Hi all, I'm a 52 year old man in the UK and my symptoms are exhaustion - heavy legs, generally tired out, brain fog. My GP after running lots of blood tests thinks its CFS and has referred me to a rheumatologist at the hospital to confirm the diagnosis (I don't get to see him for another 2 weeks). On the UK scale, its probably "mild" with the odd day of "moderate".
When my GP first suggested it was probably CFS the first thing she wanted to do was put me on SSRIs! I am naturally resistant to the idea of anti depressants to be honest - especially when I'm not depressed. I've been told boosting serotonin levels can help with CFS and its not JUST for depression - but I can't actually find much online to support that. I went back to a different GP partner the other day as I'm still not well enough to work after 7 weeks and the first thing HE said was for me to think again about SSRIs... So does anyone have any experience of that and it helping? I really am not in any way depressed - I've done a bit of meditation and hypnotherapy over the last few weeks and generally I am feeling quite laid back and stress/anxiety free (my employer is currently very supportive) - although the brain fog making writing and concentration more difficult is a nuisance, I am adapting to the lack of any energy thing and coping ok.
Conversely, a friend suggested acupuncture - and I can find a few articles suggesting it has helped with CFS. I am actually going for my first session with an experience and well qualified acupuncturist tonight. Has anyone any experience of that? And has it helped? I do have a friend in Switzerland who says its helped her a lot.
Thanks in advance for anyone's shared experiences.
When I first got ME a doctor tried to put me on SSRIs even though I kept telling him that I wasn't depressed. I didn't take them. I use 5-HTP for serotonin. I find it's very calming and I sleep well at night. I wake up feeling much better than when I don't take it.
I've never tried accupuncture but my friend, who has Fibromalgia, says it's helping her immensely! She keeps trying to get me to try it and I might.
I am very familiar with your symptoms,I am a 58 year old male,the last 15 years has been really bad for me,3 relapses triggered by the flu,the longest was 6 years,there has been a land mark paper published August 30 this week on ME and CFS by the university of California your GP should read it they have identified biological markers for ME and CFS with will lead to a diagnostic test for ME and CFS this is the best news about ME and CFS I have ever heard,they also lust the triggers,influenze is on the list,there is a long list of viruses and bacterial infections that they identified as triggers,they found biological markers for ME and CFS patients,the markers are different for men and women,they also found that cells go I to a protected hibernation state as a defense against infection which causes the heavy tied feeling in patients
Thanks very much for that info Patrick! Fascinating about cells going into hibernation, makes sense.
I get the ME research magazine Breakthrough from ME Research UK sent to me and there's an interesting article on a study in my latest one. It's about oxidative stress and the role of Nrf2.
'Low Nrf2 levels are found to play a central role in the increased oxidative stress found in ME/CFS patients, stimulation of Nrf2 could become the target of further research'.
Another,linked, article in the magazine found 'Abnormal connections among brain regions and reductions in white matter (in the brain) that continue as the illness progresses...white matter is thought to be highly susceptible to inflammation and its loss could well be the result of chronic oxidative stress or an ongoing infectious process'
There are certain foods and herbs that promote Nrf2 (the Master regulator) so help with oxidative stress, such as brocolli, Ginkgo biloba, blueberries, cabbage, sprouts, onions, milk thistle, green tea, turmeric, black pepper.
Hi, Phil. It sounds like you've gotten a correct diagnosis and referral to an appropriate specialist, which both are very good things. Many many people with ME/CFS go for years without this diagnosis or referral. Also, you've very lucky that you have a mostly mild case of this illness. Now for the other issues. When I was first diagnosed (which happened quite soon after I became ill), I was so sick I could barely lift my arm. I had a severe case of ME/CFS. My doctor prescribed a tricyclic antidepressant: Doxepin (brand name Sinequan at that time). I don't know if doxepin goes by the same name in the UK (I'm in the U.S.). Like you, I had no depression or anxiety. The doctor explained that at the low dosage he was prescribing (40 mg), the doxepin was being used as an immunomodulator and not an antidepressant. For antidepressant properties to kick in, a much high dosage would be required. He was an eminent physician at UCLA, so I followed his advice. I had to ramp up very slowly on this med, as I'm supersensitive to drugs. When I reached full dosage, I became very close to normal again. So I went from barely being able to lift my arm, to being able to travel. It was truly miraculous. Unfortunately, this doctor neglected to tell me not to push myself, so when I took a trip to San Francisco, I became acutely ill, and have never recovered. I then tried acupuncture for a long period of time. It didn't help me, but I've heard it can help some people, so I'd say it's definitely worth trying. I wish you the best. Just don't push yourself.
Thank you so much for posting information about that study. I've just read it. From everything I'm reading, we're finally entering into a time where ME/CFS is being considered as a serious illness, and good research is also finally happening. It's about time.
Excuse me for jumping in on your conversation here. JK--I believe the article you're looking for was published by the University of California San Diego School of Medicine. Google "University of California Chronic Fatigue Syndrome," and click on "Researchers Identify Characteristic Chemical Structure..." At least, I think that's the article being referred to. If I'm wrong, someone please correct me.
Hi Jackie, thanks for sharing. Sorry to hear you are so ill with it. That's useful. I can see that over here tricyclics have been replaced with SSRIs pretty much so I'll check out their being used as an immunomodulator (I'm guessing after you pushed yourself they stopped working?).
Well, I was feeling very strange yesterday - even pottering about the house, my legs had virtually no strength and were wobbling all over the place. So rested on the bed most of the day until the acupuncture session. Can't say I felt much change, although this morning the brain fog has certainly lifted quite a bit - may well be coincidental of course, I wasn't expecting to run and jump out of there! But the therapist said I should have "3 or 4" sessions and was also honest about it not working for everyone. So, I keep an open mind and will see her again - unfortunately not for 3 weeks as she's away.
Georgia suggested 5-HTP as a serotonin stimulant and as I'd read about that a few years ago and forgotten all about it, I thought it was worth giving a go too - if in a couple of weeks my sleep patterns regulate a bit, that would be a big plus.
Thanks to all contributing, I also have some reading up to do. May we all have better days.
I was prescribed Zoloft (an SSRI) and found that , while it gave me some energy, it also made me feel very shaky and anxious after a few months. After a year on it, my hands began to visibly shake. At work, people kept noticing. Not enough was known, yet, about whether the ability to produce enough dopamine is temporary or permanent, and since people with low dopamine can get Parkinson's-like symptoms. he advised me to taper off the Zoloft and not take an SSRI again. So, I just try to live with the fatigue, etc., and have to rest a lot. Hope this helps someone. If an SSRI makes you feel shaky or gives you anxiety, it may not be for you.
That sounds awful, sorry to hear that. My GP did suggest he wouldn't leave me on the tablets very long but I think I'd like to exhaust other options first.
One of my symptoms is shaking,sometimes when I walk 100 meters I will start shaking when I stop,people at work ask if I am ok, I have never been prescribed any medication for me exercise causes the shaking,this has been on going for 15 years
Quote:Robert Naviaux, at researcher at University of California, San Diego, published a landmark paper yesterday on the metabolites of patients with ME/CFS. It made news around the world.