1. < Fibromyalgia
Profile picture for ripley

Fibromyalgia - What medications help you with pain, fatigue etc?

Posted by ripley @ripley, Oct 2, 2024

I was diagnosed with Fibromyalgia almost 3 years ago. I haven't tried any of the medications typically prescribed for fibro, other than Flexeril at night as needed. I've been afraid of the side effects of the drugs, and don't know where to find a doctor that treats this illness. So, I've tried to cope on my own. However, my symptoms are getting worse (pain, insomnia, fatigue and generally feeling sick) and I need help.

If you have fibromyalgia and have found relief with medications, can you please share what has helped you?

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

Profile picture for fmcfs
fmcfs | @fmcfs | Jun 6 7:47am
In reply to @jakefix82 "I’m 77 and it’s hard to sort out what’s fibro and what’s age related stuff anymore...." + (show)
Profile picture for jakefix82 @jakefix82

I’m 77 and it’s hard to sort out what’s fibro and what’s age related stuff anymore. I was diagnosed in the 1980s and what worked then was low-dose Elavil for stage 4 sleep, prescription Naprosyn for inflammation, and Parafon Forte as a muscle relaxer (Flexeril did nothing for me). Rest helps my legs when they give out, which they do if I get less than 8 hrs sleep. My legs become stiff like cardboard and all I can do is shuffle my feet.

I’ve just recovered from a UTI - first symptom was annoying left side flank pain, which I tried to dismiss because I had a regularly scheduled dr app’t coming up. When I started having mild chills one Friday evening and the ER was the only thing open, I went there and got diagnosed. The antibiotic worked, infection is no longer, but I’m entering the third month with left flank pain which gets worse near the end of the day when I’m tired. Thinking it was a kidney stone or whatever, I got a CT scan. Incidental finding was a very small kidney lesion, so seeing a urologist and getting more imaging. Could be a benign cyst, but if it’s a solid tumor, they’ll just monitor it with imaging because they’re very slow-growing. With fibro & at my age, poor healing from is a possible complication to consider.

The flank pain was ruled musculoskeletal. Interesting, because my first UTI about three years ago was preceded by two weeks with a charly-horse clenching of muscles in my left hip - which initially left me barely able to walk and took about 3 months to resolve. I’m thinking fibro hyper-activates the nerve pathways at the first sign of an infection and nearby muscle fibers react with painful tightness.

The left flank pain continues, but is improving . I finally went back to exercising - I’d stopped for a month. My legs were getting weaker without exercise and balance was getting hard to maintain (I use a cane - have bone-on-bone OA in one knee, exercise strengthens the supportive thigh muscles, so knee replacement not required).

Well, two days into exercising, I had extreme pain - yesterday - from a muscle pull in the left hip, just inches below the flank pain. Everything’s going haywire!

This morning the hip pain has greatly improved, though not entirely gone.

Here’s what I did for the hip yesterday: took one arthritis Tylenol. Didn’t help. Waited till it wore off and took one extra-strength Excedrin. I can no longer take anti-inflammatories with aspirin in them as I’ve had a “spontaneous bleed” (in my ankle, thankfully - not in my stomach, brain, etc). So one Excedrin maybe once a month for inflammation is my limit because it’s risky.

The Excedrin didn’t help. I went to bed with a neoprene back support around the hip area of my body - neoprene helps retain moist body heat. I have lots of neoprene support aids when muscles get stiff or tight.

Finally, in the middle of the night - after the Excedrin wore off - I took my Parafon Forte muscle relaxer (I take as needed, they make me really drowsy) and this morning I have enough relief that the pain in the hip muscles is bearable. I’m just sitting around resting and still groggy. I put the neoprene belt back on around my hip area.

I no longer take Elavil - started to hallucinate on it after 5 years, haven’t taken Naprosyn in years and can’t take any anti-inflammatories now. I’m pretty much on my own when my muscles tighten up. Rest really helps.

The one exercise that I can do that doesn’t produce flu-like post-exertion malaise is the SciFit Recumbent Stepper (google it for YouTube video). My PT folks had one of these machines, our YMCA has three, and the senior center in my town has two. They put zero stress on knee joints, work arms and legs (arms are optional), are easily adapted for use by those in a wheelchair, raise your heart rate a bit but aren’t strenuous or tiring. The machine counts your steps. I try to use it about thirty minutes daily - really strengthens my thighs so I can keep walking. My legs work, but tire easily, so I walk about 6,000 steps a day between the recumbent stepper and just walking around Target, Walmart, or the grocery store.

As I write this, it occurred to me this sudden hip pain is just a few weeks out from the Cipro I took for the UTI. Cipro can have the side effect of pulled tendons, muscle strains. Maybe it’s a combination of Cipro side effects and fibro. Who knows?

So, anyway, just resting and hoping I’ll be more mobile by tomorrow.

Jump to this post

@jakefix82 I think you’re right about age- related complications that arise from the underlying fibromyalgia. It’s like a waterfall effect as your body weakens. I think you know your body well and are dealing with it as much as possible without NSAIDS which are so helpful. Sometimes we tend to overthink things in desperation to find and fix the cause of pain. I know it’s immensely frustrating and depressing. I applaud you for trying to stay mobile with exercise— that’s very important. Forgot if you tried amitriptyline— it’s a generic. Don’t neglect mental health.m as well . Biblical counseling helped me, as does my church. I also teach Tai Chi.

REPLY
1 reply
Profile picture for jakefix82
jakefix82 | @jakefix82 | Jun 6 4:32pm
In reply to @fmcfs "@jakefix82 I think you’re right about age- related complications that arise from the underlying fibromyalgia. It’s..." + (show)
Profile picture for fmcfs @fmcfs

@jakefix82 I think you’re right about age- related complications that arise from the underlying fibromyalgia. It’s like a waterfall effect as your body weakens. I think you know your body well and are dealing with it as much as possible without NSAIDS which are so helpful. Sometimes we tend to overthink things in desperation to find and fix the cause of pain. I know it’s immensely frustrating and depressing. I applaud you for trying to stay mobile with exercise— that’s very important. Forgot if you tried amitriptyline— it’s a generic. Don’t neglect mental health.m as well . Biblical counseling helped me, as does my church. I also teach Tai Chi.

Jump to this post

@fmcfs Thanks! Yes, I took the generic for Elavil first five years - 10 mg didn’t help, so it was adjusted to 25 and that made a difference. For 5 years, I was allowed to self-dose, 25-50 mg, until the side effects were no longer tolerable. I recall that my skin itched afterwards and I was on another med to deal with that for about a year.

I think the recent left flank pain preceding the UTI by a couple weeks and the pain still continuing (though improving) is due to the nerve pathway in the area of the gut hyper-reacting to the bacterial infection. The muscles just clench as a result. It was my left hip muscles a couple years ago that followed the same pattern - starting up 2 weeks before I had other symptoms that suggested a UTI. It took a full 3 months for the hip muscles to fully resolve. Makes sense, as fibro sets off nerves.

I have a history of frozen shoulder, chronic hip bursitis, and chronic costchondritis- all of which took time to eventually resolve. Wondering if they’re all part of a pattern of fibro-related over-active nerves becoming aggravated and inflamed?

I think this latest hip miscle to pull in the past couple days is quite possibly a side effect of having taken Cipro for the UTI. I gave it a few weeks before going back to exercising - just started back exercising the past week and boom! - a severe muscle pull.

I was quite groggy last night on muscle relaxer Parafon Forte, finally went to sleep, but got up at 4 am when the mattress aggravated the muscle pain. Took just half a tablet of the muscle relaxer, but felt better somewhat when standing up and doing some slow walking - so I decided to to light vacuuming at 4 am! Perhaps that helped with circulation to the muscles, too. Went back to bed at 8 am and slept till noon - feel almost 100% better than last night! I think this is Cipro related. When I first finished the week-long course of Cipro, I couldn’t walk when waking up the next day. Muscles were just stiff. I was panicking, as I was last night. Only thing to do was rest some more, and improvement was quite noticeable.

I would like to exercise, though. Guess I need to wait & be patient.

Like you, I’ve found quieting/calming my body and just breathing in and out slowly helps to relax so I can rest. Panicking at suddenly losing mobility only makes things worse.

Thanks for your response!

REPLY
Profile picture for rheumatol3
rheumatol3 | @rheumatol3 | Jun 7 4:13pm

Hi Riley,
I too have fibromyalgia and RA and hypothyroid. I use a combination of things mainly Leflunomide, Humira and an opioid and medical cannabis cream/lotion along with hot Epsom salt baths with baking soda and infrared sessions. I just ordered an infrared blanket. I can’t wait to get it. I hope this helps.

REPLY
Profile picture for christinadv23
christinadv23 | @christinadv23 | Jun 11 6:10pm

Hi.
My fibromyalgia is getting worse as well. My skin hurts to the touch, fatigue is really intense, I sleep like 3-4 hours a night, and I just feel overall body pain from head to toe. I also have had excruciating lower back pain for 30 years, knee arthritis 5 years, and now a bulging disc causing numbness to legs, burning to legs, leg cramps and stabbing pain to my legs. I have tried Cyclobenzaprine, Lyrica and Celebrex . Those 3 medications really helped me UNTIL I began experiencing some scary side effects. ( memory loss, confusion, worse anxiety, )
I had to stop taking them because I felt like I was having an out of body experience. Frightening! It saddens me because I thought…FINALLY!!! This medication combo is helping me. But unfortunately the side effects were too severe for me.
My point is, this does not happen to everyone. Maybe these meds will help you with no side effects. I really pray this info on these 3 meds help you or anyone reading this. 🙏

REPLY
1 reply
Profile picture for 4corazon
4corazon | @4corazon | 4 days ago

I have had fibro for 20 years and take LDN 4.5 mg in AM for pain. It really helps me.
I read that Mayo now offers doctors who treat fibro & chronic fatigue, which is my major battle right now. I would love to get an appt with a doctor who treats these. I have an appt with my cardio at Mayo Phoenix July 2, so will try to find someone up there that I can ask about this Dr. Tilburt.
Best of luck to you. I do remember how difficult it was for me at the beginning.

REPLY
Profile picture for pala
pala | @pala | 3 days ago

I've had fibromyalgia for close to forty years and have tried many things also. It would be wise if you tried to find a good rheumatologist that would take your case. They often don't take on more fibromyalgia cases, but try. Look up the background of the doctor's in your area and of course try to find one you can build a good working relationship with. This is as important as any treatment you try.

REPLY
Profile picture for 4corazon
4corazon | @4corazon | 3 days ago
In reply to @christinadv23 "Hi. My fibromyalgia is getting worse as well. My skin hurts to the touch, fatigue is..." + (show)
Profile picture for christinadv23 @christinadv23

Hi.
My fibromyalgia is getting worse as well. My skin hurts to the touch, fatigue is really intense, I sleep like 3-4 hours a night, and I just feel overall body pain from head to toe. I also have had excruciating lower back pain for 30 years, knee arthritis 5 years, and now a bulging disc causing numbness to legs, burning to legs, leg cramps and stabbing pain to my legs. I have tried Cyclobenzaprine, Lyrica and Celebrex . Those 3 medications really helped me UNTIL I began experiencing some scary side effects. ( memory loss, confusion, worse anxiety, )
I had to stop taking them because I felt like I was having an out of body experience. Frightening! It saddens me because I thought…FINALLY!!! This medication combo is helping me. But unfortunately the side effects were too severe for me.
My point is, this does not happen to everyone. Maybe these meds will help you with no side effects. I really pray this info on these 3 meds help you or anyone reading this. 🙏

Jump to this post

@christinadv23 The newest medicine out is Tonmya. I finally got a prescription for it, then my cardiologist said I cannot take it due to my congestive heart failure. I was so disappointed. The first drug for fibro in 15 years, and I cant take it. Bummer. Maybe you can.

REPLY
Profile picture for loriesco
loriesco | @loriesco | 3 days ago

Seeing a GREAT acupuncturist helped more than medication. Also, a good MFR therapist as well! After 40 years, I am so much better with the right combo of supplements, which has all but eliminated all the nerve meds and pain relievers. I also was FINALLY diagnosed with Gout! That one slipped under the radar because of all the arthritis visible in the X-rays. The docs just stopped looking further. Turns out it was the gout causing most of my woes. I now take HEME iron + B12, which fixes tons of my problems, and on Allopurinol for the gout. I don't even look at Fibromyalgia anymore because it was never a valuable diagnosis with a treatment to relieve it. My fatigue only shows up now when the anemia does. I had viruses living in my joints, which wreaked havoc, too. I got the Shringrex vaccine and all the other ones, and I think it wiped out the constant drag on my body.

REPLY
Please sign in or register to post a reply.