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Posted 4/17/2009 2:37 PM (GMT 0)
Hey all,

  Since it took me 5 years to get diagnosed, I have not been able to try meds outside of advil or tylenol (which never work).  I just finished a 2 week trial of flexeril.  After day 5, I started feeling better.  Day 7-9, I felt really good.  I actually had a 4 hour period of NO pain, not even underlying pain AND I had energy.  It felt really strange to feel so good.  That same day, I developed a very annoying ringing in my ear and a twitch in my eye that have yet to go away.  Day 11, I started feeling a flare coming on.  I progessively got worse on day 12 and 13.  Day 14, I stopped taking the flexeril.  I am in so much pain.  I have called my doctor 3 days in a row now (with no call back, ugh!) to try something else.

  So, all that to say - Do you still get flares while taking meds?  Am I expecting too much to think a med will make me feel all better.   Do the flares still come, but they are less severe?

  What do the meds do for you?  If it's not gonna work, I think I'd rather not take them.

Thanks,

Posted 4/17/2009 3:01 PM (GMT 0)

Hi Spatchie...my rhuemy thought an SSRI would help with a bunch of my issues...anxiety, Fibro and RLS.  After adjusting to the side effects, I felt great...for one week.  But...all my symptoms returned with a vengeance and I was so disappointed.  I think the Lexapro helped with some depression, but that's it.  I am still on it after trying to get off for two months.  The withdrawals are a &^$#@!

Can I ask you what your RLS feels like?  The Rhuemy insists I have it but I don't just get it at night.  My legs feel tight, crawl and my right hip, thigh, middle of my butt and knee are in constant pain.  I do kick my legs around at night.  But the other sensations are almost constant...especially when sitting.  I feel like there are ants crawling all over them.

So sorry you feel so badly.  get some rest..

huggies

Donna

Posted 4/17/2009 3:09 PM (GMT 0)
Spatchie,
I have never taken flexeril, so I have no comment on how it acts. But you
asked if we still have flares and pain on meds. Well, I do. Not nearly as often,
not nearly as severe, and they usually right themselves very quickly. I take
Lyrica, and I would not come off of it for anything. It made me gain weight,
which I hate, but I ran out, and didn't have it for a few days, and the pain was
so much more severe without it.
It is like bipolar II. I take the meds, and they help. But that doesn't mean I never
experience the illness. I am not cured, only controlled.
I hope I have answered some of your questions. Ultimately, you have to decide
if your symptoms are enough better to keep taking the meds. Talk to your doc.
Good luck.
Posted 4/17/2009 3:10 PM (GMT 0)

Hi Donna,

  Thanks for the hugs.  My RLS does not fit the typical description.  My legs hurt when I sit or stand.  The muscles get really tight and there's just an overall ache from my lower back to my knees (especially the glutes, hips and thighs).  I am constantly shifting my position or bouncing my legs like an anxious kid who can't sit still. I actually feel better when laying down. When I do finally get to lay down, my legs feel a numbing sensation and finally get to rest. I sit at a computer all day at work.  My co-workers must think I'm crazy, cause I'll stand at my desk and hunch over just avoid sitting.

 

Posted 4/17/2009 3:13 PM (GMT 0)

Hi Spatchie.  I know everyone is different, but I haven't found much relief with meds either.  I can take Flexeril or Zanaflex periodically if I'm having a particularly bad day, but I can't tolerate the side effects of taking them regularly.

I can't tolerate Lyrica or antidepressants at all, so those aren't an option for me either.  I have an inner ear disorder and sometimes take Valium for that, which also helps with muscle spasms and anxiety.  But again, it's not something that I want to take all of the time.

I mostly manage with non-pharmaceutical "treatments" like heat, massage, stretching, gentle walking, and trying not to overdo it physically.  Trying to manage stress is also a biggie for me.  If I get too stressed, I feel it in every part of my body.  I find that these methods really do work for me.  I'm never completely without pain, but they do help.

There may be some people out there who have all of their pain controlled by meds. but I don't think it's common.  I think most people taking meds. would say that it helps them manage the pain.

Hope you feel better soon.  This is a hard illness to cope with, but you do learn how to manage the pain (most of the time) and live your life (sometimes with some adjustments).

Hugs - Austen

Posted 4/17/2009 3:17 PM (GMT 0)
Ang I'm sorry your in such a flare!!! The only thing I take for pain is 4000 mg of tylenol a day, don't know how much longer I can hold out on that though. I take 100mg of amitriptyline at night which I do think helps with the pain but it doesn't stop me from having flares or hurting when I over do it. I tried flexeril for my neck last year and couldn't tell a difference. There are so many things that can cause flares weather, stress and over doing it. I hope it goes away soon.

 

luv and hugs

Marlee

Posted 4/17/2009 3:20 PM (GMT 0)

Thanks Spatchie.  Mine 'feel' numb when I lay down too...but they aren't.  I'm jiggling them all the time too.  The sensation that they are wrapped tightly in an ace bandage drives me crazy the most.

Oh well...Like Gilda Radner said..."It's always somethin'!"

Hope you get your meds straightened out and find something that helps.

More Huggies

Donna

Posted 4/17/2009 4:20 PM (GMT 0)
Hi!

 

Sorry to hear your meds didn't work for you.  I take flexiril too, although I hardly bother with it anymore because it doesn't do much of anything for me either.  I had an experience similar to yours when I started taking tramadol.  For the first few days, my pain was virtually gone and I was so thrilled.  But then, suddenly, all the pain returned.  It's so frustrating and disappointing.  Since then, I haven't found another medication that works nearly as well as the tramadol did at first.  I am fortunate to be prescribed percocet, but in all honesty, most days it barely even touches my pain, if it does anything at all.  Hopefully your doctor will contact you and let you try something else soon.  I don't know that there's a way to ever be pain free, but I'm sure there is a way to manage your pain and make it less severe.  Hopefully you will find it soon!

 

Take care,

SaraBeth

Posted 4/17/2009 8:49 PM (GMT 0)
Spatchie and Donna,

Maybe all this time I have had RLS. I thought it was just at night and I am all day long. Actually much more than at night. The ant thing is just how I feel also the perceived numbness. Do either of you visibly see the tiny tremors going on? This thing drives me to the gin mill, well a gin used to taste pretty darn good!!! Seems like I have given up just about everything good or fun at least....oh well it is what it is.

Thanks for answers, Patsie
Posted 4/17/2009 9:12 PM (GMT 0)
Dear Spatchie, and all; The flexeril is a relative to the tri-cyclics, like amyltriptilene and nortriptilene, often prescribed for Fibro. However, the flexeril states on the info sheet  included in packaging that it is intended for short term use and will slowly start to have less and less effectiveness. The only time I ever felt "pain free", for more than a few hours was when a doc put me on methadone. I was pain free, but dysfunctional. I went back and told him, I would rather go back to a less effective med and experience some pain than live in zombieville. So, the tramadol works well for some people. I tried it and it worked wonderfully for about six months. Then not so much. So, then, as another writer has stated, a Codeine/Acetominophen combo is what I have now for pain. It allows me some pain free 1/2 days, and allows me to sleep, with a sedative, but never, is there, or rarely is there, a pain free day. However, I am much older than you and have been battling Fibro since 1990. I did function fairly well with the amyltriptilene at bedtime and OTC tylenol, until I was hit by a truck in 2002. Now, I'm not coping so well.

Posted 4/17/2009 9:15 PM (GMT 0)

Hi Patsie...I sometimes have twitching in my feet.  When I put my legs against the sheets, they tingle and crawl, but I have this happen during the day also.  The numb sensation is almost chronic, and I shake my legs to relieve it.

Sometimes ya just wanna kick somebody...ya know what I mean?? LOL!

huggies Donna

Posted 4/17/2009 11:53 PM (GMT 0)
Yup. I used to get RLS terribly while on Tramadol. It was awful. Sometimes it went on for days. I could not sleep. I could only stomp around as hard as I could to cause a shock to vibrate up my leg to get relief. A long walk helped too, but usually at 3AM, it's not the best idea. Don't kick something, you'll break your big toe and then you will have sore feet. Sometimes benadryl, the OTC antihistamine would help at night, sometimes not so much. Check with your pharmacist though about drug interactions.

Posted 4/19/2009 3:49 AM (GMT 0)
HI spatchie,
Yes, I get flares while on medication. The medication keeps the constant pain level managable. I have an nsaid for day and a muscle relaxer at night. For flares, I take a little extra
Posted 4/21/2009 6:07 PM (GMT 0)

Finally got a call back from the nurse.  They are switching my meds to Klonopin (sp?)  Another muscle relaxer, I believe.  I told her I still had a flare up while on Flexeril.  She said it's b/c I'm still not getting deep sleep.  I don't know much about the sleep connection.  I need to do more research on that.

Thanks everyone for your replies.  This site is so great for getting "real" answers.

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