Another Shoulder Procedure

Back in March I had the first procedure on my shoulder you can read about it here, 
https://livingwithedsuk.wordpress.com/2016/03/28/stabbed-in-the-shoulder/
I wouldn’t say it was a huge success. It didn’t give me an additional movement but maybe knocked the pain down the scale a notch. With that in mind when I went back to see Mr Majeed he couldn’t work out why I had no mobility, he examined me again and really couldn’t get what was once a very hypermobile shoulder to shift. He moved my good arm and the range of movement is quite scary, I can get my arm so far up my back I don’t need anyone to zip up a dress, or put sun cream on. So what had gone wrong? He looked at the MRI, X-rays and drew a blank, maybe there was something inside the joint that just couldn’t be seen on imaging.
My options were to go and see the best physio at the Stanmore to see if he could release the joint, then if that didn’t do the trick he would preauthorise a further steroidal injection into the shoulder and see if that did anything. I was then to return to him a month later to discuss the invasive options.
On Tuesday this week we headed back to the Stanmore for another fluro guided injection under X-ray. It was a different Doctor this time and they had a new machine (see the picture below) in the department, so walking into the room was a bit daunting. Once again they were very kind and supportive, they let Andrew stay in the room. I could hear his voice throughout, this settled me, I didn’t overly panic but I was terrified, I don’t like needles. After the procedure was over I had a bit of a reaction, they think it was an adrenaline dump as I couldn’t stop shaking but I just wanted to head home. I assured them that if I felt too poorly I would call my GP and they didn’t need to worry. I would give the RNOH 10/10 for their compassion and support.  So thank you for being so kind and understanding, my local hospital are just by the book rude and unhelpful, you went out of your way to make sure I wasn’t scared any further.
In the meantime as you know I had seen my pain specialist who had also given me some treatment, which really had done nothing to help, you can read about that here
https://livingwithedsuk.wordpress.com/2016/08/23/my-hospital-short-stay/
So after lots of needles into my shoulder, it’s safe to say I’m done with having it fiddled about with, I am fully aware that surgery is now the only option, that makes me sad because the risk is it’s going to go from stiff to overly hypermobile again and popping my shoulders out on a regular basis isn’t fun. Neither is having painful, restricted use of one arm, so whilst it’s a tough choice, I have to do it because I can’t use my wheelchair with one arm and I need to have my mobility.

Lung Physio – My Good News

So as you knew I had been referred up to Kings College hospital by Dr Gall, I had completed the Lung Function tests and it was decided then that I would need some kind of physiotherapy.  I had been going along on a few occasions, notably on the first Sarah my nurse/physio had noticed just how flexible my rib cage was.  She explained that a lot of my pain could be from costochondritis and to learn to manage the pain with shallower breathing without hyperventilating.  Over the time I was given homework exercises to improve the amount of air I was able to take into my lungs, this would in turn hopefully improve my PoTs, or maybe the number of “turns” I was having.

One of the first exercises I found was really easy, in fact it was quite relaxing, and I used it at bed time, however due to my shoulder injury we had to adapt how I could do it.  Once we mastered how I would be able to this exercise she found the amount of air I was taking in was improving, the only concern was the flexing in my ribcage.  Can’t win everything I suppose, PoTs improvement , EDS loses.

The second exercise involved breath holding, now I couldn’t get to grips with this, it was similar to one during the lung function test and even though she gave me a sheet to take home, I just kept getting so confused and flustered, that my breathing ended up so out of synch i would end up struggling for breath, so she told me to give up with that one.

When I went back again, she was happy enough with the original exercise, that she felt this one alone would improve my lung function BUT i needed to keep practicing until I next saw Dr Gall.  With that agreed she decided to discharge me from the physio team but said that if I felt I was going downhill again I could call for an appointment.  So after a matter of three months under their care I had already succeeded in a positive outcome, i was really pleased with myself and knew that I just needed to keep up the hard work.

Who knew breathing was so difficult and complex, I will never take it for granted again!

Wish List

Now I need to use my wheelchair again due to the pain levels.  I have seen two pieces of kit that I would love to get, you could call them accessories but they aren’t. One of them would be essential for me to use my chair especially if I wanted to go out solo because with my shoulder damage I am no longer able to self propel.  Now this leaves me with a dilemma.  Do I get rid of my lovely wheelchair and get a power chair, scooter or something else motorised or do I buy this clever piece of kit.

This is a Smart Drive


Ive checked the price here in the UK and it retails at £4300 excluding VAT, yes now you’ve picked yourself up off the floor, thats right !!  Just under four and a half thousand pounds BUT a new decent powerchair would cost five thousand, so why not keep my chair and add this amazing piece of equipment.  It means I can use my good arm and with the wonders of bluetooth slows down and adapts the speed, clever huh??

I have no idea how I am going to be able to get one of these, I see people gofundme, for all sorts of things and Im just wondering, what it, why shouldn’t I, it is for an essential piece of kit and it is not like I have not asked before is it?

The second piece of kit I would love is a Freewheel,  it retails for £375


This snaps to the front of my wheelchair, it lifts off the two small front wheels, so you have the one big front wheel on the ground.  Now making your wheelchair a trike.  I have two friends who have these and they get on great with them.  I have told Andrew I don’t want anything for Christmas, if anyone wants to buy me anything please don’t just a little money in a card to go towards my Freewheel would be great, that is my wish this year !!

So those are the two adaptations to my Ti Lite that I would love to do, I may not love using my chair all the time but I certainly will find ways to make using her easier, by the way her name is Tilly, she is red and goes like a rocket.

Summer to Autumn Transition 

I’ve had such a good summer, as far as pain wise I’ve managed so well.  I had got on top of my pain relief, in fact by the time I last saw Dr Mason when he left I was feeling really positive.  I was coping on paracetamol, the meloxicam and after seeing my new pain guy I had decided to be brave and reduce my patches and try a new pill.  All was good, I had been out of my wheelchair too, yes I was using my crutches, or Andrew to help me but to be honest I hadn’t needed it for anything.  

The good heat had got into my joints and it felt great.  Now the down side of good summers is air pollution, so that means my PoTs was a bit all over the place but I was managing it quite well, when I noticed my symptoms I took a seat, trying not to create too much attention.  Being sick is enough without, face palming the floor, so I have learnt the bum cleanch to start the blood pumping back upwards, or leaning over my trolley if I was shopping in Tesco, I’m sure it’s the lights in there that don’t help !!  Anyway it’s all about the signs and learning to manage because whilst the pain is good, the less time I can spend in my chair the better, all too soon I knew I would be dusting it off and getting it ready.  I just didn’t realise how soon

I think it was the first dew point at sunrise and my pain started rising, feet throbbing I struggled out of bed, next day it was my knees and it just continued up into my hips and back.  I finally gave in and went to see the doctor, obviously Dr M had gone and I needed to choose who to see, so I picked one of the senior partners.  When we met he was fab, his concern is the level of deterioration, but he refuses to leave me in pain, he is happy for me to increase my patches if need be as I feel they are the only thing that works.  We agreed to try a newer tablet but to be careful as the last one had caused horrible side effects, I was to keep a diary.  He gave me everything I requested and asked me to return in a couple of weeks with feedback, I left feeling positive, he had listened, given me a good solution to my issues including my gastrointestinal problems and then offered me ongoing support, really important with chronically ill patients, too often I feel I am given a piece of paper and sent on my way.  He really gave me hope 

So yes I might need my wheelchair again, my flare up has been over a week now, I’m exhausted as I’m not sleeping well, the new tablets are awful, they make my insomnia worse, upset my stomach and hurt my muscles, I have a feeling those are for the bin too but I need to ask the doc first, on top of that my headache is awful, I’ve developed this horrible pain where I can barely hold my head up, it’s best when sitting with my head supported on pillows, or a headrest, otherwise it just makes my headache intolerable.  My Botox isn’t until December due to Dr W’s heavy work schedule so I think I’m going to need lots of migraine meds.

I think autumn and winter are going to be really tricky, roll on next summer, in the meantime I might hibernate.  Who wants to buy me one is these??

Good News for my GP, bad news for me

I went along to see Dr Mason a few weeks ago, just to follow up after a hospital appointment.  He is always so thorough going through each letter, ensuring the consultants wishes are followed, medication prescribed and any further referrals or tests carried our immediately.

We had done everything we needed to and I was armed with my pieces of paper, prescriptions and just before he said his goodbyes, he explained he had something to tell me.  It was very serious the manner and I wasn’t sure what I was about to hear.  He broke the news he was leaving the surgery, it wasn’t common knowledge at that point, but he was advising his personal patients.

We chatted about why he was going, after all being a partner in a large practice like Burnham Health Centre is a good thing and he admitted he was happy at the surgery it was purely the commuting that was killing him, so he had found work at the Surgery which appears on the Channel Five tv series.  At this point I totally respected his descision, when it comes to quality of life, that is far more important than any job and to be fair being a GP is just a job.  

I thanked him for making such a huge difference to my life, he had taken me through my downturn, my diagnosis and my real lowest points, to now my fight back, all of that was down to his care and help, so had it not been for him I wouldn’t be as well as I think I am right now.  My weight is stable, my pain is managed, my specialists are all as requested and despite flare ups there is nothing that can be done for my condition, he has made sure I have the names of which Drs I am to see, and who I am to avoid.  With a tear in my eye I said goodbye unsure if we would see or speak to one another again.

So Dr Mason thank you for making a difference to my life, you will he missed greatly, the new GP has some very big shoes to fill x

My Hospital Short Stay

Normally when I’ve had a blogging break I catch up with the oldest posts and chronologically in date order write up what has been going on, but I’m so far behind I just thing this time I will update you with what is going on now and then as and when I can, infill you with stuff from recent weeks.

So two weeks ago I met up with a new Pain Management Consultant, to be honest I was sick to death of traipsing into London, the east at that, for a ten minute appointment where I would be fobbed off with excuses of “until your shoulder is fixed there is nothing we can do”. So I saw a couple of local Consultants, my GP and asked for someone nearby.  A couple of days after my birthday along I went to the hospital in Windsor and met with Mr Desai.  Firstly this was one of the only clinics I’ve ever been to that Andrew had been unable to attend, his workload was horrible and secondly it was running completely on time, if not a little early.  I hadn’t even finished my pain questionnaire and I was being moved to outside his room, the nurse was hovering to take it from me and as soon as I had finished I was in with him.  

He was very warm and kind to me, I was put at ease instantly, he felt that I was the expert in the room for my condition and he would listen to me for pointers, we discussed my pain regime and he disagreed with everything I was on, he made recommendations and a letter would be sent to my GP to start the transition.  Then he asked about my shoulder as this was obviously the standout issue and not specific to EDS, I explained how it had happened, what was being done, he felt he could give me further pain relief by offering me a Pulsed Radiofrequency (denervation) into my scapular, at the same time he would inject steroids and anaesthetic to settle it.  I agreed as horrible as it sounded, I just needed relief from the pain.  Consent form signed, and with the agreement of some CBT to maybe help with any psychological issues. I was soon on my way home, I felt the meeting had been successful, I hadn’t been back an hour when my phone rang and I was offered an appointment for ten days later, of course I accepted, a letter would be arriving with instructions.

My letter dropped through the door and I was informed that I needed to attend the day surgery unit by lunchtime on Monday.  Of course Sunday night I barely slept, I had flared up that weekend so was feeling really rough, typical EDS.  We headed off to the hospital and Andrew chatted to me in the car trying to keep my mind off whatever was about to happen, we were both so preoccupied we took the wrong direction on the motorway, no idea where we thought we were going.  So we ended up going the scenic route to Ascot, mind you we still got there early.  A lovely nurse greeted us on arrival and took me to one side to complete my paperwork, I was astounded when she seemed to know about EDS and PoTs.  She could see I was stressed and by blood pressure proved it, I have low BP, it was too high on this occasion so, as soon as she could she sent me back to sit with Andrew. I was fifth on the list so it was going to be a couple of hours wait, we sat chatting, playing on our phones and arranging flights for our daughter who is heading to Belfast to see her boyfriend ❤️ finally I had to get changed but was still allowed back with Andrew, she didn’t want to cause me any anxiety.  Then came the call it was my turn, by now my knees wanted to give way but I just got my hug and kiss and off I went.  

I was taken to my cubicle and laid on a bed, the porter arrived and I was then wheeled to theatre.  Now this was the bit that freaked me out, normally once you are taken into a theatre you are asleep but being in that environment awake is a bit too much.  By now I could barely speak to confirm my name, it came out as a squeak.  The big burly assisting Doctor David assured me I would be ok and the kind nurse sat and held my hand but I was terrified.  They started by scanning for a good nerve, then placed a magnetic pad on my right shoulder, after lots of cleaning of the area, the local injections were put in, then the large needle was put in placed into my shoulder, yes it sodding hurt, pain, pressure, tears popped to my eyes and I stopped breathing and then I could hear someone say you need to keep breathing for the pain to stop.  Then they started the frequencies into the arm, the first set were to shallow so Dr Desai asked for them to be switched up, I said you have to be kidding me !!  So for six minutes (I know now) they left my arm twitching and dancing away, it was horrific, I found it so painful, I just wanted it to stop, I had no idea how long they were going on for at the time.  The team were chatting and joking and asking me questions and I couldn’t speak, I just said I can’t this is killing me, I can’t focus.  Dr Desai said ok we will leave you but they stayed close and the nurse never stopped holding my hand.  In the end the machine stopped pulsing, thank goodness for that, before he removed the needle he popped in the steroids, they cleaned me up and sent me back to the ward.

My lovely nurse came to check on me and I said despite it being horrific, I felt OK, I just wanted to go, could I have some water.  She offered tea and toast but not being able to tolerate wheat or dairy makes me difficult lol, so we stuck to the water.  She checked my obs and they were much better but still higher than normal, I asked her how come she knew about EDS, and I was so proud of her, she had discovered it via Instagram, being a nurse and having been to uni for all those years she was shocked she had never learnt about the condition, so she has done some reading, so she knows about rare patients like me.  I was privileged to be under her care, if only there were more like her !!

Yesterday may have been awful but thanks to one nurse, it made my whole experience a different one !!  Well done young lady, you have set a fine example

When New Meds Go Wrong

It didn’t twig that it was the tablets …. Well not straight away, now I look back and it all clicks into place they were slowly poisinging my system.

The tablets name are Metoclopramide and the dose was 10mg three time daily.  So what is Metoclopramide it is a medication used mostly for stomach and esophageal problems.  It is commonly used to treat nausea and vomiting, to help with emptying of the stomach in people with delayed stomach emptying due to either diabetes or following surgery, and to help with gastroesophageal reflux disease.   It is also used to treat migraine headaches, which could have been really helpful !! (Most of this has been taken from wiki, so as to be accurate)

Now I read the leaflet inside, why am I taking it, top risk factors, and threw it away, though nothing more about it, I hadn’t been advised to “look out” for anything weird but then some weird stuff started happening.

Within the first 24 hours what I can only describe as gurning, pulling funny faces so much so that it was giving me cramp around my cheeks and lips, it was agony  ….. I was having to contort my face the opposite direction to try and stop the pain and then puff out my cheeks to stop the cramping.  As I laid in bed I arched my neck, so much so I could hear my vertebrae cracking, it was horrific, then my ribs and back started the same, arching and cracking, clicking and moving, which I can do anyway but it was getting worse, the fidgeting and constant motion was driving me and more so Andrew nuts.

Then my sleep, it’s gone from 6 or 7 hours a night to 3 and a half hours a night … So on Fathers Day …. I was in so much pain …. I got in a bath so hot I couldn’t stand up after, but it temporarily relieved a little of the agony.  Then it came back, I chatted to Andrew after taking yet more tablets, I had doubled my pain relief over the previous week too, so unlike me.  What had changed, my diet, this law histamine diet was new but food wouldn’t cause this agony, my new tablet, so I googled the name of it, I went to side effects on Boots.md and there it was every side effect I was experiencing, back arching, Parkinson’s like issues, it’s called Dystonia, having now experienced it, it’s awful, it’s chronic, painful and the sooner it goes the better, so I removed the tablets from my medicine trays and threw them away.  I found an appointment for 8:30am with a doctor and booked it, it said I needed to see a doctor urgently, I wasn’t not going to see Coldplay (Andrew didn’t know at this point) I was just going to muddle through the day as best I could.

Monday morning I got to the GP’s and he was glad I stopped the meds, I hadn’t seen this doctor before, but he had suffered Dystonia as a child and knew how horrific it was, I explained I was struggling but with the EDS it was just an added complication, he prescribed a new tablet, see new prescription below and we would take it from there.  He admitted theses types of reactions are rare but I seem to have been one of the unlucky ones, so I need to wait a few days and let this poison get out of my system.  In the meantime, I’m still fidgety in pain and not a happy girlie 😢