Has anyone been through the menopause with lupus? Can you give me any pointers?

Philpotts

Having been diagnosed with lupus since 2015 it has been managed well with varying doses of steroid. I am 51yrs, the last year has been pretty dreadful, Covid caused me a great deal of stress and anxiety, on top of that my sister who lives abroad came close to death on 2 or 3 occasions due to bowel cancer complications, I then started getting proper menopause symptoms. I work in hospitality and the lockdown/return to work was overwhelming at times. I did a remote 6 session course of CBT which has helped with my ever worsening health anxiety. I now find I am having a very painful flare up which has been present for about 3 months and not abating. My rheumatologist says I should up my dose of Prednisolone from 7mg daily to 10mg but I'm always concerned about the long term effects and it's always difficult to reduce/taper. I feel I'm under the microscope at work because as mentioned, the return to work overwhelmed me and now I've had my HR manager and Ops Director sit me down to say they want the old me back and that "I should try to be happier". Because of how i'm feeling physically and mentally, I haven't got the fight in me to address this. Although, after having a meltdown with a friend recently, she suggested I do tackle this. My work is not affected but my mood at times is (although never when customer facing), due to the pain I'm in. I suppose I wanted to know if anyone else is has had to get through the menopause with lupus and any pointers - dietary or otherwise to get my life back on track. I used to be a pretty tough personality but now I'm forever in tears and don't recognize myself at all. X

janer1967

Hi and welcome to the community 

I am sorry to hear about your situation there are other members who suffer from lupus so hope they can help you 

Having been through the menopause myself the mood swings and crying are quite common affects

Did you explain to your hr manager what you are going through at least with them taking to you shows they are concerned and hopefully they can support you through this 

Cher_Alumni

Hello @Philpotts and a big warm welcome to our community, I'm sorry you're going through such a rough time   

The peri-menopause, and menopause itself, are women's issues I believe don't get enough attention and I totally understand how fluctuating hormone levels alongside having lupus could make you feel sad and anxious.  Bearing in mind your sister's health and the impact of covid-19, I'd say you are doing incredibly well and good for you on accessing that cognitive behavioural therapy (CBT).

I've been on Prednisolone a lot due to having an auto-immune condition and can appreciate your concerns about the long term side effects.  It's definitely a conversation to be had with your Rheumatologist so they can address particular worries you have and talk through the advantages/disadvantages so you can make an informed decision.  

And blimey, the attitudes you've encountered at work were most definitely not helpful and indicate a lack of understanding about your conditions.  If ever you wish to address this, please let us know but also be mindful that if you don't feel well enough to work, you shouldn't go in or alternatively you are entitled to Reasonable adjustments to make work easier to manage.  

In relation to negotiating the menopause whilst having lupus, is this something you've broached with your GP?  If so, what did they advise?  As I've no personal experience/am not medically trained, I'm unable to offer specific advice, but you might find visiting LUPUS UK useful.  

Also, be sure to check out our Invisible impairments category (where I've moved your thread to) to find and read others stories.  I've tweaked the title of your thread to help others spot it and hope we can offer some comfort during this difficult time.  

Take care and try and treat yourself today 

Philpotts

Thanks for reply. They (work) are fully aware of everything. They recently moved me to a new site which is proving physically harder, however, they and I think i needed a change - had been at my other site for 8yrs and really wasn't pushing me mentally anymore. It just seems like they are furtively asking other team members about my mood/performance and this is now making me paranoid on top of everything else. I need them to back off basically, even though I'm told and I do believe to a point they care about me. I have reduced my days at financial cost, I just feel I haven't been given the time to work through everything without it being dissected under a microscope. They are focusing on the 2% of me that is broken rather than the 98% that is still doing a good job.

janer1967

I understand how you must be feeling that they are monitoring you but that can also be a positive to make sure you coping 

Philpotts

Yes, I think you're right, I'm just struggling to find any positives at the moment. GPS and rheumatologist don't really connect the dots with each other. Lupus UK says I should categorically avoid HRT (which I am taking btw) due to heightened risk of Cardiovascular disease, yet my rheumatologist said he doesn't believe that to be the case?? Think really my best option is to increase meds in the hope the pain recedes which in turn will help my mental state. Thanks for listening!

janer1967

Your welcome anytime