Fibromyalgia -- Need help on how to handle severe pain

@ripley I am surprised your rheumatologist has sent you back to your GP after your diagnosis.. As far as I have ever known, the doctor who diagnoses the patient is the one who continues to treat the patient for the illness diagnosed. Could you not go back to your rheumatologist and ask her to prescribe something to control your pain?

@ripley, I agree. Fibromyalgia is very painful and very tiring and I have had it going on 28 years now. I take magnesium 200 mg to relax the muscles, I came off of Flexeril as it can cause short term memory loss and the doctor put me on Tinizidine, which has helped greatly. I do epsom salt bath soaks as hot as I can stand it, I use heat packs that you put in the microwave called "Bed buddy", I also rub myself down with Voltaren Gel (It's over the counter) up to 4 times a day for pain. I have just been diagnosed with borderline Lupus and I am now on Plaquenil which has helped tremendously with the fibromyalgia, osteoarthritis & borderline lupus pain. GP's are not all versed in fibromyalgia....I say that from experience. Go back to your rheumatologist and tell them you need something for pain or get a 2nd opinion from another rheumatologist if possible. I agree about the Cymbalta. I know someone personally that had a hard time weaning off the Cymbalta. Try to move as much as you can because you will get stiff if you don't. Stretch in the mornings when you get up. God Bless You. Praying....I understand.

How is it that you have not been to a pain specialist? You may have to go to several before finding one who deals with fibro. And, don't just take the first diagnosis. Get two or three. There are better meds out there to help control chronic pain. Gabapentin, diazepam, etc. Keep looking. Someone out there has some answers for you. I have been to at least 6 or 7 pain specialists. Nothing really helped. By doing my own research and going to all these pain specialists, the only answer was to have a trial of the pain pump. I could feel the pain draining out of me. The permanent implant has slowly begun to give me my life back. I'm still in the adjustment process, upping the dosage slightly every week or so. You have to be your own best advocate... don't give up!

Recently I was given a drug in which I was severely allergic to. After all the pain of the last 7 days I refuse to take any more prescribed meds. For my fibro pain I take 600 milligrams of Ibuprofen 2 or 3 times a day. My pain is greatly reduced and I am able to function. My newest issue is diabetic neuropathy in my legs and feet, making it almost impossible to walk normally. God bless us all.

ripley - similar story. Rheumatologist diagnosed me, said he didn't treat FM, sent me back to my primary care who promptly called it a "garbage pail" diagnosis. OTC pain relievers don't help, even some prescriptions like oxycodone, Percocet and diclofenac don't either. I manage the FM by avoiding things that cause flare-ups, stretching, walking and putting heat on the lower back and the neck daily in that order.

Meanwhile, I'm getting more easily diagnosable painful items handled - have extensive arthritis in both shoulders and both hips, degenerated disks in my neck, probable arthritis in my feet and ongoing spine issues. Recovering from left shoulder surgery where they fixed a torn labrum, and ground off arthritic spurs and cleaned the AC joint of arthritis.

All the best in your situation.

@ripley So sorry to hear about your pain. It's so hard dealing with chronic pain. As someone with multiple chronic pain conditions, I can say the reality is the healthcare system is set up to narrow down to a diagnosis, but many providers aren't positioned well for whatever the reason to support us with treatment--especially when it comes to something as complex as fibromyalgia. I don't mean to say that to negate our frustration, but in case it helps to know you're not alone.

I agree with the others who've mentioned connecting with a pain specialist, keeping in mind there may be a wait and it might take a while to find someone who's a good fit.

My experience was a little different--I have small fiber neuropathy, POTS, and an inflammatory arthritis (which on its own took years to diagnose), and then recently was diagnosed with hypermobility and fibromyalgia last. In a weird way, it might have benefited me because it meant I de facto ended up putting together a team with different specialists--I have a rheumatologist and she never brought up fibro, and when I see her next and tell her about the new diagnosis, I don't know that she'd be able to offer much more but to point me to a chronic pain program.

Because you might be waiting a while to see a pain specialist if you decide to seek one out, while you're waiting you can continue trying to learn as much as you can (which we know you're already doing, since you're here 🙂 When I was first learning about chronic pain and how it changes the brain to create more pain, I read this book, and it really put things in perspective and got me motivated. It's a cheesy name, but it's this book: https://conquerpainbook.com/

I've seen various posts from others specifically about leg cramps, and you could do a search for those--many have suggestions that would be pretty easy to try on your own without a doctor.

Although fibromyalgia has this stigma of being a "garbage bin diagnosis," it's a legitimate diagnosis that is treatable--by addressing the specific symptoms because every person is different, and also doing everything we can to address the parts of the brain/nervous system that are misfiring and causing pain to cycle and rebound. But it's really hard =/

For that last part, in my experience it's just not something that's in most doctor's wheelhouses--it's not as easy as casting a broken arm. The specialty I've gotten the most healing and progress out of, the quickest, has been physical therapy/physical medicine and rehabilitation. But it's crucial to find a PT or chronic pain program with experience in chronic pain/chronic fatigue/fibromyalgia, and central sensitivity, otherwise it can be really invalidating and hurt more than it can heal.

I hope that helps at least a little... Wishing you all the best.

Oh my, you took the words right out of my mouth when you said, "The specialty I've gotten the most healing and progress out of, the quickest, has been physical therapy/physical medicine and rehabilitation. But it's crucial to find a PT or chronic pain program with experience in chronic pain/chronic fatigue/fibromyalgia, and central sensitivity, otherwise it can be really invalidating and hurt more than it can heal."

I suffered for years from a laundry list of pain causing issues, followed by a severe and long lasting lung infection that turned me into a couch potato and just about finished me! My PCP referred me to a Pain Rehab Clinic, where I see a laundry list of providers, the most valuable of whom is my PT. I am back among the "living and doing" - still some pain, but tolerable, still bad days, and a need to carefully pace myself.

Mind over matter is no joke - my therapist and PT are teaching me to acknowledge the pain, then figure out how to work through it.

I always try to remind people, your care providers have hundreds of patients, they will never know and understand every detail of what each of us faces. There fore we must be our own best advocates.
Sue

@sueinmn So glad to hear you're doing better, and that's so true about being "our own best advocates"!

The PT I was thinking of when I responded to this post--it's crazy when I realize that if I had given up, I would never have met her--she's the person who was able to help me find some of the most meaningful strategies to improve my pain--because at that point, I'd already seen 4 other PTs. I almost gave up on PT because the last person I saw gave recommendations that ultimately made my pain and central sensitivity worse!

In my heart, I knew he was wrong though, and there had to be a better way.

With those exceptions, PTs and physical medicine physicians will always have a special place in my heart--I love that they look at things and tend to ask: "What is possible, and how can we get you back to doing what you want to do?" Even if it might look different than I expected or be different than how I did things before.

@ripley: I take Cymbalta 60 mg and Lyrica 150 mg at bedtime to avoid sleepiness and to blunt my severe left sided pudendal nerve, sciatic nerve and hip pain. Other than gaining some weight I have had no problems with it this go round. When I initially tried it, I started abruptly at 40 mg and had severe nausea that I remember to this day. NSAIDS absolutely worked the best but messed up my kidney numbers so can’t take them. But since Cymbalta worked for my Mom’s arthritis and depression so well I decided to give it another try. Doctor started me on 20 mg Cymbalta along with Promethazine 25 mg. I didn’t have any problems at all and had noticeable pain relief. I only took the latter for 3-4 doses. I cannot tolerate severe side effects from opioids now although I took them occasionally for years with good short term pain relief. I received the spinal cord stimulator in April. It definitely works to blunt pain but has not removed it thus far. But they are still working to find the best placement and intensity. I wish you the best!

I've had fibro for over 20 years and tried a a lot of different medications. Narcotics work but the side effects and possible addiction long term isn't recommended. Some, actually many, sufferers have had good results with an ssri like Lyrica. I cannot take those as I get a heavy chest feeling.
What I have found to help is Tramadol. I don't take it after 2pm or it disturbs my sleep. At night I take a 5mg Ambien, not everyone can tolerate that, my sister would sleepwalk and try to drive her car... yikes.
It is a process and I'm very sorry you are dealing with this. Lastly, find a rheumologist who understands fibro... call around. The one I saw years ago sat down with me and another doctor (intimidation alert) and told me to swim. I then stumbled onto a doctor whose mother was suffering from this. He would give me samples of Tramadol tablets.
Seriously.
Take care of yourself and don't push it. Find your limitations, the pain of the next day will tell you jf you overdid it. Sure sometimes it can't be helped. Feel free to messege me.
~Vikki, 68 loving Colorado