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Old 07-07-2014, 01:03 AM   #1
BeachMomma
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Fibromyalgia help

I felt silly asking this here, but I saw Rainy ask about help for her clogged sinuses and figured what the hell.

I was diagnosed with fibromyalgia about four months ago. We've tried several meds, but nothing seems to help. I specifically asked them not to go the narcotic route, but I'm ready to try even that. Ive been hurting non-stop for a week. Nothing helps. I've been using ibuprofen 800mg, tramadol, gabapentin, and flexeril (cyclobenzaprine), all to no avail. I can't stand it anymore.

Is anybody else dealing with anything like this, and if so, what have you found that helps the flare ups? Thanks in advance.
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Old 07-07-2014, 01:13 AM   #2
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I think it's really hard to find something for the pain for this. A relative of mine ended up using prednisone and now she's having a terrible time getting off it.

PS She does take two tylenol with codeine at night to help her sleep.
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Old 07-07-2014, 01:21 AM   #3
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Have you tried Cymbalta? It's a serotonin inhibitor, commonly used for Fibromylagia, pain and anxiety.

I was on Cymbalta for anxiety for a period of around 7 months about a year after my daughter died. It worked a treat and had few side effects while on it. Coming off it was rough (really rough) but if it helps you it's worth it in my opinion.
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Old 07-07-2014, 01:24 AM   #4
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I think it's really hard to find something for the pain for this. A relative of mine ended up using prednisone and now she's having a terrible time getting off it.

PS She does take two tylenol with codeine at night to help her sleep.
The cocktail I'm using now should make me pass out, but the pain is so severe that I can't sleep. Did the prednisone help her? What problems are she having when she tries to wean herself off?
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Old 07-07-2014, 01:29 AM   #5
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The cocktail I'm using now should make me pass out, but the pain is so severe that I can't sleep. Did the prednisone help her? What problems are she having when she tries to wean herself off?
The prednisone has been the only thing that has given her any relief for bone and tissue pain. But prednisone is not meant for long-term use. She's been going through a slow weaning process for several months. The last couple of weeks she's been having nausea and vomiting. A few days back she upped her prednisone and the nausea and vomiting went away immediately. But she's in her 80s, so it's possible her system can't handle the weaning process as well... I'm guessing.
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Old 07-07-2014, 01:40 AM   #6
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Have you tried Cymbalta? It's a serotonin inhibitor, commonly used for Fibromylagia, pain and anxiety.

I was on Cymbalta for anxiety for a period of around 7 months about a year after my daughter died. It worked a treat and had few side effects while on it. Coming off it was rough (really rough) but if it helps you it's worth it in my opinion.
Bless your heart, Rainy, no mother should ever have to go through that. My PA wants to try cymbalta if the Zoloft doesn't work, so that's probably the next step. I need something more immediate for pain relief. I will be texting my doc in the morning to do something. Anything. I've missed four days of work already in this pay period! And I work 12 hour shifts so that means my check will be less than half of what it should be.

I'm considering going to a chiropractor and/or massage therapist, but a simple, gentle touch is excruciatingly painful.

Ironically, this flare up was caused by a visit to my doctors office. I had to wait almost two hours in a hard, uncomfortable chair, and I've paid for it ever since. I was hurting so much that I couldn't climb on the exam table. The PA came to help me up, and I almost yelled at her to please not touch me. The pain has been a 7-8 out of 10 consistently, and a few times I'd call it a 9-10.

It's absolute bullshit, and I'm sick of fooling with it. Right now, I couldn't even begin to tell you all the places that hurt. It's easier to tell you what doesn't hurt. I'm miserable.
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Old 07-07-2014, 01:44 AM   #7
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Oxycodone!!!!
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Old 07-07-2014, 01:45 AM   #8
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The prednisone has been the only thing that has given her any relief for bone and tissue pain. But prednisone is not meant for long-term use. She's been going through a slow weaning process for several months. The last couple of weeks she's been having nausea and vomiting. A few days back she upped her prednisone and the nausea and vomiting went away immediately. But she's in her 80s, so it's possible her system can't handle the weaning process as well... I'm guessing.
That could be the problem. She could try Zofran (ondansetron) to help with the N/V until she weans off completely.

Long term or IV steroid use can also cause iatrogenic (induced by medication) diabetes. That can cause N/V too. She might need to have her blood sugar tested.
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Old 07-07-2014, 01:50 AM   #9
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Oxycodone!!!!
Right now I'd take anything, but I'm really trying hard to avoid narcotics. This very minute, though, I'd sell my soul to the devil (if I had one left to sell. Lol) for a nice, big, fat dose of IV Dilaudid.
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Old 07-07-2014, 01:53 AM   #10
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That could be the problem. She could try Zofran (ondansetron) to help with the N/V until she weans off completely.

Long term or IV steroid use can also cause iatrogenic (induced by medication) diabetes. That can cause N/V too. She might need to have her blood sugar tested.
Interesting that you mention diabetes. She was recently diagnosed with it. (She's a retired nurse). Fortunately, she has a doctor who doesn't quibble or refuse to prescribe the codeine med for bedtime, because if she didn't get that, she wouldn't sleep at all. I'm not sure why she hasn't tried zofran. It could be an issue of taking other meds for other health issues? Anyway, she's seeing her doctor about the prednisone issue soon.
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Old 07-07-2014, 01:53 AM   #11
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Right now I'd take anything, but I'm really trying hard to avoid narcotics. This very minute, though, I'd sell my soul to the devil (if I had one left to sell. Lol) for a nice, big, fat dose of IV Dilaudid.
Never heard of that but I know a m30 Roxycodone will take your pain away
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Old 07-07-2014, 02:00 AM   #12
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Bless your heart, Rainy, no mother should ever have to go through that. My PA wants to try cymbalta if the Zoloft doesn't work, so that's probably the next step. I need something more immediate for pain relief. I will be texting my doc in the morning to do something. Anything. I've missed four days of work already in this pay period! And I work 12 hour shifts so that means my check will be less than half of what it should be.

I'm considering going to a chiropractor and/or massage therapist, but a simple, gentle touch is excruciatingly painful.

Ironically, this flare up was caused by a visit to my doctors office. I had to wait almost two hours in a hard, uncomfortable chair, and I've paid for it ever since. I was hurting so much that I couldn't climb on the exam table. The PA came to help me up, and I almost yelled at her to please not touch me. The pain has been a 7-8 out of 10 consistently, and a few times I'd call it a 9-10.

It's absolute bullshit, and I'm sick of fooling with it. Right now, I couldn't even begin to tell you all the places that hurt. It's easier to tell you what doesn't hurt. I'm miserable.
What about Lyrica? It's supposed to be very effective but has some side effects. Be careful if you use that. My mum was on it for 2 years for her back and I watched her slowly disappear. She was on the highest dose possible in the end, and just like the walking dead. .
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Old 07-07-2014, 02:01 AM   #13
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Acupuncture?
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Old 07-07-2014, 02:08 AM   #14
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Interesting that you mention diabetes. She was recently diagnosed with it. (She's a retired nurse). Fortunately, she has a doctor who doesn't quibble or refuse to prescribe the codeine med for bedtime, because if she didn't get that, she wouldn't sleep at all. I'm not sure why she hasn't tried zofran. It could be an issue of taking other meds for other health issues? Anyway, she's seeing her doctor about the prednisone issue soon.
That explains a lot. Nurses (retired and practicing) are the worst for self-diagnosing and self-treating. I can say that; I'm an RN.

Sometimes zofran will snow people, so they may be trying to be careful about that. Ask her if she tried it. She may want to ask her doc about it. It can be swallowed whole or allowed to melt under the tongue for more immediate effect.

How long has she had fibro? Was she able to work with it? The job is killing me. I'm working medsurg/tele right now, and I'm a zombie after a 12 hour shift. A very cranky zombie.
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Old 07-07-2014, 02:09 AM   #15
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Never heard of that but I know a m30 Roxycodone will take your pain away
I took that after a recent hospitalization. It knocked me OUT. I'm a cheap date. Lol
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Old 07-07-2014, 02:11 AM   #16
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What about Lyrica? It's supposed to be very effective but has some side effects. Be careful if you use that. My mum was on it for 2 years for her back and I watched her slowly disappear. She was on the highest dose possible in the end, and just like the walking dead. .
That's why we don't want to go that route. It can be nasty, and I have to be able to function safely at work.

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Acupuncture?
I'm considering that!
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Old 07-07-2014, 02:15 AM   #17
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I took that after a recent hospitalization. It knocked me OUT. I'm a cheap date. Lol
I take a couple every now and then they will help u if u don't abuse it gotta know what u doing
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Old 07-07-2014, 02:17 AM   #18
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That explains a lot. Nurses (retired and practicing) are the worst for self-diagnosing and self-treating. I can say that; I'm an RN.

Sometimes zofran will snow people, so they may be trying to be careful about that. Ask her if she tried it. She may want to ask her doc about it. It can be swallowed whole or allowed to melt under the tongue for more immediate effect.

How long has she had fibro? Was she able to work with it? The job is killing me. I'm working medsurg/tele right now, and I'm a zombie after a 12 hour shift. A very cranky zombie.
She's had it for years, along with Raynaud's and arthritis, although Raynaud's and arthritis developed much earlier (in her 30s), not that I know if there's a direct link between any of these. She didn't develop Fibro until after she retired. I don't think 12-hour shifts are good for anyone, especially those with immune disorders.
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Old 07-07-2014, 02:20 AM   #19
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I take a couple every now and then they will help u if u don't abuse it gotta know what u doing
As I said earlier, I'm an RN, but one of the problems with strong narcotics is that you forget when you took it last. I give it to patients all the time at the hospital. They'll try to get me to give it more frequently than it's ordered. They always say well at home I take it every three hours. That may be, but the doctor ordered it every six hours. You can't have another dose for three more hours.

I'm definitely gonna text my doc in the morning and ask for something stronger tho.
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Old 07-07-2014, 02:25 AM   #20
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I thought I had torn or separated a ligament or something but the doctor said it was fibromyalgia. My fibromyalgia lasted 2-3 months at a time. It's happened twice and a year between each instance.

I used the meds he prescribed I forget the name... it was heavy pain meds. It was one of those pain meds that you can get addicted to. Anyways, it didn't work. I ate them like candy and never got addicted but never felt the pain lesson either. I always thought maybe he prescribed me placebos or something.

Mine, spread out and got worse with time. It started in the top of my back on the left hand side, then spread down to the middle of my spine and up to the base of my skull. sometimes working down my arms to my elbows. It affected my joints and muscles, which I thought maybe the doctor had misdiagnosed it or something.

I eventually found maximum strength icy/hot helped relieve the pain for a couple hours. Considering where the pain was localized and since I live alone, I had to come up with a trick to applying it. I used a claw back-scratcher and a roll-on applicator of icy/hot. Taped the one to the other and I was in business.

I eventually figured out it was stress related, that it had something to do with the memory foam bed I had purchased a couple months prior to the first bout. It also had to deal with my position when I lay on my bed. I figured it had something to do with my bed because I noticed if I lay flat on my back without any pillows, and managed to get to sleep, when I woke up, I felt a moment of no pain and thought it had gone away. Minutes later it was back (no pun intended). It didn't always work like that, but... yeah, anyway. I also noted when I stood, or sat up, the pain was less, but it didn't go away until I changed my mattress.

I eventually switched to a non-memory foam mattress, I monitor my stress levels, make sure I don't hold the same position (especially when working on my computer) and haven't had a recurrence in over 2 years.
:knock on wood:
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Old 07-07-2014, 02:28 AM   #21
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She's had it for years, along with Raynaud's and arthritis, although Raynaud's and arthritis developed much earlier (in her 30s), not that I know if there's a direct link between any of these. She didn't develop Fibro until after she retired. I don't think 12-hour shifts are good for anyone, especially those with immune disorders.
Was it osteoarthritis or rheumatoid arthritis? RA and fibro are related, along with Lupus and multiple sclerosis. My doc wants to test me for MS just to be certain.

12 hour shifts suck ass. It's great having four days off, but I'm toast after a shift. Even when I was healthy, it took a full day to recover. I don't recover at all now.

My neck and shoulders are spasming so hard right now that you can feel a noticeable temperature difference.

Which reminds me...when I was puppy sitting for B3 and Gracie, I used their hot tub every day. I should go back and check on the dogs again. Lol
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Old 07-07-2014, 02:37 AM   #22
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I thought I had torn or separated a ligament or something but the doctor said it was fibromyalgia. My fibromyalgia lasted 2-3 months at a time. It's happened twice and a year between each instance.

I used the meds he prescribed I forget the name... it was heavy pain meds. It was one of those pain meds that you can get addicted to. Anyways, it didn't work. I ate them like candy and never got addicted but never felt the pain lesson either. I always thought maybe he prescribed me placebos or something.

Mine, spread out and got worse with time. It started in the top of my back on the left hand side, then spread down to the middle of my spine and up to the base of my skull. sometimes working down my arms to my elbows. It affected my joints and muscles, which I thought maybe the doctor had misdiagnosed it or something.

I eventually found maximum strength icy/hot helped relieve the pain for a couple hours. Considering where the pain was localized and since I live alone, I had to come up with a trick to applying it. I used a claw back-scratcher and a roll-on applicator of icy/hot. Taped the one to the other and I was in business.

I eventually figured out it was stress related, that it had something to do with the memory foam bed I had purchased a couple months prior to the first bout. It also had to deal with my position when I lay on my bed. I figured it had something to do with my bed because I noticed if I lay flat on my back without any pillows, and managed to get to sleep, when I woke up, I felt a moment of no pain and thought it had gone away. Minutes later it was back (no pun intended). It didn't always work like that, but... yeah, anyway. I also noted when I stood, or sat up, the pain was less, but it didn't go away until I changed my mattress.

I eventually switched to a non-memory foam mattress, I monitor my stress levels, make sure I don't hold the same position (especially when working on my computer) and haven't had a recurrence in over 2 years.
:knock on wood:
Yay! I'm happy for you. Thanks so much for sharing that. I have a fairly new memory/gel mattress topper. I'll take it off tonight and see if that makes a difference. I started using it to help with nighttime hot flashes. If that's what's causing my pain, it can go to the dumpster.

Mine started with my hands and feet being sensitive to touch. If my boyfriend even gently touched my hand, I'd scream in pain. I couldn't even sleep under a sheet because it hurt my feet so much. Scratch that. It actually started with belly pain. I was I'm the hospital twice; they thought it was diverticulitis. Now it's almost everywhere. It's easier to say what doesn't hurt. If I had a driver, I'd be in the ER right now begging for high octane narcotics.
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Old 07-07-2014, 02:38 AM   #23
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Fibro is no joke, it fucking hurts.

When you were little and had an injury were you ever told by a sarcastic adult that they could hit your toe with a hammer and make you forget about your booboo? (Or was I the only one raised by horrible sadists?)

I say this because that theory is something I use. In particular, being flogged when I just cant take the fibro pain any more. I have fibro along with several other things and this helps for now but I had to also build up my pain tolerance in general. No meds help that leave me functional for work, school, or parenting so I had to try something else. Flogging tips the scale and kind of makes the nerves be quieter for a few days. Dont get me wrong, I'm not talking breaking skin or bruising. Endorphins get released and I get a break.

Another thing is rest, its both good and bad for you. The longer you rest the harder it is to get moving again. Some days I have to push myself past tears because I'm just so tired of being sick and tired but if I keep my routine relatively the same the flares come farther apart.

Cyclobenzoprine used with fibro is only to be taken when you sleep to help you get deeper, more recuperative sleep BUT using it, consistently, for longer than 6 months can increase depression.

I have not heard of any drug or combo that universally helps every fibro patient, nearly all that I have spoken with have had to find out what combination of meds and extra things to help.

You stated that sitting in that waiting room made you flare, at least you are learning what your triggers are. Use that information. Stand up in the waiting room, walk around. Tell them you are going outside if its cold to warm up. You are your only advocate for your health and you must do what ever you can to keep yourself healthy.

-cheers-
I hope you find relief soon.
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Old 07-07-2014, 02:39 AM   #24
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As I said earlier, I'm an RN, but one of the problems with strong narcotics is that you forget when you took it last. I give it to patients all the time at the hospital. They'll try to get me to give it more frequently than it's ordered. They always say well at home I take it every three hours. That may be, but the doctor ordered it every six hours. You can't have another dose for three more hours.

I'm definitely gonna text my doc in the morning and ask for something stronger tho.
People try to get four a days because they are junkie or they try to sell en they cost 25$ 30$ a pill on the streets
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Old 07-07-2014, 02:54 AM   #25
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Yay! I'm happy for you. Thanks so much for sharing that. I have a fairly new memory/gel mattress topper. I'll take it off tonight and see if that makes a difference. I started using it to help with nighttime hot flashes. If that's what's causing my pain, it can go to the dumpster.

Mine started with my hands and feet being sensitive to touch. If my boyfriend even gently touched my hand, I'd scream in pain. I couldn't even sleep under a sheet because it hurt my feet so much. Scratch that. It actually started with belly pain. I was I'm the hospital twice; they thought it was diverticulitis. Now it's almost everywhere. It's easier to say what doesn't hurt. If I had a driver, I'd be in the ER right now begging for high octane narcotics.
For the record, I don't know why it went away the first time. It had something to do with the position I was in when I lay down. I bruise my coccyx too easily when I sit for long stretches at a time. Donuts don't help. So I lay down on my bed to work on my computer or just play games and write.

When I started sleeping on my couch, I found the pain was less. The pain didn't go away like that, :snaps: but it started to get less and then eventually it went away altogether.
:knocks on wood:
Like I said, I got a new mattress and... okay, enough beating the dead horse LWulf.

I forgot about my skin being hot to the touch too. My long term memory isn't what it used to be...
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