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How do you describe your pain (or: is this level of pain possible?) 😭

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 😊
First of all, I'm going to introduce myself and tell a little about my history.

My name is Érika, 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 😺

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 plans… 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 standing… 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 don’t 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 😊

  1. Wow! I feel like I’m 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. It’s 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. I’ve 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. It’s 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 🤯 I found that I can wear it too much so I have to really listen to my body. It’s definitely not a cure but it does help my sciatica and gives me more stability when walking.

    I hope this information helps somebody. Here’s the link if you’re interested. Not a big investment ($20) and you can always return it if it’s 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)

    1. I have some of the same issues. Mine goes down the right side. Around the front thigh to the knee and down to my foot. I hate getting up and just standing there trying to tell my legs to move and they don't. I'm on humira also but it doesn't help enough. I live in North West PA and the weather is wretched on my body. We can have 4 seasons in one day often. I have found a doctor a few hours away that's amazing though. I Also have fibromyalgia do you?

      1. Hi @Dottie70

        Oh that's is great you have found a great doctor. I know how hard this can be, but the best feeling once you have a great doctor to help through your health journey.

        I can relate the weather not helping and switching so many times in one day. I been wanting to move in more warmer area, but it's a big decision to make for the whole family. Lol!

        Do you also have fibromyalgia ? I also. I know having both AS and fibro can me a tough one. How have you been coping ?

        Hugs !!!

        Nicky (Team Member)

    2. My daily pain is in my hips. Feels like they are always dragging and not wanting to move very well especially in the mornings. The lower back pain when present is unbearable.

      1. hi! What

      2. Hello?

    3. Hello ! I am so sorry you are feeling this poorly. I think I know this pain that you are describing. This happened to me in autumn of 2021. The pain is so different from anything sport- or injury-related. When it was happening to me, I wanted to know exactly what joints, muscles or nerves were affected so I could treat them properly. I never received fully satisfactory answers, but my family doctor believed that the piriformis muscle (attached to the sacrum) may have become inflamed as well, entrapping the sciatic nerve. I had pain radiated from my SI joints into my butt and down my hamstrings, the side of my legs and into my ankles. At first I had been doing all kinds of physio and exercise to try and stretch out the butt and leg muscles, and I'm sure I made it much worse. I later learned from my physiotherapist (PT) that you can overdo treatment and make the inflammation worse. My PT introduced me to "nerve flossing" (I don't know that I am 100% convinced this works all the time, but it seems to have contributed to my successful recovery) and told me to stop stretching. Instead I would ice regularly, continue with my TENS unit and try little by little to increase how much I could walk. The pain last a few months but it improved. It was truly depressing while it lasted. I just kept telling myself, "this will improve". I don't know if this will help you, but I really hope it does.

      1. like you said, the treatment really depends on the level of pain, the area affected... We learn that exercises aways help, but we need to know our limits in each situation.

      2. oh, and I did a lot of tens, too. I think it helped in this flare.

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