Anyone else here have fibromyalgia?

[Former_Member]

I was diagnosed with fibromyalgia after years of pain and worry, and was wondering if anyone else here has had it and what has been your experience with it and with coping with it? I am having a hard time accepting it from my doctors as an explanation, yet my life has drastically changed for the worse in terms of quality. I am exhausted all of the time and stressed because of that.
How has fibromyalgia affected your life and work? I find it hard to keep up with daily chores, let alone extra time to do crafts and feel creative. I am pushing on but have two young children and am in full time college. I need some help on how to deal with this disorder best.
How do you manage your etsy business with fibromyalgia?
If you have some other sort of debilitating issue feel free to chime in as well.

[Former_Member]

Hi Tarren I was diagnosed with fibromyalgia almost 20 years ago. I only opened my shop here in June. It's not an easy road and first and foremost you have to learn to respect your limitations. I think that's the hardest part for most of us. Over time you will learn how to manage yourself, much the same as people with more visible limitations ie amputees. It's the same thing, you must re-learn how to cope with things differently. I don't work outside the home and that certainly helps me although it hurts financially. Exercise is crucial for me - yoga and walking. Allow yourself to rest when you need it and try not to let stress build up. It's a very difficult illness - I don't want to overload you with too much! Feel free to contact me anytime! Wishing you all the best and much success here on Etsy

[MerceryMerceryMe]

Hey, Tarren.....;)
I've been to many doctors, and they just kept blowing me off, telling me there's nothing wrong with me. Yeah, right, I'm making it all up. The only doctor who has ever listened to me, a neurologist, said, "You'll have to re-learn how to do everything, right down to your breathing." I haven't been diagnosed by a doctor, technically, but I'm positive this is what is going on.
Like Deborah, exercise is crucial for me too.
I used to be a runner, then when this hit me, I had to stop because arthritis came with it. I use an elliptical machine, go for walks, and do yoga. When I can, that is. I'm looking into Tai Chi as well. Deep breathing helps a lot too.
Many days, I can't even move, I'm in so much pain. I find when I have a good day, I over exert myself, and pay for it for the next couple days. It's very frustrating.
I've always been a healthy eater, but I'm learning about how much certain foods can affect things, even if they are considered healthy. I've removed white and wheat flour from my diet, and have moved toward more nutrient dense foods. I've also tried to remove acidic food from my diet as well. Many times, conditions are cause by an over acidic ph level. Try to get your body as alkaline as possible, through diet and stress reduction. I'm trying to get more Omega-3's in my diet and more magnesium as well. I try to live by the Hippocrates saying "Let food be thy medicine, and medicine be thy food."

[Former_Member]

Sarah - alot of good points! I take Omega 3 and have definitely noticed improvement - magnesium doesn't generally agree with me other than in my bath. I would suggest investing in a good heating pad as well. There will be days when it's your best friend!

[MerceryMerceryMe]

Yep, I take a salt baths on a daily basis.
I use rice packs, myself, Deborah. I like the moist heat that comes from them. It's crazy, most people hate heat and humidity, but this summer, we had temps in the 90's and 100's for much of the summer here in WI, and I would just go sit in my car and it would feel soooooo good! I keep telling my man that he needs to buy me a sauna. ;) VERY therapeutic!

[Former_Member]

Lucky me I live in a very very warm climate. But the winter cold is killing my joints.
I am also taking omega3s and sublingual B vitamins which help a bit with energy. I recently started taking cymbalta due to a very very bad flare up I have been having that has been ongoing. I never wanted to be on medications and even still I get doctors who treat me like a hysterical lunatic like it is all in my head or they think I ma depressed. It's frustrating me a lot lately.
Also my husband works and doesn't understand what fibro even really is (and neither do I exactly), he works 24/7 on call for a towing business and cannot help me withmy 2 and 4 year old sons. My mom gets bitter if I need her help and when I am hurting severely I DO need help. It's so difficult to explain to people who don't understand why you feel good for a few hours and horrible the next... Or a few weeks...
So what is really stressing me out is trying to work one day a week, have my etsy shop thriving, go to college full time and find help when I am hurt or sick. My mom makes me feel SO BAD if she watches my boys, and luckily I have a wonderful BFF who helps when I am hospitalized or something. But yeah, people just don't understand.
I feel they don't understand that it's not a matter of me not wanting to switch the laundry clothes... It's a matter of me being too exhausted physically to do it. I get down feeling angry that drs don't have more and better answers and it just sucks.
I am also being tested for celiac disease tomorrow and I am anxious to find out what the result will be.

[Former_Member]

I have fibromyalgia and severe Rheumatoid Arthritis. I think the main thing is to learn to pace yourself, walk, and have a friend that is understanding. The most upsetting thing for me is that I look normal and people have a real tendency to be mean and jump to conclusions. I stay home most of the time. Etsy has become my source of fun, and something to look forward to each day.

[Former_Member]

My finance thinks that she might have it. She definitely has a weird undiagnosed auto-immune disease. She was diagnosed with collagen vascular disease also known as collective collagen disease. My mother in law has celiac disease.

Things of that nature are very hard to understand from an outsider perspective. My fiance will sometimes get aches and pains all through her body - she says it feels like her bones are hurting. I really don't know or understand it too much. I just rub and massage where ever she orders me to :)

It is rough - you should check out alternative (eastern) treatments for it. I know that when my fiance was getting her yoga certificate her symptoms subsided a lot. It was probably do to the stretching and meditation.

From what I've heard things a big trigger is stress - try some B-Complex vitamins. If you can, get your hands on the liquid form, it's better than taking it in pill form.

[Former_Member]

If, by chance, you get diagnosed with Celiac don't stress yourself out. You will just have to do a complete overhaul of your diet. Do get scared though, even if gluten seems to be in every product under the sun there are fantastic alternatives that are tasty! I would just stay away from gluten free pasta - shit is a pain in the ass to cook. But I do love the gluten free crackers and cookies..even better than reg. crackers and cookies.

[sydemcgus]

Yes, I've had it for over 20 years and it completely changed my life. I was a very active person and it took me a long time to accept my limitations, but once I did, I found I was a little better at coping. Just take one day at a time, and do the best you can. I did find Tai Chi, acupuncture, and a diet with limited flour based and sugary foods a bit helpful. I just have a small shop here, and don't sell much, but I enjoy the experience and the people. You never know, maybe one day they will find a treatment that will give us our lives back! Hang in there and just do what you can

[Former_Member]

Thans for the stories and encouraging words.
I am having a hard time because I have always been active and this is frustrating to me. I wish doctors could just fix it but clearly this is something I will have to learn to accept. That might be what is so hard for me.

[Former_Member]

It's a complete bummer. Trust me, I can understand. I was an athlete with severe asthma. sucks.

[Former_Member]

I feel like my family doesn't understand that when I feel I need to rest, I probably should. They push me constantly and hold me to unrealistic expectations.

[PoetryUnspoken]

My heart goes out to you. While I don't think I have fibromyalgia, I do have another condition that just can't get diagnosed for, but caused me much fatigue for many months earlier this year. Until recently that I started taking conventional patch-up medication as I call it - just to keep my problem under control. I'm only 31, so people around me always say "you're too young to feel that"...
they see me ok with their eyes... It's always hard to understand what another person is going through unless you've experienced something similar. It takes empathy and compassion.
I started learning about herbal remedies and use them often, as much as possible. Athough for some things I can't get the herbs I need because they're not available here in the US. But one that is readily available for example, is bay, which one of my books lists as a renowned medicinal healing agent for rheumatism.
*Hugs*

[Former_Member]

It will be difficult for awhile, but eventually they will understand. I had a total knee replacement and my family thought I was giving up, but come to find out after awhile they became very understanding. When your tired rest, eventually they will figure it out. I was very active also, all the bad news was the worst, but it even got worse because my daughter out of four daughters ended up with severe RA and fybro also. Do what you can when you can. You have people from etsy to talk to when your down.

[foreverandrea]

(( Hugs ))

I don't have what you have, but I can relate. I have a disease that makes me exhausted (just one of the symptoms). On the outside I look "normal" and so people don't realize what I am going through on a daily basis.

I wish you the best. Remember, you can only do what you can do. Take care of yourself. (wish I could take my own advice LOL)

[MerceryMerceryMe]

The hardest thing to get used to is that this is who you are now. Like, some days, I just feel like, "this can't be happening to me." I remember what I used to be able to do, and I can't even come close to it now.
However, I refuse to accept that I will be like this forever. I truly believe mind over matter is a very powerful thing. It's been proven to work. The mind is an amazing thing. As is the body....an extremely self righting machine.
This started when I was about 24, and I'm 30 now. I'm sick of letting it control me. I think my age is a big part of why I can't let it control me. I feel way too young to be feeling this way. When I see my 65 year old Mother moving around, being more active than me.....well, I just can't accept that.
The pain is soo much, but I find just pushing myself through the pain with Yoga and deep breathing have worked wonders. If even just for a day, or even a couple hours. I've found visualization works well too. I meditate, think of myself being "normal" and doing all the things I used to do, and it works! It's not always lasting, but each moment of relief is cherished for what it is.....a moment of feeling in control. I've only started these things recently, and I'm not into a routine yet, and I still have to force myself to just do it. Some days the pain is just so much that I don't care, though. I just want to lay down and die.
It was hard for my family to accept, and it still is sometimes. I've learned that it's because they hate seeing me in pain, and they just don't know how to handle it. My parents both have chronic pain as well, so I know they understand that part of it, but it's still hard for them to accept that it's happening to me. Perhaps that's part of the trouble with your family, Tarren.
Edited to Add: Bach Flower Remedies are wonderful. Give 'em a try.
Also, Valerian Root, and Scullcap are good herbs too.

[Zehland]

Funny you posted this. I have been reading a book about Celiac Disease (which I have) called "Cereal Killers" by Scott Adams, the founder of Celiac.com. There are articles in the book written by different authors that link gluten sensitivity to various ailments.

One of the articles is written by a man who struggles with fibromyalgia. After much study of the subject, his theory is that harmful chemicals from our environment accumulate in the body since the liver becomes compromised by gluten intolerance and these substances are the cause of fibromyalgia pain.

He says stopping exposure to the harmful chemicals is the first thing needed along with a gluten free diet. Also the toxins need to be flushed from the body since the liver is not able to get rid of them fast enough. He writes about his experience with using Olestra, found in fat free potato chips to flush out toxins.

He took 1 ounce of Pringles fat free chips twice per day and his symptoms improved over the course of a few weeks. He also gives case studies of other people who did this to remove PCBs from their systems. He also gives other advice such as how exercise is helpful. It might be worth checking out the book. I'm finding it fascinating how many people are affected by gluten sensitivity.

[Former_Member]

There's a team here on Etsy for people with chronic illness & chronic pain: http://www.etsy.com/teams/10632/chronic-creatives Lots of folks with Fibro there.

Lots of invisible disabilities here. Do y'all know about butyoudontlooksick.com? (aka BYDLS)

[Former_Member]

Thanks again, guys. The stories let me know I am not alone (far from) and that a fulfilling life can be led even with this stupid issue in my way.
Thanks for the links, maco!

[Former_Member]

Tarren, be careful with the cymbalta - I became very depressed when I was taking it.

[Former_Member]

Well, I got hit with a double-whammy....33+ years ago. I have both Fibromyalgia AND Lupus. I was dx'ed in my senior year of high school. Accpetance takes TIME, Tarren. It sounds like you are still mourning your formal self...which is completely understandable. It's important to try & find 'balance' in your life (like so many have already stated here). I also take yoga classes (my favorite is called "Restorative Yoga", if you can find it). It's sometimes really difficult for me because I've also had (several) hip replacements on both sides...so getting into 'poses' is not always easy for me...that's why I like 'Restorative' so much. I think any form of exercise/stretching/breathing is going to help you to feel better and *RELAX*. And @Tarren...the fact that you go to college, you have two little boys AND you've got this Etsy shop (which we know takes up a TON of time)...no WONDER you're stressed & having trouble just dealing in general. ANYONE would be completely wiped out...let alone have this invisible condition which most people don't understand...even the doctors don't completely understand it. All I can say is: do what you can when you can. I find that pushing myself can be a good thing, but it can also send me into a flare that can be very hard to come back from!! You need to find your own personal balance because everyone's is difference. Your OWN balance (I'm sure you see) differs from one day to another. I'm sorry that your family (your OWN MOTHER??) doesn't understand what you're going through. She of all people should be there for you trying to help you in any way she can. Not to be judgmental (sorry) ... who knows what her own issues are ... I'm just sayin'. Your Mom should really try to understand this better. Anyone close to you "should" but unfortunately, others don't always get it. I'm so fortunate to have family that is SOOO supportive & helpful...they've seen me at my worst & would never ever question what I said I was feeling.

OK...sorry this became a mini-novel. I'm here for you, THAT's all I wanna add. If you need to chat or run something by me...I'm here. It's too painful (no pun intended) to go through this alone...so please don't hesitate to holler if you need me!!

[CloesCloset]

I was diagnosed with fibro in 1989... after years of doctors telling me it was all in my head! also CFS.... there's also a great team with so much support at: http://www.etsy.com/teams/5732/createability-team

[Former_Member]

Deborah, unfortunately it is the only thing works for me as of right now so I am kind of stuck with no choice but to take it (without it I getinto so much pain I don't want to get up) thanks for the warning I know cymbalta side effects can be horrible.

Wow, thanks for all of the response, I am surprised by how many people are affected by this disorder and how many understand what I am going through. I agree my mom and family have their own problems which is why they are so frustrated dealing with mine, I think. I totally get what you mean about my own balance and how it differs from day to day. Some days I can get outside and walk and run, some days I want to lie down all day resting. And I need to. It's pretty lame but I guess we all have limitations and I need t learn mine. At my age it's hard to accept. And it is hard on my children, I get snappy and irritable when I am in pain for long peroids of time. They are the ones I really worry about.

[Former_Member]

Tarren...

Since I was dx'ed at age 17...(and my son was born when I was 25)...that was all he knew. He KNEW when Mommy was resting, Mommy didn't feel well!! It was a 'given'. I don't recommend trying to hide it from them...just do what you need to in order to take care of yourself. If your kids are anything like mine...they will become loving, compassionate adults (as mine have). If that is the outcome...that (in my opinion) is a GOOD thing! My wish for you is that you make peace with this...and accept the ebbs & flows that come with any chronic condition.
XXOO, Judy:)