Good health to everyone, I'm a new member.

Olesia

Member
Joined
Apr 7, 2024
Messages
22
Reason
DX CFS
Diagnosis
10/2017
Hello, dear community members. I use Google Translate to communicate.
I was diagnosed with systemic lupus erythematosus (2 years) and associated fibromyalgia (7 years). I can’t say that I’m looking for methods of medical care, probably because I already know a lot about the biology of diseases. Previously, I was optimistic about the prospects for treatment and even went to study to become a biologist. The last year has been especially difficult. I would be grateful for your support and would like to read the stories of people who courageously fight the disease and live despite the pain. People like me. Perhaps my experience will also be useful to someone. I need time to understand this site and sections. I want to write about my attempts at treatment.
Thank you.
 
@Olesia

Welcome to the forums. You may comment on any threads you like, we are all the same here, people with fibromyalgia here to support each other.

Read the ones that are closed for comment, as well. There is a lot of information there as well.

Again, Welcome 🤗 🤗 🤗
 
I was diagnosed with systemic lupus erythematosus (2 years) and associated fibromyalgia (7 years). I can’t say that I’m looking for methods of medical care, probably because I
Hi @Olesia welcome to the forum! I'm glad you have a very good biological understanding of your lupus and fibromyalgia! Both can be very challenging on their on, and at times frustrating when the coexist together! I'm greatful that you will be able to help with our biological understanding!

Many of us have tried countless numbers of medication and treatment. I've found that a holistic approach helps me the best! Movement helps ensure I don't stiffen and tighten up to almost a point of not being able to move. Sleep is critical for me, and something that is a challenge. Self massage helps at times, as does heat. I've learned some food are triggers for me that cause increased pain and swelling (nightshades, gluten, dairy are my 3 big ones). Acupuncture helps me a lot.

For me, my mental health is impacted by my pain and fatigue, and my conditions are impacted by my mental health. Knowing this, I spend a lot of time working on my mental health. My psychiatrist and councilor have been extremely important members of my healthCARE team. I also practice guided meditation, relaxation breathing, yoga, mindfulness and gratitude.

I don't have a one size fits all solution. Just a lot of tools in my toolbox to pull out and try when needed. Sometimes it takes trying multiple tools to find one(s) that can offer a little relief at that moment.

Wishing you all the best on your healing journey!
 
Hello, dear community members. I use Google Translate to communicate.
@Olesia It is good to see you again.

I just looked at the two other posts, and then when I read this one again, that shows I didn't quite get that. My apologies.
The last year has been especially difficult. I would be grateful for your support and would like to read the stories of people who courageously fight the disease and live despite the pain. People like me. Perhaps my experience will also be useful to someone. I need time to understand this site and sections. I want to write about my attempts at treatment.

You may comment anywhere you like, if a thread interests you, go for it. This is a very supportive group. I'm sure you will find it good just being around people that truly understand what you are feeling like. It's not like trying to explain/excuse yourself to those who simply cannot comprehend.

hugs 🤗 🤗 🤗 🤗 🤗
 
Morning @Olesia welcome.

I love the world wide aspect of this forum ( am in UK) , as you say it's interesting to see different reactions to fibromyalgia ( And for you Lupus) as well as how different countries treat such conditions.
I have mostly given up trying to explain fibro, not many people understand what it is, let alone understand the symptoms and it's effects. But to be fair I didn't understand organised until it hit me. As for Lupus you may be able to explain it as an auto immune disease where the bodies immune system attacks healthy cells rather than protect it? But For me, I use this forum as my best support system. I hope you will find so too.

As for coping with it! ( I have inflammatory arthritis too ) I just do the best I can on any given day. Gentle exercise to keep muscles moving ( if I am having a bad day I use the term movement rather than exercise, in case I feel bad I can't do more ) brain fog wise I make a lot of notes, sticking them to objects if I weirdly forget how to use them. Read and do puzzles to keep brain working.

And essentially, rest as much as I can. It doesn't always work, I get frustrated and do too much and suffer for it.
But most importantly acceptance is the key, and for me I need to fully understand this is long term. And try not to beat myself up for making symptoms worse ( am quite good at that...)

Just post whatever you like, there always seems to be someone who can jump in or just say you aren't alone in this.
 
@Olesia @SBee

As for coping with it! ( I have inflammatory arthritis too ) I just do the best I can on any given day. Gentle exercise to keep muscles moving ( if I am having a bad day I use the term movement rather than exercise, in case I feel bad I can't do more ) brain fog wise I make a lot of notes, sticking them to objects if I weirdly forget how to use them. Read and do puzzles to keep brain working.

And essentially, rest as much as I can. It doesn't always work, I get frustrated and do too much and suffer for it.
But most importantly acceptance is the key, and for me I need to fully understand this is long term. And try not to beat myself up for making symptoms worse ( am quite good at that...)

I don't have anything except fibro, (I think), but I am so like you. I am so trying to understand I must rest and not beat myself up. Easier said than done, isn't it?

I definitely find that puzzles, mostly sudoku, fill-it-ins, solitaire and jigsaws , do help kick-start my brain at times. Jigsaws and card games are on a tablet, as I cannot pick up the pieces and cards, I lose hand strength too quickly.
 
I have slightly different symptoms from fibromyalgia. Hypersensitivity of the skin, generalized pain, and wild stiffness, up to the inability to sometimes perform basic movements. Like you, I dose my load and activity. It is impossible to plan anything. I do things spontaneously when I feel better.Concentration of thought is fine. Sometimes there is only a feeling of derealization. From pain. As if the body is not mine.
 
Yes @Olesia the stiffness ( especially in neck, shoulders and upper back) never leave me. Sensitivity in skin most!y on wrists and hands for me. And the chronic fatigue is a pig to deal.with.
Someone once described fibromyalgia as an ever moving target, so making plans is hard as we never know how we may be from day to day ( or hour to hour). Got may be able to recognise signs when you are doing too much and to stop before it gets worse. We are all I think learning about ourselves
 
Back
Top