My dizziness and energy seemed to be significantly lifted from vitamin c and the range of natural therapies I was using, however the next big hurdle to recovery was the residual anxiety that I was left with as a result of my fear that the cfs might return.
This was a tough part of recovery as it was now actually my mind that was causing my symptoms and it is a big stigma with CFS that it may all be in your mind.
My fear that I may get sick again was causing the anxiety which would cause the physical responses of raised heart rate, heart palpitations, light headedness, lethargy etc.
This became very intense for me after I did a runner from the heat of north Brisbane, moved to the Gold Coast and started a NEIS course (New Enterprise Incentive Scheme). My body was coping with activity enough to be reentering life so to speak, but I was then faced with hard core anxiety.
Sure I’d had anxiety before but more like worry or distressing thoughts etc, nothing with such physical responses before. At the point where I was actually able to start functioning to the point where I could think about taking on work / study again I had been using the positive visualisation techniques that Ashtok Gupta teaches in his Amygdala Retraining Program. I found his process for stopping distressing throughs and focusing on a positive visualisation great for turning the tide on the flight responses that were keeping me in my CFS loop. This is a great blog post on a review of Ashtok’s program. However once I started the NEIS course I I started to experience heart palpitations at any time, not necessarily at the time I was having the fearful thoughts. This was weird and of course pretty scary.
So it was at this point that I started taking pristique and getting regular therapy with a psychologist. This has been a very interesting journey over the past two years and I’ll slowly uncover some of the great things I’ve worked through in coming blog posts. Pristique is apparently a pretty new antidepressant which is good for anxiety and has been very useful for people recovering from CFS. I’ve found it helped a lot. Nobody wants to be panicing about panicing 🙂
Of course I’ve also been trying to incorporate all the other things that help with anxiety like eating regular protein, drinking enough water, getting enough sleep, doing stuff that makes me feel good like swimming in the ocean, hanging out with my ma and friends and getting some exercise, yoga and meditation. All stuff I’m constantly trying to ensure are a priority in my life.
What have your experiences been with anxiety and what has helped you most to get ontop of it?
Hi Mel, I’ve really enjoyed your blog and you have helped to restore my hope a bit on actual recovery 🤗
I contracted meningitis for a second time – which is apparently unheard of – 5 years ago and was Dx with CFS about 12 after that. I had been Dx with depression 6mths after contracting meningitis because I just wasn’t recovering. It’s been a frustrating journey with many speed bumps, but I’m at a point now where I have acknowledged my current limitations. This has been a major issue for me! I just refused to accept what my body was telling me – went back to the workforce on 3 seperate occasions over the past 3 years on greatly reduced hours only to crash & burn for months afterwards. However with acceptance came freedom to think more laterally and I have opened my creative door and am in a really good place now. Like you, I rest/nap when I need to. I am limited to one social Occassion per weekend without serious after effects and although life is seriously slower, I am trusting my body and doing what I need to to have an increasingly positive quality of life.
I recently commenced on Amodafalin which is a slow release stimulant and it has made a huge difference to my cognitive functioning, though I’ve had to trial various doses as too much can trigger relapse symptoms, but it’s been worth it for me.
Thank you for sharing your journey 😎
Thanks a lot for your post Lynda. Much appreaciated 🙂 Yes it sounds like you are doing it tough as well love. It’s painful hey. I had a few lessons to learn with how I was re-aggravating things as well. I’ve found stress to be a really big player. Staying happy and balanced and not letting things worry me has really helped. Easier said than done I know. But I’ve taught myself to just hand things over to the universe and know that it will be as it is meant to be. It really does just free me up from the pressure and stress. Things are turning out ok. Actually better than ok. But I do have to keep an eye on eating really well (nutritious and regularly), resting when I need it and not getting stressed and overwhelmed…. What have you found with your creative pursuits? I’d love to hear 🙂
Hi Mel! I’ve been enjoying yoir blog and noticed you haven’t posted in some time. I’m hoping that you’re fully recovered now? I was Dx with PVFS in Jan 2016…. After an acute illness in December 2015. Drs said I would get better quickly as I was otherwise healthy. I’m 38 and it’s been a year. Still not better. I have days better than others which is great
But currently going through a hard time as ny symptoms have gotten worse. Really tired, sleepy, body fatigues, joint and muscle aches, Heaviness, twitching and weird sensations in my feet. Buzzing. Anyway, I’ve loved reading that people do get better. In fact my gp tells me she expects me to gradually improve over years. Yay. 🙁 how long were you sick for and did you have similar symptoms? I’m a mum of two young boys and stopped work nearly a year ago as I was too unwell. I feel hungover and unwell most of the time. Legs are the worst. Siiiigh.
Thank you x
Hi Kate,
I’m really sorry to hear that. I have recovered from CFS but I do still manage fatigue with nana naps after lunch if I need it and the occasional wellbeing day if I’m feeling that I’ve been pushing too hard. I generally live a lot differently from when I become ill. A lot less go, go, go. But I also have found that once well I have slipped back into some of my old habits like chocolate for comfort food and not eating or exercising as I should be. So I am working on getting that back up to scratch again. But honestly my life is great. I am running a business and having a social life, keeping my house beautiful and I also have a wonderful veggie garden that I’ve just rejuvenated. I do think you need to play an active part in recovery. A good reminder for me now really. Keeping up the nutrition intake, keeping stress at bay and enjoying relaxation activities to boost the good internal vibes, sleep management and the graded exercise come to mind as real keys. Check out the essentials blog post for the full list of essentials to work on. https://greengirlfightsfatigue.com.au/essential-self-help-treatments-for-chronic-fatigue-cfsme-recovery/. How are you managing Kate? Thanks for your message. Hope things may be improving for you since you posted.
Anxiety has been the big killer for me through the whole CFS thing; it’s the main thing I’ve really suffered with. Although I haven’t found a quick-fix, physical movement, daily meditation, guided visualizations, group therapy, talking to people who have recovered from CFS, pursuing non-CFS-related goals and hanging out with healthy people who don’t know what CFS is have all helped. The other week I went to a kirtan with the Hare Krishnas, and that certainly took my mind off the anxiety. Those dudes are seriously happy.
I now play tennis on a regular basis, play drums in a band, body-surf whenever I get the chance and have a paid role in an upcoming play. 3pm in the afternoon is still crunch time for me, but I’m moving on with life as best I can.
I believe my anxiety is related to unresolved tension in my nervous system. Sometimes it wells up to the point where I vomit, like I used to back when I had really bad migraines. I think it’s all connected.
I often think of you Mel and wonder how you’re going; it’s great to hear that you’re moving forward too. 🙂
Thanks Graham, really great to hear from you. It is amazing how full on anxiety is. I had depression quite a few times in my life but the post CFS anxiety was something completely new to me and it was really scary. I really didn’t pay much attention to that side of CFS until the post part when I felt I was getting some improvements in the energy and dizzy areas, but that anxiety thing seems to stick like glue. The best thing I find now is making sure I give enough time to eating well, resting and taking time out for good vibe stuff like swimming in the surf. Swimming in the surf I think is the answer to a lot of problems 🙂 Nothing like saltwater. And of course having someone to talk to about the crap going on in your head has been priceless for me:)
Thanks for your post. I think it is hard to talk about the psychological side of CFS due to the stigma as you said. But I have found the same thing as I recover, but I also found myself stressing myself out and making myself dizzy, which. Initially I didn’t think was possible, i thought it was purely physical. But as I started to be more of an observer if my patterns it seems it is possible! I have read a bit about the problems/difficulties about returning to normal life. At the moment I’m a bit stuck because I can’t find work, and that in itself is hard enough without adding a lack of trusting your body to cope with it and a long absence from the workforce.but I’m trying volunteering and keeping busy and focusing on taking it easy, rather than pushing myself. I also found Jon kabat zinn’s book, Full Catastrophe Living, very helpful. It’s about mindful Meditation for people with an illness in their lives.
Thanks a lot for your comment Sarah. Yes I started looking at the working for myself from home thing and that slowly panned out for me. I still work from home now which is great because I can allow myself to work according to my energy levels, that is I can have a powernap after lunch if need be, get up early when I’m fresh and get into it, rest if I’m just hitting a wall, work later into the afternoon if I’m on a roll. It has been the best thing for me. I slowly built up my time and now pretty much work full-time but manage to take time for myself if I need it. So far so good.