Major fibra flare-up, miserable night

[radfringe]

been aching for a week now, more than normal - but within the tolerable range just very annoying

last night got hit with spasms in right shoulder, restless legs (RLS) kicked in to boot, and something new

got the same achy pain as I have with RLS in my right arm..

did all of my routine stuff that I do when it hits - took until midnight before things cooled out enough so I could get to sleep

woke up this morning at 6am with right shoulder loudly protesting...

I've got my new insurance card last week, with new job, the insurance provider also changed and my old doctor won't take it, so I'm switching docs. I'm not unhappy about it as old doc hasn't been very helpful and I was seriously considering switching doctors anyways

so later today, I have to call new place and get appointments set up

been reading about LYRICA - anyone on it?

[mopinko]

1. the best med i have been on is

ambien. makes such a huge, huge difference. not just that i always sleep well, but that i never worry about sleeping. i take a melatonin at night, also. sleep like a baby. still sleep 12 hours most nights. but....
curious about lyrica, though. if i could replace the fistful of pills with one, that would be nice.

[radfringe]

2. I can't take ambien

gives me very weird disturbing dreams... not nightmares, but very disturbing ones, enough to wake me up so it kind of defeats the purpose

[mopinko]

3. i had sorta strange dreams but

i liked mine. they faded after a few weeks. the sleep makes a big difference to me.

[Lurking Dem]

4. I know a few folks who are taking

it for diabetic neuropathy (its original purpose along with seizures).

They swear by it.

I took its precursor, Neurontin, but had difficulty tolerating it enough to take an efficacious dose. (I felt like a zombie.) Lyrica is supposed to have a lot fewer side effects.

It should start working fairly quickly so maybe have the doc give you just a couple of weeks worth of it and try it out?

[radfringe]

7. Neurontin didn't help me at all

I got a buzz from it for about 15-20 minutes - but no beneficial pain relief over the long run

saw the new doctor on wednesday - after going through the list of what I've been given for drugs (none of which helped) and all of the various treatments he gives me two prescriptions - one for Neurontin and one for Anaprox.

I told him to forget about the neurontin, and since I wasn't sure about the Anaprox I figured I'd give it a try. turns out Anaprox is a naproxon knock-off, ok so I haven't been on it for a long time, figured I give it a try. Took it last night around 7:30 - went to sleep at 9pm

woke up at 11, 12, 1, 2, and finally at 3am said screw it and just got up. still aching and have a bit of a druggy hangover. conclusion: Dancing naked around an oak tree on a moonlit night with a dead chicken would have the same effect, in other words - useless

did ask about Lyrica, but Dr. Useless wants to try some other stuff first - namely the useless stuff I've already tried

[Lurking Dem]

8. I hate that.

I have been offered every version of a seratonin re-uptake inhibitor there is - for my pain, for my stomach, for whatever. Seems to be the panacea drug of the century. Crap almost killed me once.

My favorite is, "are you under a lot of stress? Do you have a therapist?"

"I'm under a lot of stress because I HAVE INTRACTABLE PAIN THAT YOU ARE NOT TREATING!" ahem

For flat out pain relief I found that low doses of morphine sulfates work better than higher doses of other crap.

Alas I cannot sleep on opiates (I get really wired for some reason) so that doesn't help me sleep. But at least I get stuff done.

Things that have helped (take with individual grains of salt):

potassium at bedtime - helps with the cramping
CLA Plus - (conjugated linoleic acid) - helps with inflammation
Masada Dead Sea bath salts with eucalyptus - temporary but indulgent
Tequila - doesn't help (in fact, makes neuropathy worse) but you don't care

The biggest relief I have gotten is from acupuncture. Many will nay say it but the first time I went, I slept through the night for the first time in almost 10 years.

I have been going now for over 3 years and have told my doc if she goes back to Mongolia, I am going with her!

[Nite Owl]

5. I have a friend who is on Lyrica

and it has made a huge improvement in her life. Weight gain is a problem with it and I haven't tried it yet because of that side effect. My friend did put on about 11 lbs in about 2 months.

[Digit]

6. Have you considered a mattress that might help?

I admit I do work for Select Comfort which has the Sleep Number bed which will contour to your body, easing pressure points on your body (hips and shoulders) while supporting areas which need support.
We get people all the time coming in with Fibro and finding some relief. It is not a cure-all, and I don't think there is anything out there which is a cure-all at this time, unfortunately.

If you DO check it out, you will need to have at least the 5000 model (IMO) to provide some pillowtop in addition to the baffled air chambers beneath to relieve those painful pressure points.

See if you might find others who might have mattresses (of any nature), that might help with your condition.

I have arthritis in my hips and my old traditional (name brand) coil mattress was killing me. Since I am a side sleeper, I now sleep through the night as my Sleep Number bed contours to my hips perfectly.

I also have osteoarthritis, so I understand being in pain.

I have no knowledge of the benefits of other mattresses, so do your homework.

Hopefully, this will make allow one area of your life to be relatively pain-free.

Best of luck!

[pnwmom]

10. I found a cure-all, but it's not a cure-all for everybody, just for some of us.

When I went on a gluten-free diet because of G.I. symptoms, all my fibromyalgia, restless legs, etc. disappeared.

More at post #9, below.

[pnwmom]

9. I used to have fibromyalgia, restless legs, jerking legs, painful nerve spasms in

my legs, and hands that sometimes went numb -- along with years of IBS, heartburn, and reflux.

Then the IBS progressed to involve intestinal bleeding.

Finally, the doctor diagnosed gluten and lactose intolerance, and I reluctantly went on the diet.

Within a few days, all of the G.I. symptoms went away, like the doctor expected they would.

Within a week, all of the other symptoms disappeared -- a wonderful, unexpected bonus! And after a couple of years, I was able to eat cheese again without having problems, because going gluten-free had healed my intestines.

(This was years ago, and the only time I had a resurgence of the restless legs, etc., was when I started drinking diet drinks with aspartame. That stuff might be safe for some people -- maybe -- but it sure was bad for me.)

During the last ten years, a number of researchers have discovered that gluten sensitivity can cause many more problems besides the typical digestive disorders, including liver problems and neurological disorders. Also, if a person with gluten sensitivity continues to eat gluten (as many do, if they're not bothered by symptoms), they are at much higher risk for a host of autoimmune diseases and also for a type of lymphoma.

BUT DON'T TRY THE DIET until you've had the blood tests for gluten sensitivity, including tests for anti-gliadin antibodies (there are several tests for gluten intolerance, but the ones for anti-gliadin antibodies are most closely linked with neurological symptoms such as you describe). The tests won't give accurate results unless you are actually consuming gluten when you have them. Then, if you're positive, you can go on the diet -- but you have to be scrupulous, because even a tiny amount of gluten can trigger symptoms. (If you're negative, you can still try the diet but, again, you won't know if the diet works unless you are really careful.)

[OhioChick]

11. Lyrica seems to be the same as Neurontin

I tried it and it didn't do a thing for me.

Hang in there....

[Warpy]

12. I was up until 2 AM

with that feeling that I was recovering from an attack with a baseball bat. I suppose I could have gotten up and swallowed some Ultram and Flexeril, but I hate to waste the former on sleep and I hate to spend the following day zoned out from the latter. Ultram is how I function during the day.

Things always get bad this time of year with the change of seasons.

Tonight I will just take the drugs.

[OhioChick]

13. I know your baseball bat analogy all too well....

Unfortunately, physicians say that I'm "overly-sensitve" to meds. Doesn't give me many options.

[Warpy]

14. It's all I can think of

because mine feels for all the world like the bruising I've had after a traffic accident or a bad fall. Since it's all over my bod, I say it's like I was worked over with a baseball bat.

I swallowed the Flexeril an hour ago. Maybe I'll be fully awake by noon.

[hyphenate]

15. None of us is geared the same

and what works for someone else could be useless to someone else.

I haven't tried Lyrica--my doctor (who has left the hospital staff to move to Oregon) said we should keep that option open. It doesn't matter too much, because the Neurontin works for me. But it's not alone. I've got several things which might not seem to do much good, at least not on their own, but combinations seem to help.

Was on Naproxen (aka Aleve, Naprosyn and Anaprox), but for me it was useless. What DID help me is a lesser known NSAID called Mobic, aka Meloxicam. Please--I urge everyone to check it out! And not only that one, but others in the NSAID category. What doesn't work for one might work excellently for another. The only trouble I have with the meloxicam is the stomach irritation, but I've been on Protonix for my stomach, and it negates that side effect nicely. However, the pain relief is almost miraculous. I wake up in the morning without everything--and I do mean everything--hurting. I haven't been able to do that for quite a few years.

I'm also on Cymbalta right now. I was on Effexor, which worked fine, but the Cymbalta has the added bonus of helping fight the peripheral neuropathy from the diabetes. Since they're both in the same class of drugs, there were no withdrawal symptoms.

Another medicine, amitriptyline, is given for depression, but it's also one of the oldest drugs given to people for fibro, and another use for it for a very long time is neuropathy.

I love getting a good night's sleep, but I'm ambivalent about taking Ambien (zolpidem) for it every night. I guess I can't consider it addictive, but I am dependent on it. On the nights I try to get a night's sleep without it, I stay awake until about 4 or 5 a.m. before I can sleep. Ridiculous--I hate having to depend on something that way, especially since I'm going to have to cut down on some of my pills, but some days it's not worth the aggravation.

Anyhow, if something isn't working for you, talk with your doctor about the other drugs which might help--and keep trying. Don't stop and say it's hopeless, because it isn't. I've had fibro for 15 years now, and finally I've hit on a combination that works for the fibro, and not having pain from it is great. I still have the neuropathic pain, which is okay as I'm learning to deal with it, but at least I can make it to each morning feeling a little better than it used to be!