Living With Rheumatoid Arthritis and Hypermobility: Making Sense of Management

2 days ago

6 min read

In our first article on rheumatoid arthritis and hypermobility, we looked at why rheumatoid arthritis (RA) can be harder to recognise when joint pain and instability are already part of life with hypermobility.

Once RA has been diagnosed, the question changes:

How do you manage it when RA is only one part of what your body is dealing with?

RA treatment itself is well established, with guidelines for controlling inflammation, monitoring disease activity and adjusting medication. The less developed part is how that treatment fits into the wider health picture when the same person is also managing hypermobility, autonomic symptoms, mast cell activation syndrome (MCAS), gastrointestinal problems, neurodivergence or other conditions.

Current EULAR recommendations for RA management emphasise that treatment decisions should take disease activity, safety and comorbidities into account.

For someone living with several conditions, the practical challenge is not to tackle everything at once. It is to understand what each part of treatment is trying to achieve, what is currently getting in the way, and what needs attention next.

Start with controlling rheumatoid arthritis

RA treatment has a clear purpose: to control inflammatory disease and protect the joints from ongoing damage.

Disease-modifying antirheumatic drugs, or DMARDs, are used for this reason. Treatment generally works towards a target of remission or low disease activity, with medication reviewed and adjusted when that target is not being reached, as described in the EULAR RA management recommendations.

You do not need to understand every RA medication. You do need to understand the one you are taking.

Methotrexate is a useful example. For RA, it is usually taken once weekly and requires regular blood monitoring, including blood-cell counts and liver and kidney function. Folic acid is commonly prescribed as part of methotrexate treatment to reduce some adverse effects, with the dose and timing determined by the prescribing team. The NHS methotrexate guidance explains its dosing and monitoring, while the NHS Specialist Pharmacy Service provides further information about folic acid with methotrexate.

For your own treatment, a few pieces of information matter much more than knowing the entire RA drug list:

Why am I taking this medication, and what should it be doing?
What monitoring goes with it?
What changes or side effects need reporting?
Could my other medications, supplements or health conditions affect how it is used?

This becomes particularly important when several clinicians are involved in your care.

The same RA can exist in two very different bodies

Imagine two people whose rheumatoid arthritis is similarly controlled.

One can tolerate upright activity, eats reasonably well, sleeps adequately and is gradually rebuilding strength.

The other experiences significant orthostatic symptoms, poor sleep, gastrointestinal problems and difficulty recovering after physical activity.

The RA diagnosis might be the same. Their capacity is not.

A rehabilitation programme can make sense from an RA perspective while being difficult to tolerate because standing triggers autonomic symptoms. A medication can be appropriate for controlling inflammation while gastrointestinal problems make taking or tolerating it more difficult. A plan can be medically sound but hard to sustain when its sensory, executive-function or energy demands exceed what the person can realistically manage.

Other parts of someone's health become relevant to RA management when they affect treatment, movement, recovery or everyday function.

This is where looking at the person rather than the diagnosis begins to change what management actually looks like.

A symptom can have more than one contributor

Fatigue is a good example.

Active rheumatoid arthritis can cause substantial fatigue. But fatigue can also be influenced by pain, disrupted sleep, medication effects, anaemia or nutritional deficiency, reduced physical capacity, autonomic symptoms and other health problems.

When fatigue remains significant, especially when inflammatory disease appears better controlled, it can be more useful to ask what is contributing to it than to decide which diagnosis it belongs to.

For one person, disease activity or medication may be important. For another, investigating anaemia or a suspected nutritional deficiency may be appropriate. Sleep, autonomic symptoms, food intake or loss of physical capacity may be contributing elsewhere.

The distinction matters because what helps depends on what is contributing.

This way of thinking is useful beyond fatigue. When several conditions coexist, a symptom does not always arrive with a label telling you where it came from.

Movement with RA and hypermobility is also about dose

Movement is beneficial in RA, and building strength and control is important in hypermobility. But putting those two statements together does not automatically tell us what someone should do on Tuesday morning.

The more useful question is:

What kind and amount of movement can this body tolerate, recover from and gradually build upon?

Inflammatory activity matters. Joint stability matters. Orthostatic tolerance matters. Fatigue and recovery matter. Pain, proprioception and the demands of everyday life matter too.

This means that an appropriate programme is not defined only by which exercises someone performs. The dose matters.

How much load is used? How many repetitions? How long does the session last? How often is it repeated? What position is the person exercising in? What happens later that day or the following day?

Someone whose body is struggling with a particular load may need a different starting point rather than no movement at all. At the same time, remaining indefinitely at a very low level can make it difficult to build the strength and capacity that may eventually make movement easier.

Movement therapy therefore becomes a process of finding an appropriate starting dose, observing how the body responds and gradually building strength, stability, muscle activation, coordination, proprioception and overall capacity.

The programme develops with the person rather than asking the person to adapt to a standard plan.

Find the current limiting factor

When several health problems coexist, it is easy for everything to feel equally urgent.

Usually, it is not.

You can have five diagnoses without needing to work on all five equally today.

A more useful question is:

What is currently stopping the next part of my management from progressing?

If RA inflammation remains active, controlling the inflammatory disease needs attention.

If the RA is controlled but instability and loss of strength are limiting everyday movement, rehabilitation may become more important.

If orthostatic symptoms prevent you from tolerating the movement needed to rebuild capacity, they now affect how rehabilitation needs to be approached.

If gastrointestinal or mast-cell symptoms are interfering with medication tolerance, nutrition or recovery, they become relevant because they are preventing progress elsewhere.

This is not a fixed hierarchy. As one problem becomes better managed, another may become the main thing holding progress back.

The priority can change as your body changes.

What is useful to tell your healthcare team?

When several conditions are involved, trying to explain your entire medical history during every appointment can quickly become exhausting.

You also do not need to arrive knowing exactly which condition is responsible for what.

What can be much more useful is communicating the problem that is currently affecting treatment or function and what consequence it is having.

For example:

“My joint inflammation has improved, but dizziness when I am upright is stopping me from progressing with rehabilitation.”

Or:

“Since changing this medication, my gastrointestinal symptoms have become much worse and I am struggling to eat normally.”

Those statements give the clinician something concrete to work with. They describe what has changed, what it is affecting and why it matters to the wider plan.

You do not need to arrive with the explanation already worked out.

You need to make the problem and its effect on the rest of your management visible.

Managing the person, not just the diagnosis

This same principle shapes how we approach movement at ParaMotion.

Rather than starting with what someone should be able to do because of a diagnosis, we look at what is currently affecting their movement, capacity and ability to progress. From there, movement can be adapted and gradually built around the person rather than around a diagnostic label.

Complex health will often involve different clinicians looking after different parts of care. Those parts still need to make sense together.

Because however many diagnoses appear in the medical record, the person living with them is still one body.

At ParaMotion, we believe that rehabilitation begins with understanding. The body functions as an interconnected system, not a collection of separate parts. By recognising these connections, we can make informed decisions, move with greater confidence, and build treatment plans that support long-term health rather than simply managing symptoms.

👉 [Book your Free 15 mn call here!!] we’ll talk about what’s possible for your body, at your pace.