Feeling helpless without a firm diagnosis

[Cornwall91]

Hi All,

I'm posting in the hope that someone can tell me that a) I'm not going mad/losing the plot and b) hopefully I can relate to others who have similar experiences and obtain any advice that may help me.

Apologies in advance for the essay...

I think in hindsight I've had symptoms for a couple of years but probably very mild to the point I never even really noticed or had taken much notice. I'm just about to turn 30 and feel at an all time low and like I'm 80.

My health really started to take a turn from early to mid 2020 which started off with 'stomach issues' including issues with bowel movements, bad cramps etc. The doctors told me they felt it was IBS (I'd never had any issues with my bowel or digestion previously but I certainly was getting bad issues now). I also then started to get a red rash on my face every so often which spread across my cheek and nose and my face also felt very inflamed/hot; each bowt of rash got more intense/severe. This typically went away on its own after a couple of weeks and due to COVID and doctors providing opinions from photographs I was told the rashes could be all sorts...viral, bacterial, cellulitis etc. I also had reoccurring swelling/pain on one side of my neck and sore throats which I was given antibiotics for it to only come back on a regular basis. I also have a severely dry/dehydrated mouth, lips despite genuinely drinking litres of water a day, I've had pains under my armpits, thinning/loss of hair, bad headaches...the list goes on. I have approached my doctors at the point of almost each and every symptom but due to speaking to different doctors and them not really taking me seriously or reading through my notes I don't feel they pieced together that all these things could be related and didn't really offer much by way of investigation/treatment apart from antibiotics for several months. Eventually, I persuaded the docs to do some bloods, albeit they decided to do them when I was at the end of what I would call a 'flare up'. These came back positive for ANA but kidney function etc. was fine. I did however, eventually get referred to a dermatologist although annoyingly I didn't have a rash or any real symptoms during my pre-scheduled appointment. The derm said it could be Lupus and Schogrens Syndrome but also possibly a reoccurring bacterial rash and wanted to do biopsies and see me when I had a rash. They did some bloods to check for Rheumatoid Arthritis which was negative/clear and I believe they did do one blood test relating to lupus (not sure which type/kind which was negative).

After having my second COVID jab recently, I feel my immune system was busy attacking the substance injected and I picked up some sort of bug/illness within a couple of days (bad cold/flu like symptoms and non stop runny nose/fever etc. which I absolutely know isn't related to my normal 'flare up' symptoms but after my body finished fighting that for about 7 - 10 days, I feel has led onto another flare up. This flare up has been horrendous (the worst yet) and my symptoms seem to have progressed and developed since my last flare up. Over the last week or so just after recovering from my cold/flu bug (had a negative COVID test also), I've had daily painful headaches which last all day, aching in my face (jaw, cheekbones), pains in my armpits, I literally feel so unbelievably drained like someone has squeezed every single ounce of energy out of me despite how much sleep I get, aching joints, my chest has felt heavy and like deep breathing has been a bit difficult, today I'm also quite rashy on my face. There are probably other symptoms I've not even mentioned but basically this is the worse flare up yet and I feel so helpless. I've spoken to my GP via telephone who is going to write to a Rheumatologist to see if they feel there is any benefit it seeing me but they've said I will be waiting for a while for an appointment. They also did some routine bloods the end of last week to check my thyroid, iron, vitamin B etc. to rule out any issues there causing the extreme tiredness.

In short, I feel like all the symptoms I'm experiencing are not only getting worse but I'm developing new ones. I feel like doctors think I'm being dramatic or making things up. I've felt so unwell with this stint that just getting through work has been a huge struggle, all social activities, exercise and anything beside work has been a massive no no. Not sure if it's worth me mentioning my mum had extremely severe Rheumatoid Arthritis and passed away unexpectedly aged 54 last year (joint cause of death was listed as Rheumatoid Arthritis and Pneumonia) although I don't feel my symptoms are RA related at the mo, not to say I won't have it in the future.

I have obviously not had any form of formal diagnosis and whilst I too believe all my symptoms point to Lupus and Schorgens Syndrome, I am aware these things can overlap with so many other things and types of autoimmune disease.

I would be interested to know if anyone has had a similar series of events and how they went about being diagnosed.

Thanks for reading and best wishes,

Nicole

[Spanielmadlady]

Hi Nicole.i really feel for you as many of us have been where you are now the average time to diagnosis is 6 years for me it took 5.you said another test for lupus was negative which is most probably dsDNA test in which it is possible rheumatology may not see you as a percentage of the population have positive ana without having CTD .my advice to you is keep a symptoms diary and pics of rashes if possible. There is an 11 point criteria for lupus you may find helpful.stay out of the sun and cover up head to toe in factor 50,hat,clothes and sunglasses..see if that helps your symptoms.you may want to look at your diet .I have some ibs which has improved dramatically since going lactose free and that was discovered chance after I didnt have any dairy for 5 days. When I did have it again I was double up with cramps trips to the loo etc.We've all been made to feel as if it's in out heads so be confident about how you and keep going ...you will get there xx

[Cornwall91 in reply to Spanielmadlady]

Hi Spanielmadlady, thank you for your lovely message. Funny you should say about dairy, after all the gastro symptoms I paid to have a private intolerance test which flagged diary as a no no. Since then, I have cut out the majority and just occasionally treat myself to a bit of cheese. The gastro symptoms do seem to come and go, some weeks are worse than others but its the amalgamation of symptoms during a flare up that's making me feel so unwell and helpless and the other symptoms are certainly bothering me more recently. Praying I'm one of the rare few that don't have to suffer several years for a diagnosis. xx

[Spanielmadlady in reply to Cornwall91]

There is also hidden lactose in things you wouldn't necessarily think of like milk protein,whey.milk powder and buttermilk. Cathedral city do lactose free cheddar phildelphia do lactose free soft cheese.tesco do LF greek yogurt .Swedish glacé do lovely dairy free ice cream.flora Original is dairy free . Butter is OK very hard and aged cheese is OK.i now use oat milk and make my own cakes so I know there is no milk in them.What was your ANA titre? If its low then again its possible rheumatology won't see you.bloods can flit between positive and negative and don't always correlate with disease activity xx

[KayHimm]

You sound like most of us! You have had a lot of debilitating symptoms. I really feel for you.

I had a lot of your issues at first - the GI issues (after forty years still unclear!), rashes and dry eyes and nose.

The first thing you need to do is erase the thought from your head that anyone thinks there is nothing wrong with you. Autoimmune diseases can look like other things in the beginning stages.

The fact that the dermatologist mentioned lupus and Sjogren’s tells me they are concerned you have autoimmune disease. They have to take this neutral, non-alarmist approach. These are chronic serious illnesses and they have to be methodical, continue to observe and test and not frighten you. At least that is what I think is actually the case when they “suspect” but are unsure of autoimmune disease.

Do you record your temperature? That is important information if you have a fever. Any new symptoms should be reported.

It really does sound unclear whether what you have is an infection or an autoimmune condition. The skin biopsy would help a lot.

You have clearly been ill. Don’t doubt yourself. The doctors do not doubt it. Otherwise, they wouldn’t be doing a skin biopsy.

Take good care.

K

[Cornwall91 in reply to KayHimm]

Hi KayHimm, thank you for your message. I think the dermatologist was leaning more towards a bacterial rash (their conclusions without seeing the rash to date) primarily based on me telling them the rash seemed to start on one side of my face/cheek then spread across my nose to my other cheek etc. which they said isn't typical of lupus. All rashes I've had since then do appear to have presented in a uniform manner though. They have put on their letter possibly Lupus/Schorgens syndrome. It's nice to have some assurance then I should trust my body and experiences. I am of no doubts I have some form of autoimmune disease, it's just whether it is Lupus and Schorgens (which again, I personally feel it is).

[KayHimm in reply to Cornwall91]

Do you have photos? Did she see the one with the malar rash? She knows “not typical” doesn’t mean it isn’t. She wants the biopsy, so she is intent on getting the diagnosis right.

If she put in her letter “possibly lupus or Sjogren’s” it does not sound like she is convinced it is bacterial.

Yes, have faith in yourself!

Try to think of it as your doctors trying to put the pieces of a puzzle together. Then they have to wait while our ailing bodies produce enough clues. It is not fair, right?

K

[Boudica1]

Hi nicmer91. Sadly you are not alone many of us can find it's years before getting a firm diagnosis and can be due to multiple reason's, like everyone the usual first port of call is the GP they are what the label say's general practice and many haven't come across some of the out of the norm disease's. They also have this annoying thing of only dealing with one problem at a time and sometimes more often than not you have to ask them if there is a chance that it may be connected to X,Y,Z, also I've found not all GPs know which bloods can be done or have never heard of them plus some they can't do as it's the hospital consultant's who order the more exotic obscure test's.Ah the joy of hospital consultant's the one's who order these exotic blood tests and biopsies, they are a breed all unto themselve's some are good and some are not so good a lot will only give a firm diagnosis based on positive bloods and if like me bloods are out of the "normal " range but not over the top they call it normal and at times acceptable so basically whatever is constantly out of whack and they are keeping an eye on it. The ANA can go up and down just like other blood test result's.

I'm lucky in some respect's as I've been going through this merry-go-round four or five year's now and have been going through doctor's saying maybe it's this, OH wait a mo it could be that but I have been told I'm sero-negative Sjogren's and some doctor's are fixated with having positive blood result's some do realise and take into account that with Sjogren's around 30% are sero-negative.

Whatever they should be treating the symptom's and not some named disease and the treatment is the same whichever way round. If you are having chest problems please let you GP know A.S.A.P it could well be nothing, or stress related but you do need to let them know.

As other's will tell you keep a symptom diary and write down everything even if you don't think it's related as sometimes bizzarely it is, also take photo's of anything that is visual these things do help doctor's/consultant's as nine times out of ten when you see them the rashes have gone. Also if there is a rash at the time of your appointment your dermy will (should) take their own photo's as part of your record's. Also it help's you to see if there is a pattern going on and can help you when you have an appointment especially if you have notes of thing's you want to mention, it help's to stop that moment when you're going home after the appointment from getting that DAMN! moment I meant to ask/say X,Y or Z, we've all been there done that at some point or other.

X

[Natalie1982]

I read this and feel like i could have written it myself. Ive had upper gi issues gerd/acid reflux which the gp has prescribed Lansoprazole originally which didnt agree with me and now nizatidine. Ive been having dizziness as well recently. My bloods seem to be ok but have had constantly elevated CRP which is 12 at present. Im at a loss atm as i feel like im going insane with all the symptoms that keep popping up. The doctor is fixated on the GERD/ Acid reflux and not much else.

[Cornwall91 in reply to Natalie1982]

Aww Natalie, bless you. I feel your pain (no pun intended). Can I ask if your symptoms have developed in the same order as mine and if they are similar? They certainly sound similar. I haven't been offered any form of treatment whatsoever to date apart from antibiotics in case of an infection. Well just know that I'm going through it with you and know how frustrating it is. Have you been referred to any consultants at all? Rheumatology, dermatology etc? x

[Natalie1982 in reply to Cornwall91]

Well it started with a panic attack due to apparent floating rib spasm back in dec 2020 and then gi issues came on, followed. It all dies down and then a momth and a half ago boom they all came on again throat, neck, gi, hair loss, rash, heat sensitivity, dizziness, headache oh and palpations recently as well. No referrals at all, apart from privately going to a gastroenterologist for a colonoscopy when my calprotectin levels were high ( all biopsies were fine and he concluded it was the lansoprazole which i then stopped). The gp is still convinced its acid reflux but i have had repeated full blood count and crp done today. 🤷‍♀️

[Cornwall91 in reply to Natalie1982]

Oh no that’s awful. Definitely have some similarities to my experiences. I think I’m learning to trust my own body and not make doctors fob me off. Make sure you keep on at them, they’re clearly not putting the full picture together. I’ve been put in touch with a friend of a friend who has Lupus and she said it took her years to get diagnosed and that the best thing to do is try and see a rheumatologist so that’s what I’m hoping for

[Jmiller623]

Welcome Nicole! Lots of good info already put out there for ya. Just saying hello. Sending you healing vibes and gentle hugs. ❤️xx

[svfarmer]

I’m so sorry that your feeling so unwell and that you lost your mum recently and so young , you really have been though the mill - sending big hugs and hope you will get a Diaognosis soon x

[Cornwall91 in reply to svfarmer]

Thank you for your lovely message. Much appreciated