Old 09-30-2017, 03:07 PM #1 (permalink)
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Default New here: I have "flare ups" once a month...

Hi Everyone!
I'm new here. I have had fibromyalgia for 7 years. I don't know the terminology but this year I have had what I can only call "flare ups?" Is that the right term?
One minute I am at pain level 2, laughing, watching TV with my wife and within a half hour I am at level 8+ laying back in my recliner, TV off, soft music playing and drinking wine (my last resort as I hate alcohol). The pain lasts for hours at 8+. All I can do is sit and moan. Pain is everywhere, even my face because I am grimacing.

I take Lyrica, Tramadol and Clonazepam.

Is this "normal?"

Sincerely,

GrandpaPatrick
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Old 09-30-2017, 08:18 PM #2 (permalink)
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Default Re: New here: I have "flare ups" once a month...

Nobody else has "Fair ups?
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Old 09-30-2017, 08:46 PM #3 (permalink)
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Default Re: New here: I have "flare ups" once a month...

Hi there. Answers on here can be slow depending on how many people are current. I don't have flair ups exactly as you've described them, so I was waiting to see if someone who experienced something more similar to you wrote in. Fibro is a strange disease and seems to come in a rainbow of different colours. For me, I don't really have 'flare ups' anymore, just a constant fatigue and array of pain that I deal with daily. Some days it's worse and I get good weeks where it's better, but it's pretty constant (although not nearly as painful as some people on here). Other people talk of distinct flares. I'm more 'Hmm...this week it's my hips...this week it's my feet..this week it's headaches' as the critical thing, with other pains underneath. Your flares sound pretty intense. I'm sure over the next few days, others with more experience will share what their flares are like.
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Old 09-30-2017, 10:54 PM #4 (permalink)
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Default Re: New here: I have "flare ups" once a month...

Thanks for the feedback. I agree, for everyone it is different. I know of people who say they have fibromyalgia and
actually hold down a job and move around without any complaints. I can't stand on my feet for more than a minute
or two without so much pain in my feet, legs and back that it drives me to sit in a chair or on the floor. I cannot walk
my dog around the block unless I take a walker to sit on from time to time. The whole process is so painful that I
don't walk my dog. I can't go to church or see a movie. I only leave the house to see the Dr. to get my meds. I wish
I didn't have to do that. I can't cook, thank God I have a wonderful wife. Even writing this email I had to stop twice and
I type pretty fast. I get disability which helps financially. My wife works but I get lonely during the day despite the fact
that I have a dog. I try to keep myself busy.

Fibromyalgia is not supposed to get worse but I never had these bad flare ups until recently and they are torture. Literally
it feels like someone is torturing me. All I can do is drink two tall glasses of wine to help dull the pain. It helps a little. This has been happening about once a month now pretty regularly. And seemingly for no reason. I'm not under stress, I didn't exert myself.

Normally MY pain changes location from second to second. Literally. It hurts in my leftleg and right hand an then a few seconds later it might hurt in my back and a sharp pain in my right foot. All this going on all day long sometimes, dull, sometimes very sharp, sometimes so intense I involuntarily yell out. As I said Pressure plus time equals pain.

Despite the fact that it is a problem with the nerves, you definitely feel the pain in your muscles!

Hope this helps someone.

Thanks for reading and sharing.
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Old 10-01-2017, 12:43 AM #5 (permalink)
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Default Re: New here: I have "flare ups" once a month...

Yes I often get flare up , it can started as soon as I woke up or just wait till the day goes by and suddenly every pains hit me all at once I can no longer tell which one I'm having. Sometime it came up like horrible back ache from lumber down to my hips the pain felt as bad as I broke my back a few days ago but I didn't . Heavy dull aching out of no where. Then again I could also have facial pain like I've been punched or slapped far too many time or had a very bad sunburn on my face, but again I didn't do anything to have caused that. Many time I get fingers or hand cramps so bad I have to ice it to numb the pains. Or my ribs are getting sharp stabbing pains it felt like I went and ran a marathon all day. Not to mention loads of sudden tighting stiff as if I have been tightly wrapping up by a bunch of barbwires. I love recliner, I often sleep in it cause it was the only way I could go to sleep before till I completely destroyed it do to constant moving stuffing my back with cushion support or getting for too many bathroom visit. My feet is another whole issues I can't stand on it without feeling the tremor like earthquake underneath me and I also easily lost my balance and crash. Fibromyalgia can get worse cause there's no limit on how much it can do. I used to drink for it too but I have to be careful not to trigger my hyperventilation do to heart palpitations or sudden heat that will cause my skin pains so sadly I can only drink very wash down stuff which not gonna help much just a thought of drinking counts I guess. I'm so glad you have disability , cause many of us here hardly could get it . Do you use heat pads, or any alternative help beside medication ?

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Old 10-01-2017, 11:48 AM #6 (permalink)
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Default Re: New here: I have "flare ups" once a month...

I feel so very sorry for your pain. We have a lot in common. For one, I love my recliner too. Distributing my body weight
throughout a large number of muscles reduces the formula- P+T=P (Pressure plus time equals pain). I sleep every night
in my recliner because lying flat is far too painful.

I also have skin pain. For me it comes in the form of what I call a "Painful Wake-up" where when I wake up it feels like I
have a very bad sunburn. I have said it feels like my skin is on fire.

Regarding disability, the only way to get it is to get a lawyer. I applied for disability and they automatically refuse everyone. Once you have a lawyer (who will work for free or actually a percentage of your disability money) then you have to go before a judge and even though you have filled out the paperwork as to when you got it and you have 3 doctors who say you have it you need to recant it all verbally. At least that is the way it all was for me 7 years ago. Maybe now that everyone agrees that there is such a thing as fibromyalgia and we are all not trying to scam the government for disability it might be a little easier.

I love the Lyrica commercials. They prove it is not just psychosomatic. The thing I don't like about the commercials
is that it kind of suggests that you can get out and do things if you take the medication. For me it just reduces my pain levels from 7 to 5 on average.

No I don't use heat pads. I have tried but it does not help. Sometimes I try a vibrator but it does not help either.

Might I suggest that you divide your thoughts into paragraphs as it will make it much easier to read.
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Old 10-01-2017, 12:37 PM #7 (permalink)
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Default Re: New here: I have "flare ups" once a month...

Quote:
Originally Posted by GrandpaPatrick View Post
I also have skin pain. For me it comes in the form of what I call a "Painful Wake-up" where when I wake up it feels like I
have a very bad sunburn. I have said it feels like my skin is on fire.

Might I suggest that you divide your thoughts into paragraphs as it will make it much easier to read.
Have you talked to your doctor about this 'skin pain'? I had these many years ago and my GP had dismissed it. I recently discovered that it is called allodynia and it is often seen with fibro. I no longer suffer from it as intensely as I used to. I wonder whether lidocaine (patches) might help for this kind of pain.

I live in country where fibro is sadly also not taken seriously, and therefore getting disability is not an option. But I have a friend in LA and she said she could easily get disability for the neck pain that she has. (even though all Xrays, MRI scans are clear, so I don't know what her disability would be based on) So the system might indeed be changed. I hear others on this forum who managed to get disability (though the effort and the process can be traumatizing, but might be worth it at the end of the day)

And flare-up's, I believe most of us do. I never knew they were called flare-ups for many years, now I know what they are. I can usually feel one coming up though, sometimes the flare can mostly be fatigue, and sometimes a lot of pain and burning.
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Old 10-01-2017, 01:33 PM #8 (permalink)
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Default Re: New here: I have "flare ups" once a month...

Thanks for your feedback. I'm not sure that the Lidocaine would be the best choice for me for a couple of reasons. First, doesn't Lidocaine only work locally? and second, the painful wakeups only last about 1/2 hour or so. And they are only once every few weeks.

One thing I would like to get some feedback on though.

Does everyone agree with my formula Pressure + Time = Pain?

Or does that not apply to you?
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Old 10-01-2017, 08:06 PM #9 (permalink)
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Default Re: New here: I have "flare ups" once a month...

Yes every part of me i use or sit on or stand on or lay on hurts more and more the longer the pressure is on all or any part of my body.

I think this is what you mean..i also have high baseline pain and walking is hard for me on a daily basis due to pain in my legs knees and feet..so like many people call a flare except all the time.

Its like my fibro is all over all the time and whatever i use or have pressure on gets worse and worse pretty quickly.

Like Marvis said we all experience it differently ...i have been like this since day 1 over 10 years ago but like you are finding my fibro has been progressive..so many add on symptoms over the years...interstitial cystitis vulvodynia stomach and digestive pain migraines jaw and facial pain...balance problems and blurry vision...lol is that enough examples as well as baseline pain in my body worsening a lot.

For me my pain is a whole range of types..so throbbing stabbing burning deep in the muscles and joints tendons and ligaments..and yes your skin literally burns like acid has been thrown over your whole body and on some very delicate areas too ...i also have burning mouth syndrome...i wont embarrass a guy with all the female parts problems.

Hey what fun!

I so wish i could tell you i have found a magic answer to improve your symptoms. I am awake right now its gone 2 am and most of my body is on fire.

It sounds like you are having a very rough time....i hope it improves back to something more tolerable.

This illness comes in just about every shape and form.... take care of yourself as best you can and thank goodness for your lovely wife....may i borrow her!

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Old 10-01-2017, 08:37 PM #10 (permalink)
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Default Re: New here: I have "flare ups" once a month...

Sorry about the paragraphing.

I usually try to compress words to make the window smaller so it won't taken up too much space for other people, it's a habit from shorting texting on phone. I have no idea my post was that hard to read.

Thank you for letting me know.
Much appreciated.
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Old 10-01-2017, 09:28 PM #11 (permalink)
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Default Re: New here: I have "flare ups" once a month...

I guess when it comes to pressure times = pains for me can only apply to the pressure pains I get anywhere from my head , face ,to my toes.

But not the quick often striking pain like getting hit by lots of rubber bullets that shooting at me by automatic gun types of pain. Stabbing pains, tingling pains, electric shocking pains, or skin crawling or fire ants bites type pains.

I have Allodynia in all 3 sub categories.

So yes absolutly yes!! Lidocaine help. Even the cheap 5% lidocaine gel can put a quick stop to almost all Allodynia pains . However as far as long lasting or deeper, you'll need prescription pads. And when the skin absorb the stronger lidocaine it doesn't stop just locally pain.It will give you wide spreading comforting numb sensation that actually good enough for simple operation.

And GrandpaPatrick .

You are correct!

I have very hard time sleeping on any flat surface. I spent too much money on recliner I couldn't effort any more .

So since I prefer firm but cradling with full body support type recliner. I went with the extra wide double bed size zero gravity lawn chair with adding extra padding support to sleep on .

Because it made sense to get something cheaper , stronger , easier to get on and off.

I thought it seems to be tough enough for the job. Plus it supposed to support up to 300lb, and I weight less than half of that . Yet it came apart , and I broke it in less than a year.

As far as Heat pad it doesn't work for me much , but during very cold winter it help me from stiffing aches and pains and keep me from cold flash when I hold it up to my chest.

I'm too didn't know what skin on fire feeling was at first my self!! I thought it was just a hot flash.

But as it starting to getting worse and worsen, it feels like I'm suddenly living in the toaster oven. Panic and hyperventilating about being cooking alive in my own skin.

The worse is when I get them during brain fog. I've found my self pacing around like a drunk hamster on the wheel.

All fibromyalgia medications commercial are all alike to me. They always show people who're living with pains enjoying life.

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Old 10-02-2017, 03:00 AM #12 (permalink)
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Default Re: New here: I have "flare ups" once a month...

We don't have these commercials for prescription medications in the UK.....only a very minimal amount of ads for otc remedies like ibrupofen or maybe an anti histimine for allergies in summer.

Why do they advertise prescription medications when its up to a doctor what to prescribe.....most people here including me would never have heard of lyrica and i only know of it now because of this forum and researching meds to help with fibro i might then raise with my GP as a possibility if they dont mention or explain how it may help first.

Do you have a lot of pharmaceutical products advertised in the US?
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Old 10-02-2017, 04:59 AM #13 (permalink)
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Default Re: New here: I have "flare ups" once a month...

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Do you have a lot of pharmaceutical products advertised in the US?
More than we can count every single commercial break, the thing that I can't help but laugh everytime I see any of their commercial are their long listing of the side effects. Mostly always ending their list with "may cause strokes , some thought of suicide , or death ". Very amusing.
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Old 10-02-2017, 05:32 AM #14 (permalink)
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Default Re: New here: I have "flare ups" once a month...

Oh gosh..what is the purpose of advertising them do you think?...sorry if i am being a but thick..it must be money making but people cant buy these medications so im not sure i understand and definitely it doesn't seem very healthy..lol if you get what i mean...aside from the long list of side affects it must put also of ideas in the general public minds.
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Old 10-02-2017, 06:11 AM #15 (permalink)
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Default Re: New here: I have "flare ups" once a month...

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Oh gosh..what is the purpose of advertising them do you think?...sorry if i am being a but thick..it must be money making but people cant buy these medications so im not sure i understand and definitely it doesn't seem very healthy..lol if you get what i mean...aside from the long list of side affects it must put also of ideas in the general public minds.
So many prescriptions meds commercials. Like

Very expensive pimple treatment, also crazy weird side effects and may cause death. ( which it did and been on the news about it)
Fast diet pills , with far too many bad side effects including obesity ( how ironic) with or without FDA approval
So many anti depressant meds. Side effects may lead to some suicidal thoughts and death . That made a lot of sense.
Lots of sleep meds, which may cause sleep walking , with a great laugh it may cause insomnia , and you guess it ! death.
And of course , can't forget the enlargement meds and tons of promising medical equipments for late night tv with fake or real doctor claim the credibility. Which reminding me of a news I read earlier this year about a guy suing the .. enlargement med company after he received the item package containing a megnify glasses and a measurement tape inside , instead of what he thought he bought. Very entertaining I'll say.

Sure there are plenty of usable meds for serious illnesses but most of their side effects just sounding a whole lots worse than what it's promise to cure. It's the law to included them in their commercial. Purpose is to protect them self when they get sue by insurance companies.
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