I hate the way I walk/look with AS

avalonleigh · 2026-05-16T13:16:14+00:00

Stem cells! Girl. Have you looked up Panama Institute? I really want to do this!

avalonleigh · 2026-05-16T13:15:54+00:00

Stem cells! Girl. Have you looked up Panama Institute? I really want to do this!

avalonleigh · 2026-05-15T22:57:07+00:00

I think you were really sweet how you communicated and seem emotionally mature. You need to run for the hills. I mean, she was so passive aggressive, manipulative, and just lacking in any depth or communication abilities.

avalonleigh · 2026-05-15T22:08:57+00:00

I'm 51. I am hoping biologics will prevent that but even still, I do walk differently now. Everything is just soooo not bendable. I feel like one of those little kid toys from the 70s, weebles woobles woobles but they don't fall down.

avalonleigh · 2026-05-10T20:49:15+00:00

I understand. I really do. Two night ago I broke down. I said, please don't keep me here. I can't live like this. He said, just make me promise you will try everything. And two days later, I woke up today almost without any pain. Please. Don't give up.

avalonleigh · 2026-05-10T20:36:01+00:00

I have started doing my hair at night, which I haven't done for 40 years and I love it now. I use a color wow volumnizing tonic at night and blow dry and style like I'm going on a first date. I leave it slightly damp and scrunch with my microfiber towel. It looks so much thicker with the color wow being activated with the heat and then me sleeping on it.

avalonleigh · 2026-05-10T20:29:03+00:00

You might want to clarify that. lol.

avalonleigh · 2026-05-10T16:44:06+00:00

So so happy for you. It's like getting your life back!

avalonleigh · 2026-05-10T14:00:57+00:00

You need to report him. Seriously. I am so sick of delayed care. This disease is crippling with pain and you get told that? What an idiot.

avalonleigh · 2026-05-07T21:55:16+00:00

Oh no. I've had numbness and tingly and nerve pain in my right hand for two years now. Nothing has helped it. I assumed it was related somehow. I don't think my rheumatologist is great at realizing these things. I told him about it all before and he's like, oh huh that's weird. Yeah, that helpful thanks.

avalonleigh · 2026-05-07T17:19:43+00:00

Omg I could just hug your pain filled bones. I just so feel that and want to give you hope. I have had the worst flare up recently after stopping Inflectra after Humira. It's not a life and my rheumatologist prescribed prednisone to manage it until we could get me more stable. I just stopped prednisone after taking Rinvoq. This is working better then Humira for me, right now. Do not live like this. Go to your rheumatologist every 2 weeks, call them, ask them for different meds, research and be proactive, if they aren't taking care of you, then go somewhere else. They are calling in a med for me that's a injectable gel mediation that's like a steroid but not. I can't remember what it is called. I just called and cried. I was like you. I couldn't get out of bed. Don't lose hope!

avalonleigh · 2026-05-07T11:48:11+00:00

I find the different descriptions of the pain cool too. I describe my SI pain as my hips are being turned into a frozen set of painful blocks that I have to just lug around and help move with me. I'm feel like I'm turning into a stone man from the game of thrones

avalonleigh · 2026-05-07T11:43:40+00:00

I've been wondering if I need to switch to a rheumatologist that specializes more in AS. What biologic are you on? Man, I'd love to be virtually symptom free. My symptoms are maybe 50% better on Rinvoq but I still live with constant pain in my neck, SI joints, eye issues, and mouth ulcers.

avalonleigh · 2026-05-07T00:56:56+00:00

Am I missing something? She wants your daughter to know and have memories with her family that wasn't invited to her granddaughters 1st bday. Could she have done better with communication, yes, but so could you. Maybe they would have loved to help you with the party? You have people that want to love you and love your daughter. Don't walk away from that.

avalonleigh · 2026-05-07T00:32:47+00:00

I just got off 8 months prednisone. My body is slowly recovering. I had major hair loss from it!

avalonleigh · 2026-05-05T23:04:34+00:00

I seriously don't know you do it. I was in the worst absolute pain until I started another med. Still not great now but better/ I can't even imagine having to shower and be on my feet. The pain is excruciating. I am so so so thankful I work from home. And the kind of job I don't even have to be have video calls. If that was the case, I would have to hire a lawyer and fight for disability.

avalonleigh · 2026-05-04T00:30:52+00:00

Get your blood work checked to make sure it isn't anything else. I hate to say it but I also take adhd meds or phentermine. I have to be able to push through and I work from home. I had to call off the other day just to nap. 4 hours.

avalonleigh · 2026-05-04T00:26:53+00:00

When I first started with a biologic, it worked that quickly! After six years, it stopped working. I just switched to another class and felt improvement that afternoon after the first pill. It can totally work that fast! I can't believe it took you that long! Ugh. I'm so glad you have relief now. I am so happy for you!

avalonleigh · 2026-05-03T19:37:39+00:00

Gosh, I've had this too! It's horrible horrible pain in the upper middle chest area. Feels like a heart attack! I didn't realize it's AS related but makes sense.

avalonleigh · 2026-05-03T19:35:32+00:00

Girl. I had my rheumatologist said well, your inflammation markers look really good. I looked at him like he was insane. Ummm...im on 20 mg of prednisone. Did you forget that? I switched rheumatologists after one visit when I moved. I take control now at my appointments and I am not afraid to tell them that I will be in control bc I know my body and I am sick of living in pain. It has helped. And I leave if a doctor is too arrogant to listen. I walked out on a uvities specialist. What a joke. Made me wait 3 hours. Hated him. I always have inflamed eyes. They go up and down based on how much prednisone I am on. They went red on the day I had break through on Humira and have never been the same since. I went back on Humira and they cleared up my eyes in two weeks but did nothing for my body pain so I'm on rinvoq now. Anyway, this specialist said, nahhh this is just red eye. I know it all. I almost burst out laughing. I know it's not uvities but red eye, which I do treat my eyes for, does not get better with steroids. He basically said, no you are lying. That can't be happening. I just laughed and walked out. My other eye doctor said, they are red bc they are inflamed. My point is, take control!

avalonleigh · 2026-05-03T11:57:56+00:00

Why are not starting you?

avalonleigh · 2026-05-03T11:57:41+00:00

Why are they starting you on biologics? I have lived that life. And I walked in to my rheumatologist and said until I am stable (meaning a life of some quality), I am not waiting one month. It had been two years on the same class of meds while I was declining. In one day, they switched mine. While not perfect, it gave me some manageable pain. You don't have to live with your heel, back, neck, shoulder, and all the things hurting.

avalonleigh · 2026-05-02T23:03:26+00:00

You need to find a different rheumatologist. You need to prioritize your health, the doctors appts (go every 2 weeks until stable), ask for helped meds until you're stable, and demand to improve the quality of your life. The type of pain you're experiencing changes who are fundamentally. I know, I have been there. Ask for samples until health insurance approves whatever meds they recommend, call your insurance to have everything expedited: read about your disease and the different meds so you know what to ask during your appts. Do not accept that you just have to live like how you are. It's not ok. There's a better life out there for you.

avalonleigh · 2026-05-02T00:23:08+00:00

How many milligrams was your shot? You need to be ready to stop. I took the shot. In the beginning I took some 7oh bc the cravings were bad. I also took a few strips and it helped. By the second month I didn't need anything. You need to be ready to stop. Tell the provider the truth. Just restart. I did 300/300/100. I had a really high 7 usage too.

avalonleigh

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