Fibromyalgia -- Need help on how to handle severe pain

Posted by ripley @ripley, Jun 14, 2023

I was told by a Rheumatologist last year that I have Fibromyalgia. She referred me to my GP for treatment, but he doesn't know anything about this disease. I need advice on how to handle the pain which is sometimes so severe and lasts all day. It usually eases some by bedtime, but lately I've been waking up about 3:00 AM with bad legs pains that keep me from falling back asleep. Since this started 18 months ago, the pain has gone into remission for a few months and flares up again for a couple months. The insomnia and other issues remain. My latest flare started about 5 weeks ago. The only meds I'm taking are Tylenol, which doesn't help, and sometimes Cyclobenzaprine at night. I am afraid of Cymbalta after hearing horror stories about terrible withdrawal issues when wanting to discontinue it due to it's side effects or when it stops working. It seems like all the drugs used for this disease have withdrawal problems. Any help would be appreciated.

Interested in more discussions like this? Go to the Fibromyalgia Support Group.

@marye2

I can't take Tramadol--gastric distress led me to rename it "damn-it-all. Constipation is always an issue with some regular prescriptions. No problem at a low dose for me. My NSAID worked great, but had some bad kidney numbers, so had to move on. A daily walk, fiber and check with your doctor about ducolax, etc. I am really working on being better hydrated all around, too

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I take a cap of miralax in my coffee every day. It works if I don’t skip a dose

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I've been on Cymbalta for years, it's the least of my worries. Although I've been on many antidepressants through my life. I have gotten off of it before (80mg) and there are ways to do it properly to lessen withdrawl (using another antidepressant to help wean off or taking half of a capsule when you get down to 20mg). It's worth trying, but keep in mind that the first 2 weeks might be difficult, for me when I try a new antidepressant it gives me anxiety. This is not common. But I stuck through it and it helped my mental health for 3 years. I think it may be helping fibromyalgia pain to some degree.

For me, 40mg cymbalta, 150mg lyrica, 50mg x 2 tramadol provides some relief but was recently diagnosed with RA so none of those help with the joint pain.

My psychiatrist and therapist both recommended trying Low Dose Naltrexone when I only had the Fibromyalgia diagnosis. Maybe that would be a good option to try for you? It's newer but has been showing promising results. I am thinking about switching from Tramadol to LDN.

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@jafjelstad

I've been on Cymbalta for years, it's the least of my worries. Although I've been on many antidepressants through my life. I have gotten off of it before (80mg) and there are ways to do it properly to lessen withdrawl (using another antidepressant to help wean off or taking half of a capsule when you get down to 20mg). It's worth trying, but keep in mind that the first 2 weeks might be difficult, for me when I try a new antidepressant it gives me anxiety. This is not common. But I stuck through it and it helped my mental health for 3 years. I think it may be helping fibromyalgia pain to some degree.

For me, 40mg cymbalta, 150mg lyrica, 50mg x 2 tramadol provides some relief but was recently diagnosed with RA so none of those help with the joint pain.

My psychiatrist and therapist both recommended trying Low Dose Naltrexone when I only had the Fibromyalgia diagnosis. Maybe that would be a good option to try for you? It's newer but has been showing promising results. I am thinking about switching from Tramadol to LDN.

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I recently started on LDN. One day at .5mg and had more pain so pharmacist recommended reducing to 1/4 of the pill, or .125mg for a few days. When I increased to .250mg, I had severe insomnia. After two days, I stopped the LDN to see if my insomnia would improve. It didn't, but I'm waiting to restart the LDN because I have surgery coming up in two weeks, and I'd have to stop it again one week before surgery. I'll try again after my surgery. I'm not taking any other drugs for fibro except for some CBN/THC gummies that I started 3 days ago, one hour before bed. They are helping a little bit with my sleep.

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@jafjelstad

I've been on Cymbalta for years, it's the least of my worries. Although I've been on many antidepressants through my life. I have gotten off of it before (80mg) and there are ways to do it properly to lessen withdrawl (using another antidepressant to help wean off or taking half of a capsule when you get down to 20mg). It's worth trying, but keep in mind that the first 2 weeks might be difficult, for me when I try a new antidepressant it gives me anxiety. This is not common. But I stuck through it and it helped my mental health for 3 years. I think it may be helping fibromyalgia pain to some degree.

For me, 40mg cymbalta, 150mg lyrica, 50mg x 2 tramadol provides some relief but was recently diagnosed with RA so none of those help with the joint pain.

My psychiatrist and therapist both recommended trying Low Dose Naltrexone when I only had the Fibromyalgia diagnosis. Maybe that would be a good option to try for you? It's newer but has been showing promising results. I am thinking about switching from Tramadol to LDN.

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I have fibromyalgia and take LDN. I find it works really well for me, but mostly for fatigue and not really for pain, so I don’t know that swapping tramadol for pain would be as helpful but at the same time there are others out there for whom it’s helped more with pain.

For me, pain from central sensitivity syndrome, POTS and inflammatory arthritis affects me more—the LDN was started to see if it would help with my fatigue (it did) and reduce pain sensitivity (not sure yet), but fingers are crossed.

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@delia74

I appreciate your taking time for your words of support, and for the info shared about the medications that you are taking. You share being sensitive to medications just as I am. I will look into the Tizanidine and Plaquenol to educate myself on those.
My husband and I were both patients of a rheumatologist (retired about 7-8 yrs ago😞) who was highly educated on alternatives to prescription medications, and he recommended Zyflamend as a means of addressing the inflammation that my hubby experienced with his pervasive rheumatoid arthritis. It is somewhat pricey but can be obtained for less on certain reputable online sites. Does help considerably. Like me, he doesn't want medications if there are warranted alternatives. About 5 years ago, at age 70, he experienced nausea-causing, crushing pain in his hands (also has osteoarthritis to complicate the matter and peripheral neuropathy), especially both thumbs and sides of hands near wrists (also knees and elbows). An orthopedist told him "Surgery will take care of your hands, specifically where you've lost all cushioning." He didn't want surgery. The new rheumatologist recommended Humira, which he also refused. Thankfully, these specific pain issues are not 24/7. He'll continue with Zyflamend and his fish oil supplements, and also avoids activities that will impact on those joints. I will share your info with him. It hurts me to see how he melts with pain whenever those areas are set off by even a slight action. He researched and found that applying Vicks on the affected areas (and covering with gloves, socks, or light bandaging to keep the ointment off clothing, etc.) amazingly brings relief😊. I detest Vicks so I'll use Blue Emu instead (no odor). With especially bad episodes, he'll apply Voltaren but uses it sparingly. I refuse to use Voltaren, based on what I learned through journals, medical sites.
Gracias again!

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I'm curious what you found out about Voltaren. I thought it could be used occasionally without many side effects and less GI issues that oral NSAIDs.

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In reply to ripley @ripley, Jun 14 9:44pm: I just read your post, and I will get back to you either tonight or tomorrow morning with info that I believe you will find helpful. I've had fibromyalgia for what seem like eons, so I do know what you are experiencing physically, mentally, and emotionally. Gotta go fix dinner so take care for now. 🌺

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ripley@ripley:
I am very frustrated and yes, upset right now, because I invested an hour in composing a detailed reply to your post. NONE of it uploaded, all I got was a blurred screen with a wiring arrow! Allowed it just continue while I went to shower, came down just now to find it still doing that, so obviously wouldn't work. Something at the Mayo end b/c my computer has no issues....So I turned it off. Puff! All that I wrote to you g-o-n-e....
I'm so sorry but my calendar and schedule just cannot permit wiggle room to rewrite and repost....
I'll see what I can at another time, but for now. I can't. Gotta go now.

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Hello to all of you that wrote in regarding their FIBROMYALGIA. I’ve been severely debilitated by FIBROMYALGIA for over 30 years. I’ve also been severely disabled from CFS/ME and CHIARI MALFORMATION as well. However to address your pain management questions for FIBROMYALGIA. After taking LYRICA for 2 weeks I became very suicidal one particular day out of absolutely no where. I didn’t experience any prior suicidal thoughts and the suicidal ideation I experienced came out of nowhere but was certainly very real and very serious. I stopped taking the Lyrica prescription at once and that was the end of my experience with that. I also tried CYMBALTA and did not have any good or favorable experiences with that medication either. Keep in mind, I tried a number of other medications prescribed for certain types of neuropathy and other neurological pain issues for many years.
Frankly, the only medication that had been working the best by far for me was to continue my OPIOIDS. I was taking OPIOIDS long before they started with this treatment modality of LDN of before it had been introduced. Given the fact that it’s challenging enough to find the right type, kind and dosage of Opioid to be effective. Starting a regime of LDN is a bit like “tip toeing” in to seek adequate pain relief.
OPIOIDS have been given a very unfair reputation that they have taken on and do not deserve. Before I started taking Opioids over 30 years ago to try and find a medication and pain management protocol that was actually effective with a successful efficacy etc, it took a great deal of trial and error. Of course, most pain specialists and clinics can’t find adequate pain management without using any Opioids at all. based on a significant amount of biased and unscientific patient research plus their own subjective feelings the entire pain management protocol using Opioids in a safe ongoing treatment plan aren’t even given serious consideration any longer.
There’s a very good reason why Opioids are used and used very effectively to treat chronic pain or acute chronic pain. It’s because they are extremely effective. unfortunately, there has been so much bad press, mis information, dis information and outward lies associated with using Opioids that the “War on Drugs” has infiltrated the sacred relationships between the physician and patient relationship to try and determine which kind of pain medications will work best for their patients and the successful strategy for an efficacious treatment for a chronic long term pain situation.
The largest problem which still exists is the “Elephant in the Room.” There is an overwhelming majority of physicians who are “Woefully” undertrained and inadequately informed to successfully treat chronic pain.
The amount of poisonous Fentanyl killing people with OD’s on the streets are placed in the same category as legitimate chronic pain patients and their physicians being prescribed legitimate physician prescribed pain medications with Opioids.
This is both “CRIMINAL” extremely biased and poor research. It’s the equivalent of counting all of the fatal car accidents and placing them into the same category as those caused by alcohol and drug related auto fatalities as those that did not include any alcohol or drug related auto related fatalities. It’s complete nonsense and horribly conducted research. It’s nothing short of “MALPRACTICE!”
My suggestion to any and all of you is to find a physician who is willing to work with the facts surrounding the safe and managed use of Opioids and find a dose that provides you adequate pain management.
“Pain killers” is a misnomer. Most people with chronic pain find a way to manage it more successfully or reduce the pain from levels of 10 & 9 down to 6 & 7. Most patients never completely “kill their pain!” That may not sound like a lot but it’s quite a measurable improvement when you’re dealing with absolutely intractable pain. Finding some adequate pain relief will also assist you with obtaining some relief from your other related conditions and symptoms. If your body is having to utilize all of its energy to try and fight, manage and control pain there’s nothing left to enjoy your life with. It’s an extremely exhaustive effort. I can speak with a lot of experience and conviction on this subject. Frankly, much more so than the majority of doctors who have never personally dealt with any personal chronic pain issues. I find it interesting that any physician I’ve met who has personally had to manage their own chronic pain issues has a completely different attitude about how to treat them and what’s needed to provide a real sense of efficacy! They change their tune real fast and actually start to offer some real empathy towards their patients. Unfortunately, unless you’ve personally experienced all the pain and challenges it creates in your life it’s almost impossible to be qualified to successfully treat it.
My overall recommendation. Be persistent asking your physician to prescribe you a medication that works. Anything less than that is total BS in addition to wasting everybody’s precious time and quality of life.
Best wishes and good luck.
GODSPEED

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@philipsnowdon (and as response to @ripley )
CYCLOBENZEPRINE 10 mg nightly for the past 3 decades is what helps to keep the severity of fibromyalgic pain at bay. For a short time I took 2 tabs (what the doctor said I could do) nightly when my pain was overwhelming and I would fall into a comatose sleep but next day I'd be so hung over, mush-brained, and so s-l-o-w, and had to lie down and sleep during the day (something that I abhor doing b/c to me it's a waste of precious time). AND YOU CAN'T DRIVE when you feel like that! So I cut back to just one tab.
AMITRIPTLINE was also prescribed but had to stop taking due to disturbing side effects.
All I presently take is the cyclobenzeprine.
But the fibromyalgia is accompanied by several other nervous system and autoimmune disorders so I am always in some state of pain. Can only take Aleve or adult dosage aspirin (but only as needed for intense pain b/c of GERD and high blood pressure issues). Yes, it becomes a juggling act, but after several decades, I am so incredibly grateful for days in which overall pain level is no more than a 6. All too often, I deal with PL 7 to 9 out of 10. Due to damages from a horrific fall 28 months ago, I have been dealing with CONSTANT Pain Level 7 (sometimes goes down to a 6ish) burning nerve pain in foot/ankle/leg, with pain extending up the leg/knee/thigh. At least twice a week (generally when I've had to do errands or be on my feet for more than an hour), the pain can reach a constant, agonizing burning nerve pain level 8 to 9 out of 10.
I considered medical marijuana but after much research, getting input, and prayer, I decided it is not for me. Not looking to add more problems to my already overloaded plate.
Fibromyalgia manifested itself most strongly while I was teaching high school, attending graduate school, and raising three young children. It was hell having my brain go totally blank while driving down the highway toward the college where I was taking classes after putting in a full day at the high school. I would forget how to get to the college! Had to pull off to side of road, close my eyes, try to calm down and focus. If I remembered the route, I'd continue; if not, I'd turn off at next exit and figure out how to get back home. I'd try to memorize info for final exams only to have brain freeze up and not being able to recall anything, so for one final in particular, I just wrote "Sorry, this is all I can remember" handed in my test booklet (it was all essay-based) and walked out while fighting back tears, feeling like such a failure. I figured that the professor took pity on me and gave me a grade of B for that course. All my others I'd managed A's, and since I am such a hyper Type A personality, I calmed myself that all that mattered was that I'd get my master's which was required for keeping my state teaching license. But the brain fogs still continue to this day (at age 75). I won't drive anywhere that is more than 7 miles from our home, and only if I am totally sure of the route and alternate routes just in case there is a detour. I can't use that device that gives directions because too many times, it has screwed up when my husband was using it! He's undaunted, however, but for me it would a pure hell.
Doctors have wanted me to take Lyrica, Cymbalta, etc, and I turned them all down. I am highly sensitive to any and all of those and other medications, with side effects of nightmares, night terrors, hallucinations. No thanks!
I agree that it is important to figure out what works best for you because it may not work for someone else.
I wrote a detailed post several months ago in response to another member who is dealing with intense pain from fibromyalgia. Perhaps ripley can locate it by searching through or a mentor-volunteer may have a means of locating and posting the link.
At this point in my life, I am trying to cope with so many pain-inflicting conditions that impact on my long-standing depression. It helps to have someone to speak with other than your partner. I've been fortunate to have access to a cognitive therapist via Zoom, and she is knowledgeable with what chronic pain involves. But mostly, I rely on myself, and have located three caring, knowledgeable doctors for my medical team who LISTEN and more importantly RESPECT my decisions. I ditched the ones that made me feel like I was viewed as an old woman who needed to be placated.

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@jxxn24

I'm curious what you found out about Voltaren. I thought it could be used occasionally without many side effects and less GI issues that oral NSAIDs.

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As someone else posted, Voltaren is supposed to be applied by defined dosages and over time, not just when one wants it. But my husband is fine with minimal amount and only when absolutely needed. And that works for him. It is a personal choice.
But Voltaren can create liver problems. There are other side effects which I can't recall, but since my mother almost died from liver failure after a reaction to an often prescribed medication, I am supercautious. You can google Voltaren and read only from reputable sites/medical journals.

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