Fatigue has reached a whole other level, after 10.5 years. Scared it’s narcolepsy….

[Wendy39]

Hello everyone

I hope this finds you all as well as you can be.

I’m 10.5 years post diagnosis now. Thought I largely had this disease under control. With meds and pacing and life style etc. But my fatigue has been extremely difficult for the last 2 years and recently I’m worried it’s getting more severe.

I haven’t worked since summer 2016, so that I could manage my fatigue and save what little my energy I had for my family, my kids were young then, 12, 11 and 8.

Lupus has slowly come under control as my medication has increased. But lots of symptoms even between flares, even with mild to moderate symptoms.

Last rheumatology appointment was May and I was assessed as 0 on SLEDAI scoring system, with no bloods available. Rheumatologist declared I was the best he’d seen me, whilst acknowledging the fatigue.

My fatigue has been an increasing problem since July 2022. I had a 2 day trip to London and when I returned I had the biggest deepest cold sore on my lip I’d ever had. And I’ve had a lot. I found I couldn’t wake up in the mornings to see my kids off to school. I thought it would be temporary but this has continued. To add my awful mum guilt. If I woke naturally between 9-10am I could sometimes skip an afternoon nap. But sometimes I needed a lie in and afternoon rest / nap.

Last March I scared myself by dozing off at the wheel. I was extremely lucky that no other cars were around. Never hit anything and made it to the services for a nap.

Driving long distances are now virtually impossible and I am careful when driving in the afternoons.

However increasingly I’m struggling to stay awake whilst driving at any time of the day. Had orthodontist appointment for my daughter today. 9am. Left at 8.15am. Struggled. Literally fighting to keep eyes open. Then did some food shopping, got home 11.30am. Again a nightmare to stay awake whilst driving home.

It’s effecting my confidence driving. I’m scaring myself.

We live in a rural location and can’t rely on public transport. Driving is crucial.

I am now post menopausal (only recently) and have been on testosterone since March this year and started Utrogestan 100mg two weeks ago. My hormone levels were undetectable when I paid for them to be tested privately. So a part of my health picture.

For various reasons I have been under stress in the last few months and have needed to have more energy / be awake in the mornings. So I’ve stopped taking my 30mg of Ametriptyline at night. I think this has helped me wake up earlier. And I’m awake, as opposed to needing to dose and take a while to be able to get up. I have also been so desperate to sleep (insomnia etc probably lupus / stress / perimenopause / night sweats, I have started taking a good quality CBD oil 1,000g at night, 5-6 drops under my tongue before bed and that has definitely helped. I was on holiday for a week and I didn’t take the CBD oil (scared about customs and airport security etc) and I definitely didn’t sleep so well without it. I am sleeping better now and not disturbed so much but I’m not sure I’m feeling any benefit of this better sleep.

We went abroad for a week last week and I have taken a little short course of steroids to help cope. Plus we were fortunate enough to be all-inclusive, so for me no cooking, cleaning, washing or ironing etc for a week, although lots of preparation before for a family and tons of washing on our return. But all in all not feeling like the steroids are helping this brutal fatigue. 5mg at the moment but will be coming off now over next 7-10 days. So will have been 3 weeks in total.

Could this be just lupus fatigue? Or menopause? Or heart issues - I have some mild regurgitation issues? Or a combination? Could it be narcolepsy? Or something else?

I’m increasingly concerned about the strength of this fatigue and know I need to do something. I will be making an appointment to see my GP and contacting my rheumatologist but wondered what you all thought?

Thank you in advance.

Wendy x

Daily: -

MMF 2g

Hydroxychloroquine 400mg

Omeprazole

Folic acid 5mg

Vitamin D, a good iron supplement and magnesium - Solgar brand

CBD oil at bedtime

Testosterone

Utrogestan 100mg (progesterone)

Methotrexate - 20mg a week

[Dottie11]

When I go sleepy and steroids do not work as usual I often have an underlying infection grumbling also. Get bloods done and check your last immunoglobulins reading . Good luck. xx

[Wendy39 in reply to Dottie11]

Thank you Dottie.

Good shout!

I had a chest infection over Christmas. Then a UTI. Then an ear infection. So a few infections following on from each other. My ESR was the highest it had ever been over Christmas and New Year.

Last month or so a cough I can’t shake off.

With a lot going on, trip to the GP hasn’t been possible.

But I will definitely be trying to get an appointment now and will mention this.

Thank you! Always great advice here. Sometimes it’s hard to see the wood for the trees.

Wendy x

[Dottie11 in reply to Wendy39]

Your welcome. xx

[Wendy39 in reply to Dottie11]

Dottie

I have been thinking about this tonight and I’ve only just remembered that I had shingles too! Symptoms started at the beginning of June. How could I forget?!?

So I’ve definitely been run down by a series of infections and viruses.

Wendy x

[Dottie11]

Just another thought some on HRT flare their AI conditions. x

[Wendy39 in reply to Dottie11]

Yes. True. But the fatigue has been an issue for longer than I’ve been taking it. Will definitely add it to the list of possibilities though. Thank you.

[Treetop33]

My fatigue went to extreme after getting Covid. Often we have it and don't know it, or write it off as a cold or something else. But it has a systemic effect nonetheless. Something to think about maybe?

[Wendy39 in reply to Treetop33]

Treetop33

I read your response earlier and thought I’ll reply later. Been going over this in my head again and again. Only just remembered I had shingles recently. The fact I clear forgot shows how chaotic life has been. I did have antivirals for a week but it was very painful and I still have blisters/red marks healing.

How silly of me! Thanks for the prompt!! Lupus brain fog at its finest!

Wendy x

[Treetop33 in reply to Wendy39]

Been there, for sure. I upped my steroids and am on H1 and H2 histamine blockers. The H2 blockers alleviated my fatigue somewhat. But yeah my system really got messed up, and still is to some extent, after, like you, being in effective remission. Take care of yourself x

[DogHospiceMom]

I need to take adderall or I cannot function