Sjögren’s..I don’t recognise myself anymore!

September 2014 just before my 48th Birthday, couldn’t feel fitter or healthier. How rapidly that changed.

Almost over night I started to experience joint and muscle pain, starting in my back and then gradually moving to several parts of my body and sometimes I just hurt all over.

The pain over my back would wake me up a lot during the night as I turned over I would occasionally let out a yelp with the pain. My back feels like my ribcage is in a brace which restricts my flexibility on some days, it also feels as if the cartilage is sticky. I started to take pain killers regularly as couldn’t cope with the lack of sleep. I no longer take pain killers as this is not a lifetime answer….

My right arm really hurts and feels week, to the point I can’t even hold a dogs lead or worse still hold a glass of wine! I thought it was quite odd as even if I went for a long walk my arm would start hurting. Also I was training with my Physiotherapist/personal Trainer and when he got me to jump my arm would start hurting and I would get tingling in my hands. He came to the very astute conclusion that the pain in my arm was due to my Lymph nodes not functioning well….

A few years back it was picked up that my kidney’s were not functioning as well as they should, they now realise its the Sjörgren’s…

My vision was becoming worse to the point I was beginning to question wether I should still drive, so I took myself off to get them tested. Apart from needing new glasses the optician also pointed out that my eyes were extremely dry and referred me to an eye specialist. The specialist confirmed this and also told me I also had an eyelid infection (Blepharitis). He put me on two months of antibiotics to clear this up. This proved to be a big mistake as far as my Sjörgren’s was concerned…

My biggest battle has been fatigue, it wasn’t to bad to start with but six months in and I am overwhelmed by it on some days. Unless you’ve had it it’s hard to explain. I can wake up having had a good night sleep and feel as if I haven’t slept for weeks. It’s as if someone has taken my batteries out and there is nothing I can do to re-charge  them. But I can’t just lie there I have to get up and do a days work, the feeling doesn’t get easier throughout the day, it’s a mental battle. The day I cancel a client would be a downward spiral in my eyes…

I never really realised I had a dry mouth but I have I suppose it just becomes your norm. It wasn’t until I got a cold and couldn’t breath through my nose that I really realised how dry it was. I would wake in the night gagging from the dryness, water doesn’t help. Also eating dry foods can be difficult sometimes, especially crackers

Raynauds Syndrome is a problem iv’e had since a child but is also a symptom of Sjögren’s. I get cold very quickly and once i’m cold my body struggles to warm back up again and takes a lot of energy to do so, I am a master of wearing lots of layers.

Chronic Rhinisitis has also plagued me through my life, it is also a symptom of Sjörgren’s although this was not the initial cause. My nose gets very dry so finds it difficult to filter  particles…

This has led to problems with my ear as it has blocked my Eustachian tube that goes from your nose to your ear, causing me to have glue ear. Now seeing an ENT specialist…

Brain fog is also a symptom, when I have all the above going on at the same time my brain struggles to function efficiently…

Dry skin, hair loss, irritable bowel …

What can I say it’s not been easy but please don’t think this blog is going to be negative. I refuse to let any of these things beat me but it’s a journey full of ups and downs. I will discuss deeper all the above and share with you how I have managed them.

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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