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

[Dottie11 in reply to Wendy39]

Oh yes of course. No wonder you are run down. I found my HRT drove my lip colds sore more too. Weird. Hope you feel better soon. xx

[DogHospiceMom]

I need to take adderall or I cannot function

[Wendy39 in reply to DogHospiceMom]

Hello.

I’ve never heard of that? Is your fatigue all lupus related or a combination of causes?

[DogHospiceMom in reply to Wendy39]

I have both lupus and Sjogrens. Also MTHFR, but the fatigue is the worst.

[Paprika60]

Hi Wendy, so sorry to read your post. Your situation is tough and tough. Having read your list of medications and supplements, I would like to suggest looking into other brand for magnesium. Basically, Sogar products contain too much fillers and are not worth the money. I changed to Cytoplan and Higher Nature product long time ago. There are many other good brands. It is worth having a few consultation with a naturopath (with good reputation and long experience only) for guidance. I too had terrible fatigue, terrible insomnia and Lupus symptoms including brain fog. I have gradually reduced prescription medications down to a minimum. I never touch steroids now because that's what triggered insomnia. If I took everything doctors have prescribed over the years...it would be too many! With good diet and kindness to yourself accompanied by good quality supplements, with patience you will get better. Being kind to yourself will help with stress and anxiety that comes with it. If you can reduce stress, your body will be kinder to you too.

Hope you feel better soon. If you need suggestion for specific supplement for insomnia, please let me know. Take care and stay safe!!

[RosieA]

Have you had an opportunity to discuss this with anyone from your medical team? MTX used to completely wipe me out. The only time I had an accident in the car was when on it. Nothing terrible but it shocked me and I realised I wasn't safe to drive. I finally had to come off it. It may be that your tolerance of one or a combination of drugs may be impaired for some reason. I do hope you manage to get this under control. Keep safe. xx

[honeybug]

OMGOODNESS sweet Wendy 🥰

I cannot give any advice because like you I have my extended bouts of narcolepsy like issues with painsomnia and mega fatigue. I go days without sleep then days I can’t stay awake been sleeping in my wheeledchair for over a decade now. I no longer have the stamina to seek answers so I just endure it all.

I’m soooooo very sorry love that you are going through such a difficult time. I’m sending you gentle comforting hugs.

I just said a special prayer for you that includes your family.

Try to stay positive. If possible try and have a friend do your driving for you until you get some answers and aid.

Remember I think of you often and give you my support and empathy. Best wishes for everything especially regarding your health.

Love and prayers always.

EJ 🤗♥️🥰🙏🕊🌿🦋🌸

[MrsMarigold]

Hi Wendy. I just saw your post and I want to give you my experience that may help. I was not diagnosed with lupus until 2016. I spent an entire summer sitting in a chair with unbearable fatigue and brain fog. I was menopausal so I went to my gynecologist. My hormone levels were taken. When the results came in she called and said come into the office. She counseled me on hormone therapy. I had zero estrogen. She gave me an injection of estrogen to jump start the therapy and within 3 days the transformation was incredible. I take progesterone at night. Some progesterone products contain soy. If you have a thyroid condition (I do) this can make you extra tired. Most of the other meds you take cause fatigue plus we have lupus. I’ve become firm now in my decision to stay at 31/2 mgs of prednisone. If things don’t get better I will up it daily to 5. At 67 years old I want to enjoy my grandkids.

I think you are too hard on yourself. I raised my kids knowing something was very wrong but could not get a diagnosis. It meant letting people help a lot with driving my kids and missing out on a lot of sports with them years before diagnosis and after. Having kids ; being a mother is one of the greatest blessings in the world. We also are blessed by allowing people to help. I hope you can do this. Your children I think are old enough to understand how much sleep you need? It helps to develop a plan for them while you nap whether it be morning or night. For example, after I picked my kids up from school I was done in. That is when I began to give them an allowance for the list of jobs they did before I woke up for dinner. Most times they did their jobs and homework. Point is, we had a routine and they gained more understanding. Wish you the best. Lupus steals my energy every day.

I’m not sure there is any one medication that helps. But other people do! MM