Frustrating Lupus

[Da_vinci]

Hi everyone, I have been reading lots of posts Lupus related, reading patients stories and symptoms to see if there is anything I missed to see.My Lupus has been quite active lately, sun light has a big role in triggering symptoms. Working in a building site is not helping either so I’ve had to take 4 weeks off whilst trying to be seeing by a good dr, (with a good dr I mean someone who understands Lupus) that has been a difficult task, find one good dr that does not ask for 300£ for appointment.As my symptoms were worse I called the hospital dr (rheumatologist) to put him aware of this at the same time I asked for an appointment just couple of days after I’ve had to call an ambulance due a high blood pressure of 180 sys. At the appointment day, dr just checked quickly my hands, heard my heart and prescribe me with antidepressants… yes… antidepressants! I am still wondering why? Perhaps my anxiety?and he did not wanted to check my blood pressure, even though I asked for it and put him aware that before going to the hospital my blood pressure was 169 sys. Apparently I had to go to ER for it and blood pressure needs to be above 180 sys… wow! Gp’s requested me to complete a blood pressure diary for 7 days, even though they know I have SLE nephritis.After that I did lots of blood pressure checks myself as I got a monitor blood pressure, but to be sure about it I went to a pharmacy and ask them to do it for me in a daily basis for a week. They noticed that it was always high so they wrote a email to the Gp’s telling them that I need to be seen asap as they strongly recommend tablets to help to reduce the pressure.At the end I called several times to get an appointment somewhere else so I went. Dr checked my blood pressure and the dairy, she searched for my medical history and after couple of  more checks (urine test, which showed a ++ protein loss) she prescribed me with Losartan. It is funny cause two years ago I used to take two different tablets for my blood pressure and for some reason one of the previous drs has told me that “I don’t need it anymore” my blood pressure was between 150 sys - 170 sys most of days, migraines that seems to be for ever, low back pain and stiffness, brain fog, nausea and stomachache, neck pain and stiffness with that odd feeling of numbness and pain focused exactly behind my ears; knees aches that comes and goes and of course, fatigue; anxiety, frustration and depression.As I am the only one working at home, I feel stressed like, “I need to be healthy as soon as possible to go back to work” but that only make things worse.I am on medication for my blood pressure and lupus. But my strengths are not the same, I feel a lack of air 5 minutes after doing heavy works, my knees still hurts, migraines still comes and tiredness; perhaps weather has a big role in all this, the physical work and of course the frustrating feeling that comes along side this episode. The last frustrating thing is people around whom doesn’t believe me cause “I look healthy” and cause I have been depressed and I cry easily I have been called a “freak” among others names. I am working again, I feel “better” but yet I feel like I am walking over the same edge again but… I need to work as I am the only one who works. I would like to find something different to do for work, but I don’t know what. I feel a massive fog in my head sometimes and the only light I see as a work is this one as my daughter needs me.I would like to find a good Lupus dr.If there’s any where to look for a job for people with chronic illness please let me know.I hope you’re doing good, I hope you find a mirror of yourself in this and I hope that as for me it helps you to makes you feel less lonely.

[Spanielmadlady]

Who diagnosed you with LN? I have class 5 LN and see a kidney specialist every 6 months. What meds do you take for lupus as you should be having regular checks.depression and anxiety are common in chronic illnesses so its not odd thats he prescribed antidepressants. Food intolerances are also quite common especially dairy and gluten so maybe look at your diet to see if you can find a link to your stomach issues. Dairy turned out to be the cause of my stomach issues.you need to be covering up from the sun all year....factor 50 ,hat,sunglasses long sleeves and trousers etc.stress is a major contributor so you need to keep that to a minimum but most of all you need to be pro active with health care professionals and keep pushing...keep asking for referrals.if you have a partner maybe they need to take some of the pressure off you and go out work also especially with rising costs.Google the spoon theory and share it with those around you . Try not to take any notice of what others say they are ignorant and weak for name calling.i let negative comments and trolling go right over my head .you are stronger then they are because you live every day with a chronic illness ...I bet they couldn't .Good luck and be kind to yourself.x

[Da_vinci in reply to Spanielmadlady]

Thanks a lot for your reply, thanks. I’m on diet, no sodas or sweets only black chocolate 75%, lots of vegetables, broccoli, soups, exercise, drinking plenty water, and more. Stress wise it is a bit difficult to no get stressed. But I’m doing a lot after all.

My Lupus SLE was class IV and my last treatment for it was 6 months of chemotherapy, my medication now is Hydroxichloroquine 200, lanzoprazol, prednisone 5 mg and losartan 50mg.

Apart of that I add up the diet and exercise rutine.

I suppose to have an answer from the Lupus specialist at some point as the referral letter has been sent to him, yet I am waiting for an answer.

I do not know what else to do about that, Perhaps call the GPs again and ask them for it?

Again, thanks a lot 🙏🏻