Anyone else's Lupus muscle and joint aches worse during your period?

[Joanna098]

My leg muscles and arms feel that much heavier and ache FAR more during this time. My knees have always been painful during periods but now with lupus, it is that much worse. Anyone find the same? x

[iffa28]

Hi there! I never had that problem for the past ten years. But since you are going through this, i suggest you consult your doctor. Maybe the periods are affecting the SLE

[Freckle1000]

It might be worth talking to your specialist about how oestrogen might have an effect on SLE.

[happytulip]

Yup 100% snap. Actually with me it starts 10 days before I finish my pill pack and continues to get worse and worse until about 3 or 4 days after my period has finished. My Rheumatologist says that oestrogen can fuel Lupus and make the symptoms worse. She suggested that I might want to increase my pred at this time but I find it so hard to taper that I just try and muddle through. My pain Consultant also says that any pain issue can get worse nearer your period.

My worsening symptoms as I get nearer my period are firstly fatigue which is like wading through treacle. Then the pain starts. It’s a never ending cycle. I tried to come off the pill but I need to be on it due to another medical condition. When I came off it as a trial it was a disaster. If you need to be on a pill it might be better to be on the progesterone only pill. The only other thing you could do is to increase pred by minimal amounts during your period but obviously discuss this with your Rheumatologist.

[Fennella02 in reply to happytulip]

Hy Hapoytulip, do you get obvious joint inflammation like swelling etc or is it more the extreme soreness of joints & muscles combined? Do your inflammatory markers rise at the same time! Xx

[happytulip in reply to Fennella02]

I'm not sure about raised inflammatory markers everytime but when it has been extreme both my CRP and ESR were elevated.

I also have had a low grade temperature too. I was hospitalised with it a couple of times, hence I know about the bloods.

I tend to get pain in my muscles and joints but only swelling in my knees. Delightful isnt it!!x

[sarahsch]

Hi Joanna098,

There is a known link between periods & sle symptoms.

Like Happytulip I notice it in the run-up to a period. I just tough it out, & take paracetamol if necessary, Volterol for the knees, but then it just depends how bad it is & we are all different. It's the brain fog that I find most disruptive.

Speak to your Rhemy about it if you need further help.

Sarah x

[Joanna098 in reply to sarahsch]

Thanks so much. Sorry what form of volteral do you take for knees? x

[sarahsch in reply to Joanna098]

I use Voltarol Pain-eze Emulgel rubbed into the knees as it avoid taking more tablets. It just takes the edge of the ache. They also do a 24 hr gel, but I haven't tried that.

As I say, we are all different. My symptoms are probably mild. I'm alright on the flat, but stairs can be difficult at times.

Sarah x

[Joanna098 in reply to sarahsch]

Great, I'll give it a go.

Thanks again x

[jdavies38515]

Definitely!

I see a slow increase in all my symptoms through week 3 and 4 and once my period starts I improve quite quickly. I’ve even started planning things based around it. If we want a day out or a night away I always make make sure it’s in the middle of my cycle.

It’s never been discussed in any of my appointments though? Maybe it’s something I should mention next time.

Good luck with it all.

Maybe I should add though that having said all that everything is still very unpredictable!!

[Joanna098 in reply to jdavies38515]

Thank you so much. I've started planning around it too! All the best x

[Leave-me-alone]

Yes yes, same here. Every joint in from hip to toe. And feel more tired before and during. The worse is and I don't know why I get two periods in one month.

[Joanna098 in reply to Leave-me-alone]

Oh my gosh you poor thing! x

[happytulip in reply to Leave-me-alone]

Its so important to ensure that smears are all up to date in us SLE patients, especially with breakthrough bleeding. I had a bit of this and it was just put down to me being me, but I'm glad my GP got me checked x

[Fennella02]

I've just started watching for and researching the cyclical link and actually posted a link in here yesterday about the potential for us to be having allergic Autoimmune reactions to our own hormones. It cites fibromyalgia and arthritis as just 2 of a longer list of reactions. My own hormones are all over the place ATM and so are my pain levels and fatigue. Despite having had Lupus for decades, I've never considered that there may be a link but it's not impossible.

ncbi.nlm.nih.gov/pmc/articl...

[Leave-me-alone in reply to Fennella02]

Thanks for the research, helpful to know. Is horrible, because I can almost time pain and fatigue. Each month. I am trying to work around my periods.

[Joanna098 in reply to Fennella02]

Thanks so much, very interesting-reading the link now x

[imzi]

Yes!! I was thinking that today! I’ve been in my bed the full day because my legs and knees are killing, it’s awful. Yesterday I was limping because the pain was so bad, it’s the first time I have experienced the pain this bad during my periods.

I hope you are ok

I.x

[Joanna098 in reply to imzi]

Poor you, this sounds similar. It's a crippling ache..

I have found it helps to start taking Ibuprofen a couple of days before it's due -it improves my 'normal' menstrual cramps at least, having it in the system already and I think it helps the legs but it just means I don't have full on menstrual cramps on top of the extra bad lupus leg pains - no idea but just in case it helps you too to start taking painkillers before hand

Also, I have just ordered an electric under blanket and I have a body pillow/memory foam support cushions in bed which make it a little more bearable on my period-just in case you are newly diagnosed or haven't looked into these which you probably already have. I'm excited at the prospect of having the electric blanket for next month as I am sure it will help!

I'm sorry you've had such a horrid day and I can really relate...

All the best x

[imzi in reply to Joanna098]

It’s horrible. I was off on annual leave this week but didn’t mange to do anything due to the pain.

I can’t take ibuprofen due to stomach problems. I will start taking pain killers a few days before thank you. I also use a hot water bottle which seems to help.

I haven’t actually looked into memory foam pillows or the blanket, it will be something I look into now.

I have my rheumy appointment next week I’m going to mention this to her and see what she says.

Thank you for your help, I hope your feelings little better.

I’m more than happy to help x

[Joanna098 in reply to imzi]

Oh and I sometimes wear those flight compression socks just in case you haven't tried these.. I can stand a bit longer if I wear them..

Hope you have a better day tomorrow. Sorry to blabber! - it's just so nice to be in contact with people who empathise, with similar pains..x

[Leave-me-alone]

Talking about flight socks, just wanted to share something funny. I brought a pair of jeans leggings. But brought the wrong size. A little on the small side. Can get exchange so decided I will get some wear out of them. It fill around the top part no problem, but a little tight around the whole leg. But you know what it flat kind of nice I didn't get swollen legs after long walks. Almost worked like a flight sock. 😂. Please don't try it a home, I am not sure if I am just trying to make myself feel better for buying the wrong size trousers. Embarrassing.

[Joanna098 in reply to Leave-me-alone]

Haha no that's a good tip! x