I have the same symptoms during a flare-up: excruciating pain in my neck, shoulder, hip, knee, etc. Even the tops of my feet hurt! I also get ultra-sensitive to noise and light (written as I turn my TV down because the music on it is too loud! Then I can't hear the spoken words so I turn it back up. I also get fibro-fog (can't think, can't concentrate on anything, I forget people's names; people I have know for years). I also fight with depression more...
I definitely understand about grasping for words for normal things. My co-workers notice it and tease me. I do crossword puzzles and play Scrabble on-line so I can try to get sharp again. I also do beading and make jewelry. I figure anything I can do to get my mind working will help in the long run. But it make you ask yourself: "What is wrong with me, did I get stupid overnight?" Hugs (gently) L.A.
I'm so happy you shared this.
Yes I was hoping the same thing about the TPIs. Apparently I need more frequent injections in my shoulder and neck, my primary areas, at least until they learn to behave. Maybe weekly for a while.
Your face? Gosh that is terrible.
I get screaming pain from my ribcage up in the back -- usually just on one side. Like today L8-9 shoulder pain. Yep, pain meds barely help at all. I've used the tennis ball and about 1/4 tube of aspercreme. After I check in with everyone, I'll use ice.
It is so important for me to understand other's experience with this awful disease!!
Love and hugs back to you.
Oh SK I am so sorry to read this.
What you describe is what I feel, too, when I have what I call a flareup (like today). See, we have some things in common, but you have described it so much better.
I've never heard of SI join destruction or central canal stenosis. What are they?
If only there were an on/off switch!
Do you get trigger point injections?
I feel so blessed to have had 2 pain free days since getting my first round, but also 2 really bad pain days in the week, as opposed to my norm of 1.
Hi Kimberly,
Yes, I get exhausted, too. I can tell when my 'getting up' heart rate is >100 and I feel nauseous.
Oh Kimberly, I didn't realize there was a L12 pain. How high is the scale?
I have noticed, too, that I have trouble breathing lately. I find myself taking the time to breathe in deeply or pull in air quickly.
I'm so sorry to read of your experience. Thank you for sharing it.
Hi Traci,
Yes, this sounds familiar. Fine one minute and not the next. You wake up feeling fine and by 12 it's so bad you can't think straight.
How do we even work? Do you work?
I've noticed that I've been sleeping 12 hours, too. Last night from 9pm to 9am when the alarm got me up.
Teesa, that is BAD! You have to remove clothes?
It sounds like many of you have pain and inflammation in your legs and knees. You must be hobbled.
Where is your headache? All over or just one side?
Teesa, I'm here with you. We all are. I have mine now, too. Hang in there.
Have you had TPIs or narcotic Rx or aspercreme or a TENS unit? Is there anything that helps?
Hi Adie,
Please don't ever worry about rambling. We are here WITH you -- experiencing all of the same things, even thinking about throwing ourselves under a bus. I have asked the angels to just come and take me because I can't take any more suffering.
Then I had my first round of trigger point injections and actually had a couple of pain free (well, that's relative, isn't it) which I guess means fewer areas and less than a L4 pain. I guess I still have pain in my fingers, but I attributed that to arthritis. But maybe it isn't.
These stories are so educational... And sad.
You are a trooper, Adie. We all are.
Yes, what a creative way to share your experience!
I, too, have heart palpitations, but I attributed them to something else. Maybe not. Thank you so much for sharing!
It impressed me that so many have mentioned knees and legs. My heart goes out to you.
I wonder if anyone here actually JUST has fibro. I, too, have many conditions.
Is there anything that helps you, Sandi?
Oh Sarah, this is so sad to read.
Thank you so much for sharing your experience.
I think you are the first to indicate a time frame. It sounds like this lasts a week for you? Gosh, please don't feel like a burden. I know, I do, too, We probably all do. My pet is a cat. I chose her because she can be self-sufficient. I know it must trouble you so much that your dogs want more from you.
Yes, I know how long I've been out by the amount of mail that builds up, and the late fees I get with my bills, right?
I think you are the first to mention memory and muscle spasms. Interestingly my spasms had stopped until I got the TPIs. They've started again. A 12-hour tricep spasm I had around 2001 or 2002 must have been one of the first symptoms that I had (or that I remember because it was so bad).
So what helps? What meds do you take? Do you have or use anything else that is supposed to help and doesn't?
Our hearts go out to you Sarah. Thank you for sharing.
Hi Vintage Hippie!
This gives us to new info! Thank you so much.
Gosh I've been using so many things over the last 13 years that I finally just broke down and told my Dr I want to be treated with medical / medicine now.
Let's see, I became a Nikken distributor so that I could use magnet therapy. I enrolled in a Naturopath Master's Degree program which covered all of the non-medical / non-medicine alternatives -- all of them, you know some are reflexology, flower essences, chinese medicine ( I bought boatloads of herbs online and literally made my own tincture medicine), massage therapy (just made me swell worse), brain entrainment, and on and on.
I too, sleep flat with a pillow under my knees. This is such good advice. And I wonder that even with that, sometimes I wake up with the cervical pain already started.
I even got help from 3 different spiritual healers and it was after that last-ditch effort that I asked my Dr for medical help. Interestingly, just today I found my chakra clearing CD.
Plus I was a personal trainer and knew all about physical therapy, exercise, etc. As the pain got worse with exercise I had to move to another field.
It is SO GOOD to hear that someone is getting such good results. I am SO happy you shared this good news with us.
Yes, Debnted, I find the same thing. Doing too much brings it on.
I had to press Monday and Tuesday this week, and then found that Wed was the same. And I have had 2 bad pain days this week, from stress and pushing.
Thank you so much for sharing your experience.
Yes, I think that being here with everyone is one way to get better. Thank you.
I have found, as well, that foods are inflammatory, too. Unfortunately, our grocery budget keeps getting whittled down more and more and I am eating bread for the first time in maybe years. Also peanut butter (loaded with trans fats) and jelly (sugar). My diet, forgive me, SUCKS and I can tell that my swelling and pain are more chronic.
I've just created a profile at flexjobs.com and am hoping that I can begin earning some more again so that I can bet back to my better nutrition.
Boy, my experience was just like yours. I kept getting worse and worse that I took a week off from work and just laid on the couch, and then wondered why I didn't feel any better at all after a full 7 days of rest. Thank you for sharing that.
Thank you for sharing everything and offering hope. You are so kind.
Hi Leeann,
We are here for you. Hopefully you'll get some good ideas on this discussion, and also some good treatment now that you've been diagnosed.
I wish I could sleep when I am exhausted. I went back to bed 2x today as I was so tired, but couldn't sleep. It feels good just to lie down and rest over the weekend.
I wonder if doctors are on this board and read all of this?
Please take good care, Leeann.
Thank you for sharing, Debora.
Yes, wouldn't it be great if we could sleep all that we need to, all week long? I wonder how much better we would feel then.
You are the first to mention fever.
I actually had a low-grade fever yesterday for the first time in years.
And I have, I'm not sure if it is a trigger point or a swollen gland, under my arm pit.
And I had some pretty bad ovarie pain. That pain went away so it must have just been trying to pop out an egg! LOL.
And the area under my arm is about 1/2 the size today.
And the fever is gone.
I know, it's hard to tell which condition some of these are from, isn't it?
Thank you for sharing your experience.
Hi Lil Al,
Wow, even the tops of your feet?
Speaking of feet, does anyone get 'purple' feet? I've been getting purple feet for the last 3 months or so. When I get up, blood seems to pool into my feet. No swelling, but a bit of a scratchy feeling.
Has anyone mentioned depression yet? Are you taking an anti-depressant like Cymbalta? I am so glad I started it. I didn't realize how much my mood could improve.
Hang in there Lil Al. Thanks for sharing.
TTT out! I'm moving on to some ice, now! Thank you ALL for sharing your experience. I probably won't keep replying to everyone, but I wanted to at least try today.; I have learned SO MUCH! I hope you have, too.
♥
TTT
Friend of mine does the purple feet, but it's not from fibro.....it's from Raynauds I think. You may want to have that checked out separately. OR maybe it's Sjorjenson's (I probably spelled that wrong), but her doc lumped it into her fibro way too long. She's finally got a decent doc who realized it wasn't the same thing.....
I don't know if I would call them flare ups.
I thought that Fibro attacked what I had previously injured during my lifetime. Mostly joints, but I have also broken my ribs & my jaw in 3 places.
If I sit too long in a wooden chair (awards night, prom night), or if I shop too long, my back is a searing ache from my sciatica up to 6" Pain level 10 & I STILL have to drive home. I'll take 2 Savellas & an antinflamatory wait 30min & then drive slowly home.
M