Inspiring addition

I was window-shopping online during a time of brainlessness and I spotted a cushion cover which made me feel inspired.

We are often told we “can’t” do things and we soo often feel that we “can’t”, especially as we have a tendency to compare our abilities with that of our former selves. Change over time happens to everyone and we are being rather unfair on ourselves by comparing the me-now with the me-in-the-past, and extra unfair by focusing on what we can do instead of who we are. Change happens to everyone in various ways. And yes our health changes can be pretty massive, but the way forward is helped enormously by the way we view things. Our reality involves our perception of it. And perception plays an extra big part for us when it comes to coping skills and finding the positives.

Being able to turn those “can’t”s around into “can”s is a truly fabulous feeling. And feeling inspired is often such a floaty-light moment of gloriousness where we rediscover our smile, our hope, our confidence, our determination. It is not to be underestimated or neglected.

So I bought that cushion cover for myself. Every time I looked at it online I felt inspired so bringing that inspiration into my home where I could see it every day seemed eminently sensible!

It arrived yesterday, having travelled all the way from Australia, thanks to a shop on eBay…

Inspirational cushion cover

And the monkey was a pressie from, and created by, one of my friends from school so he makes me smile too. He and the cushion are a pretty good pairing!
(Thank you Jaime, he’s been enjoying sitting on the chair by the window in the front room). 🙂

What inspires you?

Is there something you could move to a more prominent position so that you feel lifted when you most need it?

x

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Taking ownership

Today’s WEGO Health Challenge is: “Write about a time your health condition forced you to grow up and take the training wheels off (so to speak).”

If I had been asked this a few years ago I most likely would have cited the time I realised that my physiotherapist had got things wrong and I decided to keep doing the physio’ exercises regardless of what she said. But now, only one thing stands out as a complete life-changer, and that was losing my family.

Pain of confusing loss, broken heart

I’m not going to talk about the process of loss, or the extreme grief and confusion. Or about the neurological issues that screwed up my processing, my comprehension, my word recall and more. That’s not the core issue for this post. The real crux of the matter in today’s writing challenge is that I was suddenly adrift; more alone and lost than I’d experienced before, and it brought home some harsh truths.

1) I had to accept that there was much I did not know about my own condition. And that the lack of knowledge contributed to the loss as none of us recognised the neuro’ issues. It would have been so obvious many months earlier if only we’d known it was part of my condition in the first place. 

2) I realised that I cannot assume anyone will stick around, even those who I thought would always be there. So I am even more super grateful for those who do.

So firstly I had to stop relying on doctors’ poor knowledge and stop assuming that those close to me would roll with the odd changes along the way. I had to get educated and I had to do it properly because I needed to take ownership of my health issues. I am at the centre of the web of my own life, I cannot expect others to just deal with stuff because I don’t notice it happening. I need to be aware, and in doing so I can self-advocate in my own healthcare, too.

Researching on the laptop

After that life-shattering event my world now feels pretty unrecognisable from what it was. For the first year I was incomprehensible and struggling to function at all. Distraction techniques were key that yearNow I know that the shock, grief, lack of understanding of what had happened, had all combined to make sure my ‘fight or flight’ didn’t shut off at all. The one event that escalated my existing autonomic issues to extreme levels and helped to create new ones… was also the one event that forced me to ground myself and take control of my own life.

The second year after the loss I was still experiencing severe autonomic issues but the whys and wherefore’s about the health issues were beginning to fall into place. I was mortified that so many fellow patients out there were just like me – with rare contact with doctors who understand (or who are even aware of) the multi-systemic issues, and no reliable way to find relevant, up-to-date and correct information themselves. (I have found the internet information on CRPS to largely be very hit and miss and rarely encompassing much more than the basic pain aspects. Morahan-Martin’s research has found this to be the case with health issues generally).

I wanted to help share the information I’d found, but it needed to be freely accessible and searchable. I decided to set up a website, and the best way for a website newbie like me seemed to be to use a reliable blog host. And so this weblog was born of my life-change. I had found a path along which I could help others and make a useful difference.

I had acquired knowledge which helped me to a) better understand my own condition and piece things together, b) to present things more coherently to my doctor as well as teach them more about my condition and how they need to think along different lines for patients with conditions like this; and c) which I could share with fellow patients all over the world.

Openness about reliability is very important to me, so I put dates at the top of the separate info’ pages so that readers could see when it was written and when it was last updated. Many websites do not do this, which is how people still think things like the ‘stages’ of CRPS are still being used when they were discarded so many years ago.

Poor quality and outdated information is rife in our patient group because it’s such a multi-disciplined specialist area that our general doctors just don’t get the new updates. Not all of us can read through research papers to filter the key information to add to the bigger picture, so I figured that’s where I can use my research skills.

And it’s rolled on from there. I’ve met other ‘expert patients’ who also have multiple co-morbidities and multi-systemic issues. We are part of an international informal network of CRPS information sharing. We admin’ in support groups and share information with others, some of us blog about our health conditions.

For my masters degree research I focused on what I could do to help fellow patients within the constraints of my academic field. I was overwhelmed by the number of wonderful patients who participated in the study and I’m now writing a research paper which I would like to be available to all via an Open Access research journal.

Dissertation parcelling up

Three copies of my research dissertation ready to be posted in March 2013

All of this gave me value and self-worth, gave me purpose and confidence, which rolled into other areas in my life as well. Before I knew it my physio’ Tai Chi classes led to performing in public at a Chinese New Year celebration in a local town, then I found myself winning medals at two national competitions and it’s exciting thinking of the potential for the future.The advocacy work and my involvement with other patients online has resulted in my meeting the most wonderful fellow patients who shine so brightly. I am privileged to have met them and honoured to call them my friends. I think about taking blog pic’s when I’m out. I write blog posts to share info’, to share experiences, and sometimes for pure silliness and a bit of a chuckle (coz that’s important too, of course)!

It’s now just over three years since the life-changing loss. I still think about it every day, I still wonder what happened, and it still hurts so much, but even though the pain doesn’t go away I am getting better at dealing with it. I have found new paths because the family context of my identity is no longer there, I needed to create a new context – I have been forced to focus on me, which was initially totally alien to me and felt all wrong. But I’ve increased my awareness, knowledge and I push myself all the time for more (within sensible constraints to keep my health ticking over, of course). My literature review is getting bigger, and it looks like it’s going to become a separate co-written paper with one of my peers who is medically trained so that we can both bring our skills to bear. Again,.. Open Access for availability to all would be wonderful. Oh and in 2014 I’ll be moved up to the intermediate level at the nationals so that’s ongoing to. So many plates spinning all at once! 😉

I always thought of myself in terms of being a daughter and a sister in my family. Who I was then was intrinsically linked with who I was related to, our family morals, likes and experiences. We’d always been there for each other and had come through so much together over the years. Now I have to see myself as me. Just me. I think I’m finally getting the hang of it!

I think we can safely say that the training wheels are off and I’m metaphorically thundering along a bumpy road with boundless enthusiasm. How about adding an international charity and associated information website into the mix? Oh yes, it’s coming! I’m designing tee-shirts for the shop when I am able (I’ll post a link once there’s items in there to look at, x), and it’s wonderful to know that all of the proceeds will be able to go towards making a difference. Everything takes longer because I am chronically ill, as are my counterparts involved in the same adventure, but we do what we can when we can and eventually we get there. Time has to be flexible, deadlines aren’t always viable, but with direction and determination I’ll get there!

x

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Gabapentin (Neurontin)

The author is not medically trained, and not advising one way or the other on this medication.

It is very easy to end up with only a part of the information available when trying to find out about a medication. Without more information from more than one viewpoint we have far less of a secure foundation to make a decision which is ultimately going to affect our health. I am not writing this to sway you one way or the other. I would always want any patient to make-up their own mind. That is our moral and legal right to do so.

Any medication has pros and cons. The key is weighing up the odds and deciding what works for our particular body with our particular condition(s), symptoms, medical history and so on. This is something for you to discuss with your doctor / medical team and a pharmacist, and not the right of anyone else to tell you what to do (especially people who are not medically trained or do not understand your condition, hence the inclusion of pharmacist at the reminder of a good friend coz they’re the experts when it comes to meds. I always talk to my local pharmacist before talking to my doctor about a meds issue).

I have friends who have taken Gabapentin in the past, a friend who is currently taking it and finds it helps their pain, and I have at least one friend who wouldn’t touch it with a bargepole, and each of those people is doing what is right for them. So first of all – please do not worry. If you have autonomic dysfunction (and that includes CRPSers) worrying is more likely to set off the fight or flight system and make it harder to process information, make decisions etc. So be kind to yourselves, whatever you, your doctor and pharmacist decide is fine. It is your choice to make, xx

file000303654817 from morguefile

The go-to medication for many doctors when treating pain is Gabapentin (brand name: Neurontin). It is a drug which was approved in Canada for treatment of epilepsy back in 1993. It was never approved for treatment of pain, migraines or bipolar disorder, and yet the company who produce the drug (Pfizer) promoted it for these conditions anyway.

Why would they do such a thing?

Well, in 1998 a study into neuropathic pain in diabetes (Backonja et al) concluded that Gabapentin seemed to include positive effects on neuropathic pain, sleep, and even on mood and quality of life. In the same year a study by Rowbotham et al into the treatment of persisting pain after having shingles (postherpetic neuralgia) concluded pretty much the same thing. These are the pain conditions most commonly used for testing drugs for neuropathic pain, so…. the outcomes sound pretty awesome, eh?

Kaboom! Suddenly, and unsurprisingly, Gabapentin became the drug of the moment and really widely used.

pills-out-of-bottle, stock exchange

Two years later a drug assessment was carried out by the Therapeutics Initiative in Canada. Their intention is to provide up-to-date and, crucially, evidence-based drugs information to doctors. Therapeutic Letter #33 (1999-2000) informed that it had been found that Gabapentin is actually removed by the kidneys and has no painkilling (analgesic) effect after all. It concluded that, at best, it may assist with the two conditions in those studies to a small extent (less than 1 point of pain improvement on a 10 point scale) and only for a small percentage of patients (15%). This drug would therefore not be likely to be approved for the treatment of pain, it just isn’t effective enough to do so. And the reason it can only be said to have a small effect on these two conditions is simply because it cannot be assumed that something that works on diabetic neuropathic pain and postherpetic neuralgia would work on other types of pain condition. Pain conditions vary and so much about underlying mechanisms is still unknown – there just isn’t any foundation to be able make that assumption. Interestingly, this last point was made by one of the authors mentioned above (Michael Rowbotham writing about the design of clinical trials in 2005).

The same assessment also found that all that varying doses of Gabapentin did not vary pain relief at all. The only thing that varied with dose was toxicity to the body. Additionally, about 15% of patients also experienced detrimental effects from the drug.

The final conclusion of the assessment was that “Gabapentin has no role in acute nociceptive pain” and they noted Pregabalin (Lyrica) as being similar in pros and cons but even worse for detrimental effects.

research, test tube, from morguefile

After this, a litigation in the USA resulted in a court ordering all unpublished studies about this drug to be released. Funnily enough, as is sadly still the norm in medical research, the company who created the drug had only published the research that said the drug was helpful. All the research with negative outcomes and conclusions were never made available outside the company. (I have issues with this ‘norm’ and want it to change – all info’ should be available or else how are we and our medical team supposed to make informed decisions about medications? More about this at the end of this post).

More on the negative effects of Gabapentin have turned up in more recent research. For example Eroglu et al, 2009, who found that it stops new synapses being formed in the brain (as does Lyrica / Pregabalin). We used to think that adult brains didn’t do this anyway, but now we know better.

Many pain patients are still on this med, and many new patients are still being prescribed it.

What I was not aware of until recently was that Pfizer was fined for drug fraud over this, 3 and a half years ago.

So why is it still prescribed?

Well, Pfizer still defends its actions and still purports that the drug should be prescribed for these unapproved uses (despite the research showing otherwise).

So the outcome is that there are cons to taking Gabapentin for the two types of neuropathic pain researched, there is no research into CRPS and Gabapentin, it doesn’t relieve pain for most patients because the kidneys remove the active ingredient, but a small number of patients with diabetic neuropathic pain and postherpetic neuralgia do experience some pain relief.

OLYMPUS DIGITAL CAMERA

I said to some fellow patients that I would share this information in case anyone wanted a broader view because we all deserve to make informed decisions. If no-one informs us we’re scuppered from the off. What I don’t want to do is worry you. All medications require consideration of the pros and cons by you and your doctor. There is never a magic pill that fixes everything and has no side effects. If you experience good effects and assistance from being on the drug then you could be one of the lucky patients who has enough overlap with the assessed conditions and also falls into the 15% who experience benefit. If it helps you, it helps you. And we need to make sure we have effective medication for our condition(s). If it’s effective then that’s good. If you want to double check with your doc’ and pharma’ to reassure you then of course do so, but don’t worry.

If you are a patient who has not experienced any help from this drug then you now have back-up to be able to ask your doctor for something that is more effective for your body and your condition. If you are a patient who wants to come off the drug for other reasons, well, you could just throw this in there as well as part of your reasons if you want to. What works for one patient doesn’t necessarily work for another. Neuropathic pain is neurological, and we each develop a uniquely wired and linked brain in the womb so it’s not surprising that what works for one doesn’t work for another. The key thing to remember is that neurological illness means variation between patients.

So some patients will stick with Gabapentin, and others may not. It depends what is right for each of us. Though the research suggests that anyone who finds it helps their pain is in the minority.

I hope that this helps, x

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Thank-you to Lili over at Taming the Beast who originally alerted me to Gabapentin issues.

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A note about research publication
It is the norm’ that research gets published if there is a positive outcome, it does not get published if the end result is negative data. So we cannot gain access to the other side of the story which we need to make an informed decision.

It is a simple but crucial difference to publish all data.

And this is what Dr Goldacre and his team is trying to change internationally to help us patients by getting our doctors access to all of the info’.

The website and petition is here (at 58,783 signatures when I wrote this, and it needs more to have more impact). And here’s all of the companies who are already on board with the idea. (Yep, I am openly biased on this one! I’m all for having access to all of the information. Otherwise it leaves doctors and patients second-guessing medication which is downright silly)!

Dysautonomia awareness month

Oh how ironically this month began for me! Here we are in the awareness month for autonomic dysfunction and there I was, on the last day of September, listening to a doctor tell me that I had not been clearly diagnosed with any sort of autonomic dysfunction, even though the whole reason I was there was to discuss my third type of meds specifically intended to help stabilise my Autonomic Nervous System (ANS)! <headdesk> !
(She wasn’t my usual doc, I’m off to see my doc instead in another week or so).

Yep, you didn’t just imagine that paragraph, I really did go for an appointment about my latest ANS-stabiliser med only to be told that I don’t have any official autonomic dysfunction!

I have CRPS… that in itself is a form of autonomic dysfunction (Dysautonomia). (See my description of CRPS including the ANS pain amplification here).

Current research shows the extent of autonomic involvement in CRPS. (See Schwartzman’s research paper link on this page), and indeed a lot of autonomic issues have popped up to keep me company on my journey through life during the last few years.

I wrote a post about how SSRIs can help to stabilise the ANS, about how jaw clamping can be a side effect owing to resulting dopamine suppression and how it might be worth me trying a mixed SNRI as they function as both an ANS stabiliser and reduce dopamine suppression… Well, the doc I saw said that she only prescribed it because I asked for it!

It is true that I want a doctor to listen to what I have to say, but one that prescribes whatever just because I ask for it? How responsible is that? I’m not medically trained. I’m an expert patient – I know a lot about my own condition, and I’m trained in research so I know how to trawl the journals, how to read things with a pinch of salt and how to slowly build up a potential picture, but I expect to be able to take information and knowledge with me to then discuss them with someone who is medically trained and can offer further insight on the information I’ve gathered. Not blindly prescribe me meds without any discussion at all and without any knowledge of my health issues.

References to my having ANS dysfunction should be throughout all my notes of the last few years and the advice of the consultant ties in exactly. However, lack of awareness of autonomic dysfunction is the issue here…

We have here an example of a doctor who plays it by the book, which is not to be sneezed at on it’s own, but this doctor will not see a pattern in a patient’s notes and does not want patient involvement in higher thought processes. She wants to see a clear diagnosis and if the consultant does not state the obvious she sees it as non-existent until the consultant does so.

She has advised me that she does not want to hear me use medical anacronyms, and she does not want to hear about dopamine. She stated clearly that..

“We are here to treat patients and symptoms. That is all. I only want to hear about side effects, I do not want to hear you talk about dopamine.”

Oh silly me, there I was interested in a treatable cause rather than an endless treating of symptoms and side effects instead. *sigh*

There are some times when you stand up for yourself, and I did. With tears in my eyes that did not fall I pointed out very calmly that it is difficult not to mention dopamine when it may be the whole reason that I have jaw clamping issues – we cannot treat the cause if the potential cause is not to be mentioned or discussed. I also explained that I am not stupid, I know how to read research in a sensible unbiased manner and have not just grasped one paper and run with a concept.

I got a tight-lipped ‘look’. She stood up to indicate that it was time for me to leave. I had been told. I knew I would get nowhere with this doctor, even talking sense was not allowed because it was not in her rule book for patient behaviour. So I left…

…and promptly burst into tears in the corridor outside. Ah yes, there are times when you stand up for yourself, and times when you keel over. Both in one day, eh? Classy!

Do not research for causes or use medical terms

After sobbing my heart out quietly in a sideroom which a passing nurse had kindly offered me, I eventually got to a stage where I thought I could walk home without nearly passing out. (No ANS issues, haaaa!) And by the time I left I had formulated a plan.

The Plan:

1) Never to see that doctor again
2) To catch up with my paperwork and get my notes from the autonomic consultant because his letters left so much of our conversation out (and therefore won’t be in my general notes)
3) To ask my doctor to fax the consultant dept’ asking The Question i.e. please can you put in writing to what degree this patient had autonomic dysfunction at the time of her appointment?

The reason for #3 is that I have been through several years of autonomic-related appointments… respiratory (for breathing techniques and acupuncture), cardiology (for ECGs and more), culminating in the neuro-vascular autonomic specialist tests last year and the related consultant appointment this year, since followed by a hypermobility specialist and soon to be followed by a jaw-clamping (TMJ) specialist. If I risk seeing a doctor who doesn’t believe all of that despite the list of my medical adventures, then I need a bulletproof statement of illness from a specialist to bypass such silliness and allow me to have a sensible and relevant conversation instead of going back to square one again.

Don’t forget:

– Always get copies of your hospital notes
– If your doc’ doesn’t respect you and/or won’t work with you – change doctors

The autonomic consultant didn’t state the obvious because, to him, it is obvious. He and I both know it is already in my notes and besides – I’d been sent to him for specific testing to figure out what exactly was going on with my ANS, not to find out if it was wonky or not, we already knew it was wonky.

If the doctor I saw had been aware of autonomic dysfunction then all the info’ is there in my notes for her to see. That is how important raising awareness about this condition is. Because without that awareness patients can be left hanging without appropriate support, discussion and treatment for their condition. And, like me that day, they can feel so very exhausted from having to fight for every little basic step when they really shouldn’t have to.

Knowledge. Awareness. It really does make a massive difference to effective appropriate care.

To each of us patients, to our treatment, our quality of life, our ability to concentrate on our life instead of endlessly trying to explain to a doctor who draws lines in places where there would be no need if they were aware of some important basics.

And to each doctor it would save them time, and help them to do their job more efficiently and effectively. Not to mention reduce the number of angry/weepy/distressed patients they have to deal with. Plus it would enable treatment of some of the causal issues instead of the endless roundabout of treating symptoms and side effects without looking at the ‘why’.

There is no need for the kind of damaging appointment that I experienced.

Awareness needs to be raised to avoid this kind of damaging event which can detrimentally affect patient health. Bear in mind that living with autonomic dysfunction such as POTS has been likened to the quality of life experienced by patients living with chronic heart failure. Yes, the kind of damage that can be done through lack of awareness is frighteningly massive.

I am able to go to another doctor, I have years of self-advocacy experience behind me and more research papers than you could wallpaper your house with. But what about our fellow patients who are new to this? Just learning? Still trusting what all General Practitioners say instead of having enough hard-earned know-how to spot which doctor ‘gets it’ and which doctor could be damaging to work with?

This month is Dysautonomia awareness month for good reason. It’s not for heart-warming feel-good vibes. And it’s not some sort of my-illness-is-worse-than-other-illnesses thing! It is simply a response to a dire need for greater Dysautonomia awareness.

Awareness in patients
Awareness in doctors
Awareness in family and friends

Awareness solves a lot of potential issues before they even begin.

So if you get the opportunity, please share some info’, here’s a few ideas for links you could share as well as links to some other ideas about how to get involved…

Dysautonomia awareness ribbons from DINET on Facebook which you can use and/or share

Dysautonomia SOS basic info’ link to share

Dysautonomia International are having a tweet-a-thon

Dysautonomia International map of events to see if there’s one near you, (you can choose what is shown in the drop-down box at the top, at the time of writing there are only events listed in the USA)

Other ideas and links listed here from Dysautonomia International

Other ways to get involved via Dysautonomia SOS

CHANGES: Living with Postural Orthostatic Tachycardia Syndrome: A very informative video by DINET about living with POTS. As many forms of autonomic dysfunction involve the same symptoms this is a great video to watch whichever form you have as there is lots of information and advice included.

What is Dysautonomia?

Dark blue for Dysautonomia (Autonomic Dysfunction)

Dark blue for Dysautonomia (Autonomic Dysfunction)

Thank-you, xx

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SSRI stabilisation effects on the autonomic nervous system, and my muscle tension side effects

SSRIs (Selective Serotonin Reuptake Inhibitors) are one of the types of medication which can be used to help stabilise the autonomic nervous system (ANS). When our ANS is dysfunctional one of the things it can do is to over-react to varying serotonin levels in the brain. The SSRIs effectively flood the brain with serotonin so that there are no longer varying levels for the ANS to react to. Simple, right?

Well, not quite. Each of us is an individual in our neurological make-up, each of us has a unique selection of ANS issues as a result of our dysfunctional ANS, each of us reacts differently to each medication.

As with most medications, there are a whole host of possible side effects. It’s a well-known joke in chronically ill circles that the list of potential side effects for each medication also tends to be a list of the very things we are trying to resolve! 😉

My experience of trying an SSRI began as a desperate attempt to improve my functioning whilst awaiting my autonomic consultant appointment. After the first couple of days enduring hideous side effects it settled down and made a significant difference to my day-to-day quality of life.

I was hoping that the med might reduce the continuous near-syncope (near-fainting) and maybe even reduce the permanent severe nausea. The reality was so much more.

I experienced improved baselines in…

– near-syncope  (less severe)
– nausea (improved baseline)
– brain fog (improved baseline)
– some of the neuro-psych’ deficits (improved baseline for issues with word recall and spelling)
– constipation (improved baseline)
– heart palpitations and dysrhythmia (more stable, still irregular bouts)
– body temp’ extremes (more stable, fewer events)
– tingling and numbish sensation in face and arms (now only when near-syncope)
– fatigue (improved baseline)
– disrupted vision (fewer occurances per day of blurriness, tunnel vision, appearance of writhing, ‘dust motes’ of light)
– eye tremors (rarer)
– breaking fingernails (improvement)
– strawlike hair (improvement)

I have plenty more symptoms than just these, but these were the ones that improved baselines as a result of the SSRI. (For more info’ on autonomic issues see here).

SSRIs are also used for nerve pain, but I was not expecting any change in my pain. However, it became apparent over time that there was a significant change in the CRPS pains in my legs (the worst, and longest affected, areas in my body) – they were much easier to manage than before. That’s some bonus, huh?!

SSRIs are most commonly thought of as being for treating depression. If we have depression as well it is possible that our mood baseline can also be improved. I didn’t notice any change, but that’s not surprising as I have not been experiencing any depression (I tend towards the chirpy side! 😉 ).

There is no ‘magic bullet’. There is never a medication for this level of medical complexity that doesn’t have pros and cons. And over time I found that certain other symptoms got worse.

The one that has been causing mega problems is the issue with my jaw. I have had a clicky right side of my jaw for years, but it’s never been a problem. About 20% of the population have jaw issues like this that do not develop into anything more. My dentist checked my jaw every appointment and each time there was no change – everything was fine. But the SSRI changed that.

The first two days of side effects had included extreme effects on my facial muscles. It felt like my face was trying to pull itself downwards off my skull and, according to Magic Dude, that’s what I looked like too! Pretty extreme, but my doctor hadn’t started me off incrementally so my body had a big change to deal with. Initial side-effects are worth working through to see what benefits the medication really has, and if you start on a smaller dose and build up gradually the transition is much easier than my first experience was.

The extreme first side-effects calmed down but I continued to experience jaw clamping. It was very distracting as I continuously had to unclamp my jaw throughout all my waking hours. No sooner had I unclamped the muscles than I noticed they’d tensed up again. This was so continuous that it’s no wonder that my jaw pain worsened over time. I moved from clicky jaw status to having to physically (and very loudly) clonk my jaw into a different position just to be able to open my mouth enough to fit some food in, and I had to do this for each and every mouthful. Eventually the clonking, and even the clicking, stopped, but I couldn’t open my mouth very wide any more and the intensity of pain in my face was increasing day by day.

I knew that patients with autonomic dysfunction (dysautonomia) need to be aware of possibilities of things such as temporomandibular joint disorder (TMJ) which involves lock-jaw and jaw pain, but I’m not one to assume the worst. So I kept on going with the SSRI because without it my quality of life was frankly dreadful. I had no wish to return to the days of crawling along the floor just to get to the bathroom without passing out. But there came a time when the pain was so relentless that I decided it was time to go to the doctor and beg for a different SSRI with less side effects.

The doctor changed my SSRI as I requested and lo and behold…. I got even worse! The jaw clamping disappeared during the lower dosages transition phase and then came back with a vengeance. Permanent cluster migraine, woot! *sigh*

That alternate med was not the answer. It turns out that the fact that they were both SSRIs could be the problem, rather than the side effects of those ones in particular.

As my doctor had no ideas on the jaw pain, I contacted one of my awesome fellow patients who has oodles of nursing experience and has been piecing together neurological aspects of CRPS over the years. I asked her which SSRIs might be more likely to avoid this side effect. She found a research paper which linked jaw clenching issues and SSRIs. I then conducted a journal search on “bruxism, SSRI” (bruxism being the medical term for the jaw clamping) and came up with several more papers on that specific subject. Various psychotropic drugs including SSRIs have been found to have an effect on our motor responses. Tensing of muscles is not an uncommon issue, so research has found that jaw problems are pretty common in patients taking SSRIs. Papers have considered and discussed this over the years and last year one paper declared a “clear link” between the two. (References are included at the end of this post).

Research on bruxism and SSRIs

This new knowledge allowed me to make a connection that I had not made before – most of the symptoms that were worsening on the SSRI were motor issues:

– I developed jaw clamping, jaw pain, lock-jaw and soft tissue pain in the area
– restless legs at night had got worse, particularly the extra tension and resulting pain
– my occasional tremors were worse and more frequent
– dystonia in my legs became worse when it happened
– dystonia in my hands developed (I don’t even notice until I feel my fingernails digging into my palms)
– muscle twitches and spasms had become much more common

So suddenly I had a potential reason for these worsening issues. Next on the list… how do I address this problem?

One of the papers (the one that my friend had found originally) pointed out that SSRIs tend to suppress dopamine which has a knock-on effect on our motor control. Ah-haaaaa, now we’re getting somewhere!

So my fabulous friend started thinking along the lines of mixed SNRIs (Selective Norepinephrine Reuptake Inhibitor). As the name suggests – it works in a similar way to SSRIs, just on a different neurotransmitter chemical, norepinephrine (known as noradrenalin in the UK) and, to a lesser extent, it also has effects on the dopamine levels. A mixed SNRI works as both and SSRI and an SNRI.

So in theory a mixed SNRI could potentially solve my problem (I’m crossing my fingers here!) as it should enable me to retain the stabilisation of my ANS that the SSRI has been shown to achieve in my body, and the SNRI will (hopefully) counterbalance the negative effects on my motor control by reducing the SSRI’s suppression of the dopamine.

I could, of course, have considered taking an additional med as well as the original SSRI. But multiple pharma makes things complicated. Some meds have a tendency not to work well together, and even if they tick along together nicely we are no longer able to pin down what’s causing which symptom as easily as we used to because there would now be multiple variables in the mix. As a rule, less complicated pharma is the preferred option.

For extra info’:

I was originally taking 20mg of citalopram hydrochoride (Citalopram)
SSRI, Citalopram

I was then moved to 50mg of sertraline hydrochloride (Lustral / Zoloft) to see if the jaw clamping would stop. (50mg of Lustral is effectively matched to the 20mg of Citalopram).

SSRI, Lustral

Also known as Zoloft

I reduced the dose of the Lustral very quickly to 25mg to reduce the unbearable jaw clamping and resulting cluster migraine whilst not entirely losing the effect of the ANS stabiliser. It was far from ideal, but just to try and get me through until I could get a doctors appointment to share the intel I’d found and beg for a change!

There are only two SNRIs that get prescribed in the UK as per the Medicines and Healthcare products Regulatory Agency (MHRA). They are Venlafaxine (brand names Bonilux, Depefex, Foraven, Politid, Venlalic, Winfex, Efexor) and Duloxetine (brand names Cymbalta, Yentreve).

In the USA the Food and Drug Administration (FDA) approve both of the above SNRIs, plus a newer variation on Venlafaxine called Desvenlafaxine (Pristiq).

My doctor’s surgery tends to prescribe Venlafaxine as a first port of call so I went with that.

I checked with the pharmacist before paying for the meds and she confirmed it was a sensible response to the issues I’d been experiencing, and that it is also a pretty good one for less side effects. Phewee!

SNRI mixed, Venlafaxine

Also known as Effexor

So I now have a starting dose of 75mg of Venlafaxine (which is split over two doses during the day). My awesome friend advises that at the lower levels it is effectively only functioning as an SSRI (and research shows that jaw clamping is indeed disproportionately high in patients on this lower dose), and that the SNRI aspect kicks in at around 150-300mg. So I’m not expecting miracles on the starter dose.

This is now my fourth day of taking the low dose and, yep, motor control issues a-go-go! Some jaw clamping but mega-issues with dystonia constantly trying to onset in my legs. Sleeping is even less possible at the moment and it’s tough going. I was advised to call the doctors’ surgery to arrange the next dose increase and did so this morning. I should get info’ on how much extra to take and a new prescription soon. Then I will keep my fingers crossed for an improvement at the increased dosage when the SNRI should kick in and, hopefully, rebalance the dopamine levels.

On sharing this info’ with friends I found that quite a few people taking SSRIs for varying reasons had experienced jaw clamping as a side effect, and that they and their doctors were not necessarily aware of the link with the meds. So I felt that a post was warranted to share the finds with more fellow patients.

As always, I hope this helps. Much love from me, x

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References for the research paper I mentioned:

Ak, M., Gulson, M., Uzun, O. & Gumus, O.  (2009) ‘SSRI induced bruxism: case reports’, Bulletin of Psychopharmacology, Vol. 19, Suppl. 1, pp 114-116

Bostwick, J.M. & Saffee, M.S. (1999)  ‘Buspirone as an antidote to SSRI-induced bruxism in 4 cases’, Journal of Clinical Psychiatry, Vol. 60, Issue 12, pp 857-860

Fitzgerald, K. and Healy, D. (1995) ‘Dystonias and dyskenesias of the jaw associated with the use of SSRIs’, Human Pharmacology, Vol. 10, pp 215-219

Khalil, R.B. & Richa, S. (2012) ‘Psychotropic drugs induced bruxism: a focalisation’, Annales Medico-Psychologiques, Vol. 170, Issue 3, pp 169-173

Kuloglu, M., & Ekinci, O. (2009) ‘Bruxism in psychiatry’, New Symposium Journal, Vol. 47, Issue 4, pp 218-224

Lareb (Netherlands Pharmacovigilance Centre) (2007) ‘SSRIs and venlafaxine in association with bruxism’, http://www.lareb.nl/Signalen/kwb_2006_2_ssri

CRPS patients and dentist appointments

Many patients ask for advice about what they should say to the dentist about their CRPS. Some dentists have come across patients with neuropathic pain, but may not be familiar with the extent of involvement of the central and autonomic nervous systems in CRPS. Or of the possibility of CRPS spread after dental treatment without sensible precautions.

dentist2

(picture source)

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So here’s a list of helpful tips for you and your dentist to reduce the nervous system response to treatment…..

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Relax the central nervous system beforehand if possible (e.g. laughing gas)

DO NOT use anaesthetic with adrenaline/epinephrine in it (because our ‘fight or flight’ is wacky enough already, making it even worse is to be avoided)

– You may require more anaesthetic than our healthier counterparts out there. Particularly if you are also hypermobile, ‘double jointed’ or have been diagnosed with Ehlers Danlos Syndrome (EDS). (The absorption of local anaesthetics can vary from the ‘norm’)

Limit treatment sessions to 15-20 minutes (to help the body calm down and recover afterwards in a more timely manner and to avoid any long-lasting issues)

The dentist should also give you another dose of the local anaesthetic before you leave (to give your nervous system longer to calm down before any resulting discomfort kicks in)

Ask the dentist to write this information on your medical notes so that you do not have to remember to tell him/her every time you visit them

– After any invasive treatment it is helpful to take vitamin C for 2-3 weeks, 500-1000mg per day (to help the nerves to recover) NB: the body can only absorb up to 500mg in one go

– Set aside time after the appointment to rest and recuperate. (It is important to allow the nervous system to calm down and to keep it calm, if possible give yourself a rest day the next day as well)

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These are tips and suggestions founded in the scientific understanding of CRPS. Some are more crucial than others, but all are worth doing if at all possible. For example, my dentist does not do the calming of the central nervous system first, but then again I’m pretty good at calming myself anyway. I always insist on non-adrenaline (non-epinephrine) anaesthetics as the effect on my heart rate and near-syncope (near-fainting) is pronounced. And a good dentist should always ask you if an area is sufficiently numb anyway. Once the dentist knows about these things then they should become the norm whenever you go in for treatment, including the post-treatment anaesthetic and just doing one thing per visit (unless you’ve both agreed otherwise for good reason and with counter-measures in place, of course). A good dentist is worth a lifetime’s tea! (Well, maybe a month or two, not sure I could give up tea for life!) 😉

If you’re just going for a check-up.. the extent to which you need to do the above will vary per patient. For some people these are still important, for others just keeping calm and resting afterwards is enough. Discuss your issues with your dentist and choose what works for you for check-ups.

So there you go, some tips for CRPS dentist appointments. I really hope that this helps.

Much love from me,

x

Caring for yourself is not selfish it is survival

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An NHS link you can show your dentist re hypermobility and anaesthetics not working so well is here.
(This link courtesy of my fellow blogger the Hypermobile Hobbit, x)

Photo Challenge for CRPS Awareness, Day 12

A Day In My Life Photo Challenge for 30 Days Of RSD/CRPS Awareness, June 2013

Day 12 – A picture of something you love

I am my own advocate. I continue to learn about my condition(s) and keep readjusting my overall view to find the best way of working for my body long-term. But as I am part of the informal global network of patients I am in a position to do what I love most… which is sharing that self-advocacy with my fellow patients. We pool our knowledge, ask each other questions, pass on research information and helpful links online. All to help each other. That’s what I love.

Best of all is that meeting other expert patients means that we get to piece together new understandings and links that are more apparent from our broad views as patients than they can ever be from specialist doctors’ views of their specialist area only. CRPS is a multiple disciplinary disease, it covers the ANS, CNS, auto-immune system and neurological changes. So it’s not surprising that many other conditions overlap with, or form part of, CRPS, for example: Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, Multiple Sclerosis, Dysautonomia, Hypermobility Syndrome, Ehlers-Danlos Sydrome, and many more. There are plenty of patients with these individual conditions, but many CRPSers have multiple conditions as part of their overall CRPS. The more I read about each of these overlap conditions and relate it to what I’ve found in the research about CRPS, the more concepts and understandings keep falling into place, or trying to (the complexity of this disease is a challenge!). I’m not medically trained, but it is phenomenal how much you can learn when you have to, and to be the best self-advocate I can be this is what I’ve had to do. If I can share what I find with others, and share what others have found and subsequently shared with me, and what specialists have found and made available through their research papers…. well, between all of us we have the best chance of pinning down key ideas, discovering links, piecing together new concepts which can then be scientifically tested.

Advocacy online

The only drawback, of course, is that I have CRPS!

Which means that I’m very limited in what I can do each day and for how long at a time, both physically and mentally. So progress and learning is naturally in fits and starts. But slow progress is better than none, and between us all we’ve made lots of progress, xx

Margaret Mead - small group of peeps can change the world

x

Photo Challenge for CRPS Awareness, Day 10

A Day In My Life Photo Challenge for 30 Days Of RSD/CRPS Awareness, June 2013

Day 10 – A picture of your something you’re afraid of

Well, initially Magic Dude took a piccy of a spider for me! *shudder* But this is a photo’ challenge for CRPS awareness, so I feel I would be missing the opportunity to share some insight on living with CRPS if I went down the spider route. (Plus, I’d keep seeing the spider picture as I flick through blog stuff and that’s not something I relish!)

As a patient with multiple chronic conditions with a large dash of progressiveness, fear is something I am used to. I don’t want to be afraid of what the future may hold, or other things that may ‘go wrong’ with us. Let’s face it – that would be a waste of my time as who knows what the future holds? And even if we could say for sure, dwelling on it means life passes us by and I’d rather live my life thank-you! 😀

So… let’s look at the immediate issue – what if an unplanned for event means that I end up in hospital? Most of us humans do at some point, after all!

If I do, the information the relevant doctors and nurses will require is quite simply only going to come from me. The likelihood of them having a clue about CRPS in it’s basic sense, let alone in it’s complex multiple system reality, is about as likely as every other doctor and nurse I’ve ever met….. either none at all or a wonky out-of-date version.

So…. what can I do about it? Carry information?

Sure, but carrying research papers with ‘read in an emergency’ written at the top of them is not really going to help matters if things have to be dealt with in a hurry. Medics have standard ways of dealing with specific situations and wherever I don’t fit into that I need to be able to highlight quickly and simply so that they can quickly and simply work around the issues.

I have a wallet card. Originally I printed off the RSDSA card (see my Useful Links page) but my condition developments mean that a pain-only information card is just not appropriate for me any more. So I made my own, printed it off and covered it in sticky-backed plastic to keep it legible in my wallet.

Every now and again I have to change or add bits. New health information or medications need noting. Loss of family ties (which is horrifically common for patients with chronic, complex and little understood conditions such as CRPS) means having to update the emergency contact if that changes, too.

There was some discussion in one of the CRPS groups the other day, about being prepared when we go out. A wallet card was something that a few of us mentioned and those that don’t currently have one were asking what we have noted down on our cards.

So, here’s my new wallet card I’ve been creating today. It helps to reduce the fear of inadvertent mistreatment by medical staff and thus reassure me that if they have the facts upfront they may be able to at least help avoid creating any new problems for me!

Elle and the Auto Gnome, Wallet card

Which, in close-up, looks like this….

Front of wallet card

Front of wallet card

Back of wallet card

Back of wallet card

If there’s anything you think might need adding to my wallet card, or aspects that might be handy to add to a general wallet card, or indeed any comments on this that could help others, then please do comment below as I am sure that your input will help fellow patients piece together what we each need to include on our own wallet cards if we’re going to create one, x

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Additional note added 11th June 2013:

My reply to a question about the non-adrenaline anaesthetic: Yep it’s CRPS related.. because our autonomic nervous systems are disrupted our ‘flight or flight’ mechanism kicks in really quickly over very little,.. we want to do everything we can to keep our nervous systems calm so that we can get through surgery / dental treatment / anything invasive with as little raised response as possible. Adrenaline is part of the fight or flight response, so we really don’t want even more of it in our body than is already being released under those circumstances. So using non-adrenaline (non-epinephrine) anaesthetic means that we reduce the likelihood of the body over-reacting which means less chance of spread or new issues in the area and less chance of a new faulty autonomic issue precipitated from the over-reaction, xxx

Patient contact and self-advocacy on Social Networks

When it comes to social networks, Facebook stands out for me for two reasons:

Firstly, I am chronically ill and don’t get out much. I don’t get to see my friends unless they come to me, I don’t have colleagues to say ‘hi’ to each day, I don’t even have a pet to hang out with. I do, of course, have a Magic Dude! (that’s my boyfriend, for those of you who don’t already know 😉 ). His presence gives a whole new dimension to my life, for which I am most appreciative (a massive understatement, of course)! I also have a brilliant and supportive Local Friend, who pops round for tea and a natter every now and again. (We really must drag him out somewhere for his belated birthday celebrations)! But on the whole I just don’t get to see most of the people who I care about so much. And unless I’ve got an appointment with a medical practitioner who I haven’t met before, I tend not to get to meet new people either. So Facebook as a ‘social’ network is all the more meaningfully named for someone like me who just doesn’t get to socialise in the ‘real’ world any more. Facebook is my lifeline and my laptop is my window on the world.

Secondly, Facebook has a more direct effect on my condition, knowledge and treatment….

My condition is so complex and multidisciplinary that many medical practitioners do not know anything about it. Those who do know of it, tend to know it from the angle of their own discipline and thus do not have the broader multi-systemic picture. I therefore have had to become my own expert. I have had to acquire multidisciplinary information on my condition to be able to share it with practitioners to enable a clearer overall picture, better understanding of what is going on in my body and a better platform of knowledge from which to discuss symptoms and possible routes of assessment and/or treatment.

This would be a darn sight easier if I wasn’t a patient alone, searching the internet, only to find that information on CRPS is mostly limited to the view that it is a chronic pain condition to be treated as other chronic pain conditions. When we are new patients with no doctor to ask questions of, many of us turn to the internet, (a paper is being written on this, I’ll let you know when it becomes available). The trouble with this approach is that health information on the Internet varies in quality, (Morahan-Martin, 2004). As research moves forward the understanding of this complex condition changes and grows. There are old views of CRPS which are now obsolete, but they can still be found on the Internet as if they are current – there is nothing to tell us otherwise. A good example of this is the renowned ‘stages’ of RSD / CRPS which were discarded back in 2004 (see this page for more info) but can still be found all over the internet as if they are still thought to be relevant. No wonder so many of us learned to distrust information on our condition on the internet and instead turned to research journals to be sure that what we find is actually current.

This is where Facebook comes into its own for us patients. So many of us are already on the social network that it is very easy for us to run a quick search for one of many CRPS support groups on there. Anecdotal evidence suggests that CRPS support websites outside of the social network have become far less used as Facebook use has become more prolific. Nowadays this is where many of us patients finally get to meet each other. Even if there were more of us within visiting distance we would still find it easier to meet online as there are many days where even getting to the bathroom is outside our visiting distance! So modern social technology has brought us together.

On Facebook we can meet. We can feel reassured we are not alone, experience empathy from others about our condition experiences, we can share information, including research papers to show our doctors, and much more. Through discussing our thoughts, ideas and understandings of our condition online with fellow patients, who also have gathered a large amount of knowledge on the subject, we can refine our understanding, our ways of working, and find oodles of encouragement to keep on going. Whether it’s to get through physio sessions, benefits assessments, relationship hiccups stemming from condition complexities, or just simply to get through the day, the key is that we are not alone, that there are others with knowledge and experience who we can ask questions or bounce ideas off. There are fellow patients who ‘get it’ and they are just a few clicks of a button away. It’s a resource that I could never put a value on, it is truly priceless.

The added bonus is that I have met some truly wonderful people online. I have made friends – really good friends. We may be separated by time zones, but if you look at it from another point of view.. we are not restricted by time zones – we can meet so many people from all around the globe, so statistically speaking it is perhaps not that surprising that contact with so many people reveals some souls who fit beautifully with our own and who become truly dear to us in ways we never would have expected. Facebook has expanded my friendship group, who knew? 😀

I’m not on Twitter, maybe one day I’ll get round to it. I don’t have a mobile phone that connects to the internet. I do now have a Pinterest account, but the function of a picture sharing site is different to Facebook. Through the Book of Faces I have found long-lost friends, I have more regular contact with friends who I had not lost but who are geographically far away (which is anyone further away from me than my bathroom 😉  ), I have gained and clarified knowledge about my condition, shared information with fellow patients, I even have my own blog page on Facebook. So from a patient perspective there is no question for me which is my favourite social network, because only one has enabled me to come together with fellow patients with such an astoundingly positive way.

Much as I hate to love a big corporation on sheer principle, this particular one has truly changed my life, x

Fbk page

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P.S. If you are on Facebook… there is a superb research page specifically relating to CRPS called “RSD/CRPS Research and Developements” (recently a finalist in WEGO’s Health Activist Awards). The page is run by knowledgeable admin’s who are a mixture of expert patients, experts in the field and a fab combination of expert patient with medical training. Research is posted regularly, and it’s a great place to ask questions of a more medically focused nature. (If you want to come back and find it later, it is also listed on my ‘Useful Links‘ page).

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The reference mentioned in the text was:
Morahan-Martin, J.M. (2004) in ‘How internet users find, evaluate, and use online health information: A cross-cultural review’, CyberPsychology & Behaviour, Vol. 7, Issue 5, 497-510

“Useful Links” page for fellow patients

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For extra info’ and resources to help us improve our self-advocacy I have a Useful Links page. It includes links for research papers to show doctors, information to share with family and friends, organisations to contact for more information, wallet cards, autonomic physicians list, and more.

I will continue to add to this page over time. If there is anything that you would like to see added or any suggestions for links that could be helpful to other patients then let me know as I want this page to grow so that it can be as useful as possible.

Much love to you all from me,

x

Useful Links page