Showing posts with label online support. Show all posts
Showing posts with label online support. Show all posts

Wednesday

Fibromyalgia Self-Management Checklist

 

Here is a Fibromyalgia Self-Management Checklist — designed to help you build daily habits, track symptoms, and take back a sense of control.

Fibromyalgia Checklist


✅ Fibromyalgia Self-Management Checklist

Use this weekly or daily to help pace, manage symptoms, and track what’s working for you.


🌞 Daily Basics

TaskDone?
Got at least 7–9 hours of sleep (or tried to)☐
Took medications/supplements as prescribed☐
Did gentle movement (stretching, walking, yoga)☐
Ate regular, balanced meals☐
Stayed hydrated (6–8 glasses water)☐
Took breaks/rested when needed (pacing)☐
Practiced relaxation (meditation, deep breathing, music)☐
Avoided overexertion (“push-crash” cycle)☐


📒 Symptom & Trigger Tracker

SymptomNoneMildModerateSevere
Pain☐☐☐☐
Fatigue☐☐☐☐
Brain fog☐☐☐☐
Mood (anxiety, sadness)☐☐☐☐
Sleep quality☐ Poor☐ Fair☐ Good☐ Excellent

Triggers Noted Today (check any):
☐ Weather change ☐ Stress ☐ Overactivity ☐ Poor sleep
☐ Food sensitivity ☐ Emotional strain ☐ Unknown


🧰 Relief Strategies Used Today

StrategyHelped?
Topical pain relief (e.g., Tiger Balm)☐ Yes ☐ No
Heat/cold packs☐ Yes ☐ No
Gentle stretching☐ Yes ☐ No
Mindfulness/meditation☐ Yes ☐ No
Short rest/nap☐ Yes ☐ No
Light activity to stay loose☐ Yes ☐ No
CBT or journaling☐ Yes ☐ No

💬 Notes / Wins / Challenges

(Write 1–2 short reflections each day or week)

  • Today I felt:

  • What helped most:

  • What was hardest:

  • Something I’m proud of:


❤️ Weekly Self-Check

QuestionYes / No
Did I listen to my body without guilt?☐ Yes ☐ No
Did I ask for help when I needed it?☐ Yes ☐ No
Did I say "no" to protect my energy?☐ Yes ☐ No
Did I find something small that brought joy?☐ Yes ☐ No

Fibromyalgia Checklist for Self-Management


Saturday

6 things that Lady Gaga has said about Fibromyalgia

 6 things that Lady Gaga has said about Fibromaylgia


It's good that Lady Gaga was talking openly about fibromyalgia, don't you think? Here are some things that she has said about living with it...

Living with any chronic pain condition is not fun and to get support for it from people in the limelight is wonderful. I think this is especially true of Fibromyalgia which still has the stigma of not being taken seriously, by many people, even some in the medical profession. When people are in the process of getting a diagnosis we have to tell them to make sure they go to a professional who believes in Fibromyalgia. You don't have to say that about many other conditions!

So when Lady Gaga began talking about having Fibro it felt like the Fibro community around the world was being given validation.

As we would expect from Lady Gaga she was being outspoken about what it's like to live with this chronic pain condition.





In her 2017 documentary Gaga: Five Foot Two we see her in pain and having ice-packs, massages and medications but it is not explained. After the release of the film Lady Gaga tweeted to her fans: "In our documentary the #chronicillness #chronicpain I deal w/ is #Fibromyalgia I wish to help raise awareness & connect people who have it." 12th September 2017.



things that Lady Gaga has said about Fibromaylgia
12th September 2017

Lady Gaga quote about Fibromaylgia
12th September 2017 on twitter


In her cover interview for Vogue, in October 2018, Gaga discussed her past trauma and it's affects on her chronic pain. "My diaphragm seizes up. Then I have a hard time breathing, and my whole body goes into a spasm. And I begin to cry," she told the magazine. "That’s what it feels like for trauma victims every day, and it’s . . . miserable. I always say that trauma has a brain. And it works its way into everything that you do."

In the same interview she talked about how people perceive fibromyalgia and other chronic illnesses:
"I get so irritated with people who don't believe fibromyalgia is real. For me, and I think for many others, it's really a cyclone of anxiety, depression, PTSD, trauma, and panic disorder, all of which sends the nervous system into overdrive, and then you have nerve pain as a result," she said. "People need to be more compassionate. Chronic pain is no joke. And it's every day waking up not knowing how you're going to feel."

Quote about Fibromyalgia by Lady Gaga
Quote from Vogue 2018


Lady Gaga on Fibromaylgia
Quote from Vogue 2018

Lady Gaga on Fibromaylgia
Quote from Vogue 2018

Lady Gaga quote about Fibromaylgia

We hope that Lady Gaga will continue to speak out about Fibromyalgia to help the cause of Fibro. We wish that she would talk about her treatments to help the millions of people who live with it. 

Monday

Health check for Fibromyalgia patients


Health check for Fibromyalgia

Living with the pain and fatigue of Fibromyalgia is a daily struggle.

The WebMD health check - Fibromyalgia Assessment - can help by:
  • assessing your symptoms 
  • offering you treatment options 
  • helping those who are not yet diagnosed. 
So it can give you tips to help you cope with fibromyalgia and the good thing is that it is free and a simple online questionnaire.

You are rated on your health, well being and symptoms.

You receive information on medications available and ways to change your habits to decrease your pain. While the answers are quite a generalised response I feel that it is good especially if you are just diagnosed with Fibromyalgia, or unsure if you have Fibromyalgia or just want to check that there is not something else you could be doing to help yourself feel a bit better.

Start here.

WebMD wants you to know that their tool does not provide medical advice. It is intended for informational purposes only. It is not a substitute for professional medical advice, diagnosis or treatment. Never ignore professional medical advice in seeking treatment because of something you have read.


HERE ARE SOME OTHER FIBROMYALGIA QUESTIONNAIRES that may be of interest to you:

Health check for Fibromyalgia patients

Have you heard of the Fibro Log Tool


This online tool from American Chronic Pain Association will help you log your pain and fatigue with fibromyalgia. It is a good way to daily track your symptoms and progress while allowing you to save and print off the log to share with your doctor. 
When you understand what makes your pain worse, you can begin to reduce or deal with your pain triggers. The more you know about how your body reacts, the more you can be in control. Being in better control may help you manage your pain.
 Fibro Log Tool

LINKED UP AT FIBRO FRIDAY No.5

Tuesday

Keeping my house clean when chronically ill

cleaning tips when sick and in pain
This morning I cleaned my house a bit: the bathroom and the kitchen.

I feel really happy and more organized and clear headed when my house is clean and organized.
Of course, with chronic pain and illness, this is something that I have had to lower my standards on, but there are things I can do to keep it generally clean and tidy.

How I keep my house clean when chronically ill


Here are the basic habits I try to maintain:

1. Take the rubbish out every day: this is the basic must do thing for me because if the bins are full then the house does not get tidied of rubbish.

2. Have a clean and clear sink: this is the basics in the kitchen because a cluttered sink prevents any more cleaning happening in the kitchen.

3.Make my bed in the morning. Sometimes I have to lie back down on it after I make it but it is great to know it is made.

4. Tidy up one area before I leave the house. It’s wonderful to come home to a place where you can sit and relax after you arrive home. Don't forget it could be just your favourite chair and side table.

5. Tidy a kitchen bench before I go to bed. Waking up to a dirty bench where you prepare coffee, tea or breakfast is stressful. Having a clean bench is wonderful start to the day.

6. Delegate. Get others in the house to put away their own stuff and occasionally have a 10 minute tidy up that everyone joins in. It makes it more fun and when 5 people participate that's a total of 50 minutes cleaning!

7. Sweep. Just sweep the main thoroughfare and the kitchen. Don't try and be perfect.  I have wooden floors and a giant mop that glides over the floor. I do this most days and do not worry about the corners. It's amazing how a clean floor can make the house look so tidy.

These are my lucky seven. Of course I would love to get more done but over time and with the help of a pain management specialist I have become more realistic.

Handy tips:

1. Pacing: I must pace myself or I suffer the next day so I break my tasks up into 10 minute chunks. I figure I can do most anything for 10 minutes and then I have to change the activity or set of muscles I am using. How about you? Can you do 15 minute tasks? Some people may only be able to do 5 and some days that is me but, hey at least I am getting something done.

2. Lowering expectations. We may have all had a spotless house once but our situation has changed. I try to have one room where visitors can go that is clean and tidy. If I am having a good week the front hall might be clean too!

3. Have a simple house. Having many ornaments means more things to clean and more guilt when we can't clean them. I have decluttered my house to the bare minimum so I can maintain it. Even that is an effort, but the rewards are great.

Get many more coping tips for living with fibromyalgia or any chronic illness by joining my email list below.

Many thanks to Leo Babauta and FlyLady who have helped me over the years with cleaning ideas.

Saturday

What fibro sites I am visiting lately

In no particular order:

1. Aptly named The Practical Fibromite has lots of help for the chronically fatigued including handy hints for coping with Christmas and recipes that are quick and easy.

2. Gonna eat worms, who blogs nearly every day, The turgid, tortured tales of a middle-aged (if the average person lives to 99), somewhat disabled lesbian -- Sometimes amusing, sometimes whining, sometimes ranting, but ALWAYS thinking! What more can i say?

3. Checking out a male perspective at Fibromyalgia—Peter's Journey

4. The blog of a young Canadian woman in her late 20s struggling with chronic pain and invisible illnesses called Angst and Thanks. She has been diagnosed with chronic daily headache, migraine, bipolar (cyclothymic) and borderline personality disorders. The possibility of fibromyalgia is currently being investigated.

5. Then I check in to see how Fightin the Fibro is going with her day

Get real info on fibromyalgia and how it affects people's lives

Find interesting blogs where you can get first-hand information from many people with fibromyalgia.
Visit the blogs of real people with fibro describing their life and symptoms.
Visit Fibro Blogger's Directory.
If you have a fibro blog join us and help educate people about real life with fibromyalgia.

Tuesday

For Fibromyalgia Awareness Day


This is my contribution to FAD Fibro Awareness Day -

Let's show the world how many we are and what fibro is about. Let's not be invisible anymore.

Do you have a blog or website about Fibromyalgia? Would you like to network with other fibro bloggers? Would you like to add your blog to the ever expanding list of Fibro voices out there? I think it's a really great way to support each other, get more visitors to our sites and stand as a united group of fibro sufferers. Maybe we can even do some good.
If you are interested go to the Fibro Blogger Directory
National Fibromyalgia Awareness Day aims to increase awareness of FM and provide support to those coping with the illness.

Friday

What's your top 3?


What helps your fibromyalgia?
We all need ideas because we all need to self manage our own condition. Being pro-active is important as there is no known cure, so far, and therefore your doctor can only help to a certain level.

The EULAR guidelines for the management of fibro recommend making non-pharmacological interventions a priority.

Please post your own suggestions in the comments so we can make a large list.
This may help on days when we are low and can't think what to do to help ourselves (No one else can really help us! I heard a funny thing "Doctors are just there to amuse us!")

These are 3 that I can think of that help me.
  • The spa bath or hot tub

  • Getting to bed before 10.30 pm

  • Thinking positive
MedicineNet's top 3 things patients can do to help themselves are:

  • Self-education
  • Stress reduction
  • Exercise
Mayo Clinic's options for coping include:
  • Relaxation: Deep-breathing exercises, Progressive muscle relaxation, Meditation and Visualization.
  • Avoiding negative self talk and turning it into positive talk.
  • Asking for help and having a list of people on hand for the difficult days. 




You might also like to read: What works for me to help fibromyalgia

Monday

You need support from others when living with Fibromyalgia

You need support from others

Fibromyalgia, like many other conditions, can lead to isolation and loneliness. Social isolation is a problem for many people and especially for those with chronic illness and chronic pain.  

A huge part of Fibromyalgia is the pain, which in itself is isolating, as we feel that others do not understand or want to know what we are going through. This can make us withdraw.

Sufferers need to make an effort to get support and I feel getting support really makes a difference on so many levels. It is a great way to find out what treatments may work for others and may be worthwhile to try. It is wonderful to just be with others who understand what you are going through. Connecting with others can provide much comfort.


One friend, one person who is truly understanding, who takes the trouble to listen to us as we consider our problems, can change our whole outlook... Dr Elton Mayo

 

Luckily there are a few options for finding support - we can attend a pain clinic (try your local hospital), find a local support group that has get-togethers or find some online support if getting out is not possible due to mobility issues or the closeness of meetings. 

Below I have started a list of different Fibromyalgia support groups available and I would love to hear from you if you have some to add.

SUPPORT MEETINGS

National Fibromyalgia and Chronic Pain Association (NFCPA) List of American Support Meetings

Canadian Support Groups

ONLINE SUPPORT:

FIBRO FORUMS 
Daily Strength Forum Fibromyalgia Support Group

Fibromyalgia Forum founded in 2008 and run by volunteers who have Fibromyalgia.

Patients like me Fibromyalgia Forum with over 112,000 members.

Patient

FACEBOOK GROUPS: There are hundreds of these groups. I have listed the one I am in.
FIBRO CONNECT  To join this group please 'Friend' me on Facebook then request an invite.

You may also be interested in the following:
Fibro Blogger Directory with over 5,000 in the group
Fibro Files with over 2,500 people in the group


FIBRO SUPPORT in Australia will be a coming blog post - watch this space.

The emotional support derived from support group participation can help reduce stress, which can have a positive impact on health. ~ Winchester Hospital.


You need support from others when you have fibromyalgia