Just diagnosed with Fibromyalgia. Could use some support.

[Paige777]

I’m 27 and received a diagnosis of Fibromyalgia this past Friday. I’ve had various symptoms ever since I was younger, and always suspected they were somehow all connected. Well, now I’ve finally found out how they’re connected. I’m a textbook case for Fibro.

I’ve been working with a rheumatologist for years, and he’s taken the time to really listen to me and check me out thoroughly, and this diagnosis isn’t one that has been rushed into. He also thinks I have some sort of arthritis (haven’t determined which sort yet) in my back, hands, and knees.

This has already ended my career as a musician (I was a performance major in college on the flute) and now it’s creeping into my riding life. I’m starting on Cymbalta, and am hoping that might help with some of the symptoms.

Has anyone here dealt with Fibro? How did you do it? Any tips for the newly diagnosed? Right now I’m half heartbroken, half too tired with all of this to care. I’ve hurt for years and years, and while it’s good to finally have a diagnosis, I don’t feel strong enough for this battle.

[Zu_Zu]

Jingles & AO you get some relief through this diagnois / treatment plan ~

Jingles & AO that with this “diagnosis” comes a treatment plan that will offer you some relief ~ ((hugs))

[RMJacobs]

I don’t have any suggestions to offer on FM, but I can certainly relate to having a medical condition shatter your dreams. What I’ve learned from over 15 years of battling rheumatoid arthritis is to fight like hell to retain as much of my life as I can. I know it’s hard when you are exhausted, but whatever you can do to keep your dreams alive (even in a modified form) will help you physically and psychologically.

Best of luck. Autoimmune stuff is definitely the pits.

Rebecca

[Parrotnutz]

Hi,
I have been dealing with Fibro for more years than I can count. If you would like some help to walk you though " stuff" I will gladly help, tell you what may work, what may not, etc. way too long to type so either PM me your phone number or I would be glad to give you mine.
Cymbalta worked for me for quite some time…won’t take it away but give it time to work and it may dial down the pain. But really talking may help you…benefit from my experiences.

[Dressage_Fancy]

I’ve been on Cymbalta for the past dozen years. It does help me. I still have pain but it is more of a background nuisance now. Eat healthy, rest as needed (try 20-30 min naps), stay warm, and pay attention to your doctor. When really hurting massage helps (used to be the only thing that helped until Cymbalta). Over dress for the cold–worst thing for FM is to let yourself get chilled. (I’m always at my best in July/August when the weather is at it’s hottest.) Over the years my FM has stablized and I am functioning better now then I have in years. Arthritis kindof goes along with FM and I also take arthritis strength Acetaminophen daily as per my doctor’ orders.

I’m a good bit older than you but had symptoms as far back as my senior year in high school. To finally have a reason for my pain actually helped me to live with the pain and do all the things that I set out to do. FM doesn’t have to rule you—you can reach your goals!

[grayarabpony]

If Cymbalta doesn’t help try Tramadol. Usually they are not prescribed at the same time unless you’re on a low dose of Cymbalta due to the possibility of serotonin syndrome.

[downen]

I’m so sorry for your diagnosis. I’m an autoimmune victim as well, diagnosed with both MS and Addison’s disease (Adrenal failure). My advice would be that in addition to working with your rheumetologist, find a GOOD endocrinologist to monitor your thyroid/adrenals/pituitary. Endocrine issues occur very often with other autoimmune diseases, and are often overlooked; the symptoms can be mistaken for those of your other diagnosis. I’ve had many debilitating symptoms that were blamed on the MS and Addison’s but were resolved once I received appropriate Thyroid treatment.

Best wishes to you.

[romewhip]

I have fibro and some other issues- I take Cymbalta daily and it’s made a huge difference in my pain level. It takes a little while to really take effect. I have also become very aware what a difference quality sleep makes- get plenty of it, and get good sleep for a solid period of time. Everyone is different, but make sleeping a very regulated activity. No tv in bedroom, no computer, no extra stuff, use white noise if you’re a light sleeper, do whatever you need to do.

Eat healthy-- and try to get rid of the wheat in your diet. There may be other foods you find cause more inflammation, try and eliminate them. Try and get rid of processed foods too.

Exercise helps- even if you don’t feel like riding them just give your horse a good groom. I find horse therapy to be a huge help, they make me feel better just being with them.

Best wishes and jingles that you can find a way to live with fibro so that it doesn’t affect your life too much.

[Paige777]

Thank you all for your thoughts and advice. Parrotnutz, a talk at some point would be wonderful - I will PM you.

I’m slowly working myself through some lovely side effects of the Cymbalta, and am hoping that I’ll be feeling better soon. Trying to stay active, though partly I just want to lie on the couch.

[Henjen]

I was diagnosed with FM in 2009 and cymbalta has worked very well for me. Did make me really nauseous for about the first two weeks. I also found that cyclobenziprine (brand name Flexeril) was a very important key to really making me feel almost “normal”. It’s a muscle relaxant. So ask you doctor about that.

My main advice is to be kind to yourself and try not to beat yourself up about what you can’t do. You didn’t ask for this. Try to rest without guilt as much as you can.

Feel free to PM me as well. Take care.

[beaujolais]

“Did make me really nauseous for about the first two weeks.”

I always taper up to dose and taper down, over a good few weeks, when starting or stopping something. Do the Doctors tell you that - no. I don’t care either if they haven’t told me to do it that way. It works, eliminates lots of problems with meds.

(I worked in medicine for a very long time, just fyi.)

[AMWookey]

I’m also 27 and was diagnosed at 13 or 14 with fibro. I let it rule my life until I was 20. I couldn’t ride my horses, went through school on disability, was prescribed a cocktail of drugs, it was terrible and no one understood.

So at 20 I said screw it, this isn’t what I want from my life. I worked hard and I got accepted into the military. No I didn’t disclose the illness. At first I just cut out processed foods and worked on getting fit. The first year was terrible. Extreme pain. I even shattered my leg and dislocated my knee on basic training because I wasn’t fit enough, I got too tired, and I got sloppy. So I worked harder with my team of a chiropractor, personal trainer and old family doctor. The next year I was ready and I didn’t look back.

I listened to my body, and cut out most hard alcohols, went completely clean for a couple years, now I allow myself alcohol but only ever a drink or a glass of wine or two. I cut out all processed crap and eat fast food maybe once a year when I’m desperate. I cook everything from scratch. We have no boxed meals in our house. I was vegetarian (but still ate fish) for 3 years until an 8 month tour in Afghanistan where I ate tuna for 5 months straight (yuck!) but still don’t eat it in excess and try to buy straight from the farmer (not necessarily ‘organic’ - just farmer raised).

I also work out. Sure I get run down and overwhelmed and I miss some time. But in general I work out 1-2 times daily 5-6 days a week. I do a mix of yoga, zumba (don’t knock it - it’s fun, keeps your heart going and makes you laugh at yourself), body weight training, running, and have started power lifting which I’m loving. When I lead my troops in PT, they are sweating and I can’t believe I was the same girl that could barely get out of bed some days.

I can put a 40lb pack on my back, plus grab a rifle, a helmet, a flak vest and other gear and go for 13-20km tomorrow if I wanted to. It would suck and I would hurt for days but I could do it. I could barely ride my horse when I was 16 without agony for days.

A lot of sufferers choose to believe that maybe I was misdiagnosed or something. The other day I went into see the doctor about an eye problem and she asked if I had ever been diagnosed with an auto-immune disorder. I just laughed. I truly believe that I suffered from fibro. There are days after a long stressful period of work or field deployment where I have ate processed crap the military feeds you and I feel it in every joint. But don’t let anyone ever tell you this disease will ruin your life and your dreams. Never. Because I’m living mine, and in three years I hope to go back to school to become a physiotherapist so I can help others like me reach their goals.

Oh and I currently don’t take any drugs. Not for everyone, but a good clean eating diet (don’t listen to fad diets - just eat clean and no processed stuff!), lots of exercise, and you will be back on your horse.

[Preposterous_Ponies]

I have fibro, I’m 23 and fairly recently diagnosed. Would be happy to chat with you as well on facebook or whatever. I don’t know anybody else with fibro, so it would be great for me to have somebody to talk to as well.

I’ve been avoiding cymbalta and lyrica for as long as possible, but it looks like I will be getting on the cymbalta train soon. Too many bad days lately, missing far too much work.

Horses are really the only reason I bother going to work, leaving the house, getting up in the morning. They are my motivation, and I honestly could not do it without them. Riding sometimes hurts, and many days I am just too tired, but that’s okay. The days I do get to see my two mares are wonderful, and the barn also provides me with a social life that I otherwise would not have. My advice to you is KEEP RIDING, even if it’s just a lazy trail ride.

There are many different ways of dealing with Fibro - what works for some will not work for others. AMWookey’s tatics are definitely not something I would consider or suggest, but I’m glad they work for her.

[AMWookey]

Preposterous Ponies - Just wondering why you think what I’ve done is not for anyone? I’m by no means suggesting that you start working out 2 times a day and do what I’m able to do now. It took me 7 years of hard work and training my body to get to this point. I was just trying to show what can be done with hard work and determination with this disease.

My recommendations for combating fibro is: clean eating, listening to your body, not taking in processed crap or tons of alcohol, and keeping active. So walking, riding, yoga, light things until working with a qualified professional, you can move forward and do more. I didn’t go the drug route because I can’t in my profession and because when they had me on tons of drugs when I was younger it wrecked my insides.

[Preposterous_Ponies]

[QUOTE=AMWookey;7477184]
Preposterous Ponies - Just wondering why you think what I’ve done is not for anyone? I’m by no means suggesting that you start working out 2 times a day and do what I’m able to do now. It took me 7 years of hard work and training my body to get to this point. I was just trying to show what can be done with hard work and determination with this disease.

My recommendations for combating fibro is: clean eating, listening to your body, not taking in processed crap or tons of alcohol, and keeping active. So walking, riding, yoga, light things until working with a qualified professional, you can move forward and do more. I didn’t go the drug route because I can’t in my profession and because when they had me on tons of drugs when I was younger it wrecked my insides.[/QUOTE]

I’m not saying it’s not for anyone, just that it isn’t for everyone. Certainly, it is not for me! I would absolutely die if I attempted what you did, but I think it is AWESOME that you were able to turn it around.

Me? I’m more of a take the pills and hide in my bed sort, which isn’t exactly a good route to take. :lol: I’m trying to be more active (read: trying to get my ass out of bed most day). However, even very light exercise leaves me pretty much unable to function. I can ride, but that is because it’s something I’ve always done, and because of the “I LOVE PONIES!!!” endorphins.

What you did is great! I guess, my point was more along the lines of “don’t feel bad because you can’t do X, or because Z isn’t working for you”. Different people respond differently to different treatments. One of the hardest parts of first being diagnosed, at least in my experience, is figuring out what works for YOU.

Sorry if that was unclear.

[AMWookey]

My whole thing is that hiding out in bed is the worse thing you can do. I know it feels better somedays, I did it for the first 6 or 7 years. But it will just hurt you more in the end.

Highly highly recommend low impact yoga, even once or twice a week.

Biggest thing though I found, was the diet. Eat clean! Make your own food! I’ve done a lot of help workshops and my old doctor even wrote a case study on my year of hell to get through it.

[grayarabpony]

Actually I find resting when I feel bad is the best thing I can do. And I’m not a fat lazy drinker who doesn’t work out.

[downen]

[QUOTE=grayarabpony;7489513]
Actually I find resting when I feel bad is the best thing I can do. And I’m not a fat lazy drinker who doesn’t work out.[/QUOTE]

I agree with that! Once I accepted my “new normal,” gave myself permission to rest when I needed to, I finally regained a more acceptable quality of life.

[AMWookey]

[QUOTE=grayarabpony;7489513]
Actually I find resting when I feel bad is the best thing I can do. And I’m not a fat lazy drinker who doesn’t work out.[/QUOTE]

Wow - so not what I was implying. I was merely giving a success story for Fibro. I wasn’t a fat lazy drinker that didn’t work out either - I was an active 14 year old that had my life ripped out from under me. I know how that felt, and no one ever gave me a success story of someone that full on beat it. So I was merely giving my suggestion of how to handle it. Which is what the OP asked for.

Trust me, there are times where I rest. There are times where I can’t work out between work and life too - those are the times I find myself needing more sleep. But I never accepted my ‘new normal’ until I made it what it is today.

Again - I’m just offering a different view. Obviously its not going to work for everyone, just like chemo doesn’t work for everyone, or anti-depressants don’t work for everyone. Your views and ways of approaching the issue is as valid as mine.

[red_mares]

It absolutely sounded like what you were implying. Whether you intended it or not, your tone was offensive. Just an FYI.

I ran across a comment on an article somewhere last week, where some jerk massage therapist came up with the whole “fibro really doesn’t exist & if you just get off your @ss it would be all good” thing. I actually found myself hoping he gets fibro or something similar, his post was that offensive. There are many others out there like him.

What you can do at 27 is great; talk to me in another 10 years. I got out of the service at that age because my body was too beat up to do another 10 years (among other reasons)

I have found one of the best things for me is a drink at night and 8 hours sleep a night.