Feeling like I want to scream and have a proper t... - LUPUS UK

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Feeling like I want to scream and have a proper tantrum

Anjic profile image
4 Replies

I rarely post a message but feel part of the community here, I have learnt lots and understand so much more than I did 6 years ago, that is due to all you wonderful people living with this difficult disease sharing yourselves - thank you

I am so frustrated right now, I have been seeing a rheumy consult in Salisbury for over 5 years, yesterday she said she doesn’t need to see me for a year.

I have no diagnosis yet and she has said I have symptoms that point to many things but no concrete evidence to lead her down a particular route.

So I am on hydroxy amitriptyline hyloforte eye drops salivix pastilles biotine mouthwash paracetamol vit d,c,and iron, omeprazole and tegretol (as needed)

I have trigeminal neuralgia on and off, teeth are crumbling and cracking and I am having to have work done often, dentist prescribed duraphat toothpaste.

I have had a scan on my parotid glands and every thing looks normal-but that doesn’t mean you do not have sjogrens symptoms said the consult, but we have no evidence from the scan but if the medication is helping that’s good just carry on using them if you feel benefits.

I have had bold tests done over and over but no concrete evidence found.

I had 2 really bad flares last year where I was in bed for 6-8 weeks each time, off work and really struggling to manage, had to go on steroids. Thank goodness for your knowledge as I was getting Blackfoot hydroxy and not zentiva which I had been having for 4 years prior - discussion with GP who said we can ask for a brand and this year has been good, this is the first time I have been off poorly from work all year.

I have a chest infection - I have had problems with a weak chest all my life. GP has me on steroids penicillin and inhalers since visit on Monday morning. Consult said yes you are very wheezy.. I dragged myself to this appointment as I live over an hour away from hospital, not sure what I expected but some thing more deffinately! I have a mouth full of ulcers and a massive one up my nose, I am sweating at night like I’m menopausal and I know that bit has long gone. I feel so let down. I have pain in my left ear but it’s not earache, I have a banging head ache at the back of my head that radiates down my neck, my left arm is numb painful and tingling all at the same time, I’m snotty wheezing sweating, my feet are burning, my eyes feel like they have sand in them, I need to drink water as my mouth is dry as the gobi dessert, my skin itches despite the oil slathered all over after my shower, I’m worn out just getting here and you want to not see me for a year, I just want to know what’s going on with my body

Consult said why do you need a label - this made me so cross - I don’t want a label I want something to help me understand what is going on with my body, so far we have had fibromyalgia polymyalgia crumbling discs in neck, trigeminal neuralgia, possible lupus possible sjogrens and connective tissue disorders, and the GP calls it limited lupus.. I have arthritis in feet knees legs hips shoulders and suffer with raynuards, I have had electro testing on hands and feet and they say there is evidence of neuropathy especially on left side. AND despite all this and god knows how many visits back and forth to Salisbury and the GP we have got no further forward.

I have also been under a dermatologist due to rashes which are now been labelled urticaria following 3 biopsys this year. At least that’s one thing sorted and easy to manage.

I am so p’d off I could cry, not sure if it’s because I’m poorly that I feel so lost and alone with this disease or just frustrated at the lack of evidence in all the test results. I just feel I’m letting my team down at work as I can’t give them a proper reason for me and my crappy body, my boss is incredibly understanding but HR would like hard evidence ie a title to stamp on my file.

To be on the meds I am on means something is wrong, to feel like I do everyday is not normal, I am so tired of it all, the daily grind, the wading up hill in Poorly fitting wellies through treacle every day all day, having to miss social events, or leaving do’s early to get decent sleep, being exhausted when you wake up, having to take all the pills, being in pain, not able to find peace or respite from it - and now I’m just left hanging again.

Sorry to moan but it’s done me good as I have it back in perspective once more - what ever IT is it’s mine to live with, i need to understand IT to be the best I can be despite this illness, so I will continue to research read and live with it and drag my sorry self into each day knowing that I will find a positive.

Thanks for the rant I feel better now🌻👍🙂

Sending warm hugs and wishes to all you lovely people kindest regards Anji x

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Anjic
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4 Replies
jane1964 profile image
jane1964

Hello Anjic, I feel for you this was pretty much me last year ,it had been nearly ten years since first symptoms I had been referred two times by my GP and once by my liver consultant to no avail.I had been given a fibromyalgia diagnosis about 5 years ago, which never fitted the symptoms but made me go away until it all became intolerable and by Christmas last year I was feeling completely dreadful, I d been seeing the latest rheumatologist for 2 and a half years and was feeling desperate.Then their colleagues came in and felt it was more his type of condition and everything changed, I still don't have a total diagnosis but am on hydroxychloroquine, and azathioprine.I feel better than I have for years.What I found helped most was keeping a symptom chart daily like a spread sheet with everything on it whether seemingly related or no taking photos of any swelling and rash red eyes ulcers,anything and taking my temperature during a flare at start a few hours in at peak and once improved.All this eventually gave my doctor enough to justify more testing,I had been told my ANA was negative but it turned out it was positive when done by hand apparently the machine system they usually use only tests for common ANA s (ridiculous).and CT scan showed enlarged lymph nodes.My doctor gave me a steroid injection the response was miraculous and my symptoms chart was completely reduced, and having seen that decided to give me immunosuppressive azathioprine as well as the hydroxychloroquine , the hydroxychloroquine on its own helped a bit but no where near as much as the combination.I say the proof is in how much better I am now.I know just how terrible it is feeling like you do.Maybe ask if you can try steroid injection to see if symptoms are steroid responsive.Don't give up I really hope you get some help if the current doctors can't help you could ask for a second opinion at one of centres of excellence if your in England.Good luck.Jane

Lily77 profile image
Lily77

Dear Anji, ulcers (mouth and nose), poor teeth, feverishness, night sweats, pain, dry mouth, sensitive skin and low mood are all classic lupus symptoms. Asking why do you need a label seems unhelpful to me when clearly need to feel more in control and much better. I agree with Jane 1964, you should have been offered an injection or intravenous steroids if you are in crisis and a second opinion may be necessary. I had to change to get just this. Jane is also right it can take a couple of goes to prove the bloods. You are obviously fighting in all fronts, being very courageous but it seems that you would benefit from more proactive help. Wishing you the very best, Lily

ange726 profile image
ange726

Hi Anji

I felt so sad reading your story. What a hurrendous time you are going through. I am slowly finding that once one thing goes wrong with my body, lots of other things start to fall apart.

So so frustrating when your nurse doesn't understand the reason for wanting a diagnosis. I was tearing my hair out waiting for test after test results. Once you have that, you focus on what you need to do to make life a little better.

I hope you feel a smidge better getting your frustrations down and I know everyone on this site are here for you. At times having a good cry and venting can help.

I know things seem sodding awful at this time but I would suggest to keep pestering your GP and rheumy nurse to get answers. Keep researching and ask advice on this site and hopefully you will get some answers and some relief soo.

Sending huge hugs and healthy thoughts to you. Xxx

KayHimm profile image
KayHimm

I hope this is helpful. It is really difficult for people not to know what is causing them to feel a certain way. That is what a diagnosis does. But, unfortunately, some illnesses do not manifest in a way that allow doctors to know what is happening. Infections can look like an autoimmune process, as an example. I wish your doctor had validated your need to have a diagnosis. However, she needs to explain to you what she does and does not know and why she is proceeding with the treatment. If a doctor asked her what she suspected — not what she is certain of — what would she say? The way my doctor described it to after my consultation with the rheumatologist over thirty years ago was “you are showing a tendency toward autoimmunity and we will be watching you.” That makes a lot of sense. I had every test available at that time, and they were seeing how the illness developed. I was also told it could be limited, as I was feeling better. In your case, you are being treated with medication so it seems your doctor is leaning towards something. Labels are important but when we can’t have a label the next best thing is asking a doctors for their sense of things. And keep in touch because illnesses evolve and your doctor needs to know of any changes. Hope they get a better handle this for your sake.

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