Missing More after graded exercise therapy is a series of posts from the perspective of people with ME, for ME Awareness Month (May). It ties-in with the #MillionsMissing campaign: many people are missing more of normal life unnecessarily because they were given bad advice to exercise with ME.

If you have a story to share about exercise and ME see this post for instructions about how to contribute.

Medical advice is often unequivocally positive about exercise being good for our health. Popular thinking suggests that there is “no pain, no gain”. Unfortunately this is bad advice if you have ME and many of us have had to learn a very harsh lesson. This is Kathryn’s story:

I was always led to believe, by my doctors and consultants, that exercise would prevent my ME/CFS from getting worse. I also used movement to try and help alleviate pain. I wish I knew then what I know now!

Exercises I was given in graded exercise therapy:

– holding a heavy bottle or jar out at full arm’s length for 1 minute

– doing lunges for 1 minute

– doing squats for 1 minute

– doing 10 press-ups against a wall or sideboard I reported back increased body pain and chest pains (I was actually wearing a Heart Rate Monitor at my first visit!)

– she relaxed the arm exercise to holding arms out, with a lighter bottle or jar, moving arms back toward my body, then back out to full stretch etc for 1 minute

– Sitting against the wall for 30 seconds

– Standing up on toes 5 times (feet together)

– Standing up on toes 5 times (feet pointing out)

When I tried this, my legs were crippled with pain and I was unable to walk the short distance to my desk any longer. My legs collapsed underneath me several times, my breathing was laboured and I had to nap almost constantly

– she dumbed my exercises down some more, reducing the wall sit to 15 seconds

– Standing up on toes, but not holding it there, just relaxing straight back down

– No more squats or arm exercises I still had wobbly legs and chest pains.

My pulse was 94 at rest – she then split all the exercises to have rest breaks in between and toe points were done seated instead of standing. I tried to maintain these when I wasn’t in a flare, right the way through till when I collapsed with severe ME.

There are no doubts in my mind whatsoever that graded exercise therapy contributed to my deterioration. It happened over the time I was under the Pain Clinic. I went for help. I was made worse.

Pain is not gain

After my symptoms had worsened significantly, my moderate ME became co-morbid with Fibromyalgia for which Rheumatology can ask for a referral to Pain Management. I attended Pain Management in good faith. The medication they tried made my symptoms worse. Cognitive Behavioural Therapy (CBT) wasn’t considered to be helpful as I already had healthy coping mechanisms in place. My pain was said to be too widespread to make acupuncture an effective option.

I had been in constant moderate to high pain for about 5 years at this point. I could drive but needed a walking stick. After about 7 months and 7 appointments with the graded exercise therapy physiotherapist, I was unable to attend further appointments as the pain was too much for me to walk the required distance.

I’d gone from struggling with a walking stick to needing a wheelchair for anything over 50 metres.

I reluctantly had to apply for a Disabled Parking Permit as there was no way I could get to work without one (this meant I could park under the building, directly next to a lift). My desk had to be repositioned so that I had close access to all the necessary facilities. I then had to ask my Doctor for a wheelchair which he prescribed for me. I continued to deteriorate.

Basically, the exercises I was given were more than my body could handle on top of the demands of a reduced hour job, often working from home, and the activities of daily living. If I left the exercises till the evening, I had no energy to do them and so I did them in a morning before work.
The physio repeatedly had to reduce the exercises she’d asked me to do, I have kept diaries of my treatments, what I was doing, how I felt and how much pain I was in. I have discussed these with other ME sufferers since and it’s quite clear that the exercises were completely unsuitable given my circumstances and worsening of symptoms.

I continued to try to do the exercises daily, under the false belief that deconditioning was a cause of CFS, until I collapsed with severe ME about 6 months later. I’ve been severely affected ever since. I’m housebound, having to stay horizontal for 22.5-23.6 hours per day. I need assistance with activities of daily living.

I must be pushed in a wheelchair outside my home and sometimes need the wheelchair inside my home, when my legs just won’t support me to enable me to, say, use the bathroom.

I’m fortunate to have a house where most of what I need is within a 3 metre radius, I have a good supportive husband and parents who take care of washing, ironing, errands and taking me to appointments when my husband can’t. I frequently crawl or have to lie down, even when navigating those 3 metres.

I’ve been robbed of my life through following bad medical advice and their complete lack of understanding and knowledge about ME.

They should have known that over exertion causes Post Exertional Malaise (PEM) and PENE symptoms. They should NOT have been contributing​ to PEM and PENE.

I want everyone who gets ME to read my story and be warned – Chronic pain is NOT okay – it should NOT be masked by pain killers (for more than a few days).

– Chronic pain should be investigated properly, with an open mind and not under the assumption it is all in your head.

– “Pushing through” is NOT a solution – you should be easing back instead.

– There can be NO gain where there is pain in ME.

– Nausea when trying to eat is NOT okay. This is another sign of overexertion.

– Don’t be pushed into exercise if you feel worse during or afterwards.

– Be aware that a higher or lower pulse than usual can indicate a worsening of symptoms. Rest up!

What I’m able to do now, using heart rate monitoring

I’ve been heart rate monitoring casually for a year, more seriously for about 6 weeks. By keeping my heart rate as much below 60% of age-adjusted maximum heart rate as possible and pacing within a smaller envelope, I’ve been able to stabilise, reduce my symptoms and have more consistent days.

Using the Hummingbird Foundation scoring system, I used to have frequent days at 1%, now I can usually average out at 3%, with very occasional days at 5%, as long as they’re followed by “aggressive” rest. My new physio (who I have to speak with using headphones on a phone whilst lying down) has been amazing, taking a completely different approach, supporting my heart rate monitoring efforts and she only recommends one toe stretch, laid down, arms at my sides, 2-3 times a day – this being something I could achieve on my worst day to help reduce chance of deep vein thrombosis. She allows me long periods of time (8 weeks or longer) to adjust to the movement.

After several months (5-6), she then added in lying on my stomach to help build up my thigh strength. I’m fortunate to have found someone this amazing but remember it’s come at the cost of many others having first provided absolutely appalling advice. I wouldn’t be in this position now, if it weren’t for being repeatedly told that exercise is a “cure” for ME. Instead, if they’d given me the tools of gentle stretches with many rest breaks and the heart rate monitoring guidelines (per Workwell Foundation) that would have addressed my fatigue, chest pains, muscle pain, PEM and PENE, I swear I’d be in a better place right now.

If you found this post interesting, read our series of posts about Missing More After Graded Exercise Therapy.

Please help us amplify patient voice on this issue. Share on social media using hashtags such as #MillionsMissing #MissingMoreGET #MEAwareness #NICEguidelines #PatientVoice #PatientEngagement #PatientExperience #chronicillness

Don’t forget to email your story to GETpetition@gmail.com!


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