Is anyone else in pain 24/7?

I've read some posts here and it looks like some of you have flares. Is anyone in pain all day long? I do have good days, but not very often. I also have a entire week where all of my symptoms get pretty bad, almost intolerable. It is hard to differentiate what is Fibro pain and what is Lyme pain. I've asked this question on the Lyme board also and it seems like no one there....maybe one or two at the most....suffers with the pain all day like I do. I guess I am starting to get a little scared and worry that something else is going on.

Ditto what Karen said. I am always in pain; it just varies in intensity from day to day. I have other conditions that exacerbate it, but most of the pain is fibro related.

Hugs - Austen

CajunGrl,

Looks like you've found a lot of us with Fibro that have the 24/7 pain.  Like those above, mine also varies but I believe that it's my pain meds that keep it in check.  If i run out of them or my muscle relaxers, or god forbid both (which happened one time - very very bad day) it's not good.  I can't get out of bed any morning until I've had my meds - then I can keep the edge off until the next dose.  Then there's days like today unfortunately, that there's no way I can go to work because even on all of my meds I still feel like I got hit by a truck, am getting stabbed in every joint, and my clothes can't touch my skin....that's my flare.  I haven't had a pain free day in a few years...but the days where its at an average of 3  for the day - are like my "pain free" days so they make me happy :)  I have CFS too so sometimes i feel like I should get moving more for the Fibro, but then I get exhausted and hurt from the CFS.  I am hoping to join a clinic that hopefully has a pool treated with bromine and not chlorine (as I have vulvodynia as well and chlorine down there doesn't go very well - sorry for the TMI).  You aren't alone, I just hope you are being treated with the right combination of meds and can try to find some positive out there to keep you at least ok.  Wishing you the best...

This is a hard question to answer when you really think about it, because we're so used to pain. My body never feels normal, but I guess sometimes when I'm still (or lucky,) the pain is a 2, but it goes up quickly if I do anything at all. To paraphrase Forrest Gump, "Fibromyalgia is like a box of chocoaltes, you never know what you're gonna get!"

I agree the fatique is one of the biggest problems, it can make the pain feel 10x worse, not to mention what it can do mentally. it is a constant struggle to get up each morning and go to work, and to walk each evening. yes, I still have pain every day, but have only been on the cymbalta for a week. and my back is another problem all on its own, so it never quits hurting. don't think of excersising or stretching, find something you really enjoy and work towards that, maybe its cooking or baking something and giving it to someone who has helped you, if you like to read- get out to the library, does someone have beautiful flowers close by - go walk by them - or just walk around the block to explore your neighbors yards. Getting your mind off of the pain and fatique is 80% of the battle.

Hi Hopeful, could you please share with us the name of your new med?

Thank You

Cajun, you have to move.  I know it hurts but the more sedentary you are the worse you will be.  Four years ago I could barely move.  I would be in tears trying to get out of a chair.  My son visited me and we went to an animal park and I had to pay someone to drive me around in a golf cart because I hurt so badly.  Well, that really ticked me off!  I didn't want this to be my life so I did what I had to to get back on my feet.

 

I started stretching and then walking daily.  When I started out, I could only go four houses down and had to turn around.  But, I kept at it and walked a little further each day.  I didn't feel like doing anything because if I didn't move, I didn't hurt as much.  But, I saw where that was getting me!  I was loosing muscle tone too.  The saying, "If you don't use it you will loose it" is very true. 

 

Now, I start out the day walking my dog for 1-1 1/2 miles.  I walk a lot around the house and with shopping, too.  I have more energy and am less fatigued after a walk...usually.  My son came this past December and we went to DisneyWorld for the day.  As we were entering the park, he asked me if I wanted to get a wheelchair.  I said No.  Well, Cajun, I walked all through that huge park...Fantasyland...from 9 AM to 6 PM!  I was even able to ride the rides...including Splash Mountain with it's 55 foot drop!  What a difference four years of moving made for me!

 

By the way, don't sit in front of the computer for long periods of time.  Get up and walk around every 15 minutes or so.  As a mod, I know that the time escapes you.  I did that this winter and when I went for a massage, she could feel the difference in my legs and said the circulation wasn't as good.  So, I'm not on the computer as much now and I had a massage today and my muscles were back to "normal" for me.

 

Just start moving and try to do a little more each day to slowly build up your strength.  The pain should start to go down after a while...unless you are in a flare.  I've had bad flares and have had them last up to six months.  Not fun, but I kept on walking, even though I was limping some days.  I would just focus on the beauty around me and ignore the pain as much as possible and I would make it through the walk and give myself a pat on the back.  It can be done.

 

Sherrine

Oh, thank you so much Debbie!  Your post meant a lot to me and it sure made my day! 

Sherrine

I have really enjoyed reading all these comments on this thread! I too have pain 24/7 and was in a lot of pain to even get out of bed in the mornings- just a few weeks ago! On here, it was suggested that I keep on moving and so i did. We took a vacation to the coast for an entire week and i did a lot of walking there which felt really good! So now, back at home, I am walking in a park and pushing myself a little and feeling more flexible and fluid. I also find it very important and helpful to get up from the computer often and move around. The rice socks has done wonders for me in relaxing before bed and sleeping well. You might want to try those which I learned about on here as well! :)

Thanks Sherrine! I found out also that it helped to go to bed early and spend some extra time getting comfy and cozy. The extra sleep did wonders- I had no TV, computer, or chores to keep me up! ;) The warm sun and sand on the beach was so healing and I made a reclining chair by digging out the sand and putting a beach towel in it! lol! It even had lumbar support and a head rest! Climbing on the rocks was a little bit more challenging and I got muscles stretched that I didn't know I had! lol! The next day, I was none the worse but more energetic and ready to rule the dunes. I met some really nice people and families at the camp on my morning walks with my coffee- some that had fibro and other problems like MS and CP. The ocean air seemed to be good for them and even healing. At the end of the day, sometimes I spent half hour or 45 minutes in the hot shower which felt really nice. Then I jumped into my sleeping bag and got nice and cozy. Now, I didn't have my rice socks bc I didn't know how I would warm them up and the bed mattresses were hard foam. I thought I would feel "beat up" in the mornings but miraculously, I was not. I was rather refreshed and not in too much pain. One of the camp hosts contributed it to the sea air. Something to think about... ;)

Thanks so much everyone for replying. You have all given me great responses and suggestions. This is a great group here and I appreciate everything.