I'm looking for support and comfort
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Marylyce posted:
I seem to be in a flare again, since the begining of March. I am back on Lyrica only 100-150 at bedtime. Does anyone take it during the day? I prefer taking during the day and will try that since it doesn't seem to make me that tired. Taking it at night seems to interact with a sleeping pill so I take 1/2 sleeping pill only when I can't sleep which seems to be every night. I cut back on pills. Lorazepam seems to calm down the nervous system a little, and pain. I am so desperate for relief that I have gone to acupunture, a massage, trigger point injections and PT all this week. In Feb. my pain was gone and we got in a little trip. Thats how good I felt. Wrestling with the flare pain is like wrestling with 50 poisonous snakes. I hurt almost everywhere. Please tell me that you have been in this much pain! I just don't understand the flares. My pain Dr. said weather and posture. I joined the NFA for support too.Someone please talk to me and comfort me.
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Anon_10089 responded:
I am sorry you're having such a bad flare. I've had a pretty killer headache for a few days, now, and am having a hard time seeing the light at the end of the tunnel.

It's so hard in the midst of a flare to focus on the fact that you probably will feel better (better, not perfect!). I struggle with looking forward and sometimes the pain is so bad, all your energy goes to surviving.

I guess try to remember those better times and hope that you'll feel better again. Also, I find it helpful if I can accomplish even just one little thing everyday--even if it's just showering or making a meal. Having a purpose can help.

I hope your flare breaks and you can feel a little better soon!
 
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1wareaglefan responded:
Hey, Marylyce, I've missed you! I haven't been on here much lately, but I'm coming back on everyday. I'm sorry to see you're having such a horrible time. Yes! I've hurt like that. In fact, most days I hurt like that.

I wonder if the vacation set off the flare? I don't know. I don't have it all figured out, but I do know that more activity, more stress, weather.....so many things can set it off. I seem to stay in that mode. Lately my legs and feet have been the worst.

Are you on good meds? Does your doctor give you anything for pain? Maybe get in touch with him and tell him whatever you're taking isn't helping with this flare. Maybe he'll give you something stronger to have on hand for these times. I have to take my pain meds everyday.

Well, I hope knowing that others are out there understanding what you're going through is helpful. I hope I'll "see" more of you on here.

Take care....Elizabeth
 
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painfullyexhausted responded:
I think the majority of us have been where you're at right now so we understand and hopefully can help. I just recently had to change up my meds, again, because I'm going thru a flare like no other. Like you, I don't sleep well, most nights not at all. Sometimes this is due to pain and others because my mind just won't shut done. We have to sleep or our bodies won't recover. Not that easy though. You may need to tweek your meds with the help of your doctor. It's so hard for us because other's just don't get it, they can't see it or feel it so they ignore it. Sometimes this includes our doctors so if you're having problems then make him/her listen to you and help you get thru this. I know what it feels like to not want to get out of bed and face another day, it seems impossible and can be so depressing. I know what it's like to cry yourself to sleep (for an hour), I know how it feels to just want to give up, that's what I'm dealing with right now. I hope that you have a good support system at home or a close friend that you can lean on. My husband has been my saving grace, my best friend, my hero, and my punching bag. I also find it very helpful to read what others are going thru or what they do to help themselves or get on here and just vent. We are the only ones that can honestly say "I understand". I truly hope that this flare ends soon for you. It's very hard to see anything positive when we feel this low but you have too, as do I. Take hot baths with lavender oil or bubble bath, use a heating pad, anything to relax your mind and body. Be cautious with deep tissue massage because it can make you feel worse due to the release of toxins. Hydrate yourself. Talk to your doctor. Tweek your meds. Try everything just don't over do it or expect a healing because you'll only be disappointed. We get better, not healed. I hope that you feel better soon. Best of luck.
 
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kgsmiles responded:
I am so sorry you are feeling so bad. I understand where you are coming from. I think this may be the worst flare I've had in quite a while. My precious husband bought flowers for me last weekend because I've felt so bad the past few weeks. I wish I could make it all go away but alas I am struggling also. I cope by trying to do something good for somebody and also for myself. Keep looking for the joy in life, a puppy, a pretty flower, nice weather, whatever it takes. live joyfully!
 
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sadecakes responded:
Marylyce, I've been in a flare for the last several weeks as well. This is the first time I've felt this much pain since diagnosed. I've read others' descriptions of how poor they feel and I'm not looking forward to it. Fibromyalgia manifests itself differently w each of us, never the less, it's scary with each new development. During this period of discomfort that I've had, it's also been difficult. I'm normally pretty tolerant, patient and even tempered but with the pain I've been a different person. It's hard to have this much pain and nothing providing relief! I also take Lyrica but it's just not enough during a flare. So, I'm sorry, I don't know how to guide you as to how to feel better. I'm figuring it out too. But I can tell you that you're surely not alone! I hope that's enough comfort.

Susan
 
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xperky responded:
Marylyce, you sure have tried a lot to fight your pain this week! I think I would drop from all the coming and going. I hope at least one of those remedies kicks in soon.

For me, a few days of lighter activity seem to help a flare. Time in bed and on the couch with my crochet hook are healing. I expected to feel better with the Spring sunshine and warmer temps, but am disappointed there.

It seems good that you are aware of how the Lyrica interacts with your other meds. Hopefully you will figure out a good mix of medicine and rest and soon be over this flare. Flares can be long or short and upsetting in either case.

Hugs and comfort out to you.
With Compassion,
Margaret
 
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michellemybell1972 replied to xperky's response:
Hi Marylyce. This is my first time posting here. I am so sorry you feel so bad. I guess the change in the weather makes us all feel really bad. I am not on Lyrica and never have been, so I cannot help you there. I take Cymbalta, which seems to help me along with my my zonisamide (anti-seizure med) Norco and my new med Morphine 15 mg ER 2 daily. I started the Morph. last Friday and I have not been in any pain at all. I thought for sure it was going to make me loopy and groggy, but it doesn't. It is a very small dose. Maybe you can talk to your pain doc about a different kind of pain med.? I know all docs are different, but my pain doc has been my saving grace. I also have trouble sleeping, so that is the only thing I can complain about right now. I have been fighting this Fibro demon for yrs now.
I hope you can find some relief soon and the comfort you need to make you feel better.

Big hugs~
Stephanie
 
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fibroinsd responded:
Just wanted to send a little butterfly gentle hug...

hope today was better than yesterday and that you got some rest..

cece
Let's put the fun back in dysfunctional !- Mary Englebright
 
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2PAINGOAWAY responded:
I FEEL YOUR PAIN I'VE SUFFERED FOR 10 LONG YEARS, PROBABLY LONGER THAN THAT. I'VE NEVER SEEN IT WRITTEN THAT WAY( 50 POISONOUS SNAKES:) IT'S SAD BUT VERY, VERY TRUE. DURING FLARES IT DOES SEEM LIKE YOU'RE THE ONLY ONE IN THE WOULD DEALING WITH THE DEEP, DEEP ACHES. MOST PEOPLE WON'T FEEL THIS TYPE OF PAIN IN THERE LIFETIME, MOST PEOPLE COULDN'T EVEN HANDLE IT! I'VE HAD 2 SONS BOTH WEIGHING 8LBS NATURALLY, NO PAIN MEDS...AND THAT PAIN WAS 100% EASIER, BETTER THAN THE FIBRO PAIN. PAIN REALLY CHANGES YOUR MOOD, AND ATTITUDE TOWARDS LIFE. THAT IS MY BIGGEST ISSUE, I HAVE TO CONCENTRATE DAILY SO AS NOT TO BE SO ABRASIVE TOWARDS PEOPLE, I DON'T INTEND TO BE MEAN,OR SOUND GRUFF, BUT @ TIMES I KNOW I DO. I'M UNAWARE IF YOU ARE A RELIGIOUS PERSON OR NOT, BUT IT TRULY HELPS ME TO ENGAGE IN PRAYER. ALSO I REALLY LOVE TO SING, SO I LISTEN TO MY FAVORITE SONGS OFTEN. SOMETIMES IT'S THE LITTLE THINGS, LIKE A NICE HOT BATH OR A MANICURE...(MY HUSBAND HAS LEARNED THE ART OF NAIL PAINTING:) DO WHAT MAKES YOU FEEL HAPPY, EAT WHAT YOU LIKE, AND ENJOY EACH DAY. ONE DAY AT A TIME.
 
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2PAINGOAWAY replied to painfullyexhausted's response:
EXHAUSTED, I TRULY FEEL YOUR PAIN! IT'S SO SAD THAT WE MUST ENDURE SUCH GUT WRENCHING PAIN LIKE THIS, YET STILL THERE IS NO REAL RELIEF FOR US. INITIALLY I THOUGHT OF FIBRO AS A CATCH ALL OR UMBRELLA DISORDER. I DO KNOW THAT OUR NERVES ARE HYPERACTIVE, BUT WHAT CAN WE DO ABOUT IT? SURE THERE ARE DRUGS THAT HELP WITH NERVE PAIN...BUT THE SIDE EFFECTS ARE USUALLY WORSE THAN THE INITIAL PAIN. MY PROBLEM IS THAT I HAVE MULTIPLE DIAGNOSIS. I HAVE NEUROSARCOIDOSIS. BASICALLY, IF YOU HAVEN'T HEARD OF IT, IT'S TINY NODULES THAT DEVELOP ON MAJOR ORGANS WITHIN THE BODY. MY MD WAS TREATING ME WITH HIGH DOSES OF PREDISONE. BUT LIKE SO MANY OF US, WE DON'T TOLERATE CERTAIN MEDICATIONS. I'M IN AN UP ROAR, BECAUSE WHEN MY BODY BEGINS TO "ACT UP" I DON'T KNOW AND NEITHER DO THE DRS USUALLY, WHICH CONDITION THEY'RE REALLY TREATING. FRUSTRATING ON TOP OF ALL THE PAIN RIGHT? WE COULD REALLY BENEFIT FROM A VOICE THAT SPEAKS TO THE AGONIZING PAIN OF THIS DISEASE! MAYBE THE CHANGES IN AMERICAN HEALTHCARE WILL POSITIVELY BENEFIT US.
 
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RosemarieD responded:
Hi Marylyce,


I take 150 mg of Lyrica in the morning and 150 mg after supper in the evening. It really is helping me. I went down to 100 mg and I could really tell the difference. I would recommend you ask your doctor if you can go on it twice a day 150 mg. That is actually the standard dose. Good luck and I hope you start feeling better.

Baylee's mom..