In need of advice

[chronicallycolie]

Hi I’ve been chronically ill and symptomatic for around 5 years now. I’ve been sent to many different specialist who gave me very small diagnosis’s but nothing to really explain my symptoms as a whole. I’ve been tested for autoimmune diseases just last week and everything came back normal despite being symptomatic. Does this mean I can’t have an autoimmune disease? How should I follow up with my GP? Please help I’ve struggled with depression and anxiety over being ill without answers and I just really want to know what’s going on with my body. Thank you~

[Serser]

Hi Chronicallycolie,

The thing with Lupus is that it imitates lots of other conditions/illnesses so you have to equip your dr with as much information about you as possible-think detective! Something that might seem irrelevant in your history might actually be the key to what’s wrong and that may or may not be Lupus. Try to keep an open mind, don’t get too fixated on lupus as you could end up chasing something that genuinely isn’t the problem and therefore ignoring symptoms that could actually point to a more solid diagnosis of something different and maybe even more treatable.

I would say if you are not happy with the outcome of the tests and still feel something is wrong you should put your case forward to your GP again.

I’m sure there is an advice page on here somewhere that advises how to prep for a dr consultation beforehand so you can get the best you can from it. I’ll see if I can find the link on a minute but it’s things like gathering family history of illness/diseases/diagnosis ? Genetic links?, how to list your symptoms-duration of each symptom and how long you have felt poorly, impact of life, family, work etc.

Holidays you’ve had in the past-potential exposure to something unusual that isn’t seen often in uk eg bites that may have triggered something.

Medications, over the counter, herbal and prescribed is also useful as meds can sometimes either trigger health problems themselves. Even past meds are worth a mention I would say in your situation when all is worth mentioning!

Lifestyle and habits are worth a mention if you drink/smoke etc as that can have an impact too especially together with other meds.

Diet-could there be any triggers associated with your diet?

Think of absolutely everything you can even if it doesn’t seem relevant or related, that could be the key bit of info the dr needs to figure out what might be wrong.

Triggers that may contribute to symptoms are also helpful eg sunlight exposure for lupus.

I also took journal articles that correlated with what I was saying, evidence to back it up. I also took photos of how I looked during a flare-butterfly rash on face, mouth and tongue shots of ulcers and swelling, hives on legs. I also took my temperature when it was raised and kept a diary of when these flares and fluctuations of temperate happened, this also helped to collate the evidence I needed as it correlated with my menstruated cycle, which was relevant.

I would book a double appointment so you aren’t rushed.

I sat down, closed my eyes and tried to empty my mind of all but the health related facts dating back to my childhood, I then scribbled away a sort of timeline-that coupled with my recent diaries gave some clarity to give to the dr.

Basically you need to go armed and ready with as much evidence as you are able in order to present your case!! Good luck!

I hope this helps you seek the answers you are looking for!

I really do empathise with how you are feeling; I’ve been there too for a long time!

Take care of yourself. X

[Serser]

lupusuk.org.uk/getting-diag...

[Serser]

lupusuk.org.uk/getting-the-...

[Serser]

lupusuk.org.uk/gp-or-consul...

Ooh and don’t forget to think of questions and write them down! Nothing worse than leaving an appointment and then realising you forgot to ask!

Take a pen, paper to scribble notes on or better still someone else in with you during appointments as they can help jog your memory of what was said afterwards. My memory if pretty poor so I need this when I visit the dr!

[KayHimm]

It doesn’t necessarily mean you do not have an auto-immune disease. They can take years to declare themselves. Both symptoms and lab tests are important. They are looking for evidence of inflammation and autoimmunity. What are your symptoms?

[chronicallycolie in reply to KayHimm]

Oh lord me see if I can remember them all. I was diagnosed with Acrocyanosis (which I felt was a cheap diagnosis to make me leave) which is the benign version of Reynaud Syndrome but as I explained to my specialist mine did not feel benign. I also have hyper mobility joint disorder. I’ve seen three different GI specialist to help me with GI problems but that only led to tests and gallbladder surgery. I’ve mostly complained of chronic joint pain and stiffness just about everywhere. I get pelvic pain so bad I can’t walk correctly or apply weight on my legs because it hurts my pelvis too much. I have burning rib, breast bone, chest pain, and collar bone pain that I assume is costrochondritis but cannot confirm without a diagnosis of course. Chronic neck, back, and shoulder pain that aches all the time and causes headaches. Chronic nausea and occasional vomiting, not very much anymore but I used to throw everything including soup up. My GI problems are all over the place. From constipation to uncontrollable bowel movements and abdominal pain during a bowel movement. I know I am lactose intolerant so I try and be careful of that as well. I also have overactive bladder where if I hold my urine in for over around 20-30 minutes I’ll have bladder pain as well since I have to urinate frequently. I wake up during the night to pee about 2-3 times and if it’s not because of that I occasionally wake up with my chest burning, a sore throat, and dry mouth (I do have acid and bile reflux problems and take medication for both). Chronic fatigue and brain fog as well. I get to the point during the day where I feel so low functioning I just sit down and do nothing. Going out to the shops is a lot of work because I get tired of standing so long. I’ve been told this sounds like anything from Lupus, to fibromyalgia, to endometriosis, to Lyme disease. I’m just looking for answers and suggestions. If you have any please let me know. Thanks ☺️

[Chanpreet_Walia LUPUS UK]

Hi Chronicallycolie,

Welcome to the LUPUS UK HealthUnlocked Community! We offer a free information pack which you can download or request here lupusuk.org.uk/request-info...

Was it an ANA test? Around 5% of people who have lupus do not test ‘positive’ for an autoimmune disorder despite having one. It is ideal to be tested when experiencing a flare of symptoms as this indicates you have higher disease activity within the body thus, providing more reliable results. On average in the UK, it takes 6.5 years to make a diagnosis of lupus. It is important to remember that lupus presents differently in each individual and no two people will share the exact same experience.

For information on the specific tests and criteria that are needed in order to make a diagnosis of lupus, click here: lupusuk.org.uk/getting-diag...

Sometimes certain situations can be tough which is why talking to someone can help reduce any worries or anxiety you may have. If you would like someone to speak to, I can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me at [e-mail]

We recently published a blog article on ‘coping with depression and anxiety’ which you may like to read: lupusuk.org.uk/coping-with-...

Please let us know how you get on, wishing you all the best.