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just diagonoised with Fibromyalgia
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denise10011963 posted:
I was recently diaganoised with fibro, trying to get as much info so I know how to change my way of living so life can be more comfortable. I work alot and so I do need energy which I don't have much of. Have good and bad days, I'm on my feet and walk alot all day so, really don't know what to expect. My feet and legs hurt really bad most of the time. Is this a part of it or just something else.I will be reading all others messages and thanks for all the input anyones has to offer.
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BetteK responded:
Denise, don't be discouraged. FM is not exactly fun, but it is not a death sentence, either. You will have plenty of good days. Enjoy them. Establish a good working relationship with the doc who diagnosed you and with the staff who will act as gatekeepers for you. Keep a stock of emergency easy meals on hand. Take your meds as directed unless you have some adverse reaction. If you do, get on the phone to your doc's office asap. Ask for the nurse by name. You will get help immediately. You may get a call back from the doc. Be aware that the drugs used for FM are powerful antidepressants and pain meds. They can also have powerful side effects.

If you are working, talk with your supervisor about your FM. There may be ways to adapt your duties and make them less energy consuming. This talk may help your credibility if a future flare makes you call in sick. If the time should come--as it does for some of us--that you can no longer work, you will have established your willingness to work around your condition as much as possible.

In the meantime, enjoy your walks. Find other physical activities you enjoy, too. Exercise, as tolerated, is a big help in maintaining your whole body in health. It is one of the things that can make your flares less difficult--even though you probably won't be able to exercise when you are in active flare mode.

Maintain your true friendships and any family relationships. Just as you are more than ready to step in and help in times of need, your loved ones will be glad to know what they can do for you. Stopping for groceries is a major favor that you will be unbelieveably grateful for if your emergency supplies run out before your flare does.

Above all, remember that your life will be manageable. It will just take some planning and a positive attitude.

All the best, Bette K
 
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Rachg810 responded:
Hi Denise. I was diagnosed a year ago and i am still learning how to cope with it. I live in the midwest and winter is awful for flares for me. I do say since i have been diagnosed it feels to get worse and worse for me. Constant fatigue, weakness, dizzy at times, worsens my IBS and periods. But there is a lot that can help. But i'm not having to much luck. I react bad to a lot of meds. I have gained weight because of lack of exersize which is hard when you don't have energy or it hurts. What i am working on is a plan...you will need a good daily routine. Light exersize like swimming, walking, yoga or streching. As i have been told and i'm working on is pace yourself. If you don't you can end up in a flare. ALL NATURAL food is best! Lots of fresh fruit and veggies, lean protein and good vitamins. Like magnesium a b12 complex, omgea3's and vitamin D. Have your D checked it could be low. I am and a lot of people who have fibro do. Good sleep is very important! Also if you get sick or have other health issues you can flare up worse:( When i seem to get sick it last a lot longer for me and also seems to feel like death...but you will be ok and get through it! Tell others what your going through...teach them and explain. A lot of people don't get it and won't understand. So its important to do so! And ask questions we you need and vent when you have too. Stress can make it a whole lot worse! As it has gotten worse for me i have developed bad anxiety. I feel like i need to go go go and it makes me mad when i can't! I overdue it. Then i pay for it. So good you time and relaxation time is a MUST! Good luck!
 
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An_250174 replied to Rachg810's response:
thanks for all the info, I realize everybody is different but does does the fm get worse over time or is it just a coping relationship, I feel as if I have the flu ALOT of days, the doctor has me on savella 150 mg and trad. at nite to sleep but still not sleeping well. just giving the meds time to work thanks Denise
 
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rudyandirmouse responded:
Hello Denise10011963 and welcome to the FMily. You have come to a very special site. Everyone here is caring, supportive and understanding because we all have the fibro DX and some of us have had it for many years.

I know getting the fibro DX can seem life changing, but knowing as much as you can about the illness ( goggle and google some more ) and how it is effecting you is the best way to adjust to it.

Google everything fibromyalgia and Vit D3. Find out what treatments you think may work for you but keep in mind that what works for others with fibro may not work for you. This is not a one size fits all illness. Not everything you hear or read about may not work well for you. But there are many many things out there that will work well and you will be the one who finds it. Some here, like myself get our back adjusted ( on days when we can take the pain of being touched. ) Others like water arobics. Some find yoga and Ti Chi works. some use heating pads others Voltarin cream, etc. Lots of things now out there to help ease the pain and discomfort.

I got the the fibro DX over 30 years ago while in college. I thought my life was over. I wasted 6 mounths staying on the living room couch feeling sorry for myself. Finally my college friends got me up, back into classes and moving again. I realized that fibro doesn't stop life only if you let it. I don't let it anymore.

I found that if I take control of my day fibro can't! I don't let it keep me down no matter what. I live my life my way and 30 plus years later I have 3 children, 6 grandchilren and still married to the same wonderful guy. My life, MY WAY.

I encourage you to take control of your day and take it away from fibro. "IT" wants to keep you feeling bad, in bed and having no life at all. Take you day away from "IT" and do it your way.. pacing and pacing your day your way.

Gentle hugs, Linda R
 
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denise10011963 replied to rudyandirmouse's response:
Thanks Linda for your post, I'm leaning alot with still alot to learn. I always thought FM was for old people. has anyone used HCG for FM if so how and where do you get it? Guess it is something I need to take up with the dr.
Thanks again


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