Hypermobility specialist appointment

One of the outcomes from my neuro-vascular/autonomic consultant appointment back in April was that the consultant referred me over to one of the top two hypermobility spec’s in the UK. They are to be found at the University College London Hospital (UCL) in Euston Road, London, UK. My referral came through very quickly and I was offered an appointment this September which actually came around far quicker than I thought it would. (I must be getting older if time is passing that quickly, either that or I am having a lot of fun 😉 ).

That hypermobility appointment was on Tuesday of this week.

I had been sent some forms to fill out in advance….

UCL q', circle symptoms

I circled 30 out of 48, and wrote a note against a further two. Most of my friends with autonomic dysfunction said they would have circled a similar amount of symptoms.

There was also this set of questions…

UCL q', delete as appropriateI only answered ‘yes’ to 4 of these. Although I can do ludicrous stretches with my legs, can bend over to put my palms on the floor without bending my knees and have sublaxation of my shoulders and kneecaps, I do not have any ‘double jointedness’. Most of my hypermobile friends answered ‘yes’ to more of these than I did.

So that was the preliminaries. Now for the appointment itself…

The appointment was for 9.30am. In London. I live on the south coast. Eek! So the alarm went off at 5am… Magic Dude and I saw the sunrise on the way..

Sunrise on the way to UCL

Once parked up and braced for the usual extortionate parking fees we headed off to UCL. After nearly passing out in the bathroom I sat in the high ceilinged entrance hall and found that I had a tall wall of modern art in front of me to look at while I waited for the world to settle back into place…

UCL wall art

As we were fortunate enough to not get to caught up in too much rush-hour traffic we headed straight to the canteen for a coffee for him and a cuppa for me. As a long-time Tea Fiend I was a little disappointed with the size of my teacup! 😉

UCL coffee and tea

As with the neuro appointment, the appointment time given in the letter was not actually the time I would be seeing the consultant as they tend to take some tests beforehand. Here I was weighed, my height was measured and I was asked to head off to the loos to produce a urine sample for testing. There was nothing untoward in the urine sample but then again they didn’t forewarn me to hold it in for a decent first-wee-of-the-day sample so they didn’t really have much to work with! ;-P

Then the next stage was to see the consultant.

Consultant appointments for those of us with multiple aspects to our conditions basically means discussing only the aspects which fall into their specialist area. I had seen the neuro consultant, had the autonomic tests related to that and now I was with a rheumatology/hypermobility expert to discuss only musculo-skeletal issues. It can be pretty frustrating having to work in this way when we are used to the fact that everything is interrelated, but it’s just the way it is, they cannot make guesses outside of their area of expertise. They can, however, refer us on if need be.

So… I saw a super professional expert who began by finding out parts of my medical history that related to the injury that caused my CRPS and how the disease developed and spread through my body. A ‘what happened when’ question and answer session to help them build up a picture. As hypermobility can also cause issues with the autonomic nervous system (ANS) I was hoping that she could have some insights on the autonomic hassles I’m currently experiencing, but she was focusing on musculo-skeletal issues only so that is being dealt with separately (and I will write a separate post about that side of things).

I was twisted round, bent over, asked to walk up and down the room, had my skin pulled and all sorts! But the consultant was incredibly gentle and careful. I experienced no exacerbated pain from her assessment.

The outcome was that I have localised hypermobility in my trunk. It’s possible that it is so localised partly because I have worked so hard at the physio’ generally but have lost some core strength owing to near-fainting (as it has prevented me from doing any abs-strengthening exercises for some time). As usual I was told that I was doing all the right things and that there was not much more that could be done because I’ve covered it all so well.

The suggestions that will be in the letter that gets sent to my doctor will be:

– a very small dose of amitriptaline a couple of hours before bed. The reason for this is to help me to get better quality of sleep which should impact positively on pain levels etc, and the reason the dose has to be so small is that it interacts badly with SSRIs (which I am currently taking to help stabilise my ANS). I will, of course, do some research on this before I have an appointment with my doctor to discuss it.

– aqua-aerobics. The reason being that the Tai Chi is fab’ physio’, but that the non-weight bearing of being in the water could help other aspects as well. (The original suggestion was swimming, but I can only thrash and sink so the aerobics enables my feet to stay on the ground! 😉 ) The simple problems here will be cost in finances and managing to get out of the house for more of my physio’s, plus cold hurts my body and swimming pools tend not to be very warm. Could be tricky, I’m gonna put this one lower down the list of priorities and work down the list towards it.

– that I am referred to a TMJ (temporomandibular joint disorder) specialist regarding my jaw problems (which are currently being exacerbated by my meds and this is part of what I will be writing about in another post very soon).

In addition to these suggestions I was sent for a blood test and an x-ray to give her more information on my health status.

The x-ray was specifically for the consultant to see if I have shallow hip joints (which I’ve been told before that I have, and it also runs in the family).

The bloods will cover a lot of angles, including B12 and vitamin D, and is even checking for low levels in certain things owing to me being a veggie. Pretty thorough, eh?

The overall experience was one of efficiency and care. Who could ask for more, eh? I’ve had some pretty awful experiences with hospitals over the years but this one had systems in place to cover everything that I needed that day. I commented to the radiologist about how efficient everyone had been and she chuckled saying “Really? You should have been here yesterday!”. Sounds like I was lucky enough to be there on a quiet day! 😀

UCL day, tea after blood test

Mulling the appointment over tea afterwards, Magic Dude said that the appointment wasn’t what he expected. He had been expecting some sort of advice or treatment that could help with my day-to-day experiences and pain levels. He was not prepared for a patient in need of help getting the ‘you’re doing great’ response.

I, on the other hand, have a habit of hoping for the best and preparing for the worst! My hopes for consultant appointment outcomes are generally to get more info’ and understanding on what and why. I’m basically looking for clarification. After all, it’s me at the centre of my healthcare – I’m the only one doing the multi-specialist thing in the middle. So it’s important that I learn more about what’s happening in my body to be able to explain it to other medical practitioners and piece it together with my existing understanding.

Essentially I’m looking for more pieces of the puzzle that will help reveal more of the picture. I’m used to dealing with surprised consultants trying to find out how on earth I know so much and I’m used to being told that I’m doing pretty much everything I can already. But I’m in this for the long-term haul, every snippet of info’ and advice counts, this is how I help myself when all the usual treatment suggestions are moot.

UCL hospital

Bye bye UCL hospital

If anything progresses from this appointment I will let you know. I know that several readers are heading towards hypermobility assessments as well so good luck on your journey, I hope that this helps prepare you a little.

x

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)