What better way to start a day than with a 3 am blog post, I really do need to start tackling this sleep situation. It’s a shame I can’t work right now or I’d make a fortune on night shifts!!!!
This past week has been refreshingly and unusually quiet and steady on the appointment front however high on the symptom front. The start of the week saw us travel over to Wrightington Orthopaedic hospital to see my shoulder surgeon, well a member of his team.
I’ve been having increasing problems with my right shoulder. Any kind of movement where my arm is raised above waist height, infront of me or even doing quite simple tasks the rhomboid muscle swells so big I lose my shoulder blade to the swelling along with severe nerve pain across my upper back. The pain at times has reduced me to tears from burning/shooting nerve pain to a dull constant ache around the whole shoulder blade and upper back. Its extremely debilitating and impinging on my ability to function with the most basic of tasks. Writing this blog for instance is undertaken in 10 minute stints, using my bed table, pillows supporting my neck/shoulders, wrist splints, neck brace and KT tape around the shoulder oh and occasionally sporting my migraine cap….its quite the look, I hope to feature in Vogue very soon!!
Around 18 months ago I had an MRI arthrogram, a test to study a joint. A needle was placed in the shoulder joint, which sat idle for a while as they injected contrast guided by an x-ray. At the time I was being tested for a lidocaine (aneasethic) allergy so any numbing agent was off the table, the doctor thought I was insane going ahead without anaesthetic but to be honest although not something “enjoyable” it wasn’t truly painful more an intense pressure within the joint. Once the contrast was injected a 45 minute MRI ensued followed by a POTs faint from laying down a while and standing up too quickly. The arthrogram revealed a rotator cuff and labral tear. At this time my main shoulder Symptoms were constant pain waking me up during the night particularly around the joint itself and at the front of the shoulder aggravated by lifting my arm above my head, reaching for things, typing, holding my phone…. basically anything involving the use of my shoulder, even pain at rest, weakness and lots of lovely cracking, my shoulder sounded like a bowl of coco pops pretty much all the time.
The shoulder is quite a complex joint, it is one of the most mobile joints in the human body and is mechanically quite poorly made, whoever designed such a joint needs sacking!! The rotator cuff is a group of four muscles that come together as tendons to form a covering around the head of the humerus. Your arm is kept in your shoulder socket by the rotator cuff so they are quite an important set of muscles. The labrum is a rim of soft tissue that makes the shoulder socket more like a cup by turning it into a deeper socket that holds to fit your humerus, your rotaor cuff then connects your humerus to your scapula. *My knowledge of the shoulder joint ends here* Basically its one big happy family of muscles, ligaments, tendons and bone that work together however with me its a seemingly disjointed, malfunctioning family that no longer communicates with each other. A labral tear can make your shoulder much less stable.
Knowing I already had the above issues we trotted off to inform the surgeon of a relatively new issue that has come about in the last 3 months with my shoulder blade. I discussed my symptoms with the surgeon and then followed an examination. After the examination he asked me to lean against the wall with my arms in front of me and push into the wall a bit like a standing press up. He then had me stand in front of him and raise my arms above my head (pain) you could hear and see the shoulder catching. He then firmly held my shoulder blades and repeated the exercise with MUCH less pain around the blade. He said that as well as the rotator cuff and labral tear I have something called scapular winging. Essentially the scapula (shoulder blade) is the largest bone of the shoulder and has the greatest number of muscles attached to it. Scapula winging can be caused by dysfunction and injury within the muscles themselves or the nerves that supply the muscles. We discussed treatment options as he could tell I am finding the pain unbearable and it is hugely impinging the most basic of tasks on a daily basis. We discussed surgery as an option however the success rate of shoulder surgery on patients with EDS is actually pretty poor, this isn’t the first time I had heard this and the last thing I want is to be in and out of surgeries that continue to fail. We discussed pain relief as this is a challenge for me due to my stomach so my pain is rarely under control and medicated well as it causes a cascade of other symptoms. We decided to continue with the plan of hydrotherapy and get that booked asap and try and work on building and balancing the muscles to figure out if this is caused by a muscle imbalance/weakness/tear or if the nerve supplying the muscle is compressed which interestingly stems from the scalene muscles in the neck which are always swollen with me. A follow up appointment for 3 months is planned of which the situation will be assessed again.
I left a little deflated and admittedly had a good cry when I got home. The last few years so many aspects of my health are declining with new issues arising that we are unable to get on top of, as another issue or symptom is preventing me. My head pain reduces my ability to function enormously and undertake physiotherapy so we are now also in a deconditioning cycle to add insult to injury. Its very overwhelming when so many aspects of your health are going wrong, you have to try and get some semblance of order of importance as everything simply cannot be tackled at once. When I sit and reflect on the inordinate amount of difficulties my body is facing I feel like I am sinking at times, there is no quick fixes which brings me great frustration and despair but we must add another layer to the life jacket and stay afloat as best we can although in truth I feel like I’m clinging on for dear life to an inflatable flamingo with a puncture!!
The rest of the week was spent organising my appointments over the coming months. I have quite a schedule coming up. My appointment with the urology nurses to learn self catheterisation and self dilation arrived however had to be rearranged as it fell a few days after my iron infusion (due Friday) of which I feel terrible after and the last thing I would feel able for is a 2 hour lesson in poking various devices around!! We have booked this for July. My Physio and I kept missing each other so I’m hoping we catch each other this week to get hydrotherapy booked, this won’t be for at least a further 3 weeks due to other appointments scheduled.
I received a letter from my neurologist regarding what happened with my little ticker whilst on the propranolol. He wrote asking me to start back on the propranolol this time instead of 80 mg slow release start on 10 mg normal release x3 a day building the dose up every few weeks however before each dose increment increase get an ECG to check on the old ticker then if the same symptoms happen again he will get a 24 hour ECG arranged to monitor what my heart rate is doing on the medication. He has also booked me in for an up to date brain MRI with contrast so I am just awaiting that appointment. I was a little disheartened regarding the medication as not only do I not want a repeat performance of the 80mg saga I also don’t want to push through side effects for weeks/months to then reach the higher dosage levels which are required to medicate the problem for said saga to occur again. We can but try, perhaps gradually increasing the dosage at a steady rate will give my body ample time to adjust to it. Who knows….
This week we are off to see my lovely orthoptist, to see how I am progressing with my vision therapy. This lady would brighten up anyones day, she is such a jolly and fun lady whilst being super at her job. Friday is iron infusion day. Im a little apprehensive about this if I’m honest. Ive only had one or two before many years ago and this one is at a different hospital so I’m unsure if you are provided with a bed or if its a chair as Im still struggling to be upright for long periods and the infusion takes around 6/7 hours. I have a little anxiety about potential reactions, CosmoFer infusions can cause quite serious reactions in people however off memory its done in an extremely controlled manner with a test dose given at a slow rate then observation over an hour of your blood pressure, heart rate and any symptoms you start to have if no serious reaction has occurred they will start you on the full infusions building the speed up over the day whilst regularly checking your SATS. I didn’t use to have these anxieties about “serious reactions” until I reacted at the dentist many years ago to the anaesthetic, I could not breath, developed a swollen neck with a rash, my fingers started to turn white and an ambulance was called. Needless to say it has most definitely left a mark on me and has produced an anxiety that was never there before of “breathing difficulty” type reactions. I am much better now at managing this anxiety and rationalising the situation, not giving into it and avoiding treatments because of it, well……… perhaps the dentist a little!! That might be due to the huge bill that follows each visit!! Going off my previous infusions I have felt quite unwell during them with nausea, stomach cramps and shivering and for a few days after them with what feels like a dose of flu, headaches, fatigue, nausea and stomach cramping. This is quite common after this type of infusion though and I’m just trying to look past all that and fast forward to two weeks where hopefully I will feel an increase in my energy levels, reduction in fatigue and breathlessness which is only a POSITIVE. Sometimes we just have to push through tests and treatments for the greater good.
As I’m not feeling my best, this week I plan to rest up and reserve my limited energy for the appointments, you’d be surprised just how fatigued I get after hospital appointments. Us chronically ill folk can often miss important appointments which are designed to help us because we can be too unwell to attend, oh the irony!! Which leads me onto my next blog post I’m working on “Consistently inconsistent”……
Thank you for reading and I hope you all have a lovely and positive start to your week wherever you may be.