We all use the term, and I wonder if we experience (mostly) the same thing, or if there are a variety of experiences.
What do you experience during a flare-up?
I'm having what I call a flare-up today and here are my symptoms:
* when I woke up I felt the pressure building at the base of my skull and cervical spine
* it feels like I have had NO trigger point injections, they are all screaming
* there is aching and tightness across my upper back and shoulders
* there is level 8 pain in my cervical area if / when I tilt backward ( a little bit )
* there is level 8 pain in my head -- started in my cervical neck, increased to the left side of my head and then behind my eye, and now it extends across my forehead
* so there is bad pain from my shoulder blades up to my forehead
* interestingly, though, it feels like there is less overall inflammation (maybe, I just can't reach back there)
I know, TTT, until I came here, I had never heard the term 'flare', my Doctors always used the term 'pain cycle'! They are still trying to break them, but if lucky it is only ever lessened to some degree.
My worst pain is always my lower back, and no matter what I do or take it NEVER goes away, there are only degrees of tolerance. The winter pain is always the worst, though the air conditioning blowing over me in summer is not great either!
I feel like the strongest lumberjack has hit me there with an axe and it's implanted in me! It's from the SI joint destruction and the central canal stenosis, and other things but mainly those. Yes, pressure, sometimes it's as though I have a house sitting on my sacrum! I can relate to the pressure for sure!
But hey, there are still good times, good days, The Enbrel helps, I'm better, not best, not great, but better! I still spend time with my grand kids, can still laugh and enjoy life! Have to, it's what I have to work with!
For me a flare up is being more exhausted than usual, with my back pain at 8 and my knees at pain level 12. I have no brain, it is hard to think at all, and all I want to do is lie in bed with my heating pad. If I get really exhausted it is an effort to breath.
Hi everyone. Well I experience all the same. Fine one minute the next the pain (s) start popping up. Back, shoulder, neck, head. I also experience bad fatigue, last night I slept 12 hours and I’m pretty sure if it weren’t for my back pain I would have kept sleeping.
A flare up for me is all of these at the same time
*Skin tenderness to the point i have to remove clothes or wear the minimum
*headache that’s at a level 8-9
*Light sensitivity
inflammation and pain everywhere but especially my knees
*Back pain
Hi i cant believe u gave my exact same symptoms. My headache usually starts during the night. It starts at the base of the skull and spreads round to my left eye which feels like its been pushed out of my socket. This is the first thing to point to a flare up. I generally feel it in many places , my back, neck, legs hips and hands whereas maybe only two of those when im having a good day. I can start with back/neck pain and end with leg and neck pain . It moves around over the day. Could i please ask if anyone else has bad pelvic pain. Apart from the problems with my spine this pain can be so intense i want to throw myself under a bus. Dont worry i wouldnt its just a feeling that maybe that would stop it. Im so thankful that i can finally talk to people who understand. Thankyou to all of you. Sorry if im rambling i just want to get you all in one room and ask so many questions. Hopefully il answer a few of yours too. Adie
F - fighting the intense brain fog, depression, confusion, self-doubt
L - lightning bolt feeling up and down my legs, light & noise sensitivity.
A - autonomic nervous system disorder ; heart palpitations, trouble swallowing
R - rapid and increased pain in multiple areas; shoulders, front & back of neck, occipital area, mid and low
Back, hips, knees, hands and feet. Migraine.
E - EVERYTHING hurts!
I think we all have so many similar symptoms, yet many are also facing additional conditions and diseases along with the fibro. This compounds their fibro pain because of what they go through with lupus, RA, osteoarthritis, and so many other diseases- too many too list. I can’t even imagine their pain.
I probably wouldn't be posting as one of the first symtoms after the painand swelling starts is a brain fog and everything I am supposed to be doing just goes out of my head ,I start feeling like my cerebellum must be affected as it ceasesto think about much other than the pain for the first few days,then it I guess starts to get used to it again but remains at a level that makes me think that it lowers my I>Q> dramatically sometimes I have trouble finding simple words like couch chair or dog and have to describe them then the word may or may not pop into my head ,the rich mental life I normally enjoy while doing other menial tasks must stay focased on getting thrue the pain I can't think about a book I have read ,or movie about an article on archeology or out of Science news I am just concentrating on getting thru the task at hand,it is exshasting.
The pain I have normally is in my lower spine some in the cervical spine my knees and hands,when it flares the pain is like everywhere
it is so intense that it is hard to tell where it is coming from ,it makes me nauseus and I usually vomit at least once in every period of being awake,which may be once a day or several times if I am up and down .I ussally just want to crawl into a ball until I can stop feeling so bad. I don't eat much when I am having a flare but when it stops I tend want to gorge some for the first day or two I am so hungry but my ability to swallow has scared me on several occasions when I have almost choked,I will not eat anything that has the consitance of a hot dog or really crunch like celery for a few days after.. The muscle spasms are just crazy and in odd places like my left foot and right hand across my left side of my abdomine ,then over my right kidney then back in my foot sometimes it is so bad I think it is going to break the bones in my foot.It effects my vision and makes me shake sometimes .it can go on for hours if I am lucky or for weeks It is not always the same but seems to efect my left side more and my stability I can get to where I can't walk if it lasts more than a few days
The worsest part is feeling like more of a burden than when I am not in the midst of a flare up ,I need help for almost everything like feeding my animals,cats and dogs letting them in and out seems almost impossible .Losing days because of the pain just makes me feel like I am losing my mind , I used to have this incredible memory when I read ,now I can reread something and not have a clue has to who done it ,is on of the few benifits.or watching reruns and it is like they are new. I see my 80 year old father who goes to bed at like 1;30 am and is up and out of the house by 8am having had a shower ,preaching at two churchs.I just feel like someone who should be in a nursing home sometimes then Iget somewhat better and think I'll be feeling good enough to go back to work a then it will start all over again
I don't have a lot of flares anymore except for fibro fog which I have at various parts of each day to varying degrees. I ache daily, but after almost 20 years of living with fibro, I've learned to accommodate/adapt to it.
One thing that truly helped me was learning accupressure. My doctor happened to be somewhat basically versed in it, and I learned more from a kinesiologist. They didn't DO TPI where I was when I was diagnosed, and I'm rather thankful they didn't.
When I did have flares (and still do at times around neck shoulders as you describe), I change pillows. I routinely sleep with 6 pillows by my bed of varying thickness and density. I usually have one behind my back, under my head, and between my knees (I'm a side sleeper). You MUST align your spine at night even when you're asleep. If you're in a chair, get a pillow that tilts your spine a little higher than your knees sort of like this shape < (your behind is in the high end/knees at the point). You'll HATE this at first because it HURTS for a little while during the time your spine aligns. Then, it's AMAZING.
Between the accupressure and the pillows, it helps me a great deal. For the pelvic and mid back pain, sometimes laying in the floor with my feet up on the couch for about 20 minutes or so helps as well. My doctor explained it thusly: When you're in pain and all knotted up and hurting, you're not relaxing and your muscles are inadvertently pulling toward your "not painful" side throwing you off. The way the muscles are attached, it pulls on your spine making stress in both your muscular and skeletal systems making it hard to get relaxed.
Also, deep breathing helps if done properly. You can find how to do that by googling people who breathe the Chakra. Watch how they sit and breathe. Extra oxygen comes into your body that way and it helps release the lactic acid build up of the pain.
OR at least all this helps me......your results may vary.
For me it is very similar PAIN, that nothing helps, exhausted, emotional, can’t get up except to pee, then they slowly…very slowly return to my normal pain levels around 3 - 5. I find that doing too much will bring them on as well as extreme anxiety.
When I was first diagnosed, I was in so much pain that even a sheet on the bed hurt my body. My muscles got so weak I was falling down stairs, out of my car, etc. I took an extended vacation from work since I couldn't think. At first, my fog was so bad that I'd start my drive to work, and forget how to get there even though I'd worked there over ten years. The thing that got me to go to the doctor was that we were out on our boat one evening with the kids, hubby trying to get me to relax and ignore the pain, and I almost dropped my 18 month old son overboard. Now, he was in his life jacket, but still....it made me act. Doctor made me take an additional two weeks off work after I saw her, and we worked on meds. Once I got medicated properly, I was able to go back to work, but never made it back to full time. Part time was all I could do, but it was enough. I still had major pain and the like as breakthrough or flares, UNTIL my doctor put me on an elimination diet and I found my trigger foods. She also said immediately--NO ASPARTAME or artificial sweeteners. Well, that helped right away all by itself. During one of my foggy periods, I sent my bills to the bank, and put an $800 cash deposit into my mailbox. Thankfully, I had an honest mailman and he brought it back cheerfully. Throughout the next four or five years, my doctor and I worked on all the stuff mentioned below, and I eventually learned how to eat better for my personal triggers, how to do accupressure, and the like. So, it's clearly a process. Since then, I've also been diagnosed with a Chiari Malformation in my brain, herniated discs in my back and neck, and gotten Lyme Disease for which I have had such a horrible time, it made fibro seem like an easy road. YET, there was hope in all of them, and I eventually became functional again. Am I the person I was? No. Do I grieve for and miss the things I can no longer do? You bet. However, after I ceased being angry and got aggressive about my own care, I got better than I had been, and that's what it's all about. :) Eventually, you all can feel better as well. You may not all be "well" or "pain free" or "fog free" but, it will get better.
I can relate to the gorging!!!! And trying to find the right words--it's like my brain is simply gone!!!! Yes, back knees ans spine for me too!!
On the trouble swallowing...have you ever had a swallowing test?? My Dad had trouble with this. His lung doctor did the test, but I bet another, like a rheumy, would do it too, just a thought.
When I have a flare up I wake up with a headache similar to a migraine.I am so stiff and sore all over. I am so exhausted I can fall asleep eating breakfast.I just can’t hardly move. I can drive down the road and forget where I’m going. I have never been so tired and all the sleep doesn’t help!! Sometimes when I lay in bed I ache so bad I can’t lay still. I was just diagnosed about a 6 weeks ago but went to several doctors for about 3 years.
So many people talk about having headaches with flares and I find it odd because I rarely seem to have headaches now days. That is the only part of my body that doesn’t hurt. I can’t remember the last time I took pain med of some sort for a headache. Either it doesn’t hurt or the other pan is so much I don’t notice it. I should knock wood I know. All my symptoms and diagnosis are so new and not under control so not exactly sure what is a flare and not in the last 6 months. For me, I run fever often because of the RA and the last 2 times I ended up in the doctors office for pain it was because my spine felt like it was being squeezed and had run fever continuously for several days. My ankles and knees hurt most of the time so that is just normal. I get sharp shooting pains in my shoulders and this week it was my wrists and fingers. That was new pain for me. My fingers still look like sausages from the swollen joints. And I have the exhaustion. I guess that is a flare symptome for, needing a lot more sleep than usual.
I also have the light sensitivity, was not aware that it was also a part of fibro. symptoms. I am a newbie and I have already started learning. I was not sure why I had got so sensitive to light, I have to wear shades when I am out or I will get the worst headache ever. Sending Blessings to u