NFA QuestionsCategory: QuestionsMedications Don\’t Work, What to do?
Annette Gash asked 2 years ago

What is the next step when you have tried the medications to treat Fibromyalgia and the medications do not  work?

Lynne Matallana replied 2 years ago

Thank you for your question.

Unfortunately, many of the medications for people with FM only work for some people. Fibromyalgia affects people in many different ways, and that is why a more personalized approach for dealing with your symptoms is very important!
The European League Against Rheumatism (EULAR) continues to support a multidisciplinary approach, combining non-medicinal and medicinal treatments, to manage fibromyalgia. This means that not only medications can be helpful, but so can lifestyle changes and complementary and alternative treatments. It also means that you should plan an important role in what types of treatments feel right for you.

Research into FM and chronic pain has shown that finding ways to: improve your sleep, the way you think about your pain and coping with your emotions, your physical activity level, stress management, learning to pace yourself, eating a balanced diet, doing things you like to do, surrounding yourself with people who are positive and supportive, and changing your environment to one that is more sensitive to reducing your pain. You might also consider trying yoga, meditation, water therapy, physical therapy, mindfulness, acupuncture, cognitive behavior therapy, biofeedback, and other integrative practices that have been found to be beneficial to those with FM and chronic pain.

For those of you that are skeptical about these recommendations, I can share with you that I spent 2 years in bed, completely unable to function. When I finally found a doctor who helped me with my medications and told me to explore complementary options, I started to improve! First, I did yoga at home, and then slow, short walks in my neighborhood, and then I went to the YMCA for water therapy, found a cognitive therapist, had massages and acupuncture treatments, joined an FM support group and slowly (and yes, with ups and downs) I got to a place where I was able to work full time as the President of the NFA, the non-profit I founded. Yes, it takes time and discipline. But you can have the same results. Don’t ever give up, be kind to yourself, focus on what is possible and slowly increase your goals.

19 Answers
Sam Noel Ross answered 2 years ago

I can’t take the medications commonly used to treat fibromyalgia, because I have an adverse reaction to them (my symptoms got worse). What finally did get me some relief was a low-dose anti-depressant, which I am using to treat a different chronic pain condition, CRPS. Luckily for me, it has also helped with my Fibromyalgia symptoms. I don’t know if all meds are out of the question for you. If so, I’m sorry, and that’s not helpful at all.

Robbin answered 2 years ago

Two words… medical marijuana. I was on the pain pills and whatnot for more than 8 years and they never really helped. Medical marijuana is a game changer. I have been taking it for 4 years and feel better than i ever did on the meds the doctor prescribed. I have had fibromyalgia since I was about 25 and I am 43 now. My quality of life has greatly improved and I have actually started exercising for the first time in my life. I can’t say enough about the benefits of Marijuana. no rotten side effects either. Hope this helps.

Meg answered 2 years ago

Just a quick note- I also loved medical marijuana but I did have adverse effects. It can cause strokes heart attacks and things unknown and it caused a hypertensive emergency for myself that required an ambulance trip and almost a restart of my heart. Just be aware! This may be a small percentage of users but there are not enough studies out there to say.

Vicki L Kaufman answered 2 years ago

I still am a believer in exercise.  I was diagnosed almost 40 years ago when most docs thought we were hypochondriacs.  Flexeril, lasix and continuous exercise have kept me going. Sounds silly, but also Alka Seltzer Plus. Never received any noticable results from all the trendy meds.

Melanie M answered 2 years ago

I was put on xanax and Neurontin early on. It was old school treatment and worked together. As time has gone on, it has become increasingly difficult to get the xanax. So I tapered it down to nothing. Just the Neurontin now. My doctor is flexible in my dosing allowing me to decrease and increase as needed. But really, stress management (difficult these days) and knowing when to just slow down (difficult for my personality type), helps tremendously.

Mary answered 2 years ago

I found marijuana 5 years ago. Most of my symptoms have reversed by 50%. I use an RSO with 51% THC and a 10 mil CBD gummy. The RSO is eaten in a Indica concentrated oil form. Only dosing at night my pain relief continues til noon or 1 the next day. I’ve heard Sativa helps with energy and brain fog. I’m hoping to try it soon. I’m feeling more human than ever. I use THC roll ones and salves all with great results.

Sandra answered 2 years ago

My body may suddenly stop reacting to a medication anywhere between 3-6 months after effective analgesia, resulting in having to constantly rotate my medications. This is apparently quite common, since it is known that FM causes changes in a person’s metabolism. Additionally, I have experienced sudden hyperalgesia or anaphylaxis to various medications, causing a major reshuffle of all medications.

Luckily, I have a superb PCP who is open to new and ‘out-of-the box’ ideas [Disclosure: I am a scientist researching pain conditions such as FM, have access to all of the latest research and publications]. There are few medications or treatments (such as trans-cranial stimulation) left that I haven’t tried at some point in time; some of my most effective, long-term medication has been
-]low dose Naltrexone HCL for continued pain control,
-]Provigil [Modafinil] to counter my constant and overwhelming fibro-fog,
-]Namenda [Memantine] for pain control, and
-]Trazadone at nights as a sleep aid.

It has been a hard journey to determine what time of day to take the medication. Taken too early or late can cause negative results. Personally, daily exercise (I have a stationary bike at home) and a set bedtime routine have been invaluable. However, I just started menopause and this has caused some disruption.

Don’t become disheartened if a medication doesn’t work for you. No one of us reacts the same and as long as you are honest with your doctor, a solution can be found.

Mandy answered 2 years ago

I’ve never had medicine work well for me. When I had my first child almost 20 years ago, I had to stop taking all my meds (which wasn’t such a bad thing as I didn’t feel they were really working anyway). Looking for other options, I finally tried the more “natural” treatments recommended by my rheumatologist that I’d been so resist to for years, especially in my teens and early 20s.

Here’s what I’ve found works for me: 1) yoga at least every other day (it can be gentle) as I am naturally inflexible and stiffness/tension = pain for me 2) taking a bath every night before bed to ease tension and warm muscles (plus the long held routine prepares me mentally for sleep), 3) With clothing – wear lighter clothing and layers rather than heavier weighted fabrics, no hoods/hoodies to help with shoulder/neck pain and stiffness and no tight sleeves on my shirts to help with pain in my wrists 4) Get outside every day – having a dog that needs to be walked daily has helped with this and I find that even when I REALLY don’t want to go, I always feel better physically and mentally when I get back 5) Drink lots of water – I struggle with this one but it does make everything feel better and helps ease fatigue, even a little bit 6) eat lots of nutrients, avoid processed foods – also challenging as this takes time, energy and often isn’t readily available to quickly purchase like fast food 7) find something or someone to be accountable to – every day, I struggle to get up out of bed due to morning fatigue and stiffness yet knowing I have responsibilities to my family, my job, etc. gets me going 8) use heat, stay warm – I have a neck “wrap” and large lap “pad” that I heat up in the microwave to relax my muscles and body throughout the day, especially if sitting for longer periods of time 9) If you are able, go to physical therapy (I only did a few sessions)- I still do stretching and strengthening exercises recommended to me more than 10 years ago and contribute some of this to my physical strength and functioning

I realize this may all sound a bit “Pollyanna” and it does time take, discipline and effort, but has made a huge difference for me over the past 20 years in my level of pain, energy and functioning. I feel like it has allowed me to “reset” my body so my pain levels don’t get as high as often for as long, even in a flare up.

Paul answered 2 years ago

Mandy –
Thank you for your thorough reflections. I’ve had a fibro dx for nearly 40 years & the pain, stiffness, and fatigue grow worse. But your experience encourages me.

Paul

Caryn answered 2 years ago

Nothing pill wise has worked for me. I am 65 now and have had Fibro since I was in my late 20’s ,before anyone knew what it was. My niece game me 25 mg THC gummies, and lo and behold after 45 minutes I had zero muscle pain…even my horrible neck pain from bone spurs was eased a bit. I have used the gummies occasionally when I am at home in the evening. I do feel a little spacy for a short time and then I feel no muscle pain. It’s amazing. I am a Nurse and work very part time now, so I cannot ever take gummies during the day. They do work, so yeah Medical Marijuana works..if you can’t smoke it, get the gummies

Elizabeth answered 2 years ago

I have intersectional pain issues. Fibromyalgia, since I was a child, diagnosed when I was 24. My pain increased greatly due to auto and motorcycle injuries. After a severe illness in 2018, I developed severe neuropathy. Now I take a low does of oxycodone, Neurontin, Tylenol and ibuprofen, every 4 hours, and amitriptyline benedryl and tizinidine at night for sleep. The Neurontin helps the neuropathy. The combo gets me to the 3rd hour of the 4 hour period to be functional, but I never am without pain.

Marsha Rodriguez answered 2 years ago

I take one 15 mg of Morphine Sulfate Extended release every morning. It’s suppose to last 12 hours so when I first wake up I’m always in pain. This was my choice given all the negative constant drama of opioid abuse. I tried lyrica twice it was the worst med I’ve ever had. Before the COVID-19 pandemic I was going to aquatic therapy twice a week and seeing a myofacial release therapist. The MFRT was the biggest benefit in all my years dealing with fibromylgia I was able to sleep every night which was huge progress for me. The aquatic therapy was also a huge benefit. I haven’t been able to continue either of these and my fibromylgia symptoms have increased, my pain level is much higher. So I just take the one pill in the morning & use generic Tylenol at night

Dawn answered 2 years ago

oxycodone an antidepressant and naproxen is the only treatment that helps’ have tried almost all items above including TMS.
I have to fight to get the oxytocin, which I resent.It seems chronic pain ungodly fatigue are not legit since opiod epidemic.
I am still unable to do anything and hate being dysfunctional, often times I consider suicide. My days are spent in bed, crying, but I promised my little pug Junebug I will wait till she dies.

Debbie answered 1 year ago

Dawn, I know your pain. Around here it is impossible to get something strong for pain, unless you have surgery. I made my pain pills from my hysterectomy last 4 months, only taking one when it was really unbearable. My daughter has been on every fibro drug as well, they may work for a while but then don’t. I’ve tried a couple, but really didn’t help. Now I smoke medical cannabis. I can’t do much or then I get anxiety, so only 2 hits off a flower vape. Then at night after smoking I do just a bit of an edible so later at night it kicks in after the weed is wearing off. I may also do a couple drops of CBD oil (no THC in it) as well. I also do an organic India Ashwaganda to relax, 15 mg of melatonin and since calcium makes me sleepy I do that at night also. Since, night time is so hard on me, from the insomnia, I find this helps. I’m 64 and have had this since I was 15, during the period of no one, around here at least, knowing or understanding this condition. In fact it wasn’t until 2014 that I was finally taken seriously, yet nothing was prescribed at that time, except Gabapentin for legs and sleep. That lasted until had to keep upping the dosage. So, I just stumble on. I will stick to the more natural stuff and pray that my outside stress factor gets better. Gotta love dogs, they do help us smile. Mine is named Ozzy and he’s a 3-1/2 yr. old deaf great dane. We both continue to learn sign language. His previous owner was walking him around town trying to get rid of him, so heard about it and went to check him out. Had a feeling he was deaf (has a lot of white and blue eyes) and when the owner told me to feel free to change his name as he doesn’t come to it anyway, sort of confirmed it. Please hang in there Dawn. Hugs to you and Junebug.

Nadine Beslow answered 1 year ago

Hello! Paul was asking what my dosage of cannabis is. First off, I’ve taken for years. Not for recreational uses, but during my cancer treatment it really helped me be able to eat with the chemo. I then continued to take it for my insomnia due to ugh menopause (at 36 by the way! AUGH!). I was in Nevada before on the medical card and now relocated to Texas and have gotten it there. I like how Texas does it. You work with a specific doctor and they help you find what is right for you. For me I take 20MG of a 1:1 hybrid in the am and again around 2/3 pm. I then take 20MG 10:1 THC Indica and that really knocks me out and allows me to sleep fully. The hybrids are great for day because they loosen my muscles as well as eases my anxiety. That way when I’m ready to go to bed at night the full THC just zonks me out. I wake with no medication hang over and do feel much better. The biggest thing I can recommend for those that are taking this for sleep is to take it and then read a book. if you watch tv, don’t flip through the channels. Don’t scroll through Instagram or the internet. You then are keeping your brain active and yes, you will feel that dopey high feeling but you are missing the opportunity to sleep. :) So I will take my nighttime one at 8:30 during my nighttime routine and around 9:30 I’m drifting off. If you start to panic or “trip” which can happen if you take too much, then just lay down and close your eyes. You can never OD on cannabis. I have a lot of education around cannabis due to personal friends of my that either- grow, dispense and even test the product in Nevada. They were so helpful to me when I went through cancer. I HATE taking any kind of synthetic medication so if I can get relief from this with cannabis, to heck with people thinking I’m a crazy hippie. I am hopeful to start dialing down the Lyrica they have me on and increase my cannabis. I’m happy to talk more if anyone needs me.

Paul Metzler answered 1 year ago

What type/dose of medical marijuana seems effective?
I started with CBD oil and gummies of Sativa during the day and Indica at bedtime.
Not sure yet how positive the results are.
Both make me feel like I’ve had a couple of glasses of wine and just want to drift off. Pain is in background, but not gone. I am not able to be very productive when I’ve take either.

Nadine Beslow answered 1 year ago

I’m struggling as well….. I’m a Cervical Cancer Survivor and that activated my fibromyalgia they think. It’s been a struggle for a few years until I finally received a diagnosis. They have me on 100MG of Lyrica in the am and pm but I don’t think that is even doing anything. Also, I did get approved for medical cannabis and that has been an absolute life saver. I feel better taking that than a concern for getting dependency on opioids.

Dawn answered 1 year ago

I have medical maijuana and it does not help pain wise, opiods do. I guess everyone is different.

Paul Metzler answered 1 year ago

What doses of what medical marijuana products have anyone found particularly effective? i only use gummies as I don’t want to smoke (which I gave up nearly 40 years ago. As mentioned in previous post I use a combination of CBD and either Sativa (daytime) or Indica at bedtime. I’ve doing this for about 6 weeks.