An Open Letter To Those Without Sjogren’s Syndrome

I love this open letter!

Sjodry & Parched

I recently came across a site: which posted an Open Letter to those without Chronic Illness. I noticed that there are several adaptations to the letter that people have made with respect to their various specific medical conditions. Of course I decided that I should immediately create an Open Letter To Those Without Sjogren’s Syndrome. So for any of my Sjoggie friends who may feel the need to share this message with someone, please feel free:

An Open Letter To Those Without Sjogren’s Syndrome..

What I would like you to know is that I have a mostly invisible, chronic illness called Sjogren’s Syndrome. Life as I know it, is unpredictable and changes daily for me. Just because you cannot see those changes or their impact on my daily functioning, does not mean that they are not real.

Most people have never heard of Sjogren’s Syndrome. And for the…

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Sjogren’s & Synergy Worldwide Supplements: Win! Win!

Since living with Sjögren’s my job as a personal trainer has become very tough. It’s not so much the pain in my body, on some level I can deal with that but it’s the chronic fatigue which leaves me unable to function.

I wake up on a Monday morning feeling like I haven’t slept for a week and knowing you have  a week of work ahead of you is soul destroying. At times I could cry at the thought of it…at times I have cried.

So I realised a few months into my diagnosis I may need a plan B which is a shame as I love my job. I came up with lots of ideas but nothing really fitted. I needed something that firstly interested me but also a job I could do from home if I needed too, dictate my own hours and pay the bills.

By pure luck I stumbled upon Synergy Worldwide, I had never heard of them before. I had researched other supplement companies but they were not the right fit for me.

On the day of my meeting with Synergy I was having a really bad fatigue day, so 3pm on a Friday was not a good idea! So I took my daughter with me to  take notes as I knew at some point the brain fog would kick in and I would zone out.

Towards the end of the meeting I decide to try the sample I had been given, the E9 which claims to boost your energy. In my mind I thought there is no way this will help as I have fatigue, i’m not just tired….people just don’t understand! On leaving the meeting 30 minutes later I didn’t feel any benefits, well not at that point…by the time I got home I was bouncing off the walls! It was like someone had plugged me in.

Wow! ok it does what it says on the tin, I need to give this a go. I knew I had to trial the product before I even considered recommending it to my clients as I would not want to undo my good reputation as a P.T.

I started by ordering the E9 and ProArgi-9. I initially found the E9 gave me too big of a kick of energy so I started with just half a sachet daily, it made such a difference to my day. I now just judge how i’m feeling on the day, so sometimes I don’t need it, on busy days I will take a whole one I just listen to what my body needs.

The ProArgi-9 doesn’t have an instant effect, however  10 days in and the results were amazing! The first thing I noticed was my increased energy and alertness. Since having Sjörgren’s I have struggled to wake myself in the mornings, since being on ProArgi-9 I wake alert before my alarm. Then it also dawned on me that for the first time in 18 months I had no pain in my ribcage/back. I used to feel like my ribcage was in a very tight corset that restricted my movement and caused constant pain on movement….completely gone! As the weeks went on the pain in the rest of my body reduced.

My brain fog also improved.

Since having Sjögrens I have experienced excessive hair loss which has been very upsetting and also been unable to grow my nails. I am now three months in on all of the products and my hair is really starting to grow back and my nails look amazing.

I also take all the other products in the range which all come through in what they say they do.

Don’t get me wrong I still have tough days, there is sadly no miracle cure! I have worked very hard at managing my condition by eating well and exercise and adjusting my lifestyle but my goodness Synergy  has been a great helping hand.

Synergy has been a win win, I have not only found a plan B which can earn me good money but Synergy has given me some quality of life back which i thought I would never see again!


Sjögren’s: An act of kindness

“No act of kindness, no matter how small, is ever wasted”-Aesop

It’s been a while since iv’e been to the hairdressers, iv’e let myself go a little and been feeling a little broke.

I nearly cancelled as I was feeling so rock bottom after the Sjörgren’s meeting. Iv’e been going to the same hairdressers for the last 20 years so I know my hairdresser well. As always a warm welcome and Karen preceded to ask how I had been. I just said that I was feeling a little tearful so if she didn’t mind I didn’t want to talk about it.

I had been aware that over the last few months my hair had been falling out, I had wanted to ask Karen what she thought but was a little afraid of the truth. Karen beat me to it and very gently asked “have you noticed any difference with you hair?” at which point I burst into tears, the tears just streamed down my face. How embarrassing! At which point Karen was so sweet, she listened most of all.

She then asked when I was free next as she wanted to book me in to get my hair coloured (which was much needed). I replied things were a little financially tough at the moment. “No this is my treat, I want to do something for you.”

Karen also didn’t charge me for my haircut and gifted me some hair loss treatment (Nioxin hair/scalp treatment) to take home with me and the following week Judith the colour technician was just as sensitive and lovely and got rid of the grey.

Karen will never know how much of a turning point her compassion and kindness was for me, she saw my rock bottom and picked me up!

Thank you Karen

Sjögren’s meeting sent me into meltdown

I’ve been on Hydroxychloroquine for 3 months now, clearly kicking in alongside all the other life changes i’m making.

The BSSA had a large seminar running up in London but my specialist was holding a pre meeting with BSSA before the main event. I had been invited to come along.

I was in two minds as to wether I should go, I was feeling pretty good and was concerned that if the other people in the room were not in the same positive state of mind it might bring me down.

I decided to go, I thought I would arrive just before the meeting started so I didn’t get caught up in conversation and could just listen to the facts from the speakers.

I arrived at the carpark of the hospital to make the observation that there seemed to be a lot of older people arriving, I thought surely they are not all going to the same meeting, they were. Nothing wrong with this but i suppose I was expecting everyone to be around the same age as me.

I went into the meeting and sat myself on the end of the aisle to protect myself from being sat next to someone I didn’t want to be. (I have a knack of sitting next to the person who wants to tell me there life story). All the seats were taken excelpt the one next to me. A very fragile looking lady came in and sat next to me, we introduced ourselves.

She then looked at my eyes and said”how come your eyes look so good?” And then proceeded to tell me the most awful story about hers, she then preceded to tell me everything else that was wrong, I was shocked she looked really unwell. The girl behind me, who was younger than me talked about her emergency visits to the hospital. Although she was positive in the way she spoke, I was taken aback. The meeting then started and although most of it was really informative there were a few people that showed me  how challenging this condition can be.

I did ask the question how quickly could the Hydroxychloroquine  could kick in as I was only two months in and already feeling the benefits. She said that this was possible and that the younger you are the quicker your body can respond to it, happy days! To be honest I was feeling pretty pleased with myself as to how well I was feeling. I realise now that my challenges to date have not been as great as others.

I remember looking around the room thinking, I haven’t got what you’ve got! I couldn’t get out the room quick enough when the meeting had finished.

I got home and I felt fine, I felt quite disconnected from it. It wasn’t until a few days later I had a big melt down. The reality struck home that actually I did have what they had and does this mean that this would be my future? And being fairly young (Okay i’m 48 but thats young in my eyes) would my condition really deteriorate by the time I was in my 60’s.

I cried for weeks, I felt scared, angry and depressed!

Don’t get me wrong I think these meetings are invaluable for most people but it just wasn’t for me.

It took a kind gesture to turn it around….

Sjögren’s, taking control back!

Well that’s enough of feeling sorry for myself, I need to get some quality of life back. I need to control it rather than it controlling me! (Rewinding to February 2016)

The specialist has started me on Hydroxychloroquine but she said it may well take up to 6 months to kick in and that’s if it works for me, a little scary as I need this to work!

She said being a personal trainer it should stand me in good stead with this condition as I have an understanding of the body and understand the importance of exercise and nutrition. I hear her point but I can’t help feeling it’s a cruel hand to be dealt when this is my work and it’s going to make it tough.

However I do appreciate I have an understanding of what I need to do to give myself the best chance of controlling this condition.

Before being struck down with Sjogren’s I could do 20 plus perfect press ups to overnight not being able to do one due to the pain and weakness. As I didn’t understand what was going on I foolishly decided not to do anything for six months. After getting the ok from the specialist that actually exercise would help my condition, I got back to it.

Not as easy as I thought it would be, I would normally beast myself for an hour and feel energised and satisfied afterwards. I had to take my training back to basics, not only did every movement hurt but I could fall asleep whilst training, I would start yawning 10 minutes in. Not only that I would need to save some energy so that I could work after. Not an easy balance to keep! I decided to break it down into bitesize sessions 10 minutes a day, for the first time in my life I actually hate training but I need to keep it going religiously,its got to get easier….

I have always eaten pretty well but realise I need to step it up. I am very much a carnivore my favourite being steak. I would have this once a week at least. Not great for my kidney function though, so this was one of the first things to go. (I still have it as a treat occasionally).

Oily fish is the way to go, so i’m told. I now have oily fish three times a week, i’m not really a fan but I take it like medicine.

I also went to see a Kinesiologist which was very helpful, she told me I needed to give up diary which wasn’t a huge surprise to me. Dairy is very inflammatory and makes the body produce more phlegm. Having had years of suffering with my sinuses I really should have done this sooner.

The biggest change I made was to cut out sugar, difficult to start with but now comes naturally. Sugar in my book is an evil, for so many reasons, obesity and inflammation in the body. If i’m bad (which I am sometimes, I’m only human) my pain increases.

I have also reduced wheat, not that I am intolerant to it but i feel better for not having it.

So what do I eat….Fresh whole food, nothing out of a packet. I will cover diet in a separate blog.

I also take supplements, Vitamin D in very high dose 5000iu, Omega 3 and B Complex and magnesium.

Fatigue is my biggest battle on some level I can just put up with the pain. I’ve had to learn to say “no”. If I don’t I realise there will be a price to pay. So socially life has become a lot quieter (boring if i’m honest). I hope, as I get a better handle on this that this will change…

What has been really important in taking back control has been sorting my head out, I grieve the loss of the person I used to be. So I see a cognitive hypnotherapist, she has been invaluable! When I lose control of my head everything else seems to fall apart. My word of caution would be though is to seek out a good one.

I have to say with making these changes I am feeling so much better but still a way to go.

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.

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