain is worse than normal and i find it hard to sleep. i hope u will get more info from others
Eeyoreluver29 I have pain all the time, it never goes away, but when I do too much it gets worse. Does a flare simply mean more pain? But you make a good point that I didn’t think of earlier and that is when it’s cold the pain is greater. I think that has something to do with blood supply so that when the blood supply is constricted due to cold weather the pain increases, and equally when its warm the pain decreases. So a flare is pain?
Angelonearth. yes my thoughts exactly. I am never without pain.Yes sadly my pain has progressed each year for the last eight years. Thanks for your help in trying to work all this out. I think that in time there will be several different types of fibromyalgia, some with more weakness, others with more fatigue and so on, and I don’t think it will be called fibromyalgia.Cheers Barb
Angelonearth.I couldn’t agree more, I find it helpful to try to work out what’s happening to me particularly when everyone has the same label but they seem to have different experiences.I think it’s natural to try to work it out . When you look around there’s quite a bit of research going on, and sometimes I want to say, no that not right, but then I think well it may well be right for some people. What a condition eh? Cheers Barb
Angelonearth. It seems that when the symptoms are at that their worse that is called a flare up. I really don’t fit into this classification because my pain is only worse when I do silly things, too much. So if I called that a flare up I could avoid every flare up by not doing too much, and I don’t think thats how it is for others. They get flare ups doing their usual activity. Thanks very much for the link, I think every bit helps me clarify where I’m at. Cheers Barb
angelonearth.I have pain all the time, but it is much worse when I do too much. Cheers Barb
Angelonearth.
We are both in the same boat! There must be others like us, hence others somewhere who are asking the same questions. it is a very incapacitating condition that really is not well understood. Thanks for sharing your story with me. barb
Hi Barb,
I think that most of us are in pain all of the time. I know I am. But when I do something more strenuous, then I hurt even worse. That's a flare. Or if the weather becomes cold or rainy, I flare. It sounds like you flare when you move furniture or clean too much.
i'm sorry that you have to be in pain all of the time. It certainly is wearing. Do you have any meds that help with the pain?
Hugs,
Petunia
Thanks Petunia, I currently use tramadol, it doesn’t actually fix the pain, but when the tears come into my eyes it gives me something to take, and more often than not induces sleep so that helps. From reading all these comments on this site over the last couple of weeks I have decided to try lyrica,an anti convulsant because I noticed that a lot of folk are on it. I tried Epilum another anti convulsants some years ago but it did absolutely nothing for me. When I go to the GP tomorrow I will ask him for it. If, If it helps that would be great. Nothing has actually at any time helped the pain. I also intend to get an anti inflammatory because I have quite severe stiffness all over my body and some arthritis in my fingers. it does help to know that others are in a similar situation and I’m not alone in this world of pain. Cheers Barb
Barb, do be aware that your GP may start you on a very low dose of Lyrica, which may be of very limited help. It wasn't until my dose was increased that I started to get meaningful relief. I also use Nortryptiline, which works on pain quite well with Lyrica.
Lyrica may make you sleepy and extremely dizzy. Both do pass after a month or so. But the dizziness can be pretty extreme at first, so just be forewarned.
An anti-inflamatory is great for arthritis pain and stiffness. Just make sure you don't exceed the dosage and take it on a full stomach. If you take it on an empty stomach you'll soon find your way into an ulcer.
Good luck!
Petunia
Thanks Petunia, all good advice. I will keep your comments in mind. I’m willing to try most things but not interested if they don’t work. I usually give new meds three months and if there is no difference I stop them. I’m crossing my fingers and hope to have some relief from this pain, but nothing has worked so far.Cheers Barb
Hi Barb, I often wonder myself what constitutes a flare ? I hurt all the time, but like you if I do to much I hurt even more, so what’s to much ? I kinda know for my self, everyday is a struggle, just doing simple things. I don’t think you are that different, it seems the healthcare professionals have come up with the term flare, because they were trying to classify those who can semi-function, to those who are disabled, it’s like is your pain mild, moderate, or severe ? I think they just decided that if you can’t function, and your pain is more than mild… Well there you have it your in a flare ! I personally think there way off… Just my own thought… Fibro is progressive and there are different degrees of its disabling qualities. A flare can be used as a term that means your pain is worse, but that’s kinda crazy, bec if we do to much we have more pain… I do think that goes for everyone… The question is how much is considered to much… Is it to much if we just need to function and do our activities of daily living, can we hurt more if we just get up, shower, get dressed, eat, maybe do our dishes, feet the pets… Is that to much ?
Not sure if this makes sense, it is a frustrating topic, I often argue with my dr. About
There is still so much for the researchers& dr. To learn , but for now I guess we have to be glad they are taking notice to this horrific condition .
Hugs& blessings
Dee. Thanks for sharing that, it is good for me to know that it’s not just me,and that others feel this way too. I guess that’s the beauty of this group. The health providers only know from books and from their patients, and at. The moment it’s all a work in progress. This condition is so different to other conditions, it just doesn’t follow the normal rules,but we have each other, Thanks again for your contribution. Barb.