Forums » Smalltalk » AMA: Life With A Chronic Illness

I decided to take part in this event because I realized some people might not know a lot about chronic illness, what it means, and how to treat people with chronic illness. Obviously I don’t speak for everyone, but I’d like to share my thoughts on the matter!

I’m diagnosed with stage 3 Fibromyalgia. It’s a neurological chronic illness that affects how I go about my day to day life; such as showering, walking, eating, typing, and more. There are a ton of side effects. It affects my immune system so I get sick easily, I am extremely sensitive to smells, light, touch, I can’t regulate my body temperature, and soooo much more. Fibromyalgia can look like a lot of things, including Lupis and other neurological disorders.

Ask me anything!! I can answer questions about Fibromyalgia, or if you have questions about chronic illness in general, I can also answer that.

Thank you so much for sharing your experience and being open about your chronic illness! It’s incredibly valuable for others to learn from your perspective, especially when it comes to understanding what life with a condition like Fibromyalgia is really like.

For people who may not be familiar with Fibromyalgia or chronic illness in general, what would you say is one of the most common misconceptions or misunderstandings you encounter? And what do you wish people understood better about the challenges you face daily?

Thank you for the question!! Hmm, if I had to answer, I would say that anything that gets in the way of your ability to function to day to day life is a disability. You don’t need to have a wheelchair or anything like that to have a disability. I don’t have a wheelchair, however some days I can’t physically walk, or I can’t lift my arms above my head. I always encourage people to never judge others based off what they see—because it might be harder than they realize.

I also encourage people to not undermine their experiences. Fibromyalgia is a chronic illness that a lot of people don’t believe in it because it is an so called “invisible” disorder. However it does exist and it is very real, so if you’re experiencing symptoms, i recommend talking to a doctor. Some doctors don’t believe in it either (as it’s a relatively new chronic diagnosis) so please see a doctor who takes you seriously.

Thank you for choosing to share your experience!

1. Did it take you a long time to work out what was happening and what you had?

2. What is the most supportive thing a friend can do for you?

3. Do you have a specific set routine or do you kind of assess your limits each day as it comes?

Thank you for asking these questions!! Hmmm- to answer them, I’d say…

1. It took me a while to figure out what was wrong with me. I was diagnosed 8 years ago, when I was in the middle of middle school, and Fibromyalgia wasn’t considered real by many people. I had to travel to doctors every week and it was a hassle. At first they thought I had arthritis, then they thought I had lupus, then they thought it was something else. It was a journey for sure!

2. I can’t speak for everyone, but if you know someone who has a chronic illness, it is always good to notice and take note of things they do when they are having a bad day. Obviously don’t baby them, as people with chronic illnesses do not want to be treated differently just because they have something different with them. Be a friend that’s supportive and cares about your friends well being. Even just asking how they are doing goes a long day.

3. Fibromyalgia for me is constant pain. I’m in pain all the time, no matter what time of day, however the level of pain changes. Some days I can walk, some days I can’t walk. It is encouraged by pain clinics that people with fibromyalgia get a good amount of sleep, think about consulting a doctor about nerve medication, and getting good exercise through the day that gets your heart pumping. Fibromyalgia flare ups can be caused by so many things so your days aren’t set in stone; you just have to take one day as it comes.

Does/did school provide you any accomodations to make it easier for you to participate when you had extra high levels of pain?

Thank you for the question! To answer your question, not really. The school I grew up with wasn’t the kindest to its students or its staff, as many of the staff weren’t even teachers to begin with. The most they could do was exempt me a day from school a week so I could go to the hospital for treatment. I do believe that schools now are a lot more open to it, as a lot about fibromyalgia has came out in the past 8 years! But for my experience, the answer is not really.

I am very curious as to what medications, if any, you take to help you cope with the nerve pain. Does anything help?

I have a different chronic illness that comes with full body nerve pain flares, and I take gabapentin and the tybuprofen combo for it, but it only takes the edge off and doesn't make it go away.

I also take Gabapentin and Duloxetine (which is also for my anxiety + nerve flare ups)! It doesn’t help all the time, it makes things just bearable, but I honestly think that’s just the yucky feeling of chronic illness. I honestly wish there was a better medicine out there! If you don’t mind me asking, and you don’t have to answer if you’re not comfortable with answering, but what chronic illness do you have?

I am so sorry. That sounds brutal.

Aww it’s okay, thank you! That was a long time ago anyway. I was very grateful for the question.

I have several, but the one that causes the pain is Sjogren's Syndrome (a rheumatoid autoimmune disease that I'm actually doing an AMA for). Unfortunately I can't take SNRIs due to my bipolar, but I do see duloxetine mentioned often in my SS support group as one that helps people tremendously. I was originally prescribed gabapentin to help with PTSD episodes, but I found it also helped my nerve pain and helps with mood stabilization. It's crazy how versatile anticonvulsant meds are for some patients!

I'm glad that that combo helps you somewhat, if not entirely, and I'm sending good vibes and hopes for more low/no pain days for you than not!

I have Fibromyalgia myself, and I got really curious seeing the stage 3 part, as I've never heard of fibro being divided into stages like that.
Do you know if it's more specific to where you're from? Or perhaps my country might be the odd one out lol

Oh really? I was diagnosed years ago in Columbus OH, when I was a minor. I remember I had issues with the hospital there I went too because of the excessive amount of Gabapentin they gave me (300mg / 3 times a day, so 900mg) when I was 11 or 12. They also had a hard time diagnosing me since they didn’t want to consider fibromyalgia at first. When they did diagnose me, they told me I had Stage 3.

They explained it as like levels. So people with Stage 1 would only have pain some moments, but people with Stage 3 are people with pain levels that inhibit their daily routine and activities (constant pain), so they told me it was a disability. But like stage 5 is people who are bedridden or have wheelchairs or something. I’ve never talked to doctors out my fibromyalgia outside of WV and OH, so I’m unsure if it’s a state thing.

Ohh thank you for telling me! I’ve never heard of Sjogren Syndrome before, so I’ll definitely be looking up more so I’m well informed. Thank you and I’m also sending good vibes back. I hope you have low/no pain days for you as well! May you have good health.!

I'm all the way over in Denmark haha I think perhaps it could be due to me being in Europe? I did find something on a norwegian page talking about it being a thing in America. That's quite interesting!
If stage 1 is moments of pain and 3 is constant pain.. what would stage 2 be?

Oh they really just gave you that much meds right away? That sounds intense.
The rheumatology nurse I was seeing recommended I tried seeing a pain clinic, but my regular doctor said the meds would be pointless for some reason I of course don't remember now, and I just sort of dropped it.
But wow 11-12 is so young. I'm curious, do you think it's been an advantage to get the diagnosis that young? Was it hard to come to terms with? I definitely feel like that's a constant up and down for me, but I've only had the diagnosis for a year this month

Ohh that makes sense!! I honestly didn’t know how Europe went about fibromyalgia at all. I don’t know much about the stages except my own, but when I look up what stage 2 would be exactly, it’s just additional pain and a couple more symptoms. I believe it’s fibromyalgia but with the lack of strong symptoms such as a weakened immune system, sensitivity, widespread body pain, etc.

Hmm honestly I’m glad I was diagnosed young, but I’m not happy with how it started. I was mistreated by a lot of doctors. Giving 900mg of Gabapentin to a 11-12 year old who only weighed about 85 pounds was a bad call, especially since Gabapentin is known to have a lot of side effects. When I was diagnosed, fibromyalgia was not something I ever heard or any of the adults in my life, and I remember feeling very alone at that time, as not a lot of other people had it. So there were pros and cons.

How did you feel when you were diagnosed? If you don’t mind me asking.

Honestly, there are so many symptoms, I've sort of given up on figuring it out haha

Yeah it really sounds dangerous to just give that amount.. I really hope it didn't cause any long-term issues on top.
I can imagine it feeling incredibly lonely, I hope it's less now!

I don't mind! though would it be okay if I dm'd you instead?

Aww of course! You’re free to DM me!