How do you describe your pain (or: is this level of pain possible?) š
Hi, folks!
I'm new to this community, and I searched for an discussion like this one and I didn't find it, so I'm trying to start one š
First of all, I'm going to introduce myself and tell a little about my history.
My name is Ćrika, I'm 33 yo and I'm from Sao Paulo, Brazil (sorry I'm advance for some mistakes is my English).
I'm a sociologist, I work in a bank and I'm trying to do a second graduation in physiology. I'm married and I have three cute cats šŗ
I was diagnosed with AS (more specific with the non radiographic type) in early 2021. Since that, my life turned upside down, like many of you, I can imagine.
I've tried non steroids anti-inflammatories, but my bowels are intolerant to it. After that I started biologycs and had to treat latent tuberculosis first. The medication for it gave me a lupus-like syndrome and I was in a incredible pain and numbness in my foot. Thanks God, I found another doctor that asked for a better exam for TB, and we discovered that I actually didn't have latent TB.
Started Simponi, but after some months, nothing happened. Then started Humira and it has bring me some relief for a couple of months, almost a year, then the massive flares start again. Now I'm going to start Cosentyx - just waiting the health insurance to approve it (it may take 15 days).
With all of this mess in my life, saw myself losing a big part of my happiness, my hobbies, my independence, my plansā¦ I had a big episode of depression, that is a bit better now, but I'm starting to feel like crap again.
I have a lot of lsymptoms that are classic, including sacroiliac lesions, enthesits, morning stiffness, high CRP and ESR, fadigue, IBS and family history of autoimmune diseases(my dad has Crohn Disease and my aunt has Psoriasis). But, since I'm in this long and terrible flare (since January, to be exact), I'm in doubt about my diagnosis., because this time the pain is SO terrible, so constant and strong that Oxycontin (10mg) it's not working (it works for like, 6 hours and than the pain returns). A small dose of morphine last for a few more hours. It hurts when I'm sitted, when I'm lying down, when I'm standingā¦ the relief is when I'm walking - but only the exact amount to not be in pain again.
The major pain is in the lower back, but I feel like it's so much deeper, and I feel like it's going into my sacroiliac and ending in my groin. Then, it irradiates through my leg (almost aways the letf on) and feels like sciatica pain, but it's different and I don't know how to explain. It goes through my ankle, to finally end in my Achilles' heel. My ribs hurts sometimes, too.
The pain makes me want to stretch out (and I'm very flexible), but it doesn't relief it at all. The TENS device help me a little, but then the pain returns. Hot and cold donāt seem to help.
It's so difficult to explain and so incredibly hard that I'm start to doubt myself that it's real.
I just want to ask: do someone relate (even if just a little) to this description? Is this level pain common in AE? How is your pain?
Thank you so much if you read all of this and I will be so happy to hear about your experience š
I try to compare my pain levels to kidney stone pain. When I had kidney stones it was the worst imaginable pain. My AS is about 75 percent of that but does not go away. Pain medicine is a joke. Oxycodone does little to nothing for me. Heat and ice help for a few minutes. Ice longer lasting if I leave it on longer than recommended. Steroids cause stomach problems. NSAIDS are out due to no relief and heart condition. Open to any suggestions! Insurance slow walking biologics.
- I wanted to write and check in to see how you are doing. Havent heard from you in a while and hope all is going better than when starting this post. Have you been able to manage your pain and depression better? We'd love to hear from you. Thoughtfully, Rebecca (team member) Erika Gibaja, I just posted yesterday the way I describe pain. I posted it on Coping and titled it Pain Level.
I sort of wrote like it is something I have under control: no, double hell no.
I suffered with JRA as a kid and it morphed into RA. I was diagnosed with HLA-B27 and AS in my late 20s and am pretty crippled now.
I was forced to accept that pain was going to be a constant in 1996 when a pain specialist prescribed something that put me in a coma for 3 days. I have no idea what he gave me or if I took other pills not knowingly. I just learned then that no pill can take away my pain without hurting something else or killing me.
Sometimes the pain is almost more than I can take. However, I am 76 and live alone, so I must be doing something right. My secret is that when I canāt take it and am at the end of my tolerance, I call my daughter and ask her to make me laugh. She knows that means she has to pull out all the stops. It might take 10 minutes of her reminding me of all those embarrassing family moments before I have laughed so hard the pain lets up a little. Sometimes we have to go to Plan B and watch Robin Williams in RV (the cleaning out the poop scene) or Chevy Chase in Christmas Vacation (Christmas dinner with the family scene).
Bless her heart, I have called her at all times of day and night over the years. We learned to do this by accident when she was 13, and we have done it now for 40+ years. There is plenty of research that backs up that humor can help with pain, give it a try.
However, when I have to describe my pain, I have my scale. I am only a 7 today, so itās a pretty good day.
Blessing to you, LynThanks so much for sharing this! It is said that humor is the best medicine. I have a difficult time with humor feeling horrible and in pain 99.9% of the time. My husband is a self-proclaimed comedian so ... I do laugh at least once a day. And that is good for me. I'm so glad you have your daughter - what a gift. And those movies surely are great ones! Living at a 7 or higher pain level can be difficult but it sounds like you are doing it. Kudos! Thanks for supporting others in the community. It's great to hear from you. Warmly, Rebecca (team member)
Wow! I feel like Iām reading my journal. I can relate to all your pain. You are not alone and your pain is real.
Just curious, how were you diagnosed? It took 13 years for me to get a firm diagnosis for my back, neck, hips etc, outside of Fibromyalgia which I have as well. The Rheumatologist that I saw at the beginning of my disease never tested me for the gene HLA-B27. I decided to go to a new Rheumatologist this year and finally had a full blood work up done. I tested positive for the gene. Itās affirming to have a name to the disease and see that my symptoms line up perfectly.
Prior to my Rheumatology visit this year, the SIJ Syndrome hit me (last summer) which left me in tremendous pain and immobile. Iāve been disabled since 2009 but this pain in my hips was something new and scary! After much research I purchased a SIJ belt that fits snuggly around my hips. Itās my understanding that the ligaments around these joints get overused and the SIJ belt gives them stability and compression to heal until the next flare up š¤Æ I found that I can wear it too much so I have to really listen to my body. Itās definitely not a cure but it does help my sciatica and gives me more stability when walking.
I hope this information helps somebody. Hereās the link if youāre interested. Not a big investment ($20) and you can always return it if itās not for you.
PlayActive Sacroiliac SI Joint Hip Belt - Lower Back Support Brace for Men and Women - Hip Braces for Hip Pain - Pelvic Support Belt - Trochanter Belt - Sciatica Pelvis Lumbar Pain Relief (Regular) https://a.co/d/hYuN9Zu
