Newbie....am I having a constant flare???

There should come a day when you feel a lot better than you do now but I doubt that you will ever feel like your old self again if you have fibro. I have had fibro for decades and have had a full and enjoyable life in spite of this illness but I haven't been without pain since I developed fibro. So, I never got back to my old self but that was still fine. I could have a lot worse wrong with me and I'm thankful that I have gotten in control of the pain. I'm sure you will too. You are In the process of finding out what will help you get control over this illness. Once you do that, you will learn how to work around fibro to do the things you want to do.

Sherrine

Are you limping with your knee? If so you could be throwing your back out of wack from walking that way.
Has the doctor looked at your back? Not all pain is fibro related.

Oh, you will feel better. I've had flares last months...never thought they would end...but they did. Right now I'm in a really good period and only have to take the ibuprofen, Tylenol, and muscle relaxer two times a day. That's half of what I have had to take. So good days will be coming.

Joy brought up a good point. If you are favoring one knee, your gait and how you carry yourself will be different. This puts stress on other muscles so this could be why your back and neck hurt more.

The best advice I can give is to get a Bed Buddy. You can find these at Walgreen's, Bed, Bath and Beyond and other places. You pop them in the microwave and they give off moist heat that feels wonderful. Also, don't overdo with that knee. It sounds like it hasn't totally healed yet. Feel better!

Sherrine

I second the bed buddies recommendation! I have a basket in my living room for my collection: I have the shoulder wrap, back wrap with a strap, large joint wraps (these are thin so they are great to heat and then put one under each hip when I sit at the computer!), small joint wraps, booties and mittens! I mostly use the shoulder and back ones, but it's great to be able to put heat wherever I need it lol.

I also agree with what AnnaBananna said - it seems like we go through the stages of grief, over and over again! Sometimes I feel like I'm not at all who I used to be, and the reality is that I'm not. Constant pain inevitably changes you, because you have to alter your choices in just about everything. At least that's my experience. Then other times I feel like I'm "normal" and "not as bad" as others I read about online. I just said to my husband this morning that I dread the future when I'll be in really bad shape - he looked at me really strange and told me that I already am lol.

It's funny because I think we start to accept and adjust our definition of normal, but others around us don't because everything is the same for them. Physically at least, they stay the same. I've seen my husband change somewhat through all this too, and just like with me, not all the changes are negative. There's a really great intimacy that can develop when two people battle daily with something they can't control.

I still consider myself to be happy and semi-productive, though I'm painfully aware sometimes of the things I can't do anymore. I remind myself to look around every day and be aware of the blessings in my life.

I have noticed for me that my cycle looks like this:

-Anger (when I get worse for some reason, or come up against something I can't do)
-Depression - usually short for me, because being depressed makes me…
-Angrier! which spurs me to
-Seeking remedies, where I research, drive my PMD crazy, and fine tune my game plan for managing my health, then
-Acceptance, where I coast along ignoring what I can, following all my routines…

I feel like I spend literally half my waking hours doing something to alleviate my symptoms, but I think that's only true when I'm in my seeking phase. That's where I am right now because I just got three new things dx'd, so actually think I have one foot in "Ticked off to the extreme" and "Seeking".

I hope that you can find the things that work for you, and that your doctors will be effective in treating you!

Tryying_hard, my heart goes out to you! Learning to live with fibro is a process. It takes time to accept that it isn't going anywhere. There is the need to grieve the loss of our good health.

I found it isn't good to keep all the emotions bottled up. Finding the positives through the negatives is difficult when we are feeling pain emotionally and physically. It does take practice and support of others...that is why this forum is so valuable. There are many understanding and caring people here. I've found inspiration here and it has helped me become a stronger individual.

We can have a good life but we have to believe we can. At some point you stop obsessing how awful it is and try to make each day the best you can. You learn tricks to distract your pain and find what does help. We are alll so different and different things work better for others. Know we are here for you.

Having a number of chronic conditions, I'm often asked...Which is the worst? Truthfully, they are all bad!!!
Pain hurts, no matter what the condition and you have to learn to live with it all.

Fibromites have an extra challenge because their symptoms do not show up on blood work or x-rays and have a difficult time having symptoms validated by others. The only positive to fibro is it does not cause inflammation or damage to the joints, muscles or tissue. Fibro pain can be horrible though and members here have heard me describe it as bone crushing at times.

We all want to feel validated and know others understand. I believe your husband is trying to validate your pain. He has lived with it (not fibro) but pain hurts regardless the source. Being open and honest with him with your feelings. Having someone who is supportive at home is a great asset.

What you are going through is normal. It does take time. I believe now that fibro and my other conditions has made me more appreciative for family and friends. No longer do I take things for granted. Time taught me an attitude of gratitude makes me focus on all the good things in my life. Life can be good :)

Wishing you all the best in the New Year. Continue to post...we care!

hugs, Robin

Trying_hard,

I remember feeling the way you do - when I couldn't sit for more than a minute, when going to the bathroom was agony - it was before and right after my spine surgery. Sherrine mentioned to you in another thread the possibility of your having Sacroilitis. I also wonder about disc problems. Have you been thoroughly checked out by a doctor? (It just sounds to me like more than Fibro.) 

You said you can't sit on the floor....I can't, either. Since I had a disc rupture in my lower back, if I try to squat down too far, my legs just give out and I end up on my butt....not exactly great for the spine, I'm sure...and the only way I can put my pants and socks on is with a reacher. I actually don't know how I'd function without that thing - I call it my "Reacher Creature!"

Btw, the disc ruptured while I was turning over in bed  and now, when I roll over, I still hold that spot in the Sciatic Nerve where the pieces of disc lodged and caused so much pain and nerve damage, some of which I still have almost 2 years later.  Getting a chicken out of the oven?  Never!  I have to ask my family to get everything out of the oven or fridge if it weighs anything at all.  And, like you,  I hate it! 

I also have to ask strangers to put things in my grocery cart and open heavy doors for me at places like Starbucks.  It's not that I'm too weak, it's that doing them will cause LOTS of pain, in my whole left side, that won't ease up for days and days.  Is that the case with you?

I also think you should have the option of taking some kind of pain meds, considering your pain is so extreme.  It's exhausting, it wears you down....no wonder you're angry....especially because you're not sleeping well. Sometimes we need a little help, and there's nothing wrong with that.  Do you have the option of changing doctors, to one who would be more open-minded?  You have to have some quality of life.

Keep us posted!

Debbie

Hi again
Yes I have had my back checked, X-rays in fact of all over my body lol, and it comes up with zilch. I feel like such a hypo but I just have to keep pushing or Id really be a mess.
Being in a small country town changing doctors is difficult but when i next see him and i dont feel he's helping me, i will go to another town.
I am also on effexor dfor anxiety and have just read severe muscle and joint pain is common. Bingo...even if it isn't the case with me I am going to ask to change meds to at least eliminate the possibility. What do you think? Worth a shot? Ive never been told about this side effect but it seems a lot of people are suffering.
I know I have fibre but I do feel something else is going on!

No Debbie it didn't. I had stiffness yes but i had that prior to the effexor. I have now been on it for over a year, but it seems there are those who noticed joint and muscle pain immediately after starting this medication and there are those that got it after a couple of years! However, once they were weaned off it they were much much better although they still had fibre which flared and waned but never to the point it used to when on effexor.
Im sure my doctor wont like this but i am going to print off a page and ask for his "opinion" on these peoples reports, I figure that may be a softer way of telling him is job lol.

If i can be weaned onto an alternative med and see if my condition improves, well that would be great if i stay the same, so be it- Ill keep plugging away to find things that will ease the pain, but i have to try.

Just thought Id update this post. I went back and saw my Dr who this time listened and was more open minded. He agreed I'd deteriorated since my last visit. So,,,,, finally I have a referral to a rheumy....in 2 months time!!!
I can't wait that long so have booked in with a different one and will see him next week.
In the meantime, my pain has not gone away, but it has got worse. It seems to be moving up my body as I can no longer use my arms without huge pain and my fingers are starting to ache and get stiff. Mind you everywhere else still hurts as it did before on top of that!
I have no swelling, heat or redness. I have not had even an hours break from this pain in nearly 3 months now (except sleep which is also broken) and today I tried to get to the loo and, well lets say by the time i sat I had missed the target!
That was the final straw, i cried, I feel like a really old lady and I'm just not ready for it yet.

So Is there anyone out there who is like this, pain at a level 8 at least EVERY day?? This is why I can't believe its just fibro cause i thought I'd get a break by now.
My biggest fear is the rheumy willl find nothing and I'll be like this every day forever. Or worse I have something incurable! My mind is blowing and Im trying to stay calm but without a break from high level pain, well its hard to do.

Neenaa you seriously dont know how comforting your words have been to me. And yet you suffer from so much! I feel i shouldn't whinge but this is excruciating and no i am on no pain or nerve meds. Lots of these seem to clash with my antidepressant effexor xr so i am hoping now my dr has agreed to ween me off them and put me on something else, the rheumy will give me something.
I am sure if that happens and i get some relief, accepting my illness will be easier but right now its been pretty much all doom and gloom because i can't move a finger without pain.
I too see a counsellor but for anxiety. She has not yet seen me in this state as she's been on holidays. no doubt she will now help me with this horrible pain.
I will take on any help offered but i am grateful to wake up to your post which has given me a little hope. Thankyou!

Hi Diane
You are right. It is really nice to be able to share with others on here, I am finding it has lifted my spirits greatly as Doctors and even friends just don't seem to get it!
I've been on this site nearly all day reading and researching, trying to find answers and its definitely a huge help.
Can you please tell me about these heating pads you mentioned. Others have mentioned them to but are they an american thing? I'm in australia and the closest things i can think of that could be similar are an electric blanket or a wheat bag.
Its also interesting info you gave on operations. I had no idea when i had my knee op that my fibro would turn into such a nightmare....if its fibro.
Thanks for your support!