SSRIs as treatment for CFS?! Also Acupuncture question
Posted , 9 users are following.
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.
1 like, 43 replies
jackie00198 phil50852
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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.
phil50852 jackie00198
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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?).
jackie00198 phil50852
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phil50852
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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.
madge19860 phil50852
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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.
phil50852 madge19860
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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.
Patrickgeoffrey madge19860
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GeorgiaS madge19860
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I take the following herbs for energy and to lift my moods: St John's Wort, Damiana (shich synthesises very well with St John's Wort), Ginseng, Ginkgo biloba and Kola nitida, alternative versions - Kola vera or Kola nuts. They're not nuts; they're berries so I don't know why they're called nuts!
I take the herbs in tincture form because it's the easiest way for me.
It might sounds like a lot of herbs to take but I take other herbs too. I never have a problem with taking a lot of different herbs and a herbalist in one of my herbalism books says he also takes several at the same time. It's a matter of personal choice though and you could choose a few of the herbs I mentioned.
If you've lost your libido like I did you might find it coming back! Especially from Damiana and Ginseng.
phil50852 GeorgiaS
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No good regaining your libido without some energy to back it up, I think! haha
GeorgiaS phil50852
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Lol But it comes back because the herbs are giving you energy and sexual energy.
I know a couple of older guys who had ME and recovered with diet, herbs etc. One of them said that he knew he was on the mend when he started making love to his wife again.
My libido's coming back and I take that as a great sign that after over 10 years of ME and being bedbound that I'm slowly getting better. They both had it for around 10 years too.
phil50852
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An update from me - I saw the consultant rheumatologist today.
After quite a long and thorough examination and looking at my (many) blood test results over the last few months he confirmed he thought I had chronic fatigue. There are links between CFS and IBS, so it may well be linked to that in my case (I've had IBS for 15 years). He will write to my GP and send me a copy. There is apparently a specialist unit about an hour away who can offer a care and support package, including monitored exercise and CBT – which are the only 2 treatments clinically proven to be effective in alleviating symptoms. He’s suggesting that to my GP, as well as the name of the CFS specialist at Oxford if she wants another opinion (but he thinks that’s not needed, he’s quite sure this is what it is).
The consultant (unlike both the GP Partners I saw) dismissed the use of SSRIs altogether as there’s no clinical evidence they help, unless there are other psychological problems – and he detected none in me. I think he was quite impressed with my attitude really and the fact that I'd done my own research.
Best outlook seems to be that gradually I'll get more energy back but will have occasional relapses. He did underline that while few are cured from it, those who lie in bed all day and do nothing tend to get worse, not better (his words, not mine). So I'll try and get out for a short walk every day at the very least, if possible.
In the meantime, I've been taking 5-HTP but its not really had much effect on my sleep yet (after a couple of weeks) and still taking B12 and D supplements. I started lactoferrin supplements last week after a post on here - at the very least they might help the IBS. And have a 2nd acupuncture appointment set up for next Thursday (therapist has been on holiday since my 1st one 2 weeks ago).
I'm seeing it as a positive - at least I have a diagnosis now. My sick note runs out on the 20th so will discuss what to do then with m GP. I doubt they'll have the letter by then but at least we can start to move forward. Onwards and upwards, I hope.
Patrickgeoffrey phil50852
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I have been dealing with this since I was 17, I am 58 now, I find the only thing that helps is rest, I have had 3 relapses in the last 15 years,people get better sometimes anyway so I don't have much faith in any treatments,if might just be a coincidence when people get better,some people never do with treatment
jackie00198 phil50852
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Hi, Phil. It's great that you got a diagnosis. I do want to caution you about one issue: the graded exercise therapy (GET) recommended by the NHS. This kind of therapy is being hugely questioned and even debunked by many patients and researchers in the field. In fact, the statistics that drove GET I believe have just been made public, after several years of the powers-that-be trying to prevent this from happening. That in itself is suspect, in my opinion. This is not to say that you shouldn't do some kind of exercise or movement-- just be very careful and stop if you're feeling fatigue or if symptoms worsen, either during or after the exercise. I tried increasing amounts of walking when I first became ill, and crashed severely. I never recovered, and that was 15 years ago. As far as CBT--I've done that, too. It was nice talking to someone who understood my condition, but that could have been done with any kind of talking therapy. You are very lucky to have a mild case of ME/CFS. I think your prognosis is very good.
phil50852 Patrickgeoffrey
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Ultimately we are all different - otherwise I suppose, 1 person's "I took this pill and was cured" would work for us all. 3 relapses doesn't sound so bad - I seem to have had several a year, although they've never lasted this long, hence I just carried on without seeking a diagnosis. I have to stay positive.
phil50852 jackie00198
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Hi Jackie, that's very interesting to note, thank you. I'll read further up on the GET. I've already had 1 crash when I did too much after feeling a bit better (after 5 weeks) and been recovering again from that since - albeit incredibly slowly. I realise I'm lucky compared to many, which makes me all the more determined not to whinge and moan - there are always those worse off.
Patrickgeoffrey phil50852
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Actually 3 in the last 15 years has been really bad the longest was 6 years and I was walking with two canes and using a wheel chair on really bad days,the last relapse lasted over two years, I didn't work for a year to recover at great clinical l hard ship,All were triggered by the flu, I came down with the flu in January of this year, I struggle to walk 100 meters now, I am on light duty at work but even that is difficult,besides going to work I am basically house bound , I only go out to buy groceries and struggle to walk my dog,the relapses totally put my life on hold, I have never been diagnosed with CFS,my problems started at 17,I dropped out of highschool and spent a week in hospital, I was house bound for 6 months,at 18 I had another relapse the doctor thought I had mono but all the test came back negative , I always recovered faster when I was young and my symptoms weren't as severe,but after 40 things just got a lot worse, I am 58 now it has been a long journey without answers, I am going to see a new doctor next week, I do have a referral to see a specialist I have seen before,one of my former GPs is now the director of a large city hospital I even saw a specialist at his hospital once,the specialist said my problems are probably caused by a virus but there is no test to determine which virus and no treatment,since then I have realized the flu virus is the trigger when ever I get the flu now I have a relapse that starts with the flu years ago there was a delay and I didn't realize the connection, I have never been diagnosed with CFS because I sleep well and wake up rested, I always feel stiff and sore like I just ran a marathon,sometimes when I wake up I almost feel paralyzed it takes me a while to get moving,over the years I have had just about every test there is,even a muscle biopsy,mri,spinal fluid tested all the specialist said was I can tell you what you don't have, I do get the pressure headaches I share a lot of symptoms with CFS,that is why I joined this group nothing else seems to come close,but without the sleep disorder so doctors can't diagnose me with CFS I need time off work to recover but can't afford to right now without a diagnosis I have never been able to even get short term disability, I am hoping the new research will lead to a diagnostic test for CFS to answer the question do I have CFS,41 years is just too long to go without answers, I turn 59 in November I can't afford to retire before 65, I don't think I can keep working much longer thou,after work I sometimes have to rest for 1 your before I drive home my arms and legs just get too sore from working
jackie00198 Patrickgeoffrey
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Patrick--Do you have post-exertional malaise (PEM)? That's a key indicator of ME/CFS, as I'm sure you know. In other words, when you do an activity, do experience exhaustion, way beyond the norm? When I was first diagnosed, I didn't have sleep issues either. I had PEM, a sore throat, and in general was extremely fatigued. I had bloodwork done by two GP's, which turned up normal. So I then saw a specialist at UCLA (I live in Los Angeles), who diagnosed me almost immediately. I then applied for disability, was refused, and appealed the decision with a letter from my doctor and other details I supplied. I got the disability, and never needed a lawyer. Do you mind saying where you live? If it's in the U.S., I know some foremost ME/CFS researchers around the country that might be able to help you, at least with a diagnosis. Of course, you seem very knowledgeable, so maybe you know them as well.
Patrickgeoffrey jackie00198
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jackie00198 Patrickgeoffrey
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In the new U.S. Institute of Medicine (IOM) guidelines, there are four core symptoms of ME/CFS: PEM, fatigue, cognitive problems, and sleep problems. In a lecture I just watched by Dr. Lucinda Bateman (foremost specialist in ME/CFS), she said that 90% of people with ME/CFS have sleep problems. So you may well be one of the 10% that do not experience these problems. That does not mean you don't have ME/CFS. Good luck with your specialist.
Patrickgeoffrey jackie00198
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phil50852 Patrickgeoffrey
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Apologies Patrick - when you said about relapses, I assumed (as mine had been up to now) they were quite short term. Wasn't belittling your condition in any way.
Patrickgeoffrey phil50852
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