Rheumatology, Cardiology, Falling Down and Midodrine

Finding the time and energy to write has been a challenge recently.  I’m not sure if you would describe my worsening ailments as a flare, but my poor, body has been struggling to hold things together.0ff7167e97f625a09a50879d90d5057c

Last week I saw my GP and my cardiologist and managed to get two new referrals in the process.  The first to a new rheumatologist, recommended by the London hospital who diagnosed me, and the second to an endocrinologist to check if the cardiologist is missing anything.  Don’t you just love these multisystem chronic illnesses?!

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For the rheumy we have a family outing on the cards, as the A level student and lovely girl have also been referred.  The bookings department called last Friday and asked if we would like consecutive appointments – I bet the consultant will love it when she sees the same surname appearing three times in one morning.  “What another genetic problem?!”  I have put off having the kids diagnosed with hEDS even though I can see elements in all three of them, but it has only been recently that I learnt from the lovely online support that they might be eligible for extra help in exams.  This is down to the pain and difficulty with writing that we with bendy fingers and dodgy collagen experience.  My daughter has never been able to hold a pen properly and they both struggle to be able write as fast as their peers – their brother, the uni student, was exactly the same at school.  In fact his fingers are so flexible that you might think they were missing their bones altogether.

The schools have responded really well and thanks to some fantastic blog posts that I was able to direct them towards, have now heard of Ehlers Danlos Syndromes.  We missed the deadline with the exams boards for the A level student to receive extra time (he needs a formal consultant recommendation) but he is allowed to be in a smaller room and to have rest breaks.  Had his typing been quicker, he could have opted to use a laptop.  My daughter’s school have been fantastic!  They are keen to learn – obviously they have seen me deteriorate after repeated surgeries and progress into a wheelchair – and many teachers have been upset to learn that she has not spoken up about pain, dislocations and difficulties in games classes.  Of course she is worried that a fuss shouldn’t be made as there are other people more in need!  But in terms of her year 10 exams after Easter, she will use a laptop and take rest breaks.  When I was at school I had no idea that the pain I always had and my difficulty getting through written work was actually down to a genuine problem – in fact at the beginning of this academic year none of us dreamt that our pain would actually be considered a reason for the kids to need extra help!  Of course the new guidelines came out last week for diagnosis criteria, so I’m not sure what they might be deemed as – well I could say a few choice words that have nothing to do with EDS!

More to come about the criteria and of course how we all get on.

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The EhlersDanlos Syndromes International Classification

I have been on the waiting list for a follow up cardiology appointment since the end of last year.  Immediately after my tilt table test, I started the synthetic steroid fludrocortisone to increase my circulating fluid and raise my blood pressure…if anything it made me worse as the faints, falls and injuries have come thick and fast.  My GP tried to have an appointment fast tracked, but when this couldn’t be arranged the cardiology department told me to double the fludro dose and continue with compression tights, fluids, salt.  I have felt so unwell and so tired!  Last week the consultant started me on midodrine, which in the UK can only be prescribed by a cardiologist for extreme cases of low BP that haven’t responded to conventional treatment.  It is early days and I am only on a low dose three times a day – but I cautiously think there is a small improvement.  The last dose of the day mustn’t be too close to lying down in bed as there is a risk of increased blood pressure when flat and strokes.  One side effect I do have is a strange creeping, tingling sensation of the skin particularly my scalp – about an hour after I take it when it reaches highest blood concentration level.  So if you see me out and I’m itchy, I really don’t have nits!!13413444_143336392741362_1604407187_n

 

It’s Time for Chronic Pain Patients to Act

Taken from Pain News Network

 

By Alessio Ventura, Guest Columnistdownload (3)

“I am a chronic pain sufferer who recently had multiple emergency surgeries due to sepsis infection after a shoulder replacement.

I have had 17 surgeries since 2008, including major back surgery, rotator cuff repair, biceps tendonitis, knee surgery and hernia surgery. Bottom line: my body is now wracked with arthritis and post-surgical pain.

I have tried several pain treatment modalities over the years, including Lyrica, Cymbalta, chiropractic, injections, NSAIDs, and acupuncture. The only effective treatment in my case has been the legitimate, professional application of opioid medicine by pain management physicians.

I have severe allergic reactions to NSAIDs, which kill 15,000 per year and send 100,000 to the hospital.  A friend of mine died from a stroke because of NSAIDs.

After my recent surgeries related to the shoulder replacement and subsequent infection, my wife had to travel to 25 different pharmacies before she finally found someone willing to fill my scripts for Oxycontin and Percocet.

This is not unusual though. Each month is a long trek to find pain medicine. What has happened due to government restrictions on opioids is a reduction in the supply of opioid medicine. The drug companies see the writing on the wall and are slowly trying to get out of the business.”

Remainder of article may be seen here: https://www.painnewsnetwork.org/stories/2017/3/13/it-is-time-for-chronic-pain-patients-to-act

 

Saturday Submissions: “Dysautonomia for Dummies”- With Evie from The Zebra Mom

Dysautonomia for Dummies from the fantastic Zebra Mom

Irish Dysautonomia Awareness

I’m Evie and I come from Cork, Ireland. I’m a 29-year-old mother of two baby zebras. Alex is 7 and Olivia is almost 2. I am diagnosed with Hypermobile Ehlers Danlos Syndrome (hEDS), Orthostatic Intolerance and Vasovagal Syncope. I first heard of EDS after interviewing a young woman with EDS for the paper I used to work for. Something about this woman’s story stirred something inside me and I became passionate about raising awareness of the condition. A year later I was diagnosed with EDS. When I’m not blogging, looking after my two children or lying in bed ill, I help my husband run our wedding videography business and co-host a radio show on Saturday evenings from 7pm (Irish time) on www.clonlineradio.com.

evie blog

I write about Ehlers Danlos Syndrome an awful lot and with where I am guest posting today, I decided to focus on Dysautonomia. I recently wrote A Simple…

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Pain Relief Cushions – my review of a natural product to aid in pain relief

Disclosure: “I have been given a “Cosy Cushion” Pain Relief Cushion as part of a product review. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.”

When we have pain the natural thing to do is reach for something to give us some comfort and hopefully in the process reduce the pain….or get rid of it!  This goes for a toddler falling and bumping a knee, to a broken bone, to labour and childbirth, to post operative pain.  Fortunately these pains are usually short lived (yes, I know that some labours go on for days, ladies) and will become a memory.  Not so chronic pain, which by definition is pain that has been regular and ongoing for over 6 months.

For most of us living with chronic pain, we have had to find our own methods to help to ease the symptoms in conjunction with drugs and medical intervention.  My back and leg pain is caused by nerve root damage, and I have always found heat to be one of the few things to offer me any relief.  So I was really pleased when Pain Relief Cushions gave me the opportunity to trial and review one of their wheat and lavender cushions.file_000-22.jpeg

Pain Relief Cushions state that their mission is to “provide freshly filled cushions at point of order” and that “the same cushion can be used hot or cold”.   The cushions can be heated in the microwave or will take heat from a radiator in order to “give a gentle, penetrating heat which goes deep into the muscles, eases and relieves pain”.  They can also be kept in the fridge and used for cold applications such as swellings and sprains.  The company is approved as a member of The Guild of Master Craftsmen.93fd76617fb1e63bbe687ab604fbddeb

I requested a long cushion to use across my lower back and down the length of my leg, but the cushions come in several different shapes and sizes to suit differing needs.  It arrived well packaged with a covering letter, a flier describing the product range and care instructions, and a separate insert with care instructions for the heating and freezing of the pillow.  The pillow is completely natural – the cover is luxurious cotton velvet, available in a selection of colours, and the filling is wheat and optional lavender.

I did opt for lavender and this was the first thing that I noticed on removing it from the packaging – a very pleasant change from some of the less sweet smelling similar products I have used before.  However, the teens in the house did not like the lavender smell, which initially becomes stronger upon heating – personal preference, I guess, as my husband and I both liked it.  The bag is well labelled with clear heating instructions and power settings for your microwave – an average time being 2 minutes.  The care instructions are easy to follow explaining the importance of bunching up the bag, that the microwave plate must be freely spinning and that a new bag might feel “damp” the first couple of times that it is heated.  Likewise the instructions for cooling/freezing are clear.

I have been using the Pain Relief Cushion daily for approx a month now and have been very happy.  When sitting I regularly use an electric heat pad but as this is plugged into the mains, it is not always convenient to use.  This is when a microwave heat bag really comes into its own, and whilst I have used similar products in the past I found this wheat bag to be superior in quality.  Before I have found that wheat bags have not stayed warm for as long as my trusty cherry stone heat bags, but the Pain Relief Cushion does stay warm for a similar time span and is well made.  Remember I use it daily and heat it several times a day, so it is very well used.  16906976_998625020269091_6683417726205034496_n(1)

I cannot claim that it gets rid of my nerve pain, but it certainly helps to ease it.  It has also been very helpful for the Ehlers Danlos join/soft tissue pain that I have all over my body – it was particularly good for my neck and regularly dislocating shoulders!  The pictures were taken on a “popped” hip joint day.  For those of us with monthly cramps, it is a great safe alternative to a hot water bottle!  I personally haven’t used the cushion as a cold compress.

The only piece of negative feedback came from my daughter with regards to the packaging.  She commented that in her opinion the flier would attract younger people to the product with a more contemporary, clean look – she is naturally artistic with an eye for graphic design.

From the time that I have used my Pain Relief Cushion, I would definitely recommend it as an aid to pain relief and will continue to use mine.

The products retail in the UK at  www.painreliefcushions.co.uk and in the US at www.ease-pain.com

The company can also be found on social media : TwitterFacebook and Pinterest

Pain pain everywhere

Paul’s Pain Story…..

wwwpalfitness

Straight up this is a lot of new

pain added to my arsenal

Osgood schlachter disease

space in between knee and

femur

Led to fractures

Scoliosis led to many slipped discs

despite being flexible and lifting

really heavy weight

A hit n run accident caused me to

have concussion syndrome and

I had a bad diagnosis of seizures

and I was out of it and these meds

cause seizures and not taking them

does as well

12 tears throughout my shoulders

that makes me shot

A neuropathy in my left arm and my

my oversized adrenal glands sucks

it means I’m shaky, bad at times

I’m training and bumping up the

ante daily butits hard on me

I feel like old wolverine, which the movie makes no sense as Logan’s healing

was never time related and he’s not

like the others as he doesn’t age

OK I do plasma donations…

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Are you a Chronic Illness Blogger?

Calling all bloggers – do you write about chronic illness?  Have you found the Chronic Illness Bloggers yet?  We are a group of like minded individuals who link up and support each other on our blogs, Facebook pages, Twitter, Pinterest, Instagram….you get the idea.

Our blogs range from posts on individual illnesses – pain, fibromyalgia, EDS, mental health, migraine, Lyme disease, to name but a few – to reviews of products, books etc., coping mechanisms, recipes, blogging tips and living life!  Come and join us.

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Compassion

I have just found this fantastic blog through Dream Big Dream, Dream Often Blog Sharing – definitely one to follow!

A Lion Sleeps in the Heart of the Brave

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There is no denying the fact the living with mental and chronic illness is a challenge. This seems especially true for those of us who have also experienced trauma. Childhood trauma sets us on a path that leads to low self-esteem, depression, anxiety, PTSD, and attachment issues. Many live in this state of maladjustment for years, often unable to recognize that something is wrong until we are well into adulthood, believing it to be the norm.

At some point in our lives, we begin to acknowledge the effects of childhood trauma. For some, this awareness surprises us, when we find ourselves, once again, in traumatic situations. For others, this awareness has a way of sneaking up on us, as we struggle with confusing and frightening emotions. Often times attempting to keep them at bay through unhealthy coping mechanisms. The faster we try to run away, the stronger the fear latches…

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Denial Only Makes Chronic Pain and Illness Worse

This piece from 2015 in Psychology Today really made me sit up and think, after a flare week, and remind me to focus on the positive in life…..even when it isn’t easy.

“I’ve done my share of denying that I’m chronically ill. It’s tempting to pretend that I’m as healthy as can be, but when I ignore my limitations by staying out too long or by insisting on engaging in activities that are beyond my energetic abilities, invariably, I land in bed for days. And so, I’m working on giving up pretending. It’s not good for me physically or emotionally.”

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Please find the rest of this article by Toni Bernhard here: Denial Only Makes Chronic Pain and Illness Worse

“How to be Disabled…According to Stock Photography” Hilarious article by Autostraddle author Carrie

 

I have just read this article in Autostraddle and it really made me laugh – the slightly dark, manic humour of a nurse and spoonie!  I want to share it with you…..but if you are a spoonie who is easily offended steer clear!!

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“I have to take this moment to apologize. It turns out, dear readers, that I’ve been leading you astray. I thought I had this whole “being disabled” thing figured out — y’know, focusing on intersectionality, various forms of ableism, or political engagement — but nope! My mistake! Apparently I’ve been doing it wrong since birth and need to completely overhaul my approach. And who do I have to thank for such an urgent epiphany? The wide, wise world of Shutterstock.”…….

Full article at this link, do read to the end:

How to be Disabled, According to Stock Photography by Carrie