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.

@kimmycorvette1

Elavil(Amitrypline) helped my severe leg pain and sleep. You take it before bed. Ask for it.

Jump to this post

Elavil is the brand name while amitriptyline is the generic.
Elavil was discontinued in 2000 with no explanation offered. Dispensed now by the generic name only.
You are correct that it tends to help with sleep since it can make you drowsy, and it is recommended not to take after 8 PM.
When I used to take it years ago along with cyclobenzeprine, I did have an overwhelming sleepiness, and fell into a deep but disturbing sleep, marked by an often specific repetitive, intensely frightening nightmare. Did not go cold-turkey, I got help from neurologist to taper off this drug and a couple of others. There are caveats regarding foods, supplements, and health conditions. For people who can tolerate amitriptyline, it can be beneficial.

REPLY
@delia74

Elavil is the brand name while amitriptyline is the generic.
Elavil was discontinued in 2000 with no explanation offered. Dispensed now by the generic name only.
You are correct that it tends to help with sleep since it can make you drowsy, and it is recommended not to take after 8 PM.
When I used to take it years ago along with cyclobenzeprine, I did have an overwhelming sleepiness, and fell into a deep but disturbing sleep, marked by an often specific repetitive, intensely frightening nightmare. Did not go cold-turkey, I got help from neurologist to taper off this drug and a couple of others. There are caveats regarding foods, supplements, and health conditions. For people who can tolerate amitriptyline, it can be beneficial.

Jump to this post

Yea its was a miracle drug for me. I took it at bedtime around midnight. Helped lots for my non- diabetic neuropathy and severe upper legs muscle spasms.

REPLY

Get regular massages to help move fluids between muscles/tendons and that will relieve the pain. Stretches, a daily walk or so are much better than resting during the day. It sounds counterintuitive, but for this condition, movement is important to keep up strength and flexibility. Dr. Mark Tarnopolsky has written widely on the subject. In my own experience, avoiding some foods that cause inflammation has helped: potatoes, tomatoes, dairy, whole wheat (maybe old varieties are okay)), sugar and processed foods. It is sort of something that you try and track--bloodwork for allergies is not all that. Hydration is really important to avoid the "slows" where one does not feel like moving. There are also Fibromyalgia Facebook groups. Here's an article regarding the type of exercise: https://www.health.harvard.edu/blog/fibromyalgia-exercise-helps-heres-how-to-start-2020101321153#:~:text=Experts%20typically%20recommend%20any%20low,and%20stiffness%20and%20improving%20function.

REPLY
@ripley

Did you ever try Tramadol, which I read some people use daily? Both that and Prednisone have long term side effects which concern me, especially since I already have osteoporosis. I see my Dr next week and need something to help with severe pain daily. Usually my flares last two months with two months of other minor symptoms. I am afraid to try the drugs approved for Fibro due to side effects and withdrawal issues. But I guess Tramadol and Pred. also have withdrawal issues. I guess there is no easy solution.

Jump to this post

I take 1 Tramadol at 20:00 am with 10mg prednisone and it helps a lot. I rest good at nighttime. I hope I don’t have to change that combo.

REPLY
@josie20019

I take 1 Tramadol at 20:00 am with 10mg prednisone and it helps a lot. I rest good at nighttime. I hope I don’t have to change that combo.

Jump to this post

That’s at 10:00 am…

REPLY
@philipsnowdon

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

Jump to this post

Thank you for speaking about options so frankly and truthfully. I have been on various options for years. I don't abuse or overuse, EVER! I wouldn't be able to function without these wonderful medications.

REPLY
@cleo130

Thank you for speaking about options so frankly and truthfully. I have been on various options for years. I don't abuse or overuse, EVER! I wouldn't be able to function without these wonderful medications.

Jump to this post

Spellchecker changed opiods to options!

REPLY
Please sign in or register to post a reply.