Alone with Fibromyalgia

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Jen79

New member
Joined
May 10, 2018
Messages
1
Reason
DX FIBRO
Diagnosis
03/2011
Country
US
State
OH
Hi Marie. I too hear all the same things. Yet I do work. I do all the chores. Because in my family we are told we have to function like everyone else. Fibromyalgia is different for everyone. All the symptoms may not be the same. For you it might be worse. For some it's more mild. Are you taking anything for the pain.
 

Marie219

Active member
Joined
Feb 22, 2018
Messages
63
Reason
DX FIBRO
Diagnosis
05/2013
Country
CA
State
ONTARIO
Hi Jen, welcome to the forum ! I have been thinking of writing to you all these days but I was not able until my work was completed.

Thank you so much for your support. In fact, those who have Fibromyalgia can understand better, have compassion toward those who suffer.

I do not take any medication for pain but I go for acupuncture weekly; this helps relieve the pain. Some people think that acupuncture treatment is painful but this is not the case, those needles do not cause us pain at all, to the contrary, they remove pain from our body.

Last year, my family got me a biomat. Before going to bed, I turn it on and select the lowest degree of heat, that is, 95 F ( I cannot bear heat higher than this ) it is warm and very comfortable. Even in winter, with this biomat, I only cover myself with a very light blanket, and it is sufficient to keep me warm for the whole night. Since I easily have pain in my both hands, I can only use the lightest blanket to sleep.
 

Marie219

Active member
Joined
Feb 22, 2018
Messages
63
Reason
DX FIBRO
Diagnosis
05/2013
Country
CA
State
ONTARIO
Hi Nick,

I am so sorry for such delay. All these days, I have been thinking of writing to the members of the forum but it was not possible until I finally finished the editing of the whole book yesterday.

Thank you so much for all your sharing, I hope you would soon have no more pain in your hands so that you would be able to cut the vegetables and cook the meals you like with the recipes you invent.

I agree on using natural means - treating Fibromyalgia with food and not pills; it is so true that we are what we eat. In the Fibromyalgia program that I have been attending, we are a group of more than 30 people, they all say, from their experience, that medication works only for some time, then no more. Hence they are learning other ways as self management, in particular exercise, to handle Fibromyalgia. And we have started to do stretching everyday.

We can use food as medicine. A proper diet increases our health and prevents chronic diseases. Fresh fruits and vegetables are loaded with vitamins, minerals, and phytonutrients; eating five to seven servings of veg. per day makes us much calmer.

Raw green salad, fresh fruit juices made from carrots, cabbage, celery, kale and beets have wonderful healing power while processed and artificial foods heap stress on our body.

Dark green steamed vegetables are better than salad greens. Cooking our meals with onions and garlic not only make the food tasty, they are high in sulphur that cleanses the liver. Celery has strong diuretic powers to treat arthritis and rheumatism.

At home, we enjoy a big bowl of salad daily. I like to have the salad bowl filled with small pieces of apples, carrots and onions plus pumpkin seeds. I love cooking and do invent my own recipes from my experience in Italy.
 

Marspirit

New member
Joined
May 24, 2018
Messages
3
Reason
Undiagnosed
Diagnosis
04/2018
Country
Aus
State
Queensland
So sorry your family is not understanding of your struggle. I am going through diagnosis.. My mum gets it.. She has it.. But she doesn't want to talk about it. She sees it as moaning. So I also I am hoping for support and coping ideas from this site. I think it will be invaluable. Lots of hugs to you.
 

Marie219

Active member
Joined
Feb 22, 2018
Messages
63
Reason
DX FIBRO
Diagnosis
05/2013
Country
CA
State
ONTARIO
Welcome to the forum, Marspirit and thank you for your support.

There are many ways that help manage Fibromyalgia symptoms: for example, having a healthy diet; doing exercise regularly - if not daily at least weekly; gentle stretching exercise is very good too. Aside from that, positive attitude, pleasant thoughts and sights, humor, distraction, all these help alleviate pain.

Our mind plays an important role in coping with illness.The more our focus is on someone or something - outside of our body, the less will be our awareness / feeling of physical discomfort.

In the Fibromyalgia Program which is organized by a health centre / hospital, to my surprise, yesterday, they introduced Mindfulness Meditation, adding to other means for Fibromyalgia self management.

The benefit of practicing Mindfulness Meditation: it helps us with increasing ability to be calm, reducing stress thoughts, anxiety and Fibromyalgia pain; leading to body relaxation with better quality of sleep, thus contributing to having more energy the next day.
 

Nick

Member
Joined
Jan 15, 2018
Messages
29
Reason
DX FIBRO
Diagnosis
01/2015
Country
FI
Hi Marie,

Thank you for your lovely words. Your support and empathy means a lot to me. I’m always delighted by your message, no matter if it’s been one day, a couple of weeks, or a longer time since our last conversation. :)

The fibromyalgia program that you’re attending sounds great! :) I’m happy for that you’ve got the chance to participate in the program and meet other people with fibromyalgia in person.

It’s good you mentioned the build up of stress by artificial, processed foods. I can feel the increasing stress, nausea, and anxiety every time I eat certain processed foods (such as chocolate or cookies).

Fresh fruits and vegetables indeed have a calming effect. I find especially carrots, apples, pears, peaches, and dates good for my body and mind.

I think it’s wonderful that you’re enjoying a bowl of salad daily with your family. I used to prepare a salad almost every day when I followed a raw food diet around ten years ago. Nowadays, I don’t prepare a salad that often, but that is something I’d like to change.

I’ve never been to Italy, although I’m a big fan of the Italian cuisine. I’m glad to hear that the time you’ve spent in Italy has inspired you and influenced your cooking positively. :)

I hope the fibromyalgia program will provide you with a plenty of useful information and methods for living a happier life with fibromyalgia.
 

annlogan

New member
Joined
Jun 1, 2018
Messages
5
Reason
DX FIBRO
Diagnosis
05/2006
Country
US
State
MS
Hello Marie,

Welcome, and know your not battling alone!

Ann

Hello ! I am Marie and I joined the Forums just last night. I have been suffering from Fibromyalgia in silence for five years. People with whom I live do not understand and do not want to understand; they do not know and do not want to know. When they complain of me if I say to them that I have Fibromyalgia, they say that Fibromyalgia is nothing, many people have this, and they can do everything, they go out to work, they come back to do house work and they have children, they function like everybody, and so they want me to do the cooking, washing and cleaning...... like the others. But I am always tired, lacking of strength, sometimes, I can hardly pick up my pillow because it is painful for my hands and fingers. For this reason, I use the lightest blanket at night. At home, I would not mention that I have Fibromyalgia so as not to hear any criticism.
 

Marie219

Active member
Joined
Feb 22, 2018
Messages
63
Reason
DX FIBRO
Diagnosis
05/2013
Country
CA
State
ONTARIO
Hello Ann, thank you ever so much for inviting me to be your friend! I always desire to have some friends from the forum! Thank you again.

Recently, I have attended the Fibromyalgia Program which was organized by the health center / hospital near my place. There are many ways that help manage our Fibromyalgia. Among those, one of the interesting topics which I would like to share with you and the members of the forum:

How do we manage our energy ?

Break large jobs into small steps

Sitting down to work save 50 to 60% energy for the important activities that are important to us.

Use the appropriate work height : hands and shoulders work comfortably. Bending the elbows tighter causes excess use of shoulder and neck muscles leading to pain and fatigue.

Use devices that save energy and protect joints: e.g. power screwdrivers, electric can openers, power toothbrushes, etc.

Pushing items is easier than pulling items; sliding items is easier than lifting things.

When lifting, use both hands and keep the object to our body;
always remember proper posture and body mechanics when lifting.

Planning:
Know our body and the time of day we feel our best; plan to tackle heavier tasks at that time.
Make a simple list and plan and how these tasks will be done.
Choose the easiest way to complete the work.
Prepare items ahead of time.
Crossing completed tasks off the list gives us a sense of accomplishment.

Pacing: Alternate heavy or repeated tasks with easier ones to allow weakened muscles to rest.
Taking small breaks while we are completing larger tasks allow us to regain some energy, especially if we take a nutrition break.
 

Marie219

Active member
Joined
Feb 22, 2018
Messages
63
Reason
DX FIBRO
Diagnosis
05/2013
Country
CA
State
ONTARIO
Hello Nick, just a quick note for now because it is late, I am going to write to you again tomorrow.

I have been thinking that you are going to finish your current studies this month, and you will be a vet ! I am so happy for you.
These past several days, I had a lot of pain with my both hands so much so that I had to wear a pair of woolen gloves in order to lessen the pain; and I offered my pain in prayer for you to become a vet.
Hold on to your dream! With best wishes!
 

Marie219

Active member
Joined
Feb 22, 2018
Messages
63
Reason
DX FIBRO
Diagnosis
05/2013
Country
CA
State
ONTARIO
Hi Nick,

In the Fibromyalgia Program that I have attended, they introduced Mindfulness Meditation as effective natural treatment strategy, adding to other methods, for Fibromyalgia self management. Mindfulness Meditation is a technique that gives us a measure of control rather than our pain and health condition controlling us.

The perception of pain comes from the brain, not from the place that we feel the pain; and we can alter the way the brain evaluates painful stimuli.
Mindfulness meditation helps us focus on awareness of the present moment without judgment. When we close our eyes, breathe deeply, imagine the surroundings and turn our focus away from pain and fatigue, the pain is diminished thus we become more relaxed and can have a better sleep at night.

After attending the program, I have been wondering how we can use our mind and will power to overcome Fibromyalgia.

Our emotions follow our thoughts, when we think of happy things we feel happy; when we recall sad things we feel sad; not only emotions, but our body follows our mind as well. With positive thinking and a healthy diet plus supplements and exercise, we start the healing process, and can live our life with serenity.

Our will power, that is, our determination, enables us to live a life of happiness and success even with Fibromyalgia. Some might not agree with what I am saying, but I firmly believe, if we really want it, we will reach our goal.

I remember one of my Italian friends, at the age of 62, he was preparing to open a school for the poor children in China. Two months before departure, suddenly he had a stroke and became paralyzed. He could not speak nor move except his toes. His family members thought that he was going to die. He was very angry when the priest came to give him the last sacrament because he did not want to die, he wanted to get well and go to China for the poor children. It took him a very very long time, but gradually, he was able to speak; then to move, and did the necessary arrangement for the others to help him fulfill his heart's desire.
 

Nick

Member
Joined
Jan 15, 2018
Messages
29
Reason
DX FIBRO
Diagnosis
01/2015
Country
FI
Hi Marie,

I'm so glad to hear that you've found the fibromyalgia program helpful. :) I've heard about the mindfulness meditation, but I've never tried it myself. Sounds like it could be worth trying. :)

I hope the pain in your hands isn't that intense anymore. The power of your prayer and your support have helped me a lot. You've helped me believe in myself.

The constant pain and other symptoms can sometimes drain almost all my energy. The thought of having the support of friends like you gets me always back on my feet and makes me work harder for a better health.

I completely agree on what you said about the importance of determination. If you are determined to do something, if you're determined to improve something, you're more likely to achieve your goal than in the case that you lack the will power. Of course, if you're having for example a period of depression, it may be rather difficult to stay determined, and to stay positive and focused on your goal.

The story you told about that Italian friend of yours is an amazing example of the importance of determination in our lives. Thank you for sharing the story.

I played some basketball yesterday. After playing basketball for 45 minutes, I was exhausted and my thighs and knees would hurt a lot. I felt dizzy and I could barely climb the stairs to the first floor of our apartment. Today, I've been just stretching and recovering from yesterday's challenging physical exercise.
 

Marie219

Active member
Joined
Feb 22, 2018
Messages
63
Reason
DX FIBRO
Diagnosis
05/2013
Country
CA
State
ONTARIO
Hi Nick,

Thank you so much for accepting me to be your friend!
I guess by this time you have already graduated, congratulations! Are you going to be a vet for the horse?

I have discovered that by soaking my feet in hot water I sleep very well. Recently, I had ingrown toenail and toe infection. My naturopathic doctor told me to soak my feet in hot water with salt for 5 minutes, than dip in the cold water for one minute, and then hot water and cold water again, consecutively for three times, and twice a day; the last time is always with cold water.

I forgot what she said and soaked my feet in hot water for 15 minutes instead of five, when I was doing the second time in hot water, I felt so sleepy that I could hardly open my eyes. Since then, I have been having good sleep at night and get up refreshed in the morning. This method is very helpful for my toe's healing as well.

A month ago, a couple came to live with us, because they had a big problem with their house and needed to repair it, so we offered them our hospitality.

The husband is a Chinese doctor, he is very good at acupuncture. I had my Fibromyalgia flared up because I did some heavy works in the wrong ways with the wrong instruments. My back, elbows were so painful that it was very difficult to bear, and my hands were red and swollen with burning pain.

Our guest doctor helps me with acupuncture. Each time he seeks the root of the problem and treats it with the needles; with a few treatments I am already well. Hence I have come to realize that acupuncture can put all my Fibromyalgia symptoms under control. This doctor's treatment is quite different from my other acupuncturist: the former doctor put the needles to where the muscles are; but our guest acupuncturist put most of the needles to where are skin and bone, so it causes me a little pain but each pain lasts only for a few seconds and then I feel well for several days. It is worth to suffer for a short duration of pain, because the benefit is great.
 

Nick

Member
Joined
Jan 15, 2018
Messages
29
Reason
DX FIBRO
Diagnosis
01/2015
Country
FI
Thank you, Marie! :) I graduated on June 27. Yes, I'm going to at least give it a try and be a vet for the horse. At first, I'm going to volunteer in an equine clinic in Finland. The clinic is a bit far from my hometown, but I'm grateful for having the chance to gain some experience by working in a clinic for horses. I'll visit the clinic soon (within the next few weeks) to see the place and to discuss the details regarding my voluntary work.

It's very kind of you to offer the couple your hospitality. :) I think it's wonderful that the Chinese doctor can return the favour by treating you with acupuncture.

I'm glad to hear that soaking your feet in water has helped you sleep better. :) I'll try it next time when I can't sleep.

The last couple of weeks, I've been trying to lose some weight by increasing exercise and eating healthier and only as much as I need for all the daily activities and tasks. I'm not going to lie to you: it hasn't been easy. I often eat too much. Every sit-up is done in great pain, with all the working muscles asking me to give up. Running around the basketball court, taking the shots, driving to the basket for a lay up. It's a lot of fun, except for that my lungs aren't quite keeping up with the pace and the muscles of the legs and arms are running out of energy, while the pain is sneaking in.

I firmly believe that I can improve my functionality (improved general condition, muscle strength, and less pain) by regular physical exercises and healthier eating habits. I'm not saying, I'll be able to make the pain disappear completely. My message is that with some small changes (that can be variable depending on the person) in our lives, we can significantly decrease our suffering and thus live a happier life, despite the challenges caused by a chronic condition.
 

KJJ44

New member
Joined
Jul 13, 2018
Messages
2
Reason
DX FIBRO
Diagnosis
05/2018
Country
USA
State
Washington
Hi Dawn,
I am sure you are right in that most of us feel alone a lot of the time. My sister and daughter have gotten better but it took about 4 years for them to start acknowledging fibro as real.
 

Marie219

Active member
Joined
Feb 22, 2018
Messages
63
Reason
DX FIBRO
Diagnosis
05/2013
Country
CA
State
ONTARIO
Thank you, Marie! :) I graduated on June 27. Yes, I'm going to at least give it a try and be a vet for the horse. At first, I'm going to volunteer in an equine clinic in Finland. The clinic is a bit far from my hometown, but I'm grateful for having the chance to gain some experience by working in a clinic for horses. I'll visit the clinic soon (within the next few weeks) to see the place and to discuss the details regarding my voluntary work.

It's very kind of you to offer the couple your hospitality. :) I think it's wonderful that the Chinese doctor can return the favour by treating you with acupuncture.

I'm glad to hear that soaking your feet in water has helped you sleep better. :) I'll try it next time when I can't sleep.

The last couple of weeks, I've been trying to lose some weight by increasing exercise and eating healthier and only as much as I need for all the daily activities and tasks. I'm not going to lie to you: it hasn't been easy. I often eat too much. Every sit-up is done in great pain, with all the working muscles asking me to give up. Running around the basketball court, taking the shots, driving to the basket for a lay up. It's a lot of fun, except for that my lungs aren't quite keeping up with the pace and the muscles of the legs and arms are running out of energy, while the pain is sneaking in.

I firmly believe that I can improve my functionality (improved general condition, muscle strength, and less pain) by regular physical exercises and healthier eating habits. I'm not saying, I'll be able to make the pain disappear completely. My message is that with some small changes (that can be variable depending on the person) in our lives, we can significantly decrease our suffering and thus live a happier life, despite the challenges caused by a chronic condition.

Hi Nick,

I am very happy that you have graduated! Congratulations! Have you visited the clinic for volunteer work, it would be a great opportunity to gain experiences.

My friend went to see the doctor, her goal was to lose 10 pounds. The doctor told her to eat apples when she is hungry. Because apples are high in weight loss fiber that helps in reducing the fat from the belly. Besides, fiber fills us up so we would less likely overeat, thus it helps control our weight.

Aside from apples, doctor told her to eat more vegetables and less carbohydrates. Green tea and cinnamon powder are great fat burner. Garlic reduces belly fat because garlic regulars our blood sugar and insulin level, so our body can maximize fat burning for energy. Losing weight is helpful in reducing discomfort, and exercise, which is important for Fibromyalgia sufferer, becomes easier for us.

I wanted to write sooner to the members of the forum, but I have been going through a very hard time, so full of stress and under a lot of pressure due to my work and situation; I always work beyond mid-night. On top of all these, I struggle alone, it is sad; but it is useless to tell the others who do not have the same experience, they just cannot understand how we feel.
 
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