Seek out the best Sjögren’s Specialist…your worth it!

I never realised until a friend informed me that even though i’m NHS I am entitled to see a specialist of my choice (NHS) anywhere in the country, it doesn’t have to be in your catchment area. Invaluable words!

For me knowledge is power but at the moment I have not yet spoken to a professional who knows more than I have already googled.

I phoned the BSSA helpline, where a lovely lady told me a bit about herself and also told me where the  top Sjögrens specialist was, although her NHS books were closed at the moment and I could only see her privately. I decided I was worth it! My Father kindly offered to foot the bill

Wow what a different experience this turned out to be, this is the first time iv’e gone private. I arrive at a very plush reception where I am welcomed by a lovely nurse who offered me coffee. And my goodness only two other people in the waiting room. Please don’t misunderstand, I think the national health service is amazing and has served me very well.

I have to be honest although I had been told I had Sjögren’s I still didn’t quite believe it. However the specialist confirmed that without a doubt it was and explained how the blood tests confirmed it. She then proceeded to examen me, checking my eyes mouth and joints. She told me I was very well put together which should stand me in good stead. (Doesn’t feel like it at the moment). Also being a personal trainer should be a bonus as I understand the body well and know how to exercise.

She spent about 40 minutes with me, answering my questions. She suggested I should go on Hyroxychloroquine. However there is no guarantee that it would help and could take up to six months to kick in, also potential for side effects which would mean coming off it.

The specialist also put me on Hylo-Forte for my dry eyes and Pilocarpine to try and stimulate my salivary glands.

I left feeling I had been equipped with the right information to deal with it and quite determined that I wasn’t going to let it effect me however this proved difficult as I didn’t realise how relentless this condition can be and how bad it would get.

Seeking out the right Specialist was the best thing I did, I now see her through the NHS route, where I have to say although the wait is longer in the waiting room I never feel rushed when I get into see her

“You’ve got Sjögren’s…google it”

At last an appointment with a Rheumatologist through the NHS. I have to admit I was a little scared, I knew something was wrong. The most obvious was Arthritis but that didn’t quite add up. I had come prepared I wrote a long list of everything that was wrong. On going in to my appointment I was met by a middle aged male specialist, I instantly found his manner a little abrupt. I asked if I could go through my list, as I was doing so he was tapping away on his computer putting in my symptoms. He then examined me quickly and as I already knew although I was in pain there was nothing mechanically wrong with my joints. He asked how old I was and when I said 48 his response was I think you have degeneration in your spine. I’m sure there is an element of that at my age but how does that explain the pain in the rest of my body. He then got me to stand up and then he very firmly bent me from side to side at which point I yelped, this somehow confirmed his theory on my back.

He then proceeded to look at his computer going through a list of possibilities “No its not that one, could be that” He then announced “you’ve got Sjögrens.” Id never heard of it before so I asked him what it was. He said it was an autoimmune disorder but not to worry “it’s not serious or life threatening. There is medication you can go on Hydroxychloroquine but I recommend you don’t as you will probably have more problems with the side effects.” I was completely baffled! So asked if he could explain further he tapped his watch (referring my time was up) and said “Google it!”

I did! I was horrified and felt my world was crashing down. How dare he tell me this is not serious and life changing.

I’m sure my specialist is very good and was having an off day but as I said to my Dr. “There are some jobs you are not allowed to have a bad day.” It will be no surprise to you but I refused to ever see him again.

Back to the duty Doctor for an explanation of the condition, she had clearly never heard of it before. So I came back and saw her the following day after she could discuss with another Dr. She then proceeded to tell me that my joint and muscle pain was nothing to do with Sjörgrens. Yes it is!! I will not bore you to what happened over the following week, I basically had to keep going until I got answers.

At last Dr. Wonderful, he listened whilst I cried through explaining the last few months and my frustration of feeling nobody was listening…He listened, even apologised for the fact I felt I hadn’t been heard.

He read through my notes and explained that I had Primary Sjögren’s. You can also have secondary Sjögren’s which develops of the back of other autoimmune disorders such as Lupus and Arthritis. I was a little relieved it was Primary.

I then went to see another Specialist privately….

Wasp sting and autoimmune system

Ouch that hurt, felt like i’d been bitten on my thigh, I initially thought it was a spider as there has been a lot in the press latley but it was a docile wasp. It’s hard to believe it’s nearly a year to the day that this event sent me into what I now know to be a flare up

Iv’e never been stung by a wasp so didn’t really know what to expect, I was really surprised by how much it hurt. Within about an hour it was the size of a 50p, I assumed this was normal. On waking in the morning my leg was on fire and very red, the sting seemed to be spreading, about 5cm. I also felt a little unwell. I went to work as usual but by the end of the day I was quite concerned, so I thought I should get it checked out at casualty. I think the nurse thought I was wasting her time, she pointed out it was nothing to worry about but if it starts tracking up my leg I should go back. I went home and put pen marks on my leg to see how much bigger it got. That night was agony! My thigh was doubling in size and the heat coming off it was intense, so I spent the night icing it. Although I couldn’t get my trousers on in the morning due to the size of my leg I just assumed I needed to work through it (I didn’t want to be scorned by the nurse again) and I had seen tracking before so I knew it wasn’t that.

Apart from the swelling I felt really tired and my sinuses started to really play up. Sometimes I realise I am my own worst enemy, so I suffered for a few more days until the swelling on my legs reached 10cm in diameter.

The Doctor was horrified and said she has never seen anything like it! She gave me steroid cream and tablets and told me I should have gone back to casualty. It took a few weeks but the sting eventually calmed down

However I felt shocking my sinuses turned into severe sinusitis, so was put on a course of antibiotics. I also was very tired.

This is also when I started to have pain in my right arm

Little did I know at the time that the sting would be the catalyst for my Sjorgren’s “flare up” which accelarates  the condition.

I have since spoken to the specialist about this and she wasn’t surprised at my reaction. Unfortunately what happens in Sjörgren’s when you have an infection is your immune system kicks in but unfortunately attacks you rather than helps you.

Since then wasps seem to love me, to the point it has been commented on. I have never been nervous of wasps but I have to say my heart rate now rises when I see one. And with good reason, later in the year I was stung  again on the lip (I was lucky not to swallow it). Apart from the huge entertainment for my children and there friends as my lip proceeded to look as if i’d over done the botox, I was concerned however took an antihistamine and steroids immediately which quickly sorted it out, sinus problem started again

The link below explains the autoimmune system


And so it begins, rewind to October 2014

I started to have flank pain in my back, aware of my kidney function not being great I went for bloods. I had been told three years earlier that there was a problem with the function of one of my kidneys, nothing to worry about at this point but needed to be monitored. Also could not find the cause of it. Pain getting much worse couldn’t sleep at night every time I turned over I yelped.Results showed kidney function low. Dr. thinks it’s not connected but postural but still sent me for kidney scan, the scan was clear.

As a personal trainer I know my body very well so I knew it wasn’t postural and my back was strong, however decided to give physiotherapy a go (process of elimination). My amazing physiotherapist is also my personal trainer and knew my bodies ability well ,so on assessing me over a few weeks agreed that something wasn’t right and sent me back to the Doctors to ask for a referral. I went back to several different Doctors’s in the surgery, a tale i’m sure we are all familiar with. I had a great Dr but I think i’d just been with her for to long and maybe it had become a bit familiar, over the years i’d have pockets of time of going regularly with my various ailments, it all makes sense now! Raynaud’s, sinuses, chronic rhinitis,etc. I have to say over the last 4 years iv’e had a sense of something was wrong. I then started to wake up with pain in my arm, knee and sometimes my whole body. I felt my body was hot.

Barely sleeping at all now,feeling a little stir crazy in the mornings as I still need to go to work. As if all that wasn’t enough…

I then get stung by a wasp on my thigh….My immune system loved that!

Life changed…rewind to September 2014

It’s been a stressful year, personally and financially but iv’e come out the other side. I’ve got my head around my children having left home…this is my time, for the first time in my life time for me, how exciting! What do I want to do, what do I want to eat, when do I want to do it?. Don’t get me wrong I miss my children not being home but this could be quite liberating. On reaching my 48th Birthday mid September I was feeling positive about my future in work and in meeting my Mr Right. Feeling fitter and healthier than i’d been since my 20’s, dare I say feeling confident  about myself and enjoying discovering who I am.

By the end of September noticed my training was becoming tougher, I was getting out of breath quickly, I also started to over heat to the point I thought my head would explode but noticed I had stopped sweating which is not typical of me. I also struggled to get my heart rate down after a session also my strength was waining.

Just not feeling quite right….Life changed!

Through my dry eyes,to sad?

A client of mine, who is now a good friend a very motivating and inspiring women suggested to me one day whilst I was putting her through her paces, that maybe I should write a blog, she touched a nerve it was something that had been on my mind for a few months, this was the push I needed.
The title “Through my dry eyes ” came to me very quickly. So I excitedly texted it to her to get what I thought would be a positive response. “It’s to sad!” she said. I pondered for a while and then texted back “Yes it is” But so is Sjörgren’s!
Please don’t misunderstand I don’t intend for this blog to be sad, however we all know it’s a journey, so as I rewind my tale of my journey it may seem that way initially…