Sjogrens Syndrome secondary to diabetes

[AJLang]

I spent an hour with a rheumatologist yesterday who checked me thoroughly and diagnosed me with Sjogrens Syndrome. As the first lot of blood tests were normal she's said that it's secondary to the diabetes. I've had a second lot of different blood tests done but she's not expecting them to show that it's primary sjogrens.

 

[mikeyB]

It's not secondary to the diabetes. It's an association. It happens far more frequently in the rheumatic autoimmune conditions. It just happens to be an autoimmune condition. I've got a few of those, but no Sjogren's. It mainly affects women, the ratio being 9 to 1.

If you have the specific antibodies in the tests it doesn't distinguish between whether it is primary or not. You already know it isn't, inasmuch as you already have an autoimmune condition. In any event, not everyone who just has Sjogren's show antibodies. It's not the most difficult diagnosis to reach clinically without any investigation, to be honest, because no other condition produces that collection of symptoms. It affects saliva production, tears, nose and any of the bits of you that secretes fluids or mucus.

Usually, treating the individual symptoms will ease the condition, but there is no cure.

 

[AJLang]

It's not secondary to the diabetes. It's an association. It happens far more frequently in the rheumatic autoimmune conditions. It just happens to be an autoimmune condition. I've got a few of those, but no Sjogren's. It mainly affects women, the ratio being 9 to 1.

If you have the specific antibodies in the tests it doesn't distinguish between whether it is primary or not. You already know it isn't, inasmuch as you already have an autoimmune condition. In any event, not everyone who just has Sjogren's show antibodies. It's not the most difficult diagnosis to reach clinically without any investigation, to be honest, because no other condition produces that collection of symptoms. It affects saliva production, tears, nose and any of the bits of you that secretes fluids or mucus.

Usually, treating the individual symptoms will ease the condition, but there is no cure.

Thank you. Yes it my eyes, mouth and nose that are affected and have got much worse hence my GP referring me to the rheumatologist. It also explains why my already bad fatigue has got much worse.

 

[Bloden]

Very sorry to hear this @AJLang. I hope treating each symptom gives you some relief. (((Hugs)))

 

[Pumper_Sue]

Thank you. Yes it my eyes, mouth and nose that are affected and have got much worse hence my GP referring me to the rheumatologist. It also explains why my already bad fatigue has got much worse.

I'm surprised your GP referred you as it's a simple problem sorted by GP and even more surprised you were seen so quickly as a routine apt would normally take 18 weeks even if they decided to see you. My GP just did the blood tests and sorted the treatment and suggested actually getting outside as much as possible in the fresh/moist air rather than staying indoors all the time would help no end.

The less you do the more fatigued you will feel.

 

[AJLang]

Very sorry to hear this @AJLang. I hope treating each symptom gives you some relief. (((Hugs)))

Thank you Bloden

 

[AJLang]

I'm surprised your GP referred you as it's a simple problem sorted by GP and even more surprised you were seen so quickly as a routine apt would normally take 18 weeks even if they decided to see you. My GP just did the blood tests and sorted the treatment and suggested actually getting outside as much as possible in the fresh/moist air rather than staying indoors all the time would help no end.

The less you do the more fatigued you will feel.

Obviously different GPs have different approaches. I had my GP appointment on April 12th and saw the rheumatologist on May 17th. I was surprised at how quickly I got the appointment.
With regard to the fatigue I used to be a gym bunny and go for regular walks - now if I push myself I severely pay the price. Different illnesses affect different people in different ways as I’m sure we all know on the forum.

 

[AJLang]

According to the NHS “Sjögren's syndrome can be difficult to diagnose”

 

[Flutterby]

I'm surprised your GP referred you as it's a simple problem sorted by GP and even more surprised you were seen so quickly as a routine apt would normally take 18 weeks even if they decided to see you. My GP just did the blood tests and sorted the treatment and suggested actually getting outside as much as possible in the fresh/moist air rather than staying indoors all the time would help no end.

The less you do the more fatigued you will feel.

Ouch, please try to understand that suffering from chronic fatigue, ME and other conditions which cause fatigue is very debilitating. Your throwaway comment at the end of your post that "the less you do, the more fatigued you will feel" is such a sweeping statement.

 

[Flutterby]

I spent an hour with a rheumatologist yesterday who checked me thoroughly and diagnosed me with Sjogrens Syndrome. As the first lot of blood tests were normal she's said that it's secondary to the diabetes. I've had a second lot of different blood tests done but she's not expecting them to show that it's primary sjogrens.

Really sorry Amanda.

 

[AJLang]

Really sorry Amanda.

Thank you Karen

 

[Pumper_Sue]

Ouch, please try to understand that suffering from chronic fatigue, ME and other conditions which cause fatigue is very debilitating. Your throwaway comment at the end of your post that "the less you do, the more fatigued you will feel" is such a sweeping statement.

Err hello, The info came from a very highly qualified OT who specialises in ME, CFS and MS and what she told me is 100% correct.
I know as have MS and a collection of other autoimmune conditions that cause fatigue.

 

[mikeyB]

According to the NHS “Sjögren's syndrome can be difficult to diagnose”

No it's not. The reason they say that is because tests for it are unreliable, as i explained in my first post. There are five classic symptoms that if they appear together, it is Sjogren's syndrome. These are dry mouth, dry eyes, dry nose and vaginal dryness, and lethargy.

Henrik Sjogren (There should be an umlaut over the "o", but I can't be bothered to add it) didn't have any access to antibody tests. He was an ophthalmologist who found a group of women who had dry eyes and exactly similar symptoms with the the other four features. He was born in 1899, died in 1986.

So if he could spot it clinically, any competent GP can diagnose it. He or she might want to refer on the rheumatologist if anything else develops. The reason it gets missed is because the patients present with the symptom that most troubles them, such as dry eyes. Or women who are sexually active get vaginal dryness - that symptom drives the diagnosis in completely the wrong direction, because hormonal treatments or creams have no effect. KY Jelly is the answer to that problem. Doesn't need a consultant to twig on the what the condition is, it can't be anything else.

The name of the condition confirms what I say. It's a syndrome - a syndrome is collection of symptoms. It's diagnosis does not depend on pathological blood tests. It's hardly a rare disease because it's estimated that at least million women in the US have it, so every GP in this country will have seen one or more patients with it.

By the way, if you look at some of the info available on the web, you might see that that a small group of women with this condition develop lymphatic cancers. That is only marginally more than happens in the general population, so may not be a genuine association. Nowt to worry about, mind. I wouldn't.

 

[Flutterby]

Err hello, The info came from a very highly qualified OT who specialises in ME, CFS and MS and what she told me is 100% correct.
I know as have MS and a collection of other autoimmune conditions that cause fatigue.

I'm glad it works for you but it is absolutely not true for everyone and as such is a sweeping statement in my opinion.

 

[everydayupsanddowns]

Sorry to hear about your diagnosis @AJLang

Hope now that you have a diagnosis you can access suitable treatment to improve your symptoms.

Can posters please remember that this is a support forum, and any new diagnosis is likely to be accompanied by some worry and upset.

 

[everydayupsanddowns]

I'm glad it works for you but it is absolutely not true for everyone and as such is a sweeping statement in my opinion.

I was under the impression that the evidence-base around CFS had shifted with the new NICE guidance and that ‘graded exercise’ was now felt to be inappropriate and possibly even damaging.

NICE ME/CFS guideline outlines steps for better diagnosis and management

www.nice.org.uk

“And the guideline makes it clear that any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy (GET), should not be offered for the treatment of ME/CFS.”

“The guideline emphasises the importance of a personalised management plan for areas such as energy management - including the importance of rest and staying within the individual’s energy limits - the treatment of specific symptoms, and guidance on managing flares and exacerbations”

 

[AJLang]

Thank you very much @everydayupsanddowns. Thank you very much for referring to the new CFS guidelines which came out a few weeks ago and definitely fit with my experiences.