ME / CFS, why oh why do you flare up so?

27 May
ME / CFS symptom flare up burns like fire

ME / CFS symptom flare up burns like fire

For a few days this past week I’ve not felt good. My arms and legs ached so much it felt like burning inside me. My joints hurt. It hurt to keep my neck upright. I was cold, always cold and just couldn’t seem to get warm. My muscles felt tight and sore like I’d run a marathon (how I imagine I would feel given I’ve never run one!). I had a sore throat and was pretty emotional, spontaneously bursting into tears. I had trouble concentrating and following a discussion. My kidneys hurt. I was pale and washed out and my fatigue was worse than usual. In short: my ME / CFS symptoms had spiked.

A symptom flare up, sharp as a cactus.

Symptom spikes in ME / CFS sharp like a cactus.

When such a spike in symptoms occurs I have to use all my mental strength and energy to quash the fears and thoughts that arise. This is where NLP STOPs have a part to play. The thoughts and fears that commonly arise for me are things like:

  • I’m relapsing
  • I’ve done too much
  • I’m stupid, I should be able to do this by now
  • I’m coming down with a cold or virus
  • My body hates me
  • The Philadelphia trip has finally caught up with me
  • I’m not managing this illness as well as I think I am
  • I’m not getting better
  • Pacing isn’t working, it’s impossible to do it ‘right’

A big part of the stress a flare up of symptoms causes for me is that it throws into question my pacing ability, or lack thereof. What I thought was my baseline is actually perhaps only my baseline for my average days, not my bad days. I should take my activity levels down a notch or two – but that’s so frustrating when your activity level is already pretty low – 20 minutes for yoga and computer time, ten minutes for piano etc. It makes me stress that I’m mismanaging my ME / CFS and doubt the likelihood of my recovery.   Although I’ve been pacing for several years now, it is still tricky. Even when I think I’ve managed things reasonably well and am acting within my limits, I still get hit with the post exertion fatigue which is just so FRUSTRATING. 

Aside from trying to quash the inevitable negative thoughts and subsequent stress that arise from a symptoms spike, I also seem to do a lot of soul searching for a cause to explain away the spike. This week some of the possible reasons that come to mind are:

  • I’ve done too much this week, I had my hair cut on Monday morning and went out for dinner that night to celebrate my Dad’s birthday – but I was only out of the house for no more than 3 hours for the two activities combined and I rested in between…
  • I’ve pushed myself too quickly with my paced walking (I went from 15 minutes up to 18 minutes and then up again to 20 minutes this week) – but it felt okay at the time…
  • Doing two lots of yoga in one day (as well as walking for 20 minutes) was stupid – but the yoga was very gentle, especially the second session which was restorative poses, and only for 20 minutes each time…
  • I’ve been spending too much time on the computer – possibly but each session I limit to 20 minutes which I thought I was okay with…
  • Is it the new FODMAP elimination diet I’ve started this week, possibly detox symptoms from that? – don’t know, could be, but my gastro symptoms have improved so much in just the 5 days I’ve been eating low FODMAP and it wasn’t like I was eating a bad diet before I started on low FODMAP so would the change really induce detox?
  • I’ve been thinking a lot about the future and worrying….internal stress…

So there are lots of possible reasons why I’ve suffered from a symptom spike this week. The cause is probably a combination of all of these reasons. They all seemed okay on their own, but put all together, they were that bit too much for me. All I can do now is to take note and learn from the experience. I have to remember that I’ve had (many) flare ups before and they don’t last forever. So I need to remember that I will come out the other side of this spike. It is not a relapse. It is ‘just’ a little flare up of my ME / CFS. It is ‘just’ a symptom spike.

Until then I must KEEP CALM because stress is only going to make the already vulnerable situation worse. Time for me to take a deep breath and do an ALMIGHTY STOP I think!

How do you handle symptom flare ups and frustrations?

If you’ve enjoyed this post, why not READ MORE with my posts about NLP and calming stress in ME / CFS.


12 Responses to “ME / CFS, why oh why do you flare up so?”

  1. Hayley-Eszti May 27, 2013 at 1:49 pm #

    I’ve had a spike the past couple of weeks, I’ve taken steps backwards and I haven’t been able to move from bed. The only thing I can put it down to us that I had minor surgery 2 weeks ago, other than that I haven’t done anything that would cause a setback. I’ve been sobbing and feeling so frustrated and upset which the particually bad days and weeks do to me. I just try to eat well and rest rest rest to get myself out of it. I hope you begin to feel a bit better soon, M.E is so unpredictable and it can kick you when you least expect it.
    X Hayley-Eszti

    • myjourneythrume May 28, 2013 at 9:52 am #

      ME is soooo unpredictable isn’t it, that’s one of the most frustrating things about it I think. Like you, I rest loads and eat well during a spike. I hope you start to pick up soon. I think the stress of surgery, however minor, can have a big impact on ME symptoms. I really hope you start to improve really soon. Jx

  2. Jackie May 27, 2013 at 8:03 pm #

    “My kidneys hurt.” Okay, tell me about this! I have had this symptom since I was 9 and have never heard anyone else say their kidneys hurt, ever.

    • myjourneythrume May 28, 2013 at 10:59 am #

      Now you mention it, I’ve never come across anyone saying it either. When I say “my kidneys hurt” I mean the sides of my waist are incredibly tender and sore to touch. It’s not usually an acute pain (only on really bad days) more of a constant ache, with real soreness if I touch the sides (and round to the back) of my waist. If I press hard in that area it really really HURTS. So tend not to do that! I do sometimes rub with my thumb in an effort to massage the pain, not sure that helps really either! Looking back it’s a symptom I’ve had for a long time too. Before I got sick I used to put it down to my kidneys detoxing my body as the pain would flare up often the day after I’d been out drinking the night before. But since getting sick, and no longer really drinking alcohol, I still get it so I don’t really know what causes it – like so much with ME / CFS! Does that sound similar to what you experience?

    • E. Milo May 28, 2013 at 5:46 pm #

      Hey Jackie and Jess, I thought you might like to know that Patrick over at talks about his kidney pain a lot. It was one of his main ME symptoms.

      • myjourneythrume May 28, 2013 at 6:03 pm #

        Thank you v much for commenting Elizabeth, that’s really good to know. I shall definitely have a look at Patrick’s blog. Thanks 🙂

  3. allan leslie johannesburg south africa June 18, 2013 at 4:24 pm #

    just found your blog site today.
    if i was eloquent it could be myself writing .

    • myjourneythrume June 18, 2013 at 4:34 pm #

      Thanks for the lovely comment. I’m pleased you’ve found my site and relate to what I’m writing about. I hope you’re having a ‘good’ day.

  4. Sylvia Rogers September 29, 2014 at 5:34 pm #

    I live in Mexico and had Amoebic Dysentery for three weeks. I went out to brunch after I got well with one of my best friends. Other people came to the table, and I couldn’t introduce her because I couldn’t remember her name! Then I came home and napped. Back in bed today. I never tell people I have this. The CFS put such a stigma on it. Glad ME is the new name. MUCH more appropriate.

    • myjourneythrume November 18, 2014 at 9:25 am #

      Sylvia I feel for you so much. I’ve been in the same situation where I just can’t remember a name. It’s so frustrating and embarrassing. The name CFS totally undermines the seriousness and severity of the illness. It is SO much worse than just chronic tiredness. If only it were just that! ME gives the illness a more serious medically appropriate name though here in the UK the name ME has had a lot of stigma attached to it as people just don’t understand the illness and as the symptoms often aren’t obvious to bystanders they see ME patients as being lazy or not really ill. This was really bad here in the 1980s and 1990s and is improving but I’m still afraid of mentioning I have ME sometimes for fear of what others may think. I hope you are doing okay.

  5. Stacey March 17, 2015 at 1:04 pm #

    I’ve had a terrible flare up recently! I have a job as a support worker (how ironic!) and I had a flare on the Sunday, exhausted, in agony, weak and couldn’t leave my bed. Although my shift started at 5:30pm I felt fine by then, silly me went to work and by 7:15pm I had collapsed out cold onto a clients kitchen floor!! Took the rest of my shift and the next day off and although felt tired and kept returning to bed, overall felt better. Tuesday has come round and my shift was 8am-12pm and I am in complete agony, I just want to cry. My right side is totally dead and I have been the biggest waste of space ever today. My job is very active and I’ve coped for 6 months without a flare. I believe my body has been fighting for the 6 months and has now taken a tantrum and isn’t playing anymore.

    I hope I don’t have to leave my good job for this, I’m only 19

    • myjourneythrume March 19, 2015 at 4:09 pm #

      I’m so sorry to hear this Stacey. I hope your flare has calmed down a bit by now. You’re not a waste of space at all, your body just needs a break right now. Don’t give up hope, you can get back to flare free. Well done for listening to your body and taking your shift off, I know it’s hard but it sounds like that’s what your body needs at the moment. Sending you lots of support and strength.

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