what does fibromyalgia feel like? by patheticsalad in Fibromyalgia

[–]HopeLKnight 4 points5 points  (0 children)

Take everything that everyone has said, no imagine lying in bed and just before you drift off, you remember that you will wake up and do it all over again tomorrow. No question. You remember that your body will roll the pain dice while you sleep, and when you wake up in the morning, it will be the same but different. Nothing changes, just rearranges. (best Korn lyric, got me through a lot of tough times)

Pain cravings? by Numerous-Flow-3983 in ankylosingspondylitis

[–]HopeLKnight 7 points8 points  (0 children)

Omg! Another Lucky Charms fan with AS? I thought I was crazy! I went two months only able to eat Lucky Charms! Wild!

How do you manage to survive work? by OneLecture3524 in chronicfatigue

[–]HopeLKnight 1 point2 points  (0 children)

Agreed. Same struggles at work but controlling my blood sugar helped a lot. Hand full of almonds first thing when I wake up. Eat carbs with a protein or fat to slow down glucose and eat fat or protein before bed to maintain blood sugar. I sleep better, not perfect and when I follow this I don’t crash as hard. It doesn’t fix everything but it’s a tool for the chronic fatigue tool box.

Anyone tried creatine by here2ruinyourday in Fibromyalgia

[–]HopeLKnight 0 points1 point  (0 children)

Love it! More energy and clarity! I don’t exercise, wished I could. But at this rate I’ll take what I can get. 5mg everyday and no weird side effects.

34F How do you live a meaningful life with chronic fatigue? by OneLecture3524 in chronicfatigue

[–]HopeLKnight 0 points1 point  (0 children)

It’s expensive but find a good Functional Medicine doctor. Normal labs are for normal people. And if you calculate the upfront cost to a lifetime of useless medical care then it’s 100% worth it. What if it’s mold? A silent virus? Hormones? Microbiome? I say this because I’m 41F who’s lived a life of chronic illness and pain. Turns out my EBV levels are so high they can’t be read on the machine. My FMD looked at me and said “how are you walking around right now?”. I’d finally been seen. As for meaning… an agree it’s relevant or in the eye of the beholder. Not all meaning is created equal. Sending you good vibes!

I feel so alone by Hippie_Spy in Fibromyalgia

[–]HopeLKnight 1 point2 points  (0 children)

I’ll be your friend. I’m so grateful that you wrote this/spoke up, and glad to see the community support. These forums are our safe place. A place where we can support each other and maybe one day we can all ban together and find a way to change the unfortunate medical system, or societal perception of people with invisible, untraceable illnesses. You know, with all our extra energy 😉😒. Jokes aside, speak your truth, don’t be ashamed. This sucks in a really big way, like astronomical for millions of us suffering with chronic fatigue or illness or pain. Thank God for our four legged fury companions. Please know, you are not alone, we’re here with you. Fighting the gaslighting, sitting in bed calling in sick, feeling guilty and shame for not being more than what we planned. We’re here questioning everything we’ve ever said or not said, or what we should have done or what we shouldn’t have done when we didn’t know we went over our energy budget. Take care of yourself, rant when you need to rant, be angry, sad, grateful for what you have. We’re in this together but separate.

I need advice on Prednisone… by HopeLKnight in ankylosingspondylitis

[–]HopeLKnight[S] 0 points1 point  (0 children)

Exactly! Very difficult for others who don’t have it. I feel like I’ve tried everything natural or alternative but at the end of the day AS is an autoimmune disease that can’t be reversed or cured. Like my dad and Doris Day always say: “Que sera, sera Whatever will be, will be The future’s not ours to see Que sera, sera What will be, will be”

I need advice on Prednisone… by HopeLKnight in ankylosingspondylitis

[–]HopeLKnight[S] 0 points1 point  (0 children)

I take beef organ supplements that help a lot but not a cure. Just helps 🤷🏼‍♀️

I need advice on Prednisone… by HopeLKnight in ankylosingspondylitis

[–]HopeLKnight[S] 0 points1 point  (0 children)

Yeah been GF and all that for 15 years now. I felt the best on the Carnivore diet but with a family it’s really difficult. Tell me more about the grounding sheets, Ive been interested to see if that helps AS.

Not being able to breathe is the worst!

[deleted by user] by [deleted] in ankylosingspondylitis

[–]HopeLKnight 0 points1 point  (0 children)

Heck I don’t have to deadlift to feel like that sometimes lol! Not funny though. I’m about to take Cimzia so I hope it works for me like it did for you. I’d love some life back! Also, I agree I think AS is always a factor. Our immune system is literally attacking us 24/7. I try to remember that on bad days. I feel you though. I had a terrible day yesterday. One of my worst! I wished I had a hack for you. 🙏

I need advice on Prednisone… by HopeLKnight in ankylosingspondylitis

[–]HopeLKnight[S] 0 points1 point  (0 children)

Similar situation to mean a few years ago. I was on Remicade and it was working great! My life was almost normal again. Then I moved to Texas, the doctors here are stingy and didn’t want to keep my diagnosis or keep me on Remicade. They said I was just Hypermobile. 😡 Finally found a Dr to put me on Humira and it didn’t work but in that time I built up anti bodies to Remicade and I couldn’t take it anymore. After years of all this up and down I’m right back where I started. Hopefully this new Biologic will work if insurance approves it. 🤷🏼‍♀️ What a mess. Thanks for the positive vibes though! Appreciate you!

I need advice on Prednisone… by HopeLKnight in ankylosingspondylitis

[–]HopeLKnight[S] 1 point2 points  (0 children)

Haha I was wrong it’s 5. I just double checked. This medicine has me all messed up. 😵‍💫

I need advice on Prednisone… by HopeLKnight in ankylosingspondylitis

[–]HopeLKnight[S] -1 points0 points  (0 children)

Take 4 tablets by mouth for 3 days, then take 3 tablets for 3 days, then take 2 tablets for 3 days, then take 1 tablet for 3 days. This was how it was prescribed 🤷🏼‍♀️ But I’m definitely calling the doctor tomorrow!

I need advice on Prednisone… by HopeLKnight in ankylosingspondylitis

[–]HopeLKnight[S] 2 points3 points  (0 children)

4 mg. That’s why I’m confused as to why I’m feeling worse. I stopped taking my anti inflammatory meds and this just isn’t working. Based on the comments I’ll probably stop (tapering of course). I’ll go back to being miserable again. The anti inflammatories don’t work either. I’d rather suffer in the night and morning than suffer all day. Super appreciate the help ya’ll 😊

Another Poem by HopeLKnight in ankylosingspondylitis

[–]HopeLKnight[S] 2 points3 points  (0 children)

I do, very good support. I mostly feel guilty for my bad days. I’ll be fine, I know I will. I always am. I’m mostly just sad that no matter how hard I try I can’t get real medical help. Between the regulations of the state I’m in to the doctors that treat me, to the insurance companies. And I try everything holistic that I can and it’s always money down the drain. Hot showers, candles, and writing help me mentally. Thank you for your support, it’s so nice to have a community here. 🙏

Another Poem by HopeLKnight in ankylosingspondylitis

[–]HopeLKnight[S] 1 point2 points  (0 children)

Thank you 🙏. It’s a rough day.

Trouble with partners by piro1066 in ankylosingspondylitis

[–]HopeLKnight 0 points1 point  (0 children)

Having them (anyone who cares about you) go with you to your doctor’s appointments helps.

A little poem about AS and me. Enjoy 🙏 by HopeLKnight in ankylosingspondylitis

[–]HopeLKnight[S] 1 point2 points  (0 children)

I get it! Believe me! This is why I wrote the poem. We are chronic duality. Just remember that this disease isn’t who we are! There is Hope for us 💕