haven’t found anything yet for the pain. I am just grateful I finally found a doctor who found the right combination of drugs to help me sleep. That took years!!! Getting more sleep has helped many of the symptoms but still get those darn flares. Walked a lot today at the fair with my granddaughters and family and know I will pay for it tomorrow, but so worth it to spend time with all.
OOOOH Luna!
I feel for you, sister! No wonder you hurt! Hope you are getting substantial relief!
TTT: I'm taking Citalopram and Wellbutrin. The Wellbutrin was started to help me quit smoking again (and I did) but it also helps with depression. Citalopram helps me with panic attacks I developed when I was hospitalized with my COPD 2 years ago. I also use Clonazepam for immediate relief for sudden panic attacks.
Thank you!
I'm glad that you have asked this question. I (perhaps strangely) feel comforted learning about what others are experiencing because I think it helps me to understand this condition more. And.....(most importantly to me) I somehow feel less alone when I know that I am not alone feeling the pain and strange sensations.
For me when I am experiencing a flare up (as I am right now) I get the following -
intense pain in my right side (flank area - to low back)
my right rib hurts like crazy
my right leg aches to the bone
neck, shoulder pain is way more pronounced
I get muscle spasms all over
my fingers and toes start to move on their own (I hate this one the most - does anyone else get this??)
my muscles tighten - especially in my feet and legs
I get restless legs all day long
my anxiety becomes almost unbearable
I do experience sensitivity to sound and sometimes to light
I get headaches
I can't sleep or I end up sleeping too much because I end up in bed with the pain and not wanting to be around anybody
I have no energy and can't get anyting done - everything feels like a massive chore
I feel such heaviness all over my body its as if I have a ton of bricks over me and I can't get them off
Does anyone else get this kind of stuff?
I am new to this but your description is pretty much how I feel all the time. I have recently started experiencing the involuntary twitches and the restless legs. I hurt ALL over with emphasis on my joints (mostly knees hips and shoulders)…I’m not really sure how to get my doctors to understand this…and I am sick of suffering and being blown off.
Thanks for your comment…it helps me to relate to someone else who feels the same.
For me it depends on what is hurting most that day and the circumstances that may have triggered it.
1. Hip (bursitis): I consider it a flare when the pain is unrelenting and nagging. It increases until I can't walk at all without a cane or assistance. This is usually due to being on my hip "too long". So for instance if I did dishes (10 minutes) then made something to eat (5 minutes) then picked up clothing in my room....it will ignite my hip. I have to pace myself very slowly in order not to ignite my hip. Which means a minute or so then stopping for an hour. It's annoying, but not as much as not walking + horrid, crying, visit-to-the-ER type pain.
2. Spine/Joint flare: This is when the spine goes cold and stiff. The neck will need to be contorted and bent forward. I wind up moving my body forward (think hunchback). It stops me clear from doing ANYTHING other than laying on my back for hours to lessen the pain. If it includes the joint pains, then my hands will become difficult to use and type with. The bones in my feet will ache terribly.
3. Extreme tenderness in a tender point: Usually at the base of my head, like you said. It stops me from doing anything else. Painkillers don't touch the pain...only rest and heat. But I can't "pull through it" trying to do ANYTHING else but laying down and resting.
4. Numbness episode/flare: when the right side of my body goes numb. It will cover my ear, the cheek of my face, the right side of my face including lips....arms, legs. The only med that helped me with this symptom has been taken away from me, so I wind up just crying until it subsides. It's also very scary, because you think of heart problems when this happens. I don't have insurance, and even if I did - a visit to the ER everytime I did this to be told my heart is fine is ridiculous...but doctors cover their bums and say I need to go when this happens. *sigh*
5. All over ache/cripplyness flare: description - "oh lord, what is happening....am I dying?" all over body ache. Laying in bed like Dracula and not moving at all....yeah - like that
6. Mental flare: This is usually a sign that I'm going to have a bad day physically. It is a "good" sign, because it slows me down so that I don't throw myself into one of the flares above. However, it's very frustrating. I'm NOT being facetious when I say I quite literally become temporarily mentally retarded. It is beyond fibro fog. It is fibrofog on steroids. I cannot comprehend anything, and become very upset because I can't think. I have examples, but this post is becoming too long as it is. lol *sigh*
Basically, any symptom that is amplified to the point where I can't walk (to the kitchen for a glass of water) or sit up (in bed) I call a flare. lol <3
ha! love this <3
This is so perfect. This is how I feel, plus my depression kicks into high gear.
oh my goodness, tvs *kill* me when the music and voice combo is off. I have to have subtitles on all the time so that i don't have to risk the music or a scene with fighting or commotion coming on and blasting out my eardrums.
Also, the tops of my feet are always sensitive as well. I live in flats and sandals until there's literally an inch or three of snow on the ground because wearing socks hurts, and putting a shoe with a tongue on top of a sock is just the worst!
my toes and fingers will stiffen...but haven't had them jumping around erratically....are you on Lyrica?
Hi Nina.
I can definitely relate to what you are saying. I've had that "am I dying?" thought so many times, maybe many times a day some weeks. It is scarey and i am sorry we both (and the rest of us) have to go through this.
I, too, was told to just go to the ER when I have such bad pain and it is ridiculous. (1) there's no way we can drive safely when we are like that, (2) the ambulance costs something like $800 without insurance, (3) yes, there is no way we can afford to go as often as we would need to.
Stay on the boards and keep talking to help yourself and others. Sometimes just getting some understanding and support can help.
I'm glad I was put on Cymbalta before anything else. It has been a blessing where most everything else I have tried over the years has crippled me with sleepiness. Cymbalta hasn't done that.
I know you don't have insurance. My heart goes out to you. I don't know how I would manage without it.
Stay Strong, Nina.
There's been times in the last few days my left side (near my heart) had started to ache...I don't have insurance either and I can't get Medicare until September 2014. I figure as long as I don't have nausea, I'm ok. I read some where that if you are having chest pains and nausea at the same time it is probably time to go to the ER. However, I am not a doctor but I try to avoid expensive ER/Ambulance trips when possible. Lil AL