Aloha… has anyone tried pramipexole for fibromyalgia? I have researched endlessly for years and tried so many tricks. Recently read a study showing promise for fibro pain. The idea is that the pain could be originating from low dopamine receptors & it is a D2 agonist binging to dopamine response. It makes me very nervous bc the side effects scare me! But alas I am desperate. I can’t function most days with horrible fibro & CFS! It does make sense the dopamine thing bc I have always had fibro & always sought out drugs & alcohol to numb in my early 20s. I’m 47 and have been sober for many years but it’s interesting that I always sought to numb! Anyone try this? And what were your side effects? What dosage? It’s been sitting on my night stand for 2 weeks bc I can’t bring myself to even try with fear of side effects! Dr prescribed 0.25 mg and considering just halfing the dose like .125 to start at bedtime and just seeing how I feel. Thank you!
Hi, igotalemon! The brand name of this drug is Mirapex so maybe members will recognize this medication. I went to the Mayo Clinic to truly find out good information about this medication. Here is the link.
https://www.mayoclinic.org/drugs-supplements/pramipexole-oral-route/description/drg-20065603
I read through this and I can see why you are afraid to take this. My personal opinion is I would not take this for fibromyalgia and chronic fatigue syndrome. It is designed to help people with Parkinson’s Disease and also restless leg syndrome. There is not one mention of fibromyalgia or chronic fatigue syndrome. And actually some of the side affects can make your problems worse. It says it can cause muscle pain and joint pain and it also can cause fatigue in some cases. This makes no sense to me.
It’s very bad to stay in bed with fibro. It makes you have more pain and stiffness. You need to move to help keep those muscles, tendons and ligaments more flexible.
Have you gotten a second opinion as to your diagnosis of fibro? My back hurt me so bad for years and I couldn’t lay on it because of pain. Then I started getting pain in my hips that ran down to my calves in both legs. I could only take baby steps and I had to use two canes to walk. It was so bad at night that I kept bath towels on my nightstand and if I had to use the bathroom I would have to stuff a towel between my legs to get to the bathroom because I had to move so slowly. Every step was extremely painful and I didn’t want to ruin my carpeting. Pretty pathetic, right?
So I went to see an excellent board certified rheumatologist and after much blood work, X-rays, and two MRI’s I was diagnosed with ankylosing spondylitis which is a form of rheumatoid arthritis in the spine! Yes, I also had fibro but the AS was actually causing me more pain. For years I was putting the blame on fibro. The rheumatologist wanted me living in his infusion suites and I declined.
I continued using ibuprofen and my board certified Internist knew of a medication that helps prevent ulcers in some patients. I tried it and haven’t had an ulcer since…13 years. I remembered a pain medication that was prescribed for me over the years when in a flare and it was a muscle relaxer called methocarbamol (brand name is Robaxin). I asked if he would prescribe that for me and he did. I started taking half the amount prescribed and it has worked wonders. My back pain is nearly gone and I can walk just fine. None of this would have happened if I hadn’t gotten a second opinion. By the way, I had to stop taking ibuprofen because I was put on a blood thinner after having a stent put in one artery. I thought I would start more problems but is started arthritis strength Tylenol and with that and the methocarbamol, I’m noting fine. I don’t quite have the spring in my step but I can walk through these warehouses that are called grocery stores pushing my own cart. 😂
You can get some info about doctors you are considering seeing at vitals.com and healthgrades.com. There are even some reviews on these sites that could help you.
Bottom line is please start moving your body and do get a good second opinion.
Sherrine
Forum Moderator/Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7
https://www.mayoclinic.org/drugs-supplements/pramipexole-oral-route/description/drg-20065603
I read through this and I can see why you are afraid to take this. My personal opinion is I would not take this for fibromyalgia and chronic fatigue syndrome. It is designed to help people with Parkinson’s Disease and also restless leg syndrome. There is not one mention of fibromyalgia or chronic fatigue syndrome. And actually some of the side affects can make your problems worse. It says it can cause muscle pain and joint pain and it also can cause fatigue in some cases. This makes no sense to me.
It’s very bad to stay in bed with fibro. It makes you have more pain and stiffness. You need to move to help keep those muscles, tendons and ligaments more flexible.
Have you gotten a second opinion as to your diagnosis of fibro? My back hurt me so bad for years and I couldn’t lay on it because of pain. Then I started getting pain in my hips that ran down to my calves in both legs. I could only take baby steps and I had to use two canes to walk. It was so bad at night that I kept bath towels on my nightstand and if I had to use the bathroom I would have to stuff a towel between my legs to get to the bathroom because I had to move so slowly. Every step was extremely painful and I didn’t want to ruin my carpeting. Pretty pathetic, right?
So I went to see an excellent board certified rheumatologist and after much blood work, X-rays, and two MRI’s I was diagnosed with ankylosing spondylitis which is a form of rheumatoid arthritis in the spine! Yes, I also had fibro but the AS was actually causing me more pain. For years I was putting the blame on fibro. The rheumatologist wanted me living in his infusion suites and I declined.
I continued using ibuprofen and my board certified Internist knew of a medication that helps prevent ulcers in some patients. I tried it and haven’t had an ulcer since…13 years. I remembered a pain medication that was prescribed for me over the years when in a flare and it was a muscle relaxer called methocarbamol (brand name is Robaxin). I asked if he would prescribe that for me and he did. I started taking half the amount prescribed and it has worked wonders. My back pain is nearly gone and I can walk just fine. None of this would have happened if I hadn’t gotten a second opinion. By the way, I had to stop taking ibuprofen because I was put on a blood thinner after having a stent put in one artery. I thought I would start more problems but is started arthritis strength Tylenol and with that and the methocarbamol, I’m noting fine. I don’t quite have the spring in my step but I can walk through these warehouses that are called grocery stores pushing my own cart. 😂
You can get some info about doctors you are considering seeing at vitals.com and healthgrades.com. There are even some reviews on these sites that could help you.
Bottom line is please start moving your body and do get a good second opinion.
Sherrine
Forum Moderator/Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7
Post Edited (Sherrine) : 2/19/2025 7:42:10 PM (GMT-5)
Thank you so much for you reply! Yes mine is most definitely fibromyalgia! I also have severe Crohn’s disease that is slightly in remission with budesonide and multiple supplements/diet and lifestyle changes over the last 18 years but ever since Covid, I have had chronic reactivations of Epstein-Barr virus that have caused widespread pain that seems to just be stuck in all my fascia… Feels like a fight or flight response from trauma the best way I can describe is it’s stuck there! And even when the EBV levels going up & down over the past 3 years- when they go down I am still left with horrid chronic fatigue and fibromyalgia and I can’t pinpoint a specific spot like my back or legs. It just feels like it’s widespread over my whole body- constant pain similar to as if I just have the flu every single day. I have a few different doctors - GI, PCP, a virologist and a rheumatologist and both my rheumi & PCP had suggested Mirapex as an off label shot in the dark because the fibro could possibly be caused from low dopamine receptors (I also have ADHD- & have been thru my fair share of trauma w/an abusive 22yr marriage & divorce)
Here are some of the links & thoughts on why Mirapex:
A study published in the journal "Arthritis and Rheumatism" found that pramipexole (Mirapex), a dopamine agonist typically used for Parkinson's disease, significantly improved pain, fatigue, function, and overall status in a subset of patients with fibromyalgia when compared to placebo, with around 42% of patients on pramipexole experiencing a 50% or greater reduction in pain compared to 14% on placebo; this study demonstrated its potential as a treatment option for fibromyalgia
https://pubmed.ncbi.nlm.nih.gov/16052595/
https://www.medcentral.com/pain/chronic/central-role-dopamine-fibromyalgia
https://www.medcentral.com/pain/chronic/central-role-dopamine-fibromyalgia
Was hoping to see if anyone has tried it off label for fibro bc yeah- super nervous about side effects! And of course don’t want to feel any worse than I already do- bc I’m suffering so much right now!
Thank you love 💗
Here are some of the links & thoughts on why Mirapex:
A study published in the journal "Arthritis and Rheumatism" found that pramipexole (Mirapex), a dopamine agonist typically used for Parkinson's disease, significantly improved pain, fatigue, function, and overall status in a subset of patients with fibromyalgia when compared to placebo, with around 42% of patients on pramipexole experiencing a 50% or greater reduction in pain compared to 14% on placebo; this study demonstrated its potential as a treatment option for fibromyalgia
https://pubmed.ncbi.nlm.nih.gov/16052595/
https://www.medcentral.com/pain/chronic/central-role-dopamine-fibromyalgia
https://www.medcentral.com/pain/chronic/central-role-dopamine-fibromyalgia
Was hoping to see if anyone has tried it off label for fibro bc yeah- super nervous about side effects! And of course don’t want to feel any worse than I already do- bc I’m suffering so much right now!
Thank you love 💗