LUPUS UK
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Help and support needed! Struggling.

Hello,

I was diagnosed with lupus and sjogrens around 9 years ago (aged 18). Since that time I have seen countless specialists, had my diagnosis changed several times and had far more questions than answers. My main difficulty is that my bloodwork usually looks okay so I feel like my symptoms are dismissed.

My main issue is the absolute exhaustion that I face every day. Every single day from lunch time onwards is a losing battle. All I do every day is count down the hours until bedtime.

I am fairly certain that I have sjogrens syndrome and in a bid to get a diagnoses once and for all I have booked a private appointment with Dr Price.

The last few weeks I have been off work with absolute exhaustion. My steroids were doubled and after a few days of feeling better I have been struggling again. Since Tuesday I have felt terrible with chest pains, a fever, swollen glands and then the last two days I have had swollen ankles too. I'm wondering if this could be an infection or a reaction to the increase in steroids?

I feel so rubbish and lost. I know I need to accept that my life is a struggle and make long terrmchanges ie. reducing work hours etc but it's so difficult. I am only 26 and wonder how I will face such a difficult future when I have no fight left in me.

My partner is incredible but I feel so guilty at how much this affects his life. I dream of having just one day where we could go out and enjoy ourselves without me feeling ill and exhausted.

Sorry for the long and rambling post. Life is tough right now and I wasn't sure where to turn.

Thanks for listening.

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Hello Jessie_2014,

Looks like you have had problems clarifying your diagnosis for a while? The only thought I have is to wonder what you feel is the most likely explanation for your underlying symptoms - after all, we are the ones who live our lives day-in, day-out. The doctors only parachute in for a few minutes and don't see or feel the reality of it...

Most of us struggle with the psychological/emotional side of things too. I still haven't come to terms with my illness - like you, it's the huge impact that profound fatigue can have on everyday life that has been the worst. And because it is invisible, I constantly feel like I have to make excuses and feel guilty for dropping out of everything. Although I have found that the "5 Ways to Well Being" is a pretty good way of keeping depression away, I have been wondering about getting some counseling or something lately as things have gotten extra tough lately. Is that something to consider?

Sorry I can't suggest much more than that. Hopefully your forthcoming appointment will have some answers x

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Hello,

Thank you so much for your kind words.

I'm so sorry you are struggling too. I have thought about counselling. I do feel it would benefit me but also worry that it is something else to fit in/have to attend when I already feel exhausted.

Fatigue is so so difficult to explain to others. I dream of having a social life or even just spending one day where I'm not counting down the hours until bedtime!

Take care x

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Oh my dear child, 9 years with lupus and sjogrens, thats tough. Wish I had a magic wand for you. Am 62 and problems started only couple of yrs ago, cannot imagine what it must have felt like at just 18!

The cautious advice if I may be so bold... is our bodies were made to heal in many ways. Bear in mind emotionally, mentally know it is possible. Spirituality too. Even say it to yourself every day!

We know the body can generate and release what it needs from within too.

Based on that please be very careful with side effects of modern medicines which throw lots of these functions out of sync.

I expect you already research each medicine that you take and keep a day to day diary record of every single "happening" in life and your body. If your blood works do not yet show a disease isent that good? more likely that your symptoms are a side effect of a certain drug possibly. Try and figure out which by reading up on literature and medical papers, journals etc and ask if you can reduce the dose to verify your suspicions....( as opposed to taking more new drugs to stop your new symptoms).

I took this approach with mine and managed to figure out which one did what to my body by isolating, reducing, monitoring, one at a time over many months of trial and error with my GP and RA's consent.

A cocktail of drugs to "fight every symtom" is a downward spiral in my opinion. I am down to just 3 drugs a day for my heart as opposed to 11 for heart and RA etc and feel the difference. Do get the occasional flare due to "toxic people stress" but much more manageable.

Hang in there and keep us posted. I love this forum as atleast we know others understand and we have people who care.

Strangers often support better than family. Family find it too hard to handle the pain of seeing you suffer.

xx

Rubina

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Hi Rubina,

Thanks for your message. You are right, this forum is a lifeline for us! Whilst being ill is rubbish it does allow you to see the good and kindness in some people. x

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Dear Jessie - you poor thing - you must feel wretched and alone. This is such an invisible illness except to us where it is writ LARGE. My bloods were same as yours. I did what you have done and got a private consultation. I have Discoid Lupus (more the skin) and Sjogrens. Sjogrens is awful! What meds are you on? The first thing they did with me was advise me to take Vit D and B12 in spray form under the tongue. Then I was put on Hydroxychloroquine which alleviated the symptoms a lot and got my strength back to a large degree. After a year - I met a lovely NHS worker who was studying Medicinal Herbalism as she had suffered since she was 12. I went to a registered Medicinal Herbalist in Jan last year and I have not looked back! Since I took his advice and cut out sugar I have improved in strength and spirit. Dr Price is renowned and I wish you luck - do let us know if you are on meds already. Also feel free to off load on here - you are not alone.

Have you looked on the Sjogrens website (BSSA.org) for a support group in your area? I run one in Surrey and it helps ever one of us in so many ways.

Let us know how you get on. Cas70

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Hi Cas70,

I am currently on hydroxychloroquine and prednisolone. Despite the awful dry mouth I have been told there is nothing they can offer. Does the B12 spray help? Can i buy this or is it prescription only?

Thanks for the well wishes. I really hope the appointment offers some help.

I am not currently a member of the BSSA website but perhaps I should join. It is hard without a diagnosis that is set in stone as I feel like I don't fit anywhere!

Jessie

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I found Dr Price very good and indeed she helped a great deal. She really takes the time to listen and has a vast knowledge of Sjogrens. I do know how tough this can be when bloods are not that helpful and then the added masking of steroids, wishing you luck, Lou xx

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Hi Lou,

Thanks for your message. I'm glad you found Dr Price helpful. I really hope she can help me too!

May I ask whether you saw her privately? I have paid for a private consultation. I'm worried this means that I will struggle to pay for any additional tests she suggests but I am desperate!

Thanks for taking the time to help me.

Jessie x

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Firstly I can relate to your feeling of powerlessness pretty well. I have been an autoimmuner since childhood but only learned that I had Hashimotos thyroid disease when I was 40 and only learnt that it was autoimmune when I was 48 and started showing symptoms of RA.

Now I’m pretty much decided that I’ve had Sjögren’s all along but mine is seronegative - so it needed a lip biopsy to confirm it a few years ago.

I saw Dr Price for a one off consultation last summer. I knew already that I had Sjögren’s and historic RA but wanted to find out if there were new meds being trialled - particularly for the very MS-like version I have. She was very good and gave me far more time than I was paying for and explained a lot - including that I’d actually be better off if my RA returned because it might open the door to further treatment options for me. I’ve also got my chronic constipation well controlled at last because of the suggestions in her letter. Hopefully my rheum will agree to letting me try an off licence medication she referred to that thins out the spit.

I do think that knowing what we have for certain enables us to look into the prognosis and accept our autoimmunity more easily. It’s still very difficult and Sjögren’s is a horrible, much underestimated and under recognised disease. But I’m glad I know I have it.

When I was waiting to be diagnosed with RA 7 years ago I used to torture myself regularly. I’d make myself climb steps when my knees were swollen and force my agonised wrists and knuckles into submission. My GP would despair at my insistence that until the rheum confirmed it I refused to accept I had it! As soon as I was diagnosed this foolishness stopped and I sought occupational therapy and physio and took Methotrexate with Hydroxy very compliantly.

So what’s in a diagnosis? A great deal if it’s the right one I believe. So I hope Dr Price helps you get clarity at last. Xx

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Xx ....I hate it when I see You, so young, having such a struggle. I was dx'd at 62..about 7 months ago.....I wonder how I will cope with fatigue ,rashes etc for the rest of my life...I can see what a daunting task it would be for You..only 26...I hope you get some answers and from your Dr Price. Much Love to You and your partner xoxo

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Hello all. A little update. I went to Swindon today and saw Dr Price. The appointment was very helpful and informative and well worth the 8 hour round trip! Still a long way to go but today feels like a step in the right direction after 9 years. Thanks for all supporting me when I needed it most! Xxx

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