Managing flare up advice needed, struggling to cope!

[TheresaIH]

Just wondering how people cope when their pain flares up? Do people have some kind of management plan to deal with them?

I’m yet to be formally diagnosed and am awaiting Diagnostic Laparoscopy.

I’m getting increasing frequency of pain flares in my pelvis, hips, low back and upper legs, they’re excruciating and really debilitating, lasting approx 5 days a month for the really bad ones (what I assume is cycle related).

I’m not able to perform my job properly, if I’m able to drag myself to work at all, and performing day to day tasks is a mammoth task. I feel like I’m double my age (I’m 39).

I’m permanently attached to my hot water bottle, TENS machine helpful for day to day pain, but not cutting it for the really severe flare ups.

My GP suggested increasing the Gabapentin I’m taking, and is writing an expedite letter for me. But I’d really appreciate people’s advice about things that help them, how they cope mentally as it’s really beginning to take a toll. I’m so close to breaking point, my usually well controlled BP is insanely high. I’m not sure how much more I can take.

Thank you for reading (if you got this far) xx

[Bespp]

Hiya. So sorry to hear about the tough times. Extra tough I should say. I went through a really bad flare that lasted 1 month and i was ready to buy a one way ticket to swiss to have myself checked out but then i recalled in needed a covid test and did not bother lol A terrible joke, but only emphasises the type of pain i was going through....

I went for a session of cupping and accupanture and finally feelt like partly human again. I dont think the winter helps really. Just wanted to share this is what helped me and loads of sleep

[GreenHelicon]

Hi TheresaI'm also going through a (bearable) flare up right now. I'm so sorry you are in so much pain. I just wanted to say that I totally get it. If I miss the first sign of a flare up, no pain medication can keep the pain in check, which like for you, affects my legs, back, hips, bladder etc.

While not "really" helping with the pain, what helped me mentally was to very consciously take time off work to be extra nice to my body (if that is an option for you), to let someone trusted know how much pain I was in for the emotional comfort and to buy an electric blanket. It really helped me relieve the pain in the legs and back,of course it didn't get rid of it, but made it bearable.

I'm sorry this is probably not much help for the actual pain but hang in there! You're not alone. Xx

[USgalwthendo]

I’m so sorry you’re having to go through this! Your post sounds almost identical to my experiences. I have stage 4 (severe) endo. I’m in pain for 4 days out of every 26. ( I have short cycles too, called luteal phase defect). I use the heating pad, hot water bottle, and tens. Plus ibuprofen. I work full time. I’m able to work 70% from home. On days I go to the office, and in pain, I am not very productive and I just do my best. I’m 42. My son is 6. I do my best to take care of home life, tasks etc. but when it’s really bad I tell my family “moms in pain, I’m checking out”. And we order food vs cooking, I let the housework go, hubby helps more with my son, getting homework done, etc. I just drag myself through it, lay in bed at times, and try to walk around when I can for my health. Mentally I have just learned to be ok with moments to hours and even days where I’m not able to do much. And on “good” days I try to make up for it by doing more tasks and spending more time with my son. I’ve been going through this for 20 years at least (dx 8 years), and I did start having depression so I take citalopram for that now which helps a lot dealing with this condition. Having family support has been tremendously helpful mentally. If my husband was not understanding I don’t think I would cope as well. At first I felt guilty that my son has a “sick mama” but he’s turning into a very compassionate young man. We do alot of activities together on my healthy days.

[TheresaIH]

Thank you so much for your replies. After possibly my longest flare up (11 days & counting) it does feel like things are easing (fingers crossed), until next time. It just really took it out of me mentally this time. I’m hoping for a better couple of weeks for Christmas before the next attack. Wishing you all a peaceful, happy Christmas! 🎄🎅