Looking for advice

[Amos23]

Hi there this is my first time posting on this forum as far as I am aware I do not have lupus but i am having some health problems and was just wondering if anyone had experienced similar, I do apologise if it’s a long one but it been a rough few years. Firstly when I was 14 I was diagnosed with Graves’ disease I had what seemed to be immune problems as I had had glandular fever bad, chicken pox twice and a case of shingles. I was also involved in a very traumatic accident when I was 11 I only mention this as I have read trauma can be a trigger for some illness. At 23 I had a total thyroidectomy my levels are well controlled with thyroxine now but I still suffer from horrendous fatigue. During my pregnancy I developed gestational diabetes I became insulin dependent thankfully it returned to normal after the birth but I developed type 2 diabetes years later which I control well with diet. I was diagnosed with hidradenitis supprativa I’ve had a lot of problems with abccess’ and acne type flare ups in groin and buttocks. I have recently been diagnosed with fibromyalgia for wide spread pain and joint aches and stiffness after anything else showing up in bloods... do you think they would of tested for lupus as a routine or is it not routinely requested? As a knock of all of this I was prescribed sertraline an antidepressant to help lift my mood and also help with symptoms of fibro as apparently it helps to change the pain pathways. I am seeing doc again tues to discuss things further so just thought I would try to gather info, I am also from a mixed rack back ground and have heard lupus can be more prevalent in Asian genes. sorry for the long post but it is really starting to effect my life I am only 34 and would appreciate any input

[Lisalou19]

Hello Amos23,

Whilst I’ve no idea what could possibly be wrong with you I would assume you are at high risk of developing other auto immediate diseases due to your existing health problems.

I don’t think lupus is routinely checked. I’m in my 14th year of suffering and only this year am I actually being investigated for lupus.

I would ask your gp to do further testing, although the bloods gps offer are very basic, a specialist will do more in depth bloods, but the results can be inconclusive.

Are you currently under a hospital? If not this maybe a way for you to move forward.

I currently take amatripulene, not sure that’s how you spell it, but this helps with my sleep and is meant to act as an anti depressant. Nothing lifts my mood when I feel totally exhausted and run down.

My brother had thyroid disease around the age of 18, he never fully got better and is a completely different person.

Maybe he has additional problems on top of it, but he wouldn’t know. You sound very much in tune with yourself , make a gp appointment and open up about your concerns 😊

[Amos23 in reply to Lisalou19]

Thank you so much for taking the time to reply and for the useful information, I find that the antidepressants somedays like your self do nothing to help me. Although I am sad to hear about your brother it’s nice to know I’m not alone in the change it’s had on my life, I seen a rheumatoidologist a few months back I was showing some markers for rheumatoid arthritis but no appearance of actual damage to my joints hence given the fibro diagnosis I will make a point of checking with doc to see what they have actually checked for, thank you again and I wish you look and success with your own treatment x

[whisperit]

Hello Amos23

Sorry to hear you are having a hard time at the moment. As far as I know, Graves' is an autoimmune disorder, and given your more recent symptoms, it would be odd if your clinicians have not done at least some blood screening for markers of auto-immune activity. That ought to include your ANA levels and a variety of other antibody tests.

It seems a very realistic possibility that you might have an underlying systemic auto-immune problem of some sort, particularly given your more recent history of persistent fatigue, low mood and 'fibromyalgia'. Whether it would be classed as lupus/SLE or something else (there's plenty to go around!) is impossible to say. But regardless, if you are unsure or worried, then you should definitely ask your questions.The LupusUK leaflet here is a good introduction to the signs and symptoms of lupus and related conditions lupusuk.org.uk/wp-content/u...

Hope things get better for you soon x

[Amos23 in reply to whisperit]

Thank you so much for taking the time to reply I really appreciate that, thank you for the link it’s all very helpful. I seem to have some many symptoms related to lupus especially the reaction to direct sunlight. I will push hard at my appt to get things going, thank u again xx

[Chanpreet_Walia LUPUS UK]

Hi Amos23,

Welcome to the LUPUS UK HealthUnlocked Community, we offer a free information pack which you may like to download or request at lupusuk.org.uk/request-info...

There are a number of people who believe their lupus was triggered by a stressful event, although it is not possible to know for sure.

Fibromyalgia can be commonly diagnosed during early stages of lupus. The FMA UK website provides information on fibromyalgia and its symptoms as well as useful links for local support networks, advice and over-lapping conditions: fmauk.org/

There are certain criteria and tests that need to be met in order to make a diagnosis of lupus to find out what they are, click here lupusuk.org.uk/getting-diag...

In the UK, lupus is more prevalent among people of Afro-Caribbean origin, followed by Asians and then Caucasians. Similar results have been shown in Australia, New Zealand, China, Philippines and Japan.

To read our blog article on ‘pain management’, click here lupusuk.org.uk/pain-managem...

Here is the link to our blog article on 'coping with light sensitivity' - lupusuk.org.uk/coping-with-...

Please keep us updated, wishing you all the best.

[Amos23]

Thank you s much for all that info! That is all so helpful! I am just about to go in with doc as we speak and I am def going to mention all of this Just to make sure I am covering all my bases xx