LUPUS UK

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Lupus “Fatigue”

Hey everyone,

So I’ve been on hydroxychloroquine for about 6 months now, while I feel it may have helped with my reducing my rash, joint pain, I have been experiencing only what I can think is fatigue?

This is a piece from my diary : “Today I feel Wooly headed and completely drained. Drained doesn’t even begin to explain it, I feel like my batteries are completely empty and I just don’t have the energy to fill them up.

I did a workout today (first proper one in over two months) and I felt exhausted before but during the workout my muscles started cramping - during squats my inner thighs started cramping.

Then I got home around 11 and just felt completely wiped out, my muscles started cramping where I’d worked them - like an intense DOMS feeling, I had a nap but got woken up by a sore throat and joint aches.

Doing my evening classes I was completed out of it I had the worst brain fog and again just feel completely wiped out, my body aches all over and I have a sore throat and now a headache. “

Does this sound like fatigue ? What do I do to ease it ? I am a Pilates instructor and have even told my dermatologist that it is starting to affect my work.

Any suggestions, advice would be so appreciated !

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Penelope-Pipin

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Hydroxychloroquine

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Sure does! I get that sore throat too. One thing you might try is to work up very slowly. If this was your first work out in two months, your body was not used to that level.

Really understand your frustration. Makes me want to cry reading your post. Fatigue can be life sapping.

xxK

Thank you Kay, I feel like crying 24/7 because I feel drained all the time, but it doesn’t matter how much I sleep or don’t it’s still the same. I think I’ve had two days where I felt “normal” in the space of 6 months:

Thank you for your support it means a lot x

Kay, Life sapping is the perfect way to say it.

Healing hugs.

Have you had your blood tested for anaemia, I have started to take vit D which has made me feel a bit better, ask the pharmacist about the correct dose you should take

I want to phone the dr to ask him to do a full blood count. About three years ago they found I had very low ferritin levels so I wonder if that may be the case again. On top of lupus “fatigue”

I wouldn’t be surprised,good luck hope you feel better soon

Thank you x

That horrible flat battery feeling sounds like post-exertional malaise - very common in lupus, fibromyalgia, CFS and also long Covid.You really need to try and stay within the envelope of what you can do and take things gently. Otherwise your body will tell you in no uncertain terms that it's not happy! Sounds like you see a dermatologist - but do you see a rheumatologist as well? Most of us do.

Are you getting enough sleep - that can be a key issue to address. Maybe you have low vitamin D levels - also common when we need to be careful in the sun. Personally I find avoiding caffeine is helpful - that avoids energy peals and troughs.

The Lupus Encyclopedia by Donald Thomas is a brilliantly helpful book if you can buy it or borrow from a library.

Hope you feel better soon!

I thank you Mary, yes I am with a rheumatologist too. I am waiting for my next appointment with them. The Dermatologist says he thinks they will need to up my dosage of medication to try help with my fatigue and other symptoms. I think because I’m still new to all of this I don’t really know what’s fatigue and what isn’t. That’s why I kind of know that when I fee fluey and have a sore throat it’s more than likely fatigue, rather than normal tiredness.

Thank you for the advice I guess just talking about it with people who get it helps too! Makes me feel less crazy !

Help Penelope-Pipin. Great name. Well my dear I think you can take the word “fatigue “Out of quotation marks as lupus owns the word fatigue and we live on its real estate🤷‍♀️. I feel as bad as you described most days and that’s not even a flare. However, it is wise to check your bloodwork. If all is normal you may want to change medications although I see you do not have a rheumatologist? It would be wise to have a Dr. trained to guide you through this disease. I love Pilates and I hope you can continue with it or improvise enough that you do not overwork your body. My own body has no register for excitement, exercise or regular old fun. Example: my

Toddler grandchild came over today for an hour. We got in the pool and I floated her merrily around laughing and splashing. As soon as we got out I felt my glands swell, sore throat kick in, muscles liquify. It’s supper time in USA and I’m off to bed. As Kay said above it makes us want to cry. Best Regards, Titters

Hey Titters Thank you I do see a rheumatologist as well I’m just waiting for my next appointment. The dermatologist thinks that they will need to up my dosage.

I am just so grateful that my rash has seemed to stay under control. As mentioned above I am just trying to navigate all of this and I guess understand what fatigue is and feels like so I can adjust my daily routine when and as I need to.

It’s all so foreign seeing as 2 years ago I was in a ballet company dancing 8 hours a day !

Hello. I, too was in a ballet company in the US. I now live permanently here in the UK. When you can't dance and feel free again is so sad. I've had SLE for over 12 years now so I've gotten past the worst of the grieving. The fatigue is something a healthy individual cannot understand. I'm here for you!

Thank you so much x How did you grieve the loss of dance ? I’m finding it so soul destroying

My initial grief came as depression and sadness. I felt useless. Time is a healer. It's been over 12 years since my diagnoses but I had to not look back to who I was but create my own self worth. It's kind of circular as well. I have found that I still grieve but in smaller chunks but it doesn't last as long. I now have enough knowledge and self compassion to be able to advocate for myself. I truly believe that learning as much as you can about your illness and health is a super power! Kind and gentle hugs to you 🤗

Cramping isn't fatigue, maybe check your magnesium levels? Are you or have you in the past taken prednisone? Prednisone withdrawal syndrome can also cause fatigue. It's something everyone strugles with and you will have to try finding what works for you to diminish it. Is it inflamation, prednisone taper, depression, lack of excercise, lack of some vitamin or mineral,...?

Cramps could be low magnesium, sodium or zinc I think. I’d definitely look into vitamin/mineral deficiencies as they can cause these symptoms. I found the autoimmune protocol helpful for fatigue (I’ve done my own version over a longer period because I lack the discipline to do it properly 🤦‍♀️) - might be worth looking it up x

This is what I want to bring up with my rheumatologist when I do finally get in to see them again. When that is I don’t me know.

Hi @Penelope-pipin

I have been taking hydroxychloroquine for 4 years, not prenidsone, and I have the same problem as you.

My ferritin levels are very low and I am on liquid iron every day (20ml) and also vitamin D. I still get tired and headaches and I think everything has got much worse since I have been on Covid19.

My dermatologist is also the one who is investigating what could be wrong, the rheumatologist has disappeared and it is the vasculitis team who are following me up.

I don't know about you, but I have also started to notice changes in my vision, more blurred, sticky eyes and sometimes like dizziness or a ringing in the ear.I am planning to go to the optician to check that there is no toxicity and everything is fine.

Before, during and after my periods it is horrible. I have a couple of days a month when I feel better, as you say. They do tests and sometimes I have thrombocytopenia, sometimes very low ferritine, sometimes leukopenia, sometimes low levels of phosphate and albumin in the blood....but always low C4 levels. It's like the parameters change very quickly from good to bad and vice versa.

I'm beginning to think that it could be a problem of malabsorption or that one of the organs is not processing the proteins properly. My next follow-up is next week, I'll let you know if I find anything new.

Best wishes 🦋🦋💚💜🦋💐

I’m sorry to hear you are experiencing the same thing ! I hope you get the answers you need and yes please keep me updated !

Naladog -

Have you thought about seeing a neurologist for your symptoms of dizziness, ringing in the ears and headaches? Where is your rheumatologist?!

Hope you get some answers.

Xxk

Thank you KayHimm

Thank you for pointing this out.and your interest.

This is one of the requests I have prepared to make to the vasculitis team on my next follow-up the 29th.

The rheumatologist I had was consulting at Adenbrookes' and at private hospitals also in Cambridge. But since I have been with the vasculitis team I have not had another appointment with him. Maybe this is the procedure and I don't know.

Best wishes💖

Monica.

That makes sense, then. It is not clear to me how vasculitis is handled. It sounds like you are at an academic center where they have a group of doctors - maybe trained in immunology, rheumatology, neurology - who handle a patient with vasculitis.

I am sure they will be open to a neurology consultation if they feel it is necessary. It is all confusing. The vasculitis experts may say cerebritis always has more severe symptoms like change in mental status. Please let us know what they say. My neurologist says lupus cerebritis is very rare - think we have a few members with it - but the brain is affected in many other ways.

Stay in touch.

XxK ☘️

Morning. The fatigue is like nothing I've ever experienced before. It is like literally hitting a brick wall. My fatigue is with me every day; starts off low grade, I wake up feeling like I haven't slept, I don't sleep very much at night, btw and then just builds up the more I try to work through it and then when my heart beat does funny stuff I have to stop. I'm a yoga teacher (3 times a week) which I love and I also care for my brother with moderate learning disabilities because my parents died some years ago. I work on a must do basis; know which days are going to be the worst - Saturday, Sunday and Wednesdays are very demanding both mentally and physically, but I must do them unless I really can't move. So when I come home, I just take myself off for a little tv watching or a lie down until the physical bone aching eases and start again. On these days, I hate me, Lupus, but then feel guilty because it hasn't affected my organs, but my osteoarthritis has become much worse which is ironic because of the yoga teaching, so I slather myself in voltarol joint and muscle gel and get through the classes. The yoga does help though. I had my blood tests repeated because I thought I was literally going to die, I felt beyond awful. Guess what - all fine for me. That's Lupus, I'm discovering. The worst bit though is I've lost me. I'm just too fatigued to care about much; I used to look after me so well, shower every day, lovely bedtime routine. Now I just crawl into bed, sleep until the pains in my legs wake me up for more Voltarol and repeat. I guess what I'm trying to say, is to pace yourself. Just give into the fatigue when you can. I might do a yoga class because I WANT to, but when I get somewhere where I can rest and that has been the car, I give in for half an hour, maybe do another couple of things and then rest again and repeat. It's not ideal, but it gets me through and then on the days I HAVE to give in, I do. Btw, I have hit my 12 month proper diagnosis of Lupus next week and my 12 months of Hydroxychloroquine next month. Have a super, sunny (watching from the window) Saturday before I sort my brother out 😉. Namaste 🙏 🧘‍♀️❤ Lupus Lovelies xx

I can relate to so much of what you’ve said 😔as I’m sure many of us can . Thank you for the voltorol tip that is one think I haven’t tried !I slather my legs in magnesium oil .. sometimes it works sometimes it doesn’t . I’ll never understand why the illness can make you so exhausted but then you sleep so bad . I’m guessing the underlying chronic pain causes restless sleep .

I teach Pilates and I know it helps but wonder sometimes how much longer I can do it . Oh to win the lotto !

Sending you a healing hug and thank you again for your heart felt post xxxx

I think you will know when you can't teach Pilates any more, but I'm sure like me, you like to see other peeps taking care of themselves..... 🤔😉😳😁💋

Yes that’s what keeps me going but I’d love someone to wrap me up and take care of me for about a year 😉😘🙏xx

You are incredible. You are so right the fatigue is like no other. Truly incredible what you accomplish despite it all.

🧘🏻‍♂️🤸🏼‍♂️

Thank you. I appreciate it. Just given into today's fatigue with cheese, biscuits and coffee whilst completely howling 😭(as predicted earlier) at the final episode of The Split. Brave face (although the eyes are really puffy) will be on by 8pm when the husband is home. Luckily?! my eyes are also affected by Lupus, so I won't have to admit to being a woose. 🥴😉😁

Now that would be nice. My treat later today is the final episode of The Split. I'm looking forward to the full blown howling when I can let it go; feel sorry and then guilty all in one afternoon. The brave face will be on by the time my husband returns from work! 😭😳🥴😁 xx

Naladog -

Have you thought about seeing a neurologist for your symptoms of dizziness, ringing in the ears and headaches? Where is your rheumatologist?!

Hope you get some answers.

XxK

Hi PP 🤗I'm sorry to hear what you're going through right now..am glad u posted coz these threads r always interesting to follow. No two lupies are the same n yet we all experience the same fatigue!! I liken it to being caught in a spiders web..fine gossamer threads but strong so strong..the more I struggle against it the more wrapped up I get!! I've learnt the hard way to just try to relax, accept it isn't happening today..coz if I fight it I'll just get weaker.

Sounds like you were superfit before Lupus (unlike me)..you will probably have to adjust your lifestyle as we all have to to accommodate lupus symptoms..you will find a way.

I'm glad to hear you're keeping a diary n upcoming rheumy appt I think it might be time to tweak your meds n maybe add another..your rheumy will decide what's best for you.

I'm glad to hear that the hydroxy is helping..you're in a better place than you were a few months ago..keep on keeping on...BUT rest when you must 💜🌈😽😽xx

Thank you so much xx

Hello P.Pipin, I have been living with all those symptoms you have described for the last eight years and interestingly, ever since I was put on Hydroxy 400mg daily. I have managed to reduce it to 300mg daily for over a year now without my doctors' permission. I have repeatedly reported these symptoms to my vasculitis doctor and also rheumatologist but both don't seem to attribute Hydroxy to these symptoms. They maintain "all part of your disease". But I hardly had fatigue, brain fog or balance issues and etc before Hydroxy. Sometimes I am very tempted to just stop it. But then the terrible joint swelling and horrifying hives and blisters will return. So I feel trapped. I just want to let you know that you are not alone. But do please take good quality supplements with good diet. I take vitamin D plus K2, Magnesium without which I could not sleep. Also astaxanthine (strongest antioxidants). And I have become a vegan more or less in a hope to eliminate inflammation among other reasons. I am praying for the day when I can get off Hydroxy safely. 😅 Hope you get good rest and feel better! 🦋

Thank you so much xxFunny that you have only experienced these symptoms with hydroxy

Have you checked out your serum vitamin B12 levels?Low levels are associated with ataxia, muscle pain, depression, fatigue, dizziness and giddiness.

Vitamin B 12 and folate levels are often missed.

Hello Penelope. For your Fatigue I would talk to your Doctor could be Thyroid problems, Plus Muscle pain and Cramps could be caused by Dehydration and lack of Calcuim and Magnesium. I wish you Well.

Hi Penelope, sorry to read about your problems here. I've been on hydroxychloroquine for just over a year. Like you, it got rid of my rash and so far my joint pain is less severe than before I started hydroxychloroquine. I started these meds at the maximum dose before reducing down to 1 per day, then 1 every other day. I take mine after a meal close to bedtime as it works better for me. If I take it too late I have trouble sleeping for around 2 hours. Since my dosage was reduced down, I have a continuous week out of a month where despite sleeping, I wake up heavy, lack energy and feel exhausted and have no control over my fatigue so I just fall back to sleep again for half to the entire day. I have not had Covid but did have a severe reaction to 2 different Covid vaccines back in 2021. One vaccine causing vision problems, cramping, joint pain, swelling of limbs, lymph glands plus sore throats. Before I started hydroxychloroquine, I could sleep for 18 hours during my worse periods and I had no energy at all on waking. I had periods where I wake up exhausted every day despite having slept the night before. It was so disruptive causing me to miss deadlines causing me big problems as nobody understood that I had no control over the fatigue. All my bloods, vitamins, etc. are perfect. I have full blood tests every 3-6 months. I get reviewed by my consultant regularly. My hearing was affected on the first couple of months on hydroxychloroquine but improved gradually now. I get on/off pain in my sides by my kidneys but tests say they are fine... Have you tried taking your hydroxychloroquine at different times to see if that works for you. I was told it is best to take it with a full glass of milk or a meal. I also mustn't take them until 4 hours after my Gastro-resistant tablets. Read the medical instructions in the box incase your meds are interfering with any of your medications. I do hope you find an answer as I know how debilitating fatigue is... Good luck XXX

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