I remember when my fibro first started it was mostly just in my ribs then some in my back. Then after a long while my shoulders, and neck, and in a flair my knees and arms, which is the worst for me because I craft a lot, like almost all the time, it keeps me sane but when my arms hurt it’s hard and I hate it. Now my knees hurt all the time along with everything else, my arms only hurt sometimes still but now I am having pain in my feet all the time too. Doc did an X-ray which showed nothing, of course. So I am wondering if this is how it seams to have happened to all of you? In your opinion is it progressive? I’ve gone through most of the meds and I’m only 30. I can’t imagine it continuing to get worse and not having anything else that might help. Okay small rant over. Thanks for all your answers.
Rebecca
For me my worst pain was in my lower back, knees and feet while I was still working before I even knew I had FM. Now it seems like the pain is more in my hands, elbows, neck, and less in my legs and feet. Not sure if its because I am off my feet more now and rest when I hurt more. I hope it is not progressive. I hope if we take care of ourselves and don't overdo it we can hang on till they find a cure.
Hi Rebecca,
It's a good question and one that I mull almost daily. Although I've had fibro longer, it was diagnosed 3 years ago. Back then I could still work part time and walk some. I could also use my arms and pick things up. Three years later and I can no longer walk, although I also damaged my knees in an auto accident about a year or two ago. I can no longer work. I struggle with using my arms. Carrying groceries up 10 stairs is out. (I used to be able to carry bags and bags of them.) I have difficulty typing and taking a shower. My upper back and neck hurt now. So, YES YES YES, I think it's progressive! I Worry about ending up with an auto-immune disease, since fibro ties in with them. But we really don't know what tomorrow holds. I have talked to people who've had fibro for 30 years and they're still around. Still rational too. I guess that means there is hope for us! :-)
PS: I wanted to add that all of the old moderators seem to be gone now, all due to increased fibro problems. I don't know if that's just an anomoly or if it represents others with fibro too.
I was first diagnosed with sero negative rheumatoid arthritis. The a new dr. Took over my care (not my choice my other dr moved) Well anyway he said no such thing as sero negative RA.(mayo clinic says there is): but anyway he took me off RA meds and told me it is just fibromyalgia that if I would reduce my stress level and would swim 2 times a week I would be 50% better in a year. Well heck I think he also must believe in the easter bunny...lol. what a nut! My pain started in my right ribs..then my eyes got really dry i stopped making oily tears i was put on restasis and it got better along with RA meds. Then the pain just kept getting worse..neck, shoulder, couldn't sleep, back, hands and knees. Now I have neuropathy in my feet gabapenten has really helped...oh I forgot that I forget like everything all the time words are lost, spelling is 100 times worse...i dont think fibromyalgia will kill us but it sure does try!!!
No,yes the first couple yrs you get it of course it spreads and kind of runs its course
The the wanning starts and it diminishes and becomes much more tolerable.26Yrs for me.Been their and felt every pain,numbness,paralysis,24/7 headaches for 26yrs.suuucks. anyway No your going through the worst pain now…be good Wayne
Thanks for all the replies. I have noticed that my fibro seamed to get worse in the summer ( at least it has the last couple of years ) this could very easily be due to stress, which of course is bad for us, and my doc says to take time for myself, haha, my husband works from 6 in the morning to 6 in the evening 6 days a week and soon will be going to nights on the same schedule and I have a 4 and 5 year old at home with me all the time. I really have no sitters since my family is either working or has my brother or sisters kids. If I go anywhere so do my kids. My doc is nice and works with me. She would like me to go to cognitive therapy which I can’t do now with my kids. Thanks again everyone
JackieM,
No no no!!! If you actually do have RA, you could be injuring your joints by not getting your proper meds!! I sincerely hope that you go to another doctor and get a second opinion! These doctors who don't believe in anything scare the beejeezus out of me! I know if I were in your shoes, my little fingers would be dialing a new doctor up ASAP for an appointment.
Hugs,
Petunia
I have often worried about it being progressive, however, I have inflammatory arthritis and several other things on top of the Fibro. My pain levels go up and down all the time. My current rhuemotologist says that the heat is bad for Fibro patients and makes the pain worse. I have been told so many different things that are supposed to help and make things better, but to be honest trying not to stress out to much is the only thing I find that helps.
For those of you who suffer worse in the summer, have you been tested for lupus? If so, were you out in the sun for a few minutes prior to taking the test for lupus? Apparently it is easier to get real results from an ANA if you go outside for a bit prior to taking the test.
This is just a random thought but worth looking into.
Hi Rebecca, Good thread, thanks for starting this. My symptoms are worse now than when I was diagnosed 2 1/2 years ago. Saying that, I am also 2 1/2 years older and I know age carries its own list of aches and pains. Add in some peri menopause which shares similar symptoms with fibro and I think it is hard for me to say what the cause may be, but the symptoms that I feel are more varied, and more intense. I have been told and read in literature that it is not a progressive disease, in that I think they mean that our joints won't deteriorate like with OA or RA but I don't think that means symptoms can't get worse. I hope that makes sense, as yes, my fibro fog is getting worse too!
And when it comes to trying to reduce stress and other triggers that may impact my symptoms, I follow Lovett's lead and use humour and fun distractions. I love comedies, especially Brit Coms, and while laughing, I really don't feel my pain as much. I PVR a lot of Brit Coms. I also use my tablet a lot, to play games, and lately, my new love jigsaw puzzles. I have a hard time picking up pieces of puzzle for the traditional puzzles, so doing them digitally is a blessing. Many an hour is spent focusing on finding the next piece and less time on my pain. I hope you find some relief and I wish you the very best day.