A lot of the drugs prescribed for fibromyalgia and chronic fatigue syndrome are called "reuptake inhibitors," including two FDA-approved fibromyalgia drugs -- Cymbalta (duloxetine) and Savella (milnacipran). But do you understand what reuptake really means?
When your brain transmits messages from one brain cell (neuron) to another, it does so by releasing specialized chemicals called neurotransmitters. After awhile, the space between the cells basically gets cluttered up with a lot of used neurotransmitter. It's kind of like opening your mail and ending up with a pile of empty envelopes -- the envelopes were important for getting the mail to you, but you no longer need them. Your brain cleans up the mess by reabsorbing the neurotransmitters so they can be recycled. That process is called reuptake.
Researcher theorize that the brains of people with fibromyalgia, chronic fatigue syndrome and a host of other neurological problems either have too little of certain neurotransmitters or don't use them properly. This kind of neurological dysregulation is likely behind brain fog, pain amplification, and many more of our symptoms.
Here's another analogy to explain how this works (With apologies to my fellow arachnophobes):
Imagine a spider trying to use a strand of web to get from a chair to a table. It shouldn't be a problem, but an oscillating fan across the room keeps turning that direction and blowing away the web before the spider can get across. Now imagine that someone changed the speed on the fan so that it oscillated more slowly. Now, the spider has enough time to cross the gap before the web is blown away.
The spider is the message, the web is neurotransmitter, and the fan is reuptake. When you slow reuptake, the message has enough neurotransmitter to get where it's going. Reuptake inhibitors don't increase the total amount of neurotransmitter in your brain, but they do increase the amount that's available to use.
Modern reuptake inhibitors target specific neurotransmitters -- serotonin, and sometimes norepinephrine as well. They're called:
- Selective serotonin reuptake inhibitors (SSRIs)
- Serotonin norepinephrine reuptake inhibitors (SNRIs)
These drugs help a lot of people, but they have a high side-effect risk. One problem is that we don't have neurotransmitter deficiencies in every area of the brain, so the medication may improve transmission in one area while disrupting it in another. High levels of available neurotransmitter can be even more dangerous than low levels. If you're taking an SSRI or SNRI, be sure you're familiar with the symptoms of serotonin syndrome.
To see the symptoms linked to neurotransmitter deficiencies, read:
Those articles talk about non-drug treatments as well.
Have you taken SSRIs or SNRIs? How did they work for you? Does this help you understand how these drugs work? Leave your comments below!
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Thank you so much for sharing all your knowledge. I don’t feel so crazy or alone when I read your articles because I feel as if you are me.
I am from the UK and find it so difficult to get myself understood properly. I feel as if everyone around me think its all in my mind because I don’t look ill.
Bless you and wishing you the best.
Emine
Thanks for your explanations; I didn’t really understand what those medicines did to my brain before. I’ve taken all of those reuptake inhibitors (not at once!) and while they all worked at first, after a while they all caused my balance to get worse and I would start stumbling and falling. I guess they started causing problems in other parts of my brain; so maybe too much medication in a part of my brain that didn’t need it. Maybe someday there will be a way to regulate what part of your brain the medicine will go to.
Adrienne, after counting pills all day, and answering questions of patients on new meds, I must admit I have taken this article and printed it out for some of the people coming in for some of these meds. (making sure all credits go back to you…)
Tonight, I’m putting together some of the other articles you have in this article, so I can offer them to the patients that are interested in learning about the meds they are on, and what they do within the body. I had one lady who was so excited as she did not have internet access, and she came back in and said “Finally, something that makes sense!”
As I mentioned in the email, I think of you as one of the “Beacons” we are fortunate enough to have within the fibro community.
Over the years, I have learned that whatever we do as advocates in the realm of education, creating awareness, and trying to bring the fibro community into the light, it is still done one at a time. Not only do I appreciate the fruit of your efforts, but I understand what it is like to undertake such efforts!
Job well done!
Bob Hall
menwithfibro.com
Great explanation. I didn’t fully understand it before, and now I think that I do.
Thank you!
PLEASE BE CAREFUL WITH THESE TWO MEDICATIONS! My doctor asked me to try Savella just after I had stopped taking Cymbalta (60 mg daily). He didn’t know the danger of having too much of the reuptake inhibitors in the system. I started sweating profusely. I drank water almost constantly to rehydrate, however, I sweat through my clothes, through the bedsheets, and through the mattress pad. My internal temperature went from one extreme to another. I was in a climate controlled environment the entire time. On the second day, I was very weak, light headed, and was getting very confused.
My husband rushed me to the ER. Their first comment was, “You’re very dehydrated.” I tried to tell them I’d been drinking liquids as fast as I could for 24 hours. The combination of the old Cymbalta and the new Savella literally leached my body fluids out faster than I could put them back in. If not treated with an IV, there was an excellent chance that I would have gone into a coma and/or died.
BE PROACTIVE with ALL your meds. Read everything you can because, as I found out, not all doctors know everything they need to know about meds – expecially those for Fibro.
Thank you for the clear explanation of these medications
and for all your good information
I did not do well with Savella and am weaning off of it now
I was on Savella and Cymbalta at the same time. After taking the Savaella for about 3to 4 months and raving about how great and how painless I was, and I was a new person, the wires in my brain suddenly went haywire. I could not stop sweating profusely, This went on and on, I wet my clothes,bed sheets,and blankets, night after night. It went on for about 3 months as well. I also started getting extreme mood swings and could not stop crying or stop the negative thoughts from taking over. I stopped doing anything and went into a recluse state. My doctors gave me all kinds of tests, 24hour urine, blood works, and everything came up clear and normal. The doctors who put me on the med were both leading towards saying it was Serotonin overload, but either one wouldn’t admit that they should never have kept me on both med’s at the same time. It was a nightmare. Now after 3 months, the last test came up normal for all things leading to the extent of excessive sweating I had. My doctor said today, it was physciological. Can somebody tell me if I’m nuts, but what I was going through was very very physical. Not any of my docs said it was due to the med’s/ please don’t be on these med at the same time. I don’t even know if Savella is safe to take at all with this kind of side effect. I was on Cymbalta for years, but never sweated, but it really didn’t help with the fibro pain either. Finally my doc who put me on Savella gave me Clondine which cut down on the night sweating, but now I’m afraid to stop taking the clondine in fear I’ll start those horrendous sweats again. I need some sleep. It would literally keep me up all night long. This is a dilemma, but I will surely never go on Savella ever,ever again. thanks for all your help.
Sue, you are not nuts. I had a very bad reaction when I went from 10 to 20 mg of Cymbalta. At first, I felt better fibro pain decreased had more energy, then suddently I was sweating profusely, nauseous, throwing up, feverish…just a really sick feeling, all for TWO WEEKS. I have found that when my EBV titers are up, I start sweating more,at night. Also, I take T3 and depending on the absorption, I can feel it when it kicks in as I start “glowing” more.
I think it is pretty funny /(not)that no one ever bothers to test serotonin levels, yet you better test your thyroid to death before someone will prescribe treatment.
after being on ssri’s for 13 years, I developed porphyria cutanea tarda and was told never to take them again as there are no long range studies for these drugs as they are really only supposed to help with depression and not used off-label without further testing…PCT is a rare disorder that I was treated for for 3 years by having a pint of blood drawn every 2 weeks to get my iron levels down. The ssri’s seem to inferfere with my P450 or UROD mechanism and the body can no longer process iron…I believe that is the easiest explanation for this disorder. You cannot do out into bright sunlight and/or drink any alchohol or smoke…You skin breaksout with runny slow-healing sores and leaves scars after they finally do heal….I am now in a quandry because I have no recourse for meds for my pain; tried acupuncture and it worked for awhile and now only take advil and am suffering….If my iron levels and ferritin levels start to go up again, I will have to have my port reinserted and start all over again so I am leery about any of these so-called approved by the FDA, meds for fibro
Sue,
I can’t believe those doctors thought it was okay to be on TWO SNRIs at once! The sweating could well have been from high norepinephrine levels — it’s a common side effect. A lot of the other things sound like too much serotonin. Were you getting these from the same pharmacy, because someone really should have caught that! I’m glad you got off one of them and are doing better!
–
Valetudinarian,
I so agree about testing neurotransmitter levels! It seems insane to me that they can give us drugs that alter brain chemistry without any confirmation that those brain chemicals need to be altered. A doctor would never prescribe medication for blood pressure or thyroid (like you mentioned) without tests showing the need, so why aren’t we testing for neurotransmitters? I think it’s wholly irresponsible of the medical community.
I was adopted at 11 months of age lived energetic until 16 years of age when told about me being adopted.
I kind of like instantly matured yet did not feel lethargy/fatigue until realizing I had continued to live like an idiot until my 30 age range. As there is not much to do that is possible I guess being lethargic/fatigue enacted every now and again is not that much of a problem then.
Very informative blog article. Want more.