I discussed the use of Fludrocortisone as a CFS treatment in a blog entry found here: https://livingwithchronicfatiguesyndrome.wordpress.com/2010/07/27/fludrocortisone-for-cfs/ I have now been on Fludrocortisone for 2 ½ months. I have been taking 0.1mg of Fludrocortisone twice a day.
The Effects Fludrocortisone has had on me
Fludrocortisone has had one minor positive effect on me- My ‘crashing’ has become less severe. The word ‘crashing’ is often interchanged haphazardly with the term ‘post-exertional malaise.’ In a previous blog entry I discussed the misnomer that is ‘post-exertional malaise’ and how the term ‘crashing’ is a more appropriate, albeit slang description of this ME/CFS symptomatic phenomenon. This blog entry can be found here: https://livingwithchronicfatiguesyndrome.wordpress.com/2010/07/18/how-to-gain-relief-from-%E2%80%98post-exertional-malaise%E2%80%99/
In the above blog entry, I also detailed my limits as:
- “Not being able to be out of my bed for more than an hour a day.
- Not being able to talk too much. It takes a lot of energy for me to talk and I can only say about 200 words in an entire day. This is equivalent to you reading about 2 paragraphs out loud and then not being able to speak for the rest of the day
- Not being able to walk very far. My limit is 100metres (or about 1 minute.) Some days my limit is less as I may go to my letterbox and back and then ‘crash.’
- I cannot tolerate much stimulus.
- My ability to cope with stress is impaired, so I purposely try as hard as possible to avoid conflict around the house.
- I am not able to think too much. For instance if I played a game of chess I would definitely ‘crash.’
- I’m unable to leave my house for long. If I have been driven away from my house and spend 30 minutes in the car before returning to my house, I will ‘crash.’”
Since taking Fludrocortisone, these limits have remained static however the intensity of the ‘crash,’ consequential of exceeding these limits has been reduced. Within the same ‘Post-exertional malaise’ blog entry, I described the severity of my ‘crashing.’ I wrote that
“This concept of crashing is difficult to convey to someone who hasn’t experienced it. As my CFS has progressed from mild to moderate to severe, the severity of my crashing has also increased proportionally. If I go outside just one of the limits mentioned above I will crash. For me at the moment crashing involves lying in bed for up to 2 weeks. I feel like I am a vegetable and am unable to role onto my back. I lie on my side and every few minutes spit mucus into a bin. I am unable to talk at all as my body has been draining of the little energy I had. The pain of crashing is like no pain I have ever experienced before. Prior to CFS I had only moaned in pain on 2 or 3 separate occasions when I was ill. When I crash I moan in pain for days on end and my body just feels like it’s begging for mercy. My cognitive abilities are also severely affected when I crash and if I was asked what 2+2 equals, I wouldn’t be able to tell you as my mind shuts down. This crashing lasts from several days to several weeks if I go outside just one of the limits mentioned above in the above ‘limits’ paragraph.”
Fludrocortisone has reduced the severity of my ‘crashing’ by approximately 15%. When I reach a ‘crashed’ state, I will now be in slightly less pain than prior to my Fludrocortisone treatment. My ‘crashed’ state will now also be of a slightly shorter duration (on average) than pre Fludrocortisone treatment.
The remainder of my symptoms have remained unaffected by Fludrocortisone. Despite this, I am pleased that one of my most severe and debilitating symptoms, ‘crashing’ has reduced in intensity and length. This reduction is minor and I am still in a quasi-vegetable like state for several days when I have ‘crashed.’
In a blog post prior to my Fludrocortisone treatment protocol, I speculated that Fludrocortisone may have an effect on me due to “Liquorice helping me when I am in a crashed state (and) liquorice root having a similar mechanism of action as Fludrocortisone.” When I took liquorice root prior to beginning the Fludrocortisone treatment, my ‘crashing’ experienced a mild reduction in intensity. It appears that Fludrocortisone has had this same effect on me due to its similar mechanism of action as liquorice root.
Side effects of Fludrocortisone
I have not experienced any significant side effects while taking Fludrocortisone. I had a blood test two weeks ago and my electrolyte levels have remained normal despite taking the Fludrocortisone (I have been taking a potassium supplement, salt tablets and a slightly increased fluid intake accompanying the Fludrocortisone treatment.)
I will continue to take the Fludrocortisone and although it has only had a minor positive effect on my ME/CFS, I believe this effect warrants a continuation of this treatment. In 3 months time I will again reassess the Fludrocortisone treatment.
Low Dose Naltrexone
After six months of LDN, I had not experienced any significant side effects and equally I did not believe that I had experienced any benefits from this treatment. After thwarting the LDN, the quality and length of my sleep began to diminish. After three weeks of this disturbed sleep, I restarted the LDN. After restarting the LDN, my sleep patterns were immediately rectified. During the six month course of LDN, although I didn’t notice it having a positive effect in terms of aiding my sleep quality or length, it may have been having a gradual effect in these areas. In other words, although I didn’t notice LDN providing an instantaneous or short term benefit, it may have been aiding my sleep quality and quantity when the six month treatment trial was analysed holistically. Another possibility is that my sleep quality and quantity may have deteriorated independently of the LDN during this six month period and the LDN maintained my high sleep quantity and quality level. A final possibility is that my body became accustomed to LDN’s mechanism of action and the three week period of diminished sleep quality and quantity was due to my body’s inability to adapt to this treatment change. Consequentially, I may have eventually retaining baseline levels of sleep quality and quantity once my body had adapted to the lack of LDN.
Gaining quality and plentiful sleep is regarded by many ME/CFS specialists as a prerequisite treatment for ME/CFS. I did not wish to experiment to determine the precise reason for my impaired sleep quality and quantity consequential of ceasing the LDN treatment. Due to this reason, I restarted the LDN treatment again. I will continue this treatment for an indefinite period.