LUPUS UK
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New here, hi.. I'm Heather

I am new to discussing my journey with lupus.. I was diagnosed at 29, after having a REAL stroke I thought was bell's palsy.. I have since been on a whirlwind of issues, that and after being a nurse for 16 years, will hopefully help anyone listening. We'll start with vitamin deficiency, I eat incredibly well and live in sunshine.. however, I'm ALWAYS very depleted of B-12 and vitamin D.. which i take shots of B-12 weekly and oral Vitamin D.. since diagnosis, my adrenal glands shut down, thyroid did the same.. I take armour thyroid, the nonsynthetic version now.. then the bigger issues started. I had uterine tumor, precancerous.. then total hysterectomy to prevent cancer.. then breast cancer, I had partial mastectomy and for now that's enough.. I keep up with all follow ups, etc. I refuse medication for pain although I hurt, every day.... I have recently gotten bioidentical hormone replacement implant with what I feel has shown minimal results.. besides hot flashes disappeared. I have gained 40# despite ALL efforts, I exercise and eat incredibly healthy.. I fight everyday, watch food I eat- no processed carbs, lean meat. I forgot to mention my total cholesterol through the roof too... and MD says it's because of lupus and I don't need medication. I have had SVTs because of vitamin depletion when I ONLY eat fruits, vegetables and lean meat.. even being a nurse at my level now I'm STILL astonished of the damage lupus can do.. does anyone have any good tips, things I don't know about? I have started an adrenal support $$$ vitamin as well as turmeric daily.. please, any input will help. I am single, divorced mother of an 8 and 9 year old, ADON of home health company.. stress will ALWAYS be a factor.. thank you

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Hi Heather, i'm new too and learning from this group. I'm sorry to hear you have had and are still having such a bad time. Hello and welcome x

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Hello and welcome, Heather77619,

That sounds like plenty to be going on with. Hope you will find that hanging around this site you will pick up on a lot of tips and shared experiences. X

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Hi Heather,

My own diagnosis is hypothyroidism tsh 0.01, sjogrens syndrome ?lupus. I was recently diagnosed adrenal insufficiency too.

I am a retired nurse. I am disappointed, how despite having a medical health background, which enables (us), to follow healthy eating/living guidelines, ill health symptoms continue. We know, ill health sees no boundaries, class, race, knowledge, age... nowadays, I am ever grateful that I do have some prior knowledge.

When my health failed 2.5 years ago, I went to a reflexologist, who told me, she felt my body was shutting down. I felt it too. I crashed big time!! My journey back to health, is a slow process. On going appointments, new friendships, ditching old relationships that were unable to accept, or be there, for a change in me.

I now take alternative supplements. Though, I do take between 1-4 cocodamol 8/500 (hate taking them but pain very bad, at times). I keep out of the Sun. I pace myself. I really, really, listen to my body.

Perhaps, more importantly, for me, I have thoroughly reflected on my life, and accept that I have to manage stressful situations better. For sure, nursing nhs damaged me (colleagues too). Understaffing was a huge issue! I loved my job. Alas, I finally had nothing left to give... I retired and collapsed within 3 months!

Slowly, I improve. Hardest part? Putting myself first. A giver, gives.... I am very, very careful nowadays, I give to myself, nourishment, love, respect, I pray, and with thanks, for good days, good friends, etc.... Only then, can I give to others...

I want to wish you well. Know you are never alone. Through joining HU, you will learn how others, with lupus especially, manage. This is a fantastic site. Nurse, or not, there are many, many, expert patients here. They care and they share. You are in very safe hands.

Good luck.

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Can't help with most of it - but I wil suggest you could spend your $$$, which I'm sure you can ill afford, in better ways than on adrenal support supplements. There are no supplements that will "support" adrenal function - just the suppliers bank balances. If your adrenal glands aren't working ideally there are several reasons - but supplements won't cure them.

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Hi Heather77619,

Welcome to the LUPUS UK HealthUnlocked Community!

If you do not chose to take medication for pain management, have you thought about discussing other options with your GP or rheumatologist?

We published a blog article on pain management which contains helpful tips and information that you can read here: lupusuk.org.uk/pain-managem...

It is vital to keep stress levels to a minimal as it can be an important trigger for lupus. Last year, we published a blog article on stress management and relaxation which discusses various tips and relaxation techniques that I hope will be of help to you:

lupusuk.org.uk/stress-manag...

We offer a free information pack which you can download here: lupusuk.org.uk/request-info...

Please keep us updated, wishing you all the best.

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Hi Heather,

Did you say you were diagnosed with Lupus and your doc didn't put you on any meds? Not even Hydroxychloroquine? This seems strange, as this is now considered the first line treatment for all Lupus patients. Maybe see a second doctor and look at more treatment options?

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You say you 'live in sunshine' but that can be very damaging for people with lupus. Many are sun sensitive and it can trigger many problems or make them worse so try avoiding the sun and see if it helps. search the site for advice on how to reduce sun exposure.

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Also please tell your doctor about any supplements you are taking. Some herbal supplements can trigger lupus and immune system reactions so care needs to be taken when self medicating when you have lupus.

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