Pain #JHS #EDS #ME #TMD #Diverticulitis #Prolapse #Meditation

How do you feel when you are given a new diagnosis?

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For me I like to know why something isn’t as it should be, yet also saddened that something has been found to be wrong with me. Then, once the diagnosis sinks in, I start to question ~ what does this mean for me? It’s good to know that my mind and body isn’t making it up and that something has been found to be wrong but the instant that’s been acknowledged I then move onto “what can I do to make this better?” Sometimes I am given a considered treatment plan, such as addressing my mental health issues ~ I am more comfortable now in recognising when I need to access support for my depression and how to help myself to get better. Other times I am told “we don’t know” ~ such as with my ME, it would seem that there are many differing views on how to address the symptoms that arise, but no known cure for the illness. So it’s a case of trial and error and keeping an open mind. Then there are solid options available such as; this operation will fix this or that medication will cure this.

A recent diagnosis has helped me understand why I have experienced certain issues in the past ~ like all the blocks falling into place and suddenly everything is making more sense.

I was recently diagnosed as having Joint Hypermobility Syndrome (JHS) by my ME Clinic, using the Beighton Score along with a long and through physical exam and medical history. This means I am hypermobile and in pain, as opposed to a little bit bendy. I score 8/9 on the Beighton Score (0 on the back as only hit my finger tips not palms on the floor due to back injury)

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Joint Hypermobility Syndrome has similar symptoms to ME/CFS, which can be confusing. Sometimes people are misdiagnosed with ME/CFS when they really have Joint Hypermobility Syndrome ~ or vice versa. Then again it is also known for sufferers to have both ME/CFS and JHS together ~ which is my diagnosis ~ which means that one exacerbates the other and causes heightened pain, joint pain and fatigue issues, among other things.

Through my reading to try and understand this new diagnosis I have been confused about the differences between JHS and EDS. Some define them as totally different variations of the syndrome and others say they are one and the same but with differing levels of severity. I have been led to believe through my own therapist that they are the same with the different levels. This is supported by this which I found on the hypermobility.org website…

“Some experts now consider JHS and EDS-HM to be the same condition, albeit derived from different clinical perspectives. Whether JHS or EDS-HM is diagnosed is down to clinical judgement. There is no absolute medical consensus on this matter. A doctor might, for example, use one term rather than the other dependent on the type and severity of issues present. EDS-HM might be the preferred name to give an individuals’ condition if there are findings such as those described above (severe dislocations, more florid skin signs, etc.). However, again only for example, the term JHS might be the preferred term if the principle issue is one of joint pain around hypermobile non-dislocating joints with few other signs.”

As it stands there are no genetic tests to diagnose either JHS or EDS, so no way to define if they are the same or different conditions. My feeling is that they are one and the same condition but sufferers can fall within different severity degrees along the spectrum of mild to severely affected.

This diagnosis, I am told, also explains why I experienced the following.

Temporomandibular Joint Syndrome/Disorder (TMJ/TMD) ~ I have suffered from this since my late teens. It was so severe when my sister was married that I sat at the top table in my bridesmaid regalia eating the same menu as everyone else. Only because my jaw was locked my food was blended which I ate using a small teaspoon to squeeze the food between my teeth. I wear a sleep guard at night to stop me clenching my teeth and it keeps my jaw in the proper position. I need regular rest breaks when at the dentist to prevent my jaw going into spasm and occasionally it will “lock” which means I must eat a soft or liquid diet until it relaxes again. It’s normal for it to make clicking noises as I eat. Plus, you can feel my jaw moving out of its socket if you put your hands to each side of my face as I open and close my mouth. I have found that generalised hypermobility of the joints, as I have, could also be a cause of TMJ/TMD as the temporomandibular joint is classed as one of the hypermobile joints
“Dr. Mitakides has dedicated his career to being an expert in TMJ, hypermobility and EDS and improving the lives of people living with these ailments. With hypermobility, it can often impact the jaw, neck and shoulders, causing severe headaches and TMJ-related pain.”

Double Prolapse Repair ~ In 2006 I had to have both anterior and posterior vaginal repair surgery, which wasn’t pleasant and it took my body just over twice as long as it should have to heal from the surgery, which was a concern for the surgeon. However, now with the diagnosis of JHS I realise why as it is not uncommon for sufferers to experience a prolapse and have slower than normal healing issues.

Bladder and pelvic floor weakness ~ I have had the full range of bladder function tests carried out and it seems my body can’t hold the fluid in my bladder for any length of time, and that it fills up very quickly ~ which means lots of getting up in the night and keeping one eye out for lavatories whenever I travel or go out. Following this diagnosis, I underwent months, just under a year in fact, of weekly electric stimulation therapy treatments at my local hospital outpatients. Some areas provide you with a machine and probe to use at home, but due to a shortage of machines I had my own probe but had to attend the hospital to use it with their machine. I had a regular slot and attended the clinic for weekly visits, starting with ten minutes on the machine, slowly increasing to 30 minutes. The treatment was to try to improve and strengthen my bladder and pelvic floor muscles. Sadly, after almost a year my pelvic floor still wasn’t responding but my bladder had responded a little, giving me some respite from the numerous toilet visits ~ although I still have to go more than most and am still unable to hold a full bladder for very long, when I gotta go I really gotta go! So no trampolining, skipping, or coughing fits without the security of a Tena Lady!

Gut Issues ~ I have issues with my gut and intermittent loose or constipated stools, I take a couple of sachets of medication daily to try and keep my stools consistent to help relieve pain and stress on my haemorrhoids. I also have developed Diverticulitis which is now thought to be due to having JHS and the medication I take is also to try and stop another bout of infected pouches and the revolting medications necessary to treat it.

Pain ~ I have had lower back pain since my nursing days, possibly due to injury due to frequent bending and lifting. I also used to have issues with loose ligaments “knotting” at the back of my knee during my teens through to early thirties, which was excruciatingly painful. Thankfully as I hit my mid~late thirties this decreased, possibly because I began to realise (I’m slow on the uptake at times) that the way I was sitting was causing the ligaments to behave this way and so try not to sit on the floor with my knees bent under me or under and to the side as sitting in these positions tended to bring it on. Also possibly no more attacks as I tend to sit on chairs these days too, instead of on the floor.

Also aside from the above, folks with JHS may also experience any of the following.

“The things individuals might most often present with beyond joint problems include:

• Easy bruising, scarring that is stretched, thin and often wrinkled, and stretch marks that appeared at a young age and in many places across the body. The skin often feels soft and velvety;
• Weakness of the abdominal and pelvic wall muscles that presents as hernias (such as hiatus hernia) or prolapse of the pelvic floor causing problems with bowel and bladder function;
• Unexplained chest pains – perhaps the individual has been told they have a heart murmur and mitral valve prolapse;
• Blackouts or near blackouts that may be associated with low blood pressure or fast heart rate, and often triggered by change in posture from lying/sitting to standing, or after standing in one position for even just a few minutes.
• Symptoms that sound like Irritable Bowel Syndrome with bloating, constipation, and cramp-like abdominal pain.
• Shortness of breath, perhaps diagnosed as asthma because the symptoms seem the same, but not responding to inhalers in the way the doctor might have expected, because it is not true asthma;
• Noticing that local anaesthetics, used for example in dentistry, do not seem to be very effective or require much more than might be expected;
• Severe fatigue.
• Anxiety and phobias.
• These are often found in JHS and the most common form of Ehlers-Danlos Syndrome – EDS-HM. Aside from the joint problems described earlier, a person might have none or may have any combination of these, or indeed may never develop these problems.”

I am trying to find effective ways to relieve and deal with my pain, which unfortunately is continuous at the moment. There are a few tips regarding pain and hypermobility on both hypermobile.org and arthritis research sites. This is really wearing me down and making me tetchy and short tempered with those around me, which is not fair on them. I am using ankle and wrist supports, legwarmers to keep my ankles warm, flat boots, wheat bags, amitriptyline,(for double pronged approach treating depression, calming bladder and easing pain) and doing gentle stretches. Wearing a scarf indoors around my neck and rubbing in copious amounts of pain relief gels. All not particularly successful in relieving my pain at the moment but I am loathe to trial further medications as my body doesn’t really respond well to them and to be honest many I have already tried have made no difference to the pain.

*NOTE* I have just agreed to go to the local Buddhist Centre with my eldest daughter to learn to meditate. I am hoping that this will help me clear my mind and reduce my stress levels and in turn learn to fully accept my illnesses and see if this has a knock on effect in reducing my pain ~ this, I am told, will take an awful lot of practice for someone like me who has a very busy brain. SO, after I have been for a few sessions I will follow up with a blog about what I have learned, how it works and whether or not I feel I am beginning to benefit from it.

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UPDATE:

Since writing this blog I have been given some advice on products to try to ease my pain. Obviously everyone responds differently to treatments and medications, so what works for others may not necessarily work for me BUT I aim to give it a bloody good try. I have ordered myself some CBD Oil, this is administered as drops via pipette under the tongue, held for 90 seconds and then swallowed. To start I am to take one drop before each meal, so three times a day. After that see how I respond and I can slowly increase up to four drops three times a day. However, you have to do this slowly and evaluate your response to the drops before deciding whether or not you need to increase. I am pretty sensitive to medications so may well find I only need to have one or two drops three times a day to keep me comfortable.

Here is some information about the Canabis Oil: ~

MADE FROM CANNABIS SATIVA FLOWERS
Love CBD Oil is created from specific strains of cannabis chosen for their impressive cannabinoid content, especially CBD. We do not use any old industrial hemp, our oils are made from cannabis flowers grown to become Love CBD Oil. Cannabis flowers are where the all-important cannabinoids and terpenes are found. When the flowers are fully grown our cannabis is cultivated and then made into Love CBD Oil.

TERPENES & CANNABINOIDS
The Entourage Oil contains a full array of cannabinoids, including CBD, CBDA, CBG, CBC and CBN. It also contains a large number of terpenes. Terpenes are the compounds in cannabis that cause the famous cannabis aroma: they’re basically cannabis essential oil. Due to ever-more sophisticated extraction techniques, The Entourage Oil now has more terpenes than ever before.

Among the terpenes present are Myrcene, Limonene, Alpha-Pinene and – most importantly – Beta-Caryophyllene (BCP). BCP is by far the most common terpene in The Entourage Oil. It is what causes the subtle pepper taste you might have noticed. It is also a cannabinoid, which is of maximum interest to us. We consider BCP an important layer in the Entourage Oil.

FIVE STRAINS OF HEMP – A CANNABIS COCKTAIL!
We love “The Entourage Effect“, which is the process of combining cannabinoids to increase their effectiveness. In this spirit, The Entourage Oil contains cannabinoids and terpenes from five different strains of cannabis sativa – grown on farms in different parts of Europe for maximum diversity.

This product contains a full profile of cannabinoids, including:

8% CBD/CBDA,   800MG OF CBD/CBDA PER 10ML,   0% THC

Suggested Use: 1-4 Drops Under The Tongue, Taken Before Meals

The Entourage Oil is made from Organic Hemp, and is Vegan and Lactose Friendly.

Ingredients:
Hemp extract, olive oil

Please Note: This oil can not be vaporized. It is intended for oral use only.

Love CBD Oil is a food supplement.

If you are interested in looking at the products for yourself then just click on this link; https://www.lovecbd.org/

I am also going to trial magnesium spray delivered to the soles of my feet for additional pain relief on top of the CBD Oil.

Some information about Magnesium: ~

Magnesium is an essential element for a healthy body and is used in over 300 reactions on a daily basis. A fantastic natural relaxant it helps to rid the body of excess tension. Crucial for bone health magnesium encourages the body to absorb calcium which could otherwise, over time result in a build-up on soft tissue and muscles, causing them to harden. A body with the right amount of magnesium will be more supple, will resist fatigue for longer and will better repair itself.  Containing 100% natural ingredients delivering the most naturally pure source of Zechstein Inside® magnesium chloride.  10 sprays deliver a minimum of 150mg (43% RDA) of optimally absorbable elemental magnesium.

Why MagnesiumOil Original Spray?
Magnesium encourages the body to absorb calcium which could otherwise, over time result in a build-up on soft tissue and muscles, causing them to harden. During Paleolithic times, when our bodies formed into how they are today, the ratio of calcium to magnesium was 1:1. In today’s Western diets it is in excess of 20:1. Our Magnesium Oil Original spray can plug the gaps left by diet.

A clinical trial by Cardiff University showed how well magnesium is absorbed through the skin, feeding every cell. A further study by Watkins & Josling showed that BetterYou Magnesium Oil will elevate cellular magnesium levels up to 5 times faster than traditional tablets or capsules.

The award winning spray contains pharmaceutical grade Zechstein Inside® magnesium chloride. Mined in Northern Holland from a seam one mile below ground, our magnesium chloride has been naturally condensed and purified for over 250 million years. As open water sources contain elevated man-made pollutants and heavy metals, Zechstein Inside® magnesium chloride guarantees the most naturally pure source known.

It is totally ionized for effective absorption and retention by the body. This means this essential mineral is delivered directly into the skin tissue, entering cells immediately, efficiently replacing magnesium lost through sweat and the stresses of modern life.

A universal spray. The unique purity of Magnesium Oil Original spray means that it can be used by everyone. We recommend this spray during pregnancy and nursing, for children and for those following diabetic, coeliac, vegan and vegetarian diets.

Directions
BetterYou Magnesium Oil Original Spray is a very versatile spray and can be used on any area of the body to increase the body’s overall magnesium levels.

Our bodies are designed to absorb this essential mineral via healthy grazing of nuts, wholegrain and dark greens, little but often and daily. Unfortunately, as our diet has changed the representation of magnesium within it has dramatically reduced. This is due to not only our diet but also how we produce the foods we eat. To supplement magnesium, however, the practice of little but often still applies. Oral supplementation has some impact but it provides a very slow process of cellular improvement.

For general health we recommend using up to 20 sprays of Magnesium Oil Original spray daily. The easiest way to do this is to make it part of your morning and night time routine. Spray between five and ten sprays around the body and massage in well. After a shower or bath is a great time to apply as the skin is warm and the pores are open which aids absorption. This spray is suitable at any age. For children we recommend halving the dosage as their additional daily supplementation need is lower than that of an adult.

A tingling sensation is natural upon first application and is a sign of magnesium deficiency; this will decrease as your magnesium levels increase.

Magnesium Oil Original spray can also be taken orally to reduce plaque build-up and promote healthy gums. Simply apply one or two sprays directly into the mouth just before brushing. It is advised not to swallow as it can have a laxative effect when taken orally.

Ingredients
In Magnesium Oil Original spray you will find a concentrated solution of Zechstein Inside® magnesium chloride (31% magnesium chloride). We take great pride in sourcing the most bioavailable and natural active ingredients. 100% naturally sourced with no exposure to man-made pollutants. This has been formulated as an ambient spray and does not require refrigeration. Proudly British made.

FAQ
Why does it tingle when I apply it to my skin?
This can happen if the body’s cellular magnesium levels are low. The skin can tingle as the magnesium is sucked through the skin rapidly and as magnesium is a large molecule it can cause this sensation. It is important to remember though that it isn’t an allergic reaction to the magnesium, as it is found naturally within the body and is vital to good health. Another factor that can influence this reaction is the amount used on one area. We recommend 2-3 sprays in one area and then up to 20 sprays a day. Also if you have dry or broken skin it may heighten the sensation. This reaction will decrease as your body’s cellular magnesium levels increase. Transdermal magnesium helps to increase your body’s magnesium levels up to 5 times faster than oral supplementation. To reduce the reaction we recommend the following techniques:-

  1. Apply only 2-3 sprays onto any individual skin area. Massage in well.
  2. Apply after a shower onto wet skin, while pores are open.
  3. Vary the application areas to increase the bodies overall magnesium level.
  4. Little but often is the key. If you just apply one spray that’s fine. Massage it in and wait for a minute or so then try another.

The key is to apply the Magnesium Oil wherever it feels comfortable. The magnesium, once absorbed into the skin, is circulated around the body so there is no direct need to focus just on a single area. However, once your magnesium levels begin to rise you will find areas that were sensitive before are no longer so.
Can I use transdermal magnesium during pregnancy?
Yes. Magnesium is very important during this time for both mother and baby as babies are born with twice as much magnesium as calcium, this is what makes them so flexible and why their skin is so elastic and soft. However it is important that during pregnancy you avoid essential oils. MagnesiumOil Joint Spray, MagnesiumOil Recovery Spray and MagnesiumOil Goodnight Spray all contain essential oils. Our pure magnesium products are perfectly suited for during pregnancy. MagnesiumOil Original spray, MagnesiumOil Sensitive spray, Magnesium Flakes, Magnesium Soak, Magnesium Body Butter and Lotion all contain only a pure form of magnesium chloride, which is not only pharmaceutical grade, but is currently the subject of clinical trial at St Mark’s hospital, Harrow, on behalf of the NHS. There are no restrictions with dosage level of these products during this time.
I take medication, are there any contraindications?
There are no contraindications with any of our transdermal magnesium products.
Is the magnesium safe to take orally?
Our Magnesium Flakes, Magnesium Oil Original spray and Magnesium Soak are all perfectly safe to ingest. The purity of our source actually makes them all pharmaceutical grade products. They are safe for human consumption and are actually used in organic baby food as an alternative to sodium chloride. However, as magnesium is a natural relaxant if you take a large dose orally it can have a laxative effect. Using it as a transdermal product means that it avoids processing by the digestive system and so too avoids the laxative effect; therefore you can take larger doses through the skin. We have also found in our trials that transdermal magnesium can increase the body’s magnesium levels up to 5 times faster than oral supplements.
What is the source of the magnesium chloride hexahydrate?
The magnesium chloride is a solution mined in Veendam in the Netherlands. The magnesium chloride is mined from an ancient seabed that has been condensed and purified for over 250 million years. To mine the magnesium chloride spring water is carefully pumped down to dissolve the seam and the solution is simultaneously brought up to the surface. The magnesium chloride concentration is 31%, perfectly stable to avoid recrystalising. The brine solution that is brought to the surface is what is bottled for MagnesiumOil Original spray and Magnesium Soak, nothing is added to it to keep the spray as pure and as universally acceptable as possible.
Can I overdose on magnesium?
You do not need to worry about overdosing when using transdermal magnesium. Upper limits are set when using the product orally as it can have a laxative effect as it is a natural relaxant. Magnesium needs to be in balance with the calcium in your body, ideally in the range of 1:1 or 2:1. A modern Western diet unfortunately favours calcium in the ratio of more than 20 times to one on average, so magnesium supplementation is crucial. Looking at this from a cellular level, cells are surrounded by calcium, for the cell to fire it is flooded with calcium. To return to its relaxed state there must be sufficient magnesium within the cell to assist the process of pumping the calcium out. If the cell is deficient in magnesium it cannot keep all the calcium out and so the cell will continue to fire. Due to our reduced intake of magnesium through diet and our increase in calcium it would be extremely difficult to take too high a dose of magnesium through supplementation. Another factor is that toxic symptoms from increased magnesium intake are not common because the body eliminates excess amounts unless there are serious problems with kidney function. As Mark Sircus has noted in his book Transdermal Magnesium Therapy, in reality problems only tend to occur when magnesium is given intravenously.
What is the difference between the five Magnesium Oil sprays?

  • The purest Magnesium Oil is the Original spray. This is suitable for anyone including children and during pregnancy. This spray is purely the magnesium chloride brine as it comes out of the ground. It is called an oil due to its hygroscopic quality meaning it acts like an oil. The Original spray is 31% concentrate in magnesium chloride. 10 sprays delivers a minimum of 150mg (43% RDA) of optimally absorbable elemental magnesium.
  • The Sensitive spray features the same pure magnesium as the Original, but with a concentration of 15% magnesium chloride, it has been dermatologically tested so that you can be 100% confident that it will be kinder to sensitive skin. 10 sprays delivers a minimum of 150mg (21.5% RDA) of optimally absorbable elemental magnesium.The Goodnight spray also has added essential oils; bergamot, clary sage, grape seed and chamomile. These give off a calming and relaxing aroma to help aid normal restful sleep. Again adding the essential oils brings the magnesium chloride concentration down to 28%. 10 sprays delivers a minimum of 130mg (38% RDA) of optimally absorbable elemental magnesium.
  • The Recovery spray has added essential oils; black pepper, camphor and lemon oils. These essential oils have a warming effect and so help to increase blood flow and aid cell detox during and after sport. The added essential oils bring the magnesium chloride concentration down to 28%. Every 10 sprays delivers a minimum of 130mg (38% RDA) of optimally absorbable elemental magnesium.
  • The Joint spray has added wintergreen and menthol oil but also glucosamine to help promote cartilage health.

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If you are interested in purchasing this product to try then just click on this link; https://betteryou.com/magnesium-oil-original-spray

I have gone with the 8% CBD oil as that is thought to be the right level for my pain, if you use the Love CBD site you can message Dan, who runs the company, for advice via email and for follow up help too. I have chosen the Magnesium Oil Original Spray too and will trial both of these on top of my current practices of heat, supports/splints and stretches to see if the combination will give me a better quality of life and reduced pain. After a month I’ll then write a blog reviewing them and let you know if they helped or not, along with a review and my thoughts and feelings about meditation too.

If anyone reading my blog is affected by any of the conditions I have spoken about I would love to know what works for you and if there is anything you have found that successfully helps reduce your pain.

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