Fibromyalgia help

BeachMomma

Sweet n Innocent
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Jun 27, 2012
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I felt silly asking this here, but I saw Rainy ask about help for her clogged sinuses and figured what the hell. :D

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.
 
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.
 
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?
 
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.
 
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. :(
 
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.
 
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.
 
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.
 
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
 
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. :D

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. :D
 
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.

Acupuncture?

I'm considering that!
 
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. :D

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. :D

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.:(
 
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.
 
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:
 
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
 
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.
 
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
 
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...
 
Cannabis?

Seems almost a ridiculous idea, really, given the debilitating pain of fibromyalgia... But, it's an option many have sworn by... worth some research... lot's of advancement in the field these days... if you can get medical cannabis where you live. Maybe get your doc's opinion on it... I dunno. Damn. I wish I could take your pain away.
Here's a couple of documentaries if you're interested...
Medical Cannabis & Clearing the Smoke...
Best to you.
 
I'm sorry, Beachy. I have a friend in a similar boat as you. She suffers RA, fibromyalgia, and migraines. The only thing that has given her any long-term relief is doing anything she can to reduce inflammation. She has switched to a whole foods diet, eliminating anything processed. She practices tai chi for joint movement and get her adrenaline under control. Old school, we used to give plain old guaifenesin and patients reported good results. When research could not prove cause/effect, we stopped prescribing it.. but it might be worth looking into.

Blessings.. and prayers for a little rest
 
I'm sorry, Beachy. I have a friend in a similar boat as you. She suffers RA, fibromyalgia, and migraines. The only thing that has given her any long-term relief is doing anything she can to reduce inflammation. She has switched to a whole foods diet, eliminating anything processed. She practices tai chi for joint movement and get her adrenaline under control. Old school, we used to give plain old guaifenesin and patients reported good results. When research could not prove cause/effect, we stopped prescribing it.. but it might be worth looking into.

Blessings.. and prayers for a little rest

I have those conditions as well, and a good diet, reasonable amount of exercise and managing stress are critical for me. On diet, caffeine use has been linked to increased fibro symptoms, so if you're hooked on that, wean yourself off ASAP and switch to decaf drinks with no artificial ingredients. I limit myself to a cup of regular coffee or tea maybe one or two mornings a week. The same goes for restricting alcohol; I'm fine having a beer or two on summer days, but I don't drink at all the rest of the year. I drank too much at a 4th of July party, and while I didn't have a hangover the next day at all, my fibro flared. Cal/Mag/Zinc and turmeric are critical supplements with proven fibro and anti-inflammatory benefits.

The exercise part feels counterintuitive because of the existing pain and fatigue, but I had to put my swimming on hold a month ago due to acute injuries from a fall, and boy am I paying the price for it! Tai Chi, gentle yoga and water exercise are all fibro-friendly forms of exercise.

That's an interesting tidbit about the guifenesin, GLG. My chiropractor mentioned that her doc uses it off-label for chronic pain, so I may see about giving that a try. It's widely prescribed here for kids with neuro conditions like ASD and ADHD, so it's a med I've researched extensively and consider to be far better WRT side effects and such vs. other drugs for neurological and chronic pain conditions.

I also find chiropractic adjustments and therapeutic massage to be very helpful, even though they can be painful in the moment. Find practitioners who have a ton of experience with fibro patients. Acupuncture can provide short-term relief for me. And cervical facet and trigger point injections done by really skilled interventional pain specialists have been helpful in relieving the spasms and inflammation that have plagued me for many years. Fair warning: it took 1-2 weeks for me to "recover" from those injections; my body saw them as an attack and overreacted with increased pain and flares, so now I know to schedule such procedures only when I have adequate time to deal with that recovery phase.

I go through about 3 heating pads a year because I use them almost constantly when I'm sitting at home. Cold therapy helps with injuries and joint pain, but heat is much more effective for my muscle spasms and pain. Similarly, I can't tolerate swimming in water that's not warm enough, and being outside in cold or very hot weather increases my pain.

Meds:
Tizanidine gives me better relief than cyclobenzaprine. The latter works OK, but is so long-acting for me that it makes me a zombie until about noon the next day. :rolleyes: Tizanidine only affects me for about 6 hours, which is perfect for helping me get to sleep and not do too much more damage while I'm sleeping. Poor sleep = more pain, for sure!

Provided you don't have a history or risk factors for addiction, opioid analgesics can be a life-saver. It sounds like it might be wise for you to at least talk to your doc about a "rescue" script. Just having something that does relieve the pain some when it gets really bad can alleviate stress. I don't know about you, but during a flare or acute event, my pain becomes an awful cycle of pain>stress>more pain>more stress...

And on that note, I find occasional treatment with a small amount of xanax to be helpful when I'm in that awful cycle, especially during the day when I need to be awake and at least semi-functional. Again, see if your doc thinks a rescue script might prove helpful.

I NEVER thought I'd say this, but medical marijuana has changed my life. Yes, the right amount of THC can be helpful for pain and sleep, but I've found far more value in high-CBD strains. CBD is a powerful non-psychoactive compound with all sorts of anti-inflammatory, neurological and other benefits. Hopefully scientists will continue to research it and CBD medications will become increasingly available. I infuse high-CBD medical cannabis into coconut oil, and even a small amount in the evening is positively amazing at helping my inflammation and pain without making me high or anxious.

Because you're a nurse, I realize ingesting medical cannabis is probably not an option you can consider. If topical use of an infused oil IS an option, you might find some relief going that route. My massage therapist actually uses cannabis-infused oil on her clients who have their medical recommendations, and I've found topical use to be helpful for joint, muscle, trauma-related, skin and even oral and throat pain. I don't know what your state and job allow, but topical use might be worth discussing with your doctor, getting a recommendation for, etc.

All in all, it sounds like you need to get the pain and sleep issues from this flare under control ASAP, then start trying some other treatments. The right meds are helpful, but lifestyle factors and other treatments are really critical. Keep a diary to pinpoint stressors (including your menstrual cycle), effective treatments and specific pain and flares. Try other treatments, and it sounds like you might need to see if you can modify your work schedule, at least until you're more stable and have found some other treatments that work for you. Give yourself the time to find your own best course, be positive and smile/laugh as much as possible. This major flare will pass much quicker if you take really good care of yourself, but don't allow yourself to overdo it when it does or on your better days. That's probably the hardest lesson I've had to learn over the years; it's so easy to take advantage of those better days with a marathon of chores and errands, yet doing that sends me right back into severe pain or a multi-week flare, so I really have to moderate my expectations and activities every single day.

Here's to finding out what works more quickly, more sleep and less pain and fatigue. :rose: :kiss:
 
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