Invisible Illness – Sam Kelly Fitness

November 3, 2025November 3, 2025

One disorder many issues

I have a connective tissue disorder, my diagnosis was that of hypermobility spectrum disorder although with my dental overcrowding as a child, hip dysplasia, high palate and atrophic scaring I am certain it is hypermobile ehlers danlos.

The stress of chasing an amendment to the diagnosis is not something I have the capacity for currently. In truth there is so much overlap in symptoms it may be a moot point. I also have postural orthostatic syndrome and femoral anteversion and ADHD thrown in for funsies.
Here I want to talk about the connective tissue disorder. Even within the medical profession it can be assumed that it simply means being “double – jointed” when in actual fact it is far more system wide than that.

Symptoms vary from person to person but can include joint pain and instability, muscular weakness, fatigue, digestive issues, recurrent injuries, bladder issues, trouble sleeping and now research is gradually showing that in many cases individuals with hypermobile connective tissue disorder also have immune dysfunction.

As with any disorder not every aspect will be the same in any one person. There are many people with hEDS and HSD who have normal immune function. Then there are those like myself and my daughter where it is the most difficult aspect of the issue to deal with.

The joint laxity and sublaxions with the pain that accompanies are definitely annoying but I spent years and years studying how to stabilise the joints to the point where not only can I largely control that aspect but I help others to for a living.

The crushing chronic fatigue I had for decades largely went once I gained a base level of muscle tissue, Simply put it gave my body enough structure that simply existing was not utterly exhausting.

Even my POTS is mostly under control thanks to strength and cardio training.
However the immune system issue is a pervasive one that I cannot control, every year I catch more viruses than is even close to normal. Certainly not normal for someone who exercises, eats well, does not smoke or drink. On average I catch 6 to 8 viruses a year, often followed by secondary infections in ears or sinuses.

That is literally months a year lost due to illness, I can’t always take time off work to rest not when it is that frequent. As a self employed person not working means not being paid which means dragging myself through work and resting when I can inbetween.

I feel at times embarrassed by frequent sickness, especially as I am in the fitness industry. Though of course I came to the industry as part of working with my disabilities.
I certainly have a degree of internalised ablesism in that I feel embarrassed by something I have no control over, but I do.

I also feel powerless as there is nothing I can do to make the situation any better, of course over the years I have tried ever supplement under the sun from high dose vitamin C, colostrum, echinacea, thymus extract, juices, green sludge, vitamin d NAC and a 100 others I can’t remember. I must have spent 1000s to no avail. The reality is that people with a functioning immune system didn’t get there through a tablet from Boots. Their immune system works because it does. The other fact is if there was a single supplement that actually helped with low immunoglobulins the NHS would be over the moon as those who are worse than my daughter and I and therefore qualify for infusions cost the NHS 1000s each per month.

Perhaps at some point a therapy will prove effective, I am currently trying low dose naltrexone which has good reports but we will see!! Until then I have to admit it is at times soul destroying to go from infection to infection and have to drag myself through the day more times than I would like to admit. It is devastating to never be able to plan a concert or night out because virtually every time recently come the day either my daughter or I have picked something up and going would be more draining than is worth it. That happened so many times last year we have given up. Which means there is rarely anything to look forward to. It is genuinely depressing to do everything possible to optimise my health and still have no control over when I am well.

It is infuriating to have the constant recommendations of this vitamin or that vitamin because of course a supplement is going to fix an immune system that doesn’t work.

Then pity on top of that is utterly maddening. As is the fact that if my daughter and I had just one point lower igG wise we would qualify for treatment that would immediately give us a normal immune function and quality of life. Just 1 point.

Research in the past decade has found that

1. Immune abnormalities are common in hEDS/HSD clinic cohorts, including antibody (Ig) deficiencies.

A 2015–2019 community Allergy/Immunology cohort (n=974) found high co-occurrence of hEDS/HSD with mast-cell disorders and immunoglobulin deficiencies; 45% of all Ig-deficiency cases also had hEDS/HSD. Authors highlight “recurrent/chronic inflammation” and suggest screening for Ig deficiency in hEDS/HSD patients who have frequent infections. That is nearly half of the patients examined with low igG who were found to also have a connective tissue disorder. Both my daughter and I have low immunoglobulin G.
https://pubmed.ncbi.nlm.nih.gov/34747107/

2. ENT infections appear elevated in EDS (pediatrics).

A 2024 otolaryngology study reported higher risk of acute sinusitis (along with allergic rhinitis, OSA, and hearing loss) in children with EDS vs controls, hypothesising immune dysfunction as a contributor. Anecdotal evidence in forums and my own experience would indicate that this prevalence does not necessarily end with childhood. I suffer from regular sinus infections and have rhinitis that is year long to a degree that baffled even an ENT as allergy tests were inconclusive for how inflamed my nasal passages are.
https://pubmed.ncbi.nlm.nih.gov/38657428/

3. Potentially there is systemic immune dysregulation in hEDS.

Research released in October this year studying proteins within the body found complement and cytokine pathway differences in hEDS vs controls consistent with immune dysregulation that could plausibly alter infection susceptibility.
https://academic.oup.com/immunohorizons/article/9/10/vlaf044/8256436

4. Genetic hypotheses linking hEDS, mast-cell hyperreactivity, and infection susceptibility.
A 2024 molecular review/analysis proposed genetic variants that may underlie mast-cell hypersensitivity and increased infection risk in hEDS.
https://www.mdpi.com/1467-3045/46/10/689

5. Post-infectious vulnerability (Long COVID) looks higher with hypermobility.
Multiple human studies suggest people with joint hypermobility are ~30% more likely to report prolonged symptoms after COVID-19, and extreme hypermobility may raise risk of Long COVID partly via autonomic/vascular mechanisms.
https://www.ehlers-danlos.com/study-finds-people-with-joint-hypermobility-may-be-more-prone-to-long-covid

October 5, 2024June 8, 2025

Have we been dangerously wrong about the sun?

I have as a pale person been a life long sun avoider. I thought that doing so was the right thing. That it was the best path for health. I may well have been wrong!

Most people are aware that during COVID those who in the early days prior to vaccines had a higher level of vitamin d had a higher chance of surviving. This was regardless of age. So much so that vitamin d pills were recommended wide scale. Except pills turned out to do next to nothing. It seems more likely that the higher vitamin d levels were a proxy for sun exposure.

Maybe we are wrong about being able to get vitamin d (which is actually a hormone) of a type that is bioavailable enough to prevent anything other than severe deficiency from supplements or food. Oral vitamin d certainly doesn’t seem to work to modulate the immune system the way our own vitamin d made from sun exposure does.

What else are we wrong about when it comes to sun exposure.

According to two studies one which originally set out to prove sun exposure in Swedish women increased their risk of death due melanoma and did pretty much the opposite and the other the UK biobank study.

Both show strong and it really seems to be very strong evidence that sun avoidance is linked to a higher risk of all cause mortality. In other words sun avoiders were just more likely to die.

I’m going to add a few excerpts from journal pieces and articles along with the relevant links and then discuss.

“UVR is a skin carcinogen, yet no studies link sun exposure to increased all-cause mortality. Epidemiological studies from the United Kingdom and Sweden link sun exposure with reduced all-cause, cardiovascular, and cancer mortality. Vitamin D synthesis is dependent on UVB exposure. Individuals with higher serum levels of vitamin D are healthier in many ways, yet multiple trials of oral vitamin D supplementation show little benefit. Growing evidence shows that sunlight has health benefits through vitamin D–independent pathways, such as photomobilization of nitric oxide from cutaneous stores with reduction in cardiovascular morbidity. Sunlight has important systemic health benefit as well as risks.”

https://www.sciencedirect.com/science/article/pii/S0022202X2400280X

“Living in locations with higher UV levels, for example Cornwall, was associated with a lower risk of death from cardiovascular disease and cancer – 19 per cent and 12 per cent, respectively – than living in areas with lower UV levels, such as Edinburgh or Glasgow.

Sunbed use was linked to a 23 per cent lower risk of death from cardiovascular disease and a 14 per cent lower risk of death from cancer, compared to non-users. It is possible that people who use sunbeds may also seek out greater sun exposure and so this result may reflect broader sun seeking behaviour, the team says.

Those with a higher estimated UV exposure had a slightly increased risk of being diagnosed with melanoma – a type of skin cancer – but their risk of dying from the condition was not raised.”

https://www.ed.ac.uk/news/2024/uv-rays-may-boost-health-in-low-sunlight-countries

“Abstract
Background
Sunlight exposure and fair skin are major determinants of human vitamin D production, but they are also risk factors for cutaneous malignant melanoma (MM). There is epidemiological evidence that all-cause mortality is related to low vitamin D levels.

Methods
We assessed the avoidance of sun exposure as a risk factor for all-cause mortality for 29 518 Swedish women in a prospective 20-year follow-up of the Melanoma in Southern Sweden (MISS) cohort. Women were recruited from 1990 to 1992 and were aged 25 to 64 years at the start of the study. We obtained detailed information at baseline on their sun exposure habits and potential confounders. Multivariable flexible parametric survival analysis was applied to the data.

Results
There were 2545 deaths amongst the 29 518 women who responded to the initial questionnaire. We found that all-cause mortality was inversely related to sun exposure habits. The mortality rate amongst avoiders of sun exposure was approximately twofold higher compared with the highest sun exposure group, resulting in excess mortality with a population attributable risk of 3%.

Conclusion
The results of this study provide observational evidence that avoiding sun exposure is a risk factor for all-cause mortality. Following sun exposure advice that is very restrictive in countries with low solar intensity might in fact be harmful to women’s health.”

https://onlinelibrary.wiley.com/doi/10.1111/joim.12251

In other words those of us living in north of the equator climates where the UV index drops below the point where vitamin d synthesis is possible for months at a time may be harming our health by avoiding summer sun.

Advice that is sensible in higher UV index climates could actually be dangerous in darker climes. Could the health advice we have been given for decades be very, very wrong.

Note I’m not suggesting extreme sun exposure and certainly baking to the point of burning. But as with everything there is a middle ground and maybe the sun advice in the UK needs to find it

If you would like a female personal trainer, yoga teacher or Pilates instructor in Alnwick Northumberland who is well versed in different types of training including working with health issues please get in touch.

October 4, 2024January 6, 2025

When the magic fix no longer feels magic

When someone is feeling less than wonderful it’s common to try something and after a while it’s amazing. They start to feel better. Feel better to the point where yoga, Pilates, weight training whatever it happens to be becomes a passion. They want to tell everyone how fricking amazing Pilates is, how they felt awful beforehand, but now they feel pretty good.

But then it stops working, but that’s ok they try something new. Maybe going plant based or paleo and that becomes the new magic pathway. Then that stops working and so on.

So what gives? Possibly a few things. Firstly there is a very reductionist and polarising attitude towards life at the moment and it’s prevalent in the health and fitness space particularly. People are in particular camps, they are yogis, or weight lifters or runners. You can see fitness folk arguing in the comment sections of social media about which is better and why. Each of the adherents arguing their case as to why they are right, why weight lifting is better for far loss, or runners have the best VO2 max and that’s more important. How yoga reduces cortisol which does xyz.

Reality is we need a bit of all of them. We need some cardio for heart and lungs, strength training to prevent sarcopenia and frailty in later years and yes mobility too. Because what’s the point of the first two if you can’t get off the floor due to zero mobility?

So that’s a possibility, you had a piece of the movement puzzle but not the whole thing which meant that for example if someone was dealing with POTs they made progress through running but needed strength work also to improve blood flow.

Perhaps someone started a program but haven’t progressed. In other words still doing the same exercises again and again without any progressive overload. Without making them harder. When that happens the body responds to the stimulus but then gets to that stimulus, unless it’s made more challenging in order to again introduce stimulus detraining can even occur.

Or maybe once someone has an exercise routine sorted their body starts to change and needs better nutrition, more sleep. Other pieces of the puzzle.

If this has happened to you think of the following

What is the quality of your sleep like?

How much daylight do you get each day?

How many steps do you take a day?

How much blue light are you exposed to?

Do you have time away from blue light before sleep?

How much of your diet is real food? Doesn’t matter what your preference is but looks at how much is something that would have existed before processed food.

Do you have time to relax? Are you genuinely de-stressing?

Are you too comfortable all the time? Do you ever deliberately get out of breath, too hot, too cold or hungry?

Weirdly the body responds to adversity the rule of hormesis. In other words the biological phenomenon where a low exposure to a potentially harmful agent, like a toxin or stressor, can have beneficial effects on an organism. At a low dose of course.

Obviously I’m not saying try and do all these things at once, a total life overhaul is unsustainable BUT if you found an exercise routine that is working or a dietary pattern that helps you but you feel you are no longer getting results. Don’t stop what was working and do something entirely different, maybe tweak it. Make the exercise tougher or add in cardio/strength and then look at sleep or steps. Then after a few months add something else.

The reality is for optimal health we eventually need to look at all of it. Rather than expecting a magic bullet we need to accept that the human animal needs to eat well, move regularly, get daylight and sleep effectively. Any single piece of the puzzle missing can leave you feeling less than awesome.

If you would like to have a personal trainer with a holistic approach working out of a private home gym in Alnwick Northumberland get in touch!

June 12, 2024October 5, 2024

Exercise and increasing your daily capacity/energy

This is particularly for those of you who are struggling with energy limiting disorders that generally are helped by exercise.

An example would be uncontrolled Postural Orthostatic Tachycardia Syndrome. With POTs the uncontrolled heart rate spikes and dysautonomia means that a person’s body is working twice as hard just to exist.

These are two heart rate graphs of a client with uncontrolled POTs one shows a POTs attack while sleeping, the other a day at university. No exercise was done the heart rate spikes were due to sitting up.

If your body is working as hard just to exist as someone’s body would do when undertaking a busy athletic day add in anything on top and it is simply exhausting.

The good news is a combination of strength training and low heart rate cardio can reduce symptoms to the point where the body works close to a normal person. An increase in muscle strength and efficiency helps blood flow work more effectively particularly when pooling. Cardio conditioning increases the stroke volume of the heart. This in turn reduces attacks helps the heart regulate when tachycardic moments hit.

Overall exercise has been found to expand blood volume and plasma volume and increase cardiac muscle mass and heart size. These in turn have been associated huge with improvement in symptoms.

Above is after 6 months of training, you will notice the heart rate is lower here during exercise than it previously was just during sitting. It is also lower and more uniform across the entire day.

More importantly they now are able to live a life close to the one they want. They make plans without worrying about crashes and spend a day busy yet still have a little energy left over.

Although it’s a different (often related) condition hypermobility spectrum disorders can also have a similar impact of daily energy.

Here the lack of functioning connective tissue leads to a general instability within the body. Connective tissue is not limited to the joints but throughout the entire body. When it doesn’t function joints are loose and the entire body lacks structure.

Again this means simply existing is exhausting. However strength training and muscle development can help counter balance the lack of structure.

In both situations the end result is an increased energy capacity and an ability to undertake a normal day/life without utter exhaustion.

You can’t cure underlying health conditions, but with the right help there is a strong chance that you can control them. A regular routine of movement designed to be suitable for your body might allow you to regain your life.

February 7, 2023January 6, 2025

Last picked for every team

Some people excel at sport and athleticism from an early age, it is woven into their DNA. They take to any physical activity they try with ease and grace. The kind of people who won every race at sports day and captained every team. Then there’s those like me who were quite literally picked last for every team in PE, I swear to god if my classmates could have chosen the school bench over me they would. To be fair it would have probably done a better job at the time.

I was skinny, knock kneed, had an undiagnosed hypermobility spectrum disorder and the serious lack of muscle tone that goes with it. As is often the case when we are awful at something I avoided it like the plague, I don’t know if things have changed but in my day PE teachers had no interest in those without natural athleticism never mind the reasons why.

To be entirely honest my experiences at school with regard to fitness were not just negative they were actually traumatic. I was openly bullied for my lack of physicality and knock knees and viciously name called. I’m not sure though out of the laughter or the pity clap I would sometimes get coming in dead last for something…again which one was worse. I still won’t even so much as take part in a 5k race in public as a result, the idea of any type of competition fills me with horror to the point where I actually feel physically sick.

Why am I telling you this? It’s not for pity or sympathy, I am honestly quite fine. The past is the past. I want you to read this if you like me had no natural ability and let you know that it does not and never did exclude you from looking after yourself physically. No matter how rubbish you were at PE you can still benefit from various forms of movement. Heck you might even enjoy it. I certainly do, in fact I can’t imagine a life where I don’t get up and exercise pretty much every day. I am so grateful that I discovered first yoga and Pilates in my 20s which I found I actually quite naturally built for and being the antithesis of competitive sports allowed me to tune in with my body and learn to love moving it. It was this love of movement I took into CrossFit and strength training, the difference being in that situation I was pretty rubbish to begin with. However many years later of keeping at it I am actually

pretty strong and certainly fit.

That for me is the important aspect, being fit and healthy, being strong enough to squat down to the ground with a heavy back pack and stand back up, being able to walk briskly up hills without losing my breath, being limber enough to fold into my legs with no discomfort, being able to lift heavy suitcases over head for other passengers on trains. These are the things that matter to me. That and the sheer love of movement, oh heavens it is simply glorious to just move, there is a delight in using your body that is with language almost inexpressible. As though different movements all have their own flavor and to engage in more than one is like a banquet for the body. Plus as a result I honestly feel better at nearly 50 than I did my entire adult life.

Don’t let a perceived idea of not being athletic dictate to you that exercise isn’t for you, it is for everyone from those like my husband who are naturally talented in a particular field (running) and thrive in competition to those like myself who myself who had to work at it. In fact I think those of us who are not naturals potentially benefit even more as there are often underlying conditions that make us that way which are improved by movement.

Exercise is for all of us and is certainly one of the keys to health and longevity.

If you would like to work with a personal trainer in a quiet setting in Alnwick Northumberland get in touch!