Living Well: Hypermobility, joint pain and leg cramps

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Hypermobility is something that I’ve been plagued with all my life but I didn’t learn about the disease until a few years ago when I suffered from severe muscle cramps that kept me up all night long.

For four months, I went through every medical test imaginable. I had brain scans (ECG), bone scans (arthritis), saw a Reumatologist, a hematologist and even attended a sleep clinic for insomnia which had spiraled out of control. More about that later.

It was my hematologist who finally at the four month mark, ordered another round of labwork – FOURTEEN viles of blood. And it was the one and only time that I ever passed out from getting blood work done.

Dr. Ritchie decided that I was anemic. Not severely anemic, but enough to require FIVE weeks of iron infusions. By the third week of my infusion therapy, and I’ll get more into this later on – I was feeling better and with pain medication, was finally sleeping and feeling back to my normal self.

First of all, before I go any further – let’s discuss what hypermobility actually is.


What is hypermobility?

If your joints are more mobile than the average person, for example, if you can bend your thumb backwards, or you have “double jointed” fingers – you might have hypermobility.

It is the tissues and muscles around the joints that weaken over time and with age causing the joints to become hypermobile. Joints most commonly affected are: knees, shoulders, elbows, wrists and fingers.

Ehlers-Danlos Syndrome and Sacroiliac Joint Dysfunction

Common Causes of Hypermobility

The root cause of hypermobile joints is difficult to pinpoint. Some known causes are bone shape, joint socket depth, muscle strength, or most commonly – a family history.

Bones and joints can become stiff and sore as we age or as our weight changes. The heavier a person is, the harder the weight is on knee and leg joints. I speak from experience on this – my left knee still pops out of joint to this day.


Symptoms to look out for:

  • Loose joints
  • Pain or stiffening of joints
  • Joints locking – my fingers will actually lock up
  • Cracking or snapping of joints (like when you stand up)
  • Joints that pop out of place (knee, spine, shoulder, fingers)
  • Recurrent injuries including sprains in the ankles or knees popping out (torn ligaments)
  • Chronic fatigue
  • Digestive problems – similar to IBS includes constipation
  • Dizziness (vertigo)
  • Thin or stretchy skin or very dry skin

Photos: EDS | Mast Cells & Collagen Behaving Badly

Treatment for Hypermobility:

Unfortunately, there is no cure when it comes to hypermobile joints. That said, there are things that can be done at home to help improve your bone and joint health. These are some things that I have learned over time and do for myself.

Physical therapy

If your knee pops out of joint, the best fix is to visit a physical therapist. You may need a referral for this depending on your insurance provider. I went through physio as a kid for my knee and it helped. I also went for my back in 2017 when my spine slightly shifted out of joint – worst pain ever.

Once you’ve attended a few sessions, you can ask for exercises to do from home. I know for me, walking, swimming or aqua size, feels great for my knees. Any exercise I can do lying or sitting down also helps.

Aquatic Physiotherapy

Exercise

Joints will stiffen over time. This is why desk jobs are terrible for people with joint issues. It’s important to keep active and try and lose weight if you are heavy – I’m right there with you on that one.

There are a lot of exercise routines on youtube for bad knees. I have a mini-stationary bike that I use, along with resistance bands, dumbbells and an exercise or stability ball. Going for a walk is free exercise and helps with weight loss too.

Healthy Diet

Eating foods high in complex carbs and refined sugars – processed foods – can contribute to inflammation of joints. Reducing your intake of caffeine (pop, coffee), alcohol, and junk food may help to reduce joint stiffness. Drinking plenty of fluids like water and herbal teas such as Chamomile tea, Green tea, Black tea and Lemon tea can also help to ease pain. Turmeric spice is also said to help reduce inflammation.

Easy Healthy Diet Tips - Chowhound

Hot Water

A hot bath or shower can do wonders for sore joints. If you have access (post-COVID) to steam room or hot tub, I highly recommend soaking in hot water after exercise.

Hot Baths Could Reduce Your Risk Of Heart Disease, But You're ...

Vitamins and Nutrients

Along with eating a healthy diet, it’s important to make sure you are getting enough vitamins and nutrients for bone and joint health. You can speak to your doctor about what would be best for you. Most people can get by with a multi-vitamin.

I take magnesium which helps with migraines, Vitamin D3, and Calcium. I was also taking Vitamin B2 – but found that is made my pain worse.

For pain medication – talk to your doctor. I take Toradol for a myriad of problems. But regular exercise, a good night’s sleep and healthy diet definitely helps.

Sources of Vitamins and Minerals | Dr. Ali Ghahary

Hypermobility and Cramps

One of the worst things for me with hypermobile joints is cramping and locking toes and fingers. I haven’t experienced this too much since being off work. But when I’m wearing shoes all day, my toes will cramp up at the end of the day and I can barely walk. Sometimes I’m in tears from it.

A lot of things can cause muscle and toe cramps – not just hypermobile joints. Some things that you can try to stop the cramps are:

  • Reduce daily sodium intake from your diet
  • Drink more water – cramping can be a sign of dehydratio
  • Wear flat shoes – if you have a high arch like me, wearing heels is a big no. I wear runners during the day for work and walking in general.

If you have tried all these home remedies, and you’re still experiencing cramps, talk to your doctor and ask for some labwork. Key things to look for can be iron, calcum and magnesium.


Support for Hypermobility

If you’d like to learn more about joint pain and stiffness there are lots of groups out there that can help you. Or you can follow this blog – as I write weekly articles on various health issues including – Polycystic Ovary Syndrome (women’s health), arthritis, chronic fatigue, anxiety, depression, and migraines – all things that I’ve dealt with in my lifetime.

There is a Hypermobility Syndrome Association website – I think from the US. There are also plenty of support groups online. I may even start a support sub on reddit if I don’t find one.

If you have any questions please feel free to leave it in the comments. I am speaking from personal experience and advice received from my medical team.

If you are suffering with Hypermobility and joint pain, you are not alone. Know that there are people out there who can help and listen should you need it.

I care for you…. | asmythoughtschange

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