ProHealth Survey RESULTS: Antidepressants for ME/CFS and Fibromyalgia

[Firestormm]

I found the results from this survey rather interesting. Looks to have been a well conducted survey - though I can never find the time to properly read these things:

November 18, 2013

PRO Health Survey RESULTS: Antidepressants for ME/CFS and Fibromyalgia

Last month editors Karen Lee Richards and Erica Verrillo posted a ProHealth survey: Antidepressants for ME/CFS and Fibromyalgia. Results of the survey can be viewed HERE.

The reasons for conducting this survey were twofold.

• Antidepressants are among the most commonly prescribed medications for people with both Fibromyalgia (FM) and Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME), sometimes predating the actual diagnosis of the illness. For FM, the antidepressants Cymbalta (duloxetine) and Savella (milnacipran) are two of three FDA-approved treatments, and are therefore in wide use.
  
  
• In spite of the widespread use of these medications, there are relatively few studies of their efficacy or safety for this population. Doctors who have prescribed antidepressants to their FM and CFS or ME patients have noted inconsistent responses to these drugs, with roughly one-third reacting poorly. This finding was borne out in the 2008 survey conducted by the ME Association in Great Britain, in which 30%-38% of respondents reported that antidepressants, of all classes, made them feel worse.
  

Results

Of the 207 people who filled out the ProHealth survey, 52% stated that they had ME or CFS, 81% reported having FM, and 22% reported other ailments, such as migraine and Lyme disease. This means is that there are many comorbidities among people with FM and ME or CFS (i.e. people may have two or more diagnoses). What is interesting is that none of the respondents had been diagnosed with depression.

Of these patients, the majority (60%) had been ill longer than 10 years and were moderately severe to moderately ill (3-6 on the rating scale). Very few were either severely ill (bedridden), or mildly ill. The majority (54%) had taken antidepressants for more than 5 years at standard doses (59%). Nearly a third (31%) had taken antidepressants at higher than standard doses. The long-term use of antidepressants at standard doses implies that physicians are prescribing these drugs to patients with ME, CFS or FM as they would to patients with depression.

Of the 20 antidepressant medications listed, there wasn’t one that had not been tried by the respondents. In fact, each antidepressant listed had been taken by a significant portion of the respondents (range of 32% to 66%), with an average of 9 different prescription antidepressants per person. (Not all antidepressants were on the list - there are more than 60 - but the most common medications in each class of antidepressant were represented, indicating that physicians are prescribing a broad range of antidepressant medications to the FM/CFS/ME patient population.)

In a nutshell

• Every class of antidepressants is widely prescribed to patients with FM, ME and CFS, usually for a long period of time.
  
  
• Antidepressants, with a couple of exceptions, appear to benefit as many people as they harm, but the people in either camp are in the minority.
  
  
• In the majority of patients, antidepressants have no discernable effect on the illness.
  
  
• Nearly everyone with FM, ME and CFS experiences side effects while taking antidepressants, some of which are quite severe.

 

[barbc56]

What some people don't realize, myself included when first diagnosed, is that antidepressants help with pain. Long story short, when I moved and told my doctor what dose I was taking of Zoloft, I told him half of what I had been taking and three months of increased pain levels my doctor said we need to increase the Zoloft and it was then I realized what had happened. When looking over my previous records I discovered that there was indeed a discrepancy! The pain did decrease, but it's all relative. Darn fog!!

I don't remember why Tramadol is not considered an antidepressant and will have to look up this information.

 

[justy]

Two doses of an SSRI left me with severe Akathisia, anxiety, agoraphobia and suicidal ideation that lasted nearly two years - I was not depressed when given the anti d nor was I in pain.

I can say that it was the most horrifying and tortous experience of my life and its amazing that I survived it as nothing gave any relief and Doctors did not belive two doses of an ssri could cause that.

 

[Helen]

I think all gene tests for SNP´s in the methylation cycle, that have been posted here have showed mutations that might affect both vitamin B12 and methylfolate metabolism. My guess is that most of them have B12 and/or folate deficiencies . Each of these deficiences has been proved to be able to cause depressions.

So my second guess is that B12-and/or folate deficiencys have caused symptoms of depression, and as doctors in common are ignorant about signs and symptoms of either deficiency they try to treat the symptoms with antidepressants.

@justy, what a sad story about your antidepressant experience.

 

[barbc56]

Two doses of an SSRI left me with severe Akathisia, anxiety, agoraphobia and suicidal ideation that lasted nearly two years - I was not depressed when given the anti d nor was I in pain.

I can say that it was the most horrifying and tortous experience of my life and its amazing that I survived it as nothing gave any relief and Doctors did not belive two doses of an ssri could cause that.

How awful.

It's so important to get a psychiatrist who is up on the different medications. I actually became hypomanic on Wellbutrin. SNRI's make my BP spike as well as tachycardia and they are the ADs that are better for pain.

In my case, antidepressants literally saved my life. I started taking Zoloft decades before I got sick. If you need them, it can be trial and error finding not only the type of AD but also the dosage and this whole process can be very frustrating.

Any psychiatrist worth their salt should make sure you have had a recent physical. I was in a bad slump and when my psychiatrist ordered blood tests, it turned out I was hypothyroid and needed synthroid and not an increase in the dosage of Zoloft.

Years ago, I was deficient in B12 but didn't notice that much of a difference. However it is reassuring that my levels are normal.

We all react differently, don't we?