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Fibromyalgia sufferer takes on her chronic pain by training to swim the English Channel

When the drugs and the doctors and the physical therapists failed her, Katie Pumphrey had one choice left: She could run from pain or confront it, curtail her lifestyle or push it as far as pain would allow.

Pumphrey, a 26-year-old swim coach and painter who has been in chronic pain for nearly two decades, had discovered along the way that intense, exhausting exercise brought some relief from the strange symptoms of her fibromyalgia, a controversial neuromuscular disease with no known cure. And so she decided to go for broke.

The Baltimore woman is now preparing to swim the English Channel, a physical and logistical undertaking so enormous that pain will just have to get in line with the other challenges she has decided to take on: hypothermia, tides, oil tankers, wind, waves, saltwater, jellyfish, injuries, the financial cost and many more.

“Controlling [pain] is such a strange power trip,” Pumphrey said. “It’s also being proud of yourself. In the past year, I’ve just surprised myself.”

Fewer people (1,429) have crossed the channel solo than have climbed Mount Everest (more than 4,000), and only 446 of the swimmers have been women. Eight people have died trying since Matthew Webb first accomplished the feat, in 1875 — though the success rate, which was tiny in the early 1900s, has risen sharply in recent years.

If all goes well, Pumphrey will enter the water in Dover, England, on Aug. 8 or 9, 2015, and emerge in Cap Gris Nez, France. The distance is 21 miles, but the shifting tides guarantee that few swim directly across. In July 2010, 56-year-old Jackie Cobell reached Calais, France, after swimming 64 miles in nearly 29 hours.

The rules set by the two groups that govern channel crossing attempts require that Pumphrey wear only a swim cap, goggles and a bathing suit, one that offers no extra buoyancy or warmth, despite water temperatures that will hover around 60 degrees. She will be immediately disqualified if she touches the 33-foot vessel that will accompany her or the hand of any member of the crew of volunteers she is assembling to aid her. Food and drink will be lowered to her in the water. An observer from the Channel Swimming Association, one of the governing groups, will be on the boat to ensure she follows the rules.

Pumphrey hopes to make it in 12 to 14 hours.

“I do think I can do it,” she said. “I like the reality [that] there’s still a chance that I can’t. That’s the monster of the channel.” But she added: “I feel very confident about my plan. And as I develop more of my plan, I feel more confident.”

She has raised and spent about $2,000 to reserve the services of skipper Fred Mardle and his boat, the Masterpiece, for her neap-tide swim 17 months from now and believes she will need $15,000 more to see the swim through. She is soliciting money online and seeking sponsors.

But some in her family are still not enamored of the idea.

“Ugh. I’m not happy about it. I’ll be honest,” said her sister, Laura Madoo, a 31-year-old medical resident in Fairfax. “I feel it’s my life’s mission to talk her out of it.”

Her father, Jack Pumphrey, said he is “absolutely, positively confident that she will swim that channel. There’s worry, but there’s not a doubt in my mind. Worry and doubt are two different things.”

I don't know much about FMS, but have read that some people report responding to pain in unusual ways which prevents it being disabling. Some female kickboxer was talking about this in an interview I read... can't say I have that particular talent!

There was a study published recently on Medline that suggested intense exercise as being good for FM pain.
I didn't bookmark or report it, I'm afraid I just assumed it was "more of the same" from the CBT/GET crowd.

I don't know at all if this is going to be a safe thing for this girl to be doing or not. I'm interested and a bit concerned.

I can't find the other thread Kina started. I have looked and looked, (but probably not the right sort of way). I have just realised I could click on Kina's profile and find out.
No. Is this thread it?

There was a study published recently on Medline that suggested intense exercise as being good for FM pain.
I didn't bookmark or report it, I'm afraid I just assumed it was "more of the same" from the CBT/GET crowd.

I don't know at all if this is going to be a safe thing for this girl to be doing or not. I'm interested and a bit concerned.

I can't find the other thread Kina started. I have looked and looked, (but probably not the right sort of way). I have just realised I could click on Kina's profile and find out.
No. Is this thread it?

Click to expand...

Yes, this is the new thread -- the FM article was on another thread that was about something else.

AbstractObjective
Autonomic dysfunction is an important mechanism that could explain many symptoms observed in fibromyalgia (FM). Exercise is an effective treatment, with benefits potentially mediated through changes in autonomic modulation. Strengthening is one of the less studied exercises in FM, and the acute and chronic effects of strengthening on the autonomic system remain unknown. The objective of this study was to assess the chronic effects of strengthening exercises (STRE) on autonomic modulation, pain perception and the quality of life (QOL) of FM patients.

Methods
Eighty sedentary women with FM (ACR 1990) were randomly selected to participate in STRE or flexibility (FLEX) exercises in a blinded controlled trial. The intensity of STRE was set at 45% of the estimated load of 1 Repetition Maximum (RM) in 12 different exercises. Outcomes were Visual Analog Scale (VAS) for pain, Heart Rate Variability (HRV) analysis, treadmill test, the sit and reach test (Wells and Dillon’s Bench), maximal repetitions test and handgrip dynamometry; and quality of life by the Fibromyalgia Impact Questionnaire (FIQ), the Beck and Idate Trait-State Inventory (IDATE), a short-form health survey (SF-36).

Results
The STRE group was more effective to strength gain for all muscles and pain control after 4 and 16 weeks (p<0.05). The FLEX group showed higher improvements in anxiety (p<0.05). Both groups showed improvements in the QOL, and there was no significant difference observed between the groups. There was no change in the HRV of the STRE and FLEX groups.

Conclusions
Strengthening exercises show greater and more rapid improvements in pain and strength than flexibility exercises. Despite the benefits in fitness, pain, depression, anxiety and quality of life, no effect was observed on the autonomic modulation in both groups. This observation suggests that changes in autonomic modulation are not a target tobe clinically achieved in fibromyalgia.

No difference in QoL questionnaire scores over control (despite their title they said "A significant improvement of the function, depression and QOL was observed in both groups. However, there was no difference between the groups, except for anxiety, in which the FLEX group showed better control (Table 3)." - I couldn't actually see QoL data in table 3 - am I being dim?), exercise led to people being fitter and some improvement in their pain measure, but not improvement in the Heart Rate Variability that was the proposed mechanism for improvement... not much of a reason to recommend that FMS patients do strength training imo (not that I'm saying that they should not, just that I am wary of singling out particular groups for medicalising their behaviour when the evidence of particular benefit for them is weak). Maybe some patients want to spend time improving fitness, but there's not much here to indicate that this is a worthwhile medical intervention imo.

My guess would be that there's an error in the first table (and after I'd defended plos).

The study was titled as 'Heart Rate Variability in Fibromyalgia - Effects of Strengthening Exercises', and it found: "Although improvements in the symptoms were observed, no change in the autonomic modulation was detected after 16 weeks in both groups, as shown in table 4."

The improvement in reported pain was through a blinded assessor (good that they tried to reduce bias here) - I don't know how effectively this can remove/reduce potential bias with a symptom like pain. A lot would depend upon how the control worked imo. It's so hard to account for various sources of bias in studies like this that I think I'd only taken an interest if there was a really strong positive result, or they had used good, reliable and objective measures of disability.

Has anyone seen this study being hyped in the media?

(Some of this was written before I'd realised - when I was just about to post - there was probably an error in the first table I linked to. The 'flexibility' control got better results than strength training for their anxiety questionnaire, but if it also got those better results for SF36 too, that would make it very hard to claim that these results mean strengthening exercises should be promoted as a treatment for FMS imo).

I just assumed that if you had fibromyalgia you're muscles would go into spasm for days after pushing them too far. Mine always did. Even cooking a meal would cause my shoulders to tighten up for days.

Only avoiding using them again helped relax my muscles.

My docs knew this was happening but still referred to it as fibromyalgia. I always had bookoo trigger points too.

How common are muscle spasms with fibromyalgia? If that's not fibro, what is it?

So it's just a "pay to publish" sort of paper. The online Plosone thingy.

Click to expand...

No, PLOS One actually has some of the highest quality peer-review policies out there.
Paying to publish is typical of open access journals, though they waive the fee for those from developing countries and others with financial need.

I just assumed that if you had fibromyalgia you're muscles would go into spasm for days after pushing them too far. Mine always did. Even cooking a meal would cause my shoulders to tighten up for days.

This seems like an important difference in symptoms. I don't know if this has been addressed. It's bizarre how some people can push their muscles and feel better and some can't even use theirs without them locking up.

Trigger points are somewhat different than tender points. Trigger points are classifued as myofascial pain syndrome where the pain is localized in the form of a hard muscle knot with whereas tender points are under fibromyalgia and cause an aching pain in the entire body. They are often seen together and MPS can cause FM.

That's the short version and the following article explains the difference in more detail. There is a nice chart in the article but I can't reproduce it on my tablet.

The woman who is swimmimg the English Channel's condition is certainly atypical of what you would expect with FM, as exhaustion is usually as problematic as the pain in FM. But then each case can be different.