Fibromyalgia help/questios

Do you take the cyclobenzaorine daily? I usually only take it during bad flares, but have pain every day but wasn't sure it was okay to take it daily. What supplements help you? I also have sleep issues so am tired every day. Thanks.

Hello Sue, We’re you told to avoid multivitamins? I will try that. I am currently taking Ketorolac 20mg - up to two times daily, plus a heating blanket, when I am bedridden and the pain is unbearable. If it becomes too much - I have my husband take me to my doctor for a 60mg injection of Toradol. It does help sometimes. If I wait too long, it’s not as effective. I feel like I have the worst case of the flu &
some swelling in my hands during a bad flare, also back pains. There should be more attention paid to patients with this disease. It is debilitating & life-altering. If it is so apparent to us physically on the outside, what does this illness do to us on the inside? Has anyone ever measured that? Our organs certainly have been somehow affected by each of these flares we
truly suffer through. I wish there was a better pain management system
for sufferers - we need to be able to get on with our lives and live. I’m so happy to be neat my grandchildren and my suffering is so upsetting to me. 🥺. Thanks for sharing and listening.

Oral ketorolac is really hard on the stomach. And Toradol injections is the same stuff, though not passing through the stomach. All of that is supposed to be temporary fixes, and I mean real temporary. What's the long term plan?

Good morning, this is used solely for a severe flare up. To keep me from becoming bedridden, no other medication has been successful. This regimen has been a godsend for me. It’s all I have, for any bit of relief at this point, due to other health issues that I have to take care of.

That's great that you know how to use it, and that it works for you. I had my own Toradol injections set, at home in Alaska, for a time. Doctors in American ER's should offer it more often to people who present for extreme pain. You are right, 60 mg is the right dose. Some nut told the ER's in the US that 30 mg is enough for what ails all people, all pain levels, and they shed even more people out into the cold without proper pain relief without opioids.

I think you mean cyclobenzaprine? I take 10 mg, 3 times per day, and have since (maybe) 2012. Seriously, when I go to bed early, and take my last daily dose early, once it wears off, I wake with major foot cramps that I can only make go away by getting out of bed and standing on my feet. It's not a controlled substance but there's some weird strange info out there, that it works only for 14 days. And garbage that it can be psychologically dependent. Tell that to those born with spasms. I've gone off it 3-4 times, mostly because we did a lot of travelling and I had trouble getting it refilled/rewritten a couple times. Every time, my leg would cripple up and the foot turn in. It's not a joke and that's not even beginning to describe the pain. I actually wait until 3 days off so that the ER doctors can see it for themselves. The next time some doctor gives me grief about refilling it, I'm asking for a referral to a Clinical Pharmacist to see if there are any other prescriptions (that I've not yet tried) which would also fight the spasticity. I have chemical allergies galore. The other drugs for it are baclofen and Tizanidine. Baclofen made me vomit until it was dry heaving until it finally wore off. Tizanidine made me fall asleep while I was still standing up and walking (no joke). But hey, one of those might work for you or they wouldn't have tried me on them, instead. I don't know about any others. While we were in the UK, a Pharmacist there told me they use Valium on people there, instead. I know, that's a bit weird.

I feel like crying after reading this. There is no excuse for doctors not following their patients closely enough to see their condition and true suffering. It comes down to a lack of empathy and compassion. The symptoms and pain are exhausting, life-changing.
My heart goes out to those who are struggling with this.

To be honest, many doctors dump patients that need "too much" care. It may not happen among the specialists who expect to spend a certain amount of time per patient with complex issues, but in my experience, it happens all the time with PCP's who said they are open to taking on new patients but that doesn't mean (in their minds) the patient that is in pain that needs being treated now, and 3 or 4 referrals, along with their Current Medications list being updated lots, and their Adverse Reactions List being full of past drugs already known to not be compatible. The more complex your case is, the less likely you are to find competent Primary Care, which is the backbone of getting good specialists. I've had Resident Doctors (I, in fact, have one now) graduate and move on out of town, and I've been gaslit in years prior by incompetent PCP's I should have had the sense to leave right away. Those things complicate one's medical care too. Not to be a "debby-downer" but when/if it seems the doctor and you are not communicating well, find another. Especially, if you are being harmed. There's good ones out there, sometimes we have to wade through the mud to find one. Healthcare systems with good reputations is likely half the battle and maybe even more than that. There's a reason Mayo is so well respected all around the whole world.