Fibromyalgia.. Help Please

Craig_hyde

Ok,I''ll be the first to admit that the title is a bit misleading as I don't have it, yet my friend does.

A quick look at the NHS site defines it as:
Fibromyalgia, also called fibromyalgia syndrome, is a long-term condition which causes pain all over the body.Fibromyalgia causes widespread pain and extreme tiredness.

Basically the nerves go nuts and stimulim is interpreted as pain.

ANYWAYS back on track, she's scared of letting people down and scared of people thinking she can do more. She doesn't want people to think that because she can run, I don't know 1km and not 10km that she's lazy.

The reason I'm posting this is because I want to show her that this community isn't like a boot camp, but more of a nudge to help. She wants to lose weight, but lacks willpower in case she lets anyone down. I say that it's her journey, and support really does help. So if anyone has experiences, or knows someone with Fibro and can give her help/advice. Just leave a comment. (I'll be showing her the thread)

nguk123

Exercise is good for general health, the cardiovascular system etc.
But its not required for weight loss. Creating a reasonable caloric defecit through diet alone achieves weight loss.
Tell your friend she shouldn't obsess about the fitness side, or use it as an excuse not to adopt healthy eating habits.
Good luck to her, it sounds like a horrid condition :-(

francesmj

I don't think there's any way around the fact that she won't necessarily be able to do as much as other people. But that doesn't mean doing nothing. I would advise her to take it very, very, VERY slowly (as in painfully slow to start). I know if I overdo it I'm out of action for weeks, which kind of defeats the purpose. It has also taken a long time for me to understand that. But if I work slowly at it, I can build my fitness and stamina. I found acupuncture was extremely helpful in lessening the pain, which also helps with the exercise thing.

If your friend is anything like me, FMS will also mess mightily with her mind (including depression). The only way out of that I've found is to work on my physical and mental health. It's not a linear process, and it's different for everyone - FMS or not - but it does help.

The most important thing I've figured out (and this is fairly recent) is that although it's part of me, FMS certainly isn't all of me. I let it define me and hold me back for a long time, thinking that doing just small things wasn't enough, I had to work at the same level as people without it. That's so wrong-headed; all I end up with is nothing when I think like that.

So in a nutshell: do what you can physically, don't push too hard, and keep at it. There are plenty of people on the planet without FMS who struggle with physical activity; they also have to take it one small step at a time. It isn't a death sentence, it's just a pain in the backside... and shoulders, and hips, and hands, and toes, and... lol!

summersbest

I have fibromyalgia and know EXACTLY what she is going through in terms exercise. Most days I barely have enough energy to get out of bed and actually function throughout the day let alone try and work out. Although fibromyalgia is not a death sentence it can wreck havoc on you both physically and emotionally. So right now I am concentrating on my food intake and hoping the rest will follow.

Tell your friend I would be more than happy to be friends with her on this site and we can support each other. I take any help I can get.

hfester

I have an auto-immune disorder that causes pain and fatigue sometimes that are similar to Fibromyalgia. I would be happy to support, as well. The pain hasn't stopped me yet because I'm not going through a flare, but the fatigue is kicking my *kitten* right now. You just do your best! That's ALL that matters.

HardcoreP0rk

Oh fibromyalgia. What a sham. Some doctor pretty much gave her a lifetime excuse to be lazy and depressed. Pity.




Good news is that fibromyalgia symptoms are often alleviated by the same things that alleviate depression...like SSRI's and exercise. So I have no problem cheering her on 1km at a time.

hpsnickers1

I was diagnosed with Fibro in 2010. I learned about a year or so later through my own research (and blood sugar monitoring) that it was Reactive Hypoglycemia (aka prediabetes). (And I am about 3% below the average diabetes risk according to my genetics)

PRIMAL BLUEPRINT AND MARK'S DAILY APPLE. This is the best thing I have ever done for myself - in my entire life
Body composition is 80% diet. The other 20% are a combo of genetics and exercise. Walk. That's all she has to worry about right now.

The only time my "Fibro" pain shows itself is when I've been junking on too much sugar, carbs and frankenfood. I take no pills (couldn't afford them). I eat real, whole foods. I eat plenty of healthy animal fats (and coconut oil). I don't do hellacious amounts of exercise (I do get out and "play" when I can though. My exercise regimen is life)

And drugs just treat the symptoms. The root cause in inflammation. The root cause of all chronic diseases today is inflammation.

ntdrive

http://www.livestrong.com/article/195310-foods-to-avoid-on-the-fibromyalgia-diet/

francesmj

"Oh fibromyalgia. What a sham. Some doctor pretty much gave her a lifetime excuse to be lazy and depressed. Pity."

No doubt some people will use the diagnosis as an excuse to do nothing, but just an FYI: They having been trying to figure this out (under various names) since the 1800s. It's not a sham.

And you're right, SSRI's can be helpful for some people, it's just that not all people can tolerate them.

HardcoreP0rk

"Oh fibromyalgia. What a sham. Some doctor pretty much gave her a lifetime excuse to be lazy and depressed. Pity."

No doubt some people will use the diagnosis as an excuse to do nothing, but just an FYI: They having been trying to figure this out (under various names) since the 1800s. It's not a sham.

And you're right, SSRI's can be helpful for some people, it's just that not all people can tolerate them.

I have no doubt the symptoms are real. The sham part is in the lack of objective diagnostic procedures and the flimsy evidence around drugs like Lyrica.

leighann881

Oh fibromyalgia. What a sham. Some doctor pretty much gave her a lifetime excuse to be lazy and depressed. Pity.




Good news is that fibromyalgia symptoms are often alleviated by the same things that alleviate depression...like SSRI's and exercise. So I have no problem cheering her on 1km at a time.

this^^

francesmj

Ah. Thanks for the clarification, Hardcore. And I agree with you about the Lyrica thing. Inflammation, as another poster mentioned, is the issue. Lots of ginger tea, turmeric... there are dietary ways to do the best you can. Oh, and I agree with you about the exercise, too.

summersbest

"Oh fibromyalgia. What a sham. Some doctor pretty much gave her a lifetime excuse to be lazy and depressed. Pity."

No doubt some people will use the diagnosis as an excuse to do nothing, but just an FYI: They having been trying to figure this out (under various names) since the 1800s. It's not a sham.

And you're right, SSRI's can be helpful for some people, it's just that not all people can tolerate them.

I have no doubt the symptoms are real. The sham part is in the lack of objective diagnostic procedures and the flimsy evidence around drugs like Lyrica.

I take Lyrica and have definitely seen a difference fore the good. Was in almost constant pain before being prescribed it. Unfortunately it only helps in alleviating the pain and not the chronic fatigue

summersbest

I take Lyrica and have definitely seen a difference fore the good. Was in almost constant pain before being prescribed it. Unfortunately it only helps in alleviating the pain and not the chronic fatigue.

mjculbertson4512

As the mom of an FMS patient, I had to take a deep breath and back off the sham statement. :explode:

Diet helps, as does moderate exercise. A good day is really tempting to overdo, and sometimes our daughter pays for it the next day. As a teen, no drugs are approved, so our young lady has had to tough out the bad stuff. Her life plans have changed, but she is perservering on her new path and is headed to college this fall.

Sometimes I just want to pull her into my lap and give her a hug and there are times that a hug hurts to much to receive.

My advice, do what you can, get help with the rest. Get a good support team in your friends corner. Health care, friends, foods, etc.

Daiseydonna

I have Fibromyalgia and everything that goes with it!! I was on pain meds for six months, took 2 months to wean myself off them. I am in daily pain. I wake up and say to myself. I will not let this keep me down. It takes a little while to get up and going. But I do get up and go. My latest rotten pain is in my jaw! oh baby this is horrible. Helping me keep to my healthy diet thou!!! lol. I do exercise in moderation. My full exercise is someone else's warm up. I have learned if I over do it. I am no good to anyone.

It is most beneficial to someone know and support you. I had my family read and reread about Fibro. I have trouble forming my words, I talk backasswards. I forget stuff. I love lists and sticky notes. I get really embarrassed when meeting new people because I can not find simple words to carry the conversation. this has stopped me from talking to much and interacting with new people. I do not want to feel isolated . I recently just decided that If I am going to get to know people I let them know a little about what I have.

My diet is getting better since joining this site. I hope to lose the weight in a healthy way. I do have my off days! I love that I can see keep track of what I eat. This is going to help me soooo much! I have lost 4 pounds in two weeks and it does not sound like much but I am very happy about it.

I hope everyone is feeling good today!

Daisey

kmpublishing2

I have fibromyalgia as well, and as one of the previous posters said...I had to back off and take a deep breath on the "sham" comment. The follow-ups on it do not make it better.

For those who don't know, fibromyalgia can quite literally, steal your life. Every female on my mother's side of the family has it, and it affects everyone to varying degrees. I personally was diagnosed at a VERY young age, and I can say that I don't remember what it is like not to hurt every second of every day. But to put it in perspective-- I now have a very high pain tolerance for other things, since I'm basically used to hurting. I have unexplainable muscle spasms, and I remember a whole month in high school that I went to school in a neck brace and learned from a place in the back of the classroom while lying on the floor-- I couldn't hold my head up and any kind of movement brought tears to my eyes.

There are times that people with fibromyalgia feel like one more step is LITERALLY too much. There are times I swear my body and my mind aren't connected-- or are at war with each other. Most people don't understand this, and don't have any idea what it means for a person with fibro to even get out of bed in the morning. I have tried all of the medicines, all of the "diets" and all kinds of different treatments to help...there is only one thing I've found that makes a big difference and isn't addictive while messing up other things--exercise. As hard as it is to get going, once you start moving (work up from a tiny amount slowly, and just keep increasing as you can) you will notice a HUGE difference. I can say honestly that if I skip exercising one day, I know it the next. It hurts ten times as bad. But if you can do it, and stick with it...it's totally worth it. I haven't had a flare-up in almost a year, and even my moments of "one step is too much I might pass out" have cut down to once a month or less.

Many people don't understand...and honestly, I don't expect them to. If you haven't lived with constant pain that you can't control, can't stretch out, and are completely hopeless to do anything about, I expect you to come up with some derogatory comment about how it's all in our heads, it's because we're lazy, don't want to do anything and are looking for an excuse. But you know what? I dare you to be in my body, for one day. Just one. I guarantee you can't make it more than an hour...because I'm stronger than you are. I do this every day, knowing it's coming up again tomorrow, and I STILL GET UP. I keep going...because I can.

A friend of mine likes to refer to it as "fibromyalgia: the beating without the bat". I think of it more as..."I live in spite of fibromyalgia, not with it."

If your friend decides to join MFP and hang out, please encourage her to add me as a friend. I understand...and you can't disappoint someone who refuses to be disappointed. Life with fibro is hard, but life is still worth living, even if we have to modify it a little from what most people do.

julieharrell1

I have celiac disease which is also an autoimmune disease. It also saps your energy, because your immune system is too busy trying to kill you and not doing its correct job. I constantly fight exhaustion after doing the simplest things. I too felt judged unfairly by people in my life. I understand. People on this site supportive.

Justacoffeenut

http://www.myfitnesspal.com/groups/home/11041-living-healthy-with-fibromyalgia

Full of understanding people who all have it. My advice. They have to learn what works and doesn't work for them cause everyone is different. But that doesn't make what they are going through less real. Surround them self with as much knowledge as they can and a great support system. Then take it one day at a time. As long as you are doing your best you are not letting anyone who really cares and loves you down. Including yourself.

liesevanlingen

My mom and my older sister both suffer from fibromyalgia. Symptoms can be eased somewhat by diet and exercise--my sister has gotten some good results with B12 and Magnesium supplements. Losing weight, if the person is overweight, is supposed to be helpful. This important thing to remember is to pace yourself and listen to your body. Don't listen to the ignorant comments of rude, insensitive people who don't know any better. Pity them for their stupidity and move on.

jmom376

Hi all, I also have Fibromyalgia. I don't have time to say much at the moment (at work). I do not take any drugs, but have found that I have more energy when I am exercising and eating healthier. I am still working on finding the happy balance between pushing myself too much and not pushing myself enough.

Anyone is welcome to add me to their friends list if they like. I am on pretty much every day and pretty supportive. I will check out the group later on.

rose_turtle

I agree with previous comments that fibro can affect not just your body, but your mind. It eats away at your sense of self, and if you have a long drawn out diagnosis process, that also causes a lot of fear and anxiety. I was diagnosed with lupus and several forms of cancer before finally arriving at fibro.
I feel better when I'm exercising at least a tiny bit every day. 20-30 min slow walks are as good as it gets some days. Other days, I feel like I can be as active as I used to, but then I regret it the following day. Encourage your friend to join, and friend the people in this thread. I always appreciate new friends and have a couple with fibro on my list.
Good luck to you and them!

HardcoreP0rk

It is neither ignorant nor rude to take issue with the way the medical community handles the constellation of symptoms currently described as "fibromyalgia." Even in medical school, I was taught that the diagnosis is extremely controversial. There is an extremely large contingent within the medical community that feels the disorder AND the current FDA approved treatment is all a bunch of nonsense.

I'll reiterate, I'm sure the *symptoms* are real...but what all these patients have in common is questionable. If you have been diagnosed, I'd encourage you to continue seeking answers, especially if drugs like Lyrica aren't resolving your symptoms.

No one on MFP is going to call you lazy if a medical condition prevents you from having the energy or the ability to do certain things. But don't let the diagnosis define what you feel you can and should do, especially since the diagnostic criteria are SO UNBELIEVABLY FLIMSY.

HardcoreP0rk

and you can't just call someone ignorant and rude because they disagree with you...

sheilatush

I have fibro and Lupus and several other immune disorders last 24 years...But here I am dieting and exercising...was told my Specialist to get the weight off and get moving more...So here goes...

Get your friend to come and join us...Everyone is so friendly and supportive

LisaInUP

My BFF has fibromyalgia and some other complications that go with. One has to take it day by day and do the best you can on that day. In her situation she has found that exercise helps, sometimes the best she can do is pool-based exercise and other times it is treadmill or walking.
Each person has to figure out what works for them with or without other health complications :happy:

cmkell87

I have firbromyalgia, I was diagnosed with it about 8 years ago. No one here should judge you, if they do you do not have to have them on your friends list! Anyway, look for supportive friends that understand you.
For me the best thing to do is starting small with exercise. Start with walking and build up to running ect... What I have learned is overdoing it will cause flair ups. I now run and am doing P90X. Exercising will make you feel better, clean eating will also help (As it will for most people). To help with lactic acid build up a shot of apple cider vinegar does wonders!