Help.. New fibro diagnosis- How am I suppose to handle this?

I just recieved the diagnosis of fibromyagia. But the doctors have also told me I have some sort of Auto immune disorder, they are just not able to identify it as of yet. It seems they caught it in the very early stages of whatever it is.

I just want to cry.  I am in pain all the time.  The doctor's are constantly playing with my medications and they still can't get it right. I don't sleep well. I can barely move. and the bad days seem to outnumber the good days.

When the fibro isn't causing pain the migraines are.  I am in a no win situation.  How am I suppose to handle all of this and still be able to work and do the things I need to do?

Sofia

I recieved help at the closest Fibro & Fatigue Center to see if there is one near you look up www.fibroangfatigue.com   In the mean time eat a high protien diet rich in raw fruits and veggies.  Take hot showers to help the pain and ask your doctor for somthing to help you get sleep ( in REM sleep we make growth hormone that helps our body repair its self after we are grown ups )  Getting deep sleep that provide REM sleep is very important.avoid alchol, foods with a lot of preservitives or chemicals in it.  Take high quality vitimins that will help with healing. if you can't get to a cenyter then at least see a rhumatoligest as they will know how to treat you better.
Good Luck
Lyn

I'm so sorry you have joined our ranks. My best advise is to educate yourself on our horrid disease. There are lots of fibro support groups on line and hopefully you can find one near you. As for the pain heat often helps but the biggest problem with this disease is what works for me may not work for you, everyone is so different in what helps them. Yes, do see either a rheumatologist or pain clinic to get treatment, there are several new drugs that help, myself I take cymbalta and it helps alot. You ask how to continue work and daily life, well you will have to learn to take advantage of your good or at least better days. There will also be stretches where you may not be able to live a normal life. Some folks even have to retire and go on disability. You will need to accept that your life will never be the same and learn to adapt and change how you live. If you have any other questions feel free to PM me and I'll be happy to chat with you, it's a devastating diagnosis and you need to talk and share with friends and family so they will understand you aren't being lazy that you do have a disease. Keep in touch here and we will all help you with this new life.

I too am sorry that you have joined these ranks, but I want to encourage you that in time you'll find a way to have a modified quality of life.  I agree with the previous posters about seeing out a specialty clinic or a rheumatologist.  I have found considerable relief from the following things:  1) Lyrica, a prescription drug, some people can't tolerate it and I had to very, very slowly increase the dosage.  I was at the lowest dosage once a day for a couple of weeks before we could increase the dose and it took about 6 months to get me to a therapeutic dose. But, it was worth it, because I am now able to work again.  It helps my sleep and has greatly reduced the pain and fatigue.  2) an antidepressant, I take cymbalta now, but that is after trying multiple other medications.  It does more than treat depression, it has a direct impact on the Fibro.  3)  I've found yoga and other stretching exercises greatly reduced my pain and migraines.  4)  I use tennis balls to apply pressure to tender spots, it hurts, but if you can stand it, it will help release the muscles and reduce the pain (learned this at a pain clinic).  If you want more specifics, please let me know.  5)  Give yourself a lot of room to grieve and to just take care of yourself...this is extremely important, for as much as other people will judge us, because they don't understand, we tend to be our own most critical judge.  We expect ourselves to be able to do more, be more.  The more you do this, the worse your situation will get, so love yourself and forgive yourself for not going to that family event or important meeting when you just can't do it. 

These are some of what helped me, but like a previous poster stated, we are very individual and all you can do is try some suggestions and see if they work for you.  By the way, I have no idea why this is suddenly underliming my text, so please excuse it, as I don't know how to turn it off.

Please call on some of us, you do need support, we will not judge you and can listen and perhaps offer useful suggestions, but most important just be there for you.  Please feel free to "friend" me and to keep in touch.

First off, I would like to thank you call for posting. I realize I do need the support from others suffering this condition. My kids are empathetic to the pain I feel, they just don't seem to understand why I am in pain all the time.

I am on several medications to try to control it. I guess it's just not quite there at the levels I need to quiet the pain and allow me to more good days than bad. I am taking Lyrica twice a day, Baclofen three times a day. I take a medication for my migraines that also affects my blood pressure. Sometimes it gets very dangerously low. ( 89/42 is the lowest it has been). That is on top of taking my vitamins, calcium, magnesium oxide, and protein shakes.

My days seem to have three different types. I have my good days. Those are few and far between. My bad days which seem to be tolerable for the most part. Then there are the really bad days. These days are REALLY bad. The pain gets to be so bad I am curled up and have to walk with a care just to make it to the restroom. These are the days I am crying a lot.

And I am rambling on.....
I really appreciate you sharing your plight with me and what is working for you. I see my doctor quite frequently.
I have friended those that said I could and I hope to talk to you. I will be visiting this forum more frequently. Thanks again for the support.

Sofia

I completely understand.  I have migraines, fibro and PMDD (PMS from hell).  My children are 9 and 10 and I hate to see them worry about me, and try to take care of me.  I take neurontin and cymbatla, which seem to help the fibro immensely. I take lorazapam at bedtime and generally sleep through the night.  I go to a pain clinic and he's trying to help, but he has no concept of PMDD.  My bad days are the 10 days before my period and first 2-3 days. Then I'm great for about 7-10 days. My cycle has gotten very unpredictable too.  I have the same kind of days that you described, days I can function by taking perc 10's, excedrin, phenergan, and a sudafed, and days when that's not enough for the pain and I can't function at all, luckily I only have about 2 of those a month.  I also have about 3 days where I have really bad depression, where I get very despondant, but the cymbalta has helped with that too.

My husband lost his job over 2 years ago, I've been a stay at home mom for 11 years. And now my family doesn't understand why I don't go back to work.  So not only do I have the guilt from worry about my kids, my family (dad) is giving me more for not finding a job.  You can't explain paralyzing pain to someone that hasn't expereinced it.

By the way, I just turned 40 this year. So, I should have a FEW good years left  8-)

Melanie

I have a solution for your PMDD - get an IUD.  I had the same problem for years.  I was ready to have a full hysterectomy.  My doctor suggested the IUD.  It lasts for 5 years.  I'm 43 and I'm on my 2nd one.  I don't have periods.  You do at first for about 3 months, then 4 years of no periods, no PMS.  Get the one that has the hormones in it that slowly release.  Keeps your own hormones in check.

I feel for you.  I know what you're going through.  I promise, this is a solution.

I understand completely.  I was on Lyrica and Cymbalta.

Lyrica made me hungry and I gained weight.  It also made me fuzzy, I just wasn't on top of my mental game anymore.

Cymbalta helps - I take 60mg twice a day.    Trazadone helps me get the REM sleep I need to help overcome the insomnia / increased pain.

I do stretching exercises for 15 minutes first thing in the mornind, following by a warm/hot shower,  That really helps a lot.

Then at noon I walk with my cane for 15 minutes.  We will be working up to 20 minutes after next months doctor appointment.

Keep your diet as pure as you can.  Protein ( I do shakes) and veggies, fruits. Anything that your body has to work at to break down.

I use Vicodin 5/500 for the breakthrough pain.   Some days are worse and I take more, some days are better and I take none.   I rarely have a day when I feel great.

If you go the narcotic pain reliever way - remember to take a stool softener.  Colace is pretty good.

It takes time to come to terms with it.  Try not to fight it, meaning find ways to get more rest for your body and mind.

I know I can't do groceries after doing a 9 hours workday, so I stopped stressing about it.  DH does it or we do it on Saturday.

A Saturday movie and groceries is about the extent of activity I can tolerate.   Or shopping and a movie (although I admit, I sometimes fall asleep at the movie).

Find your comfort zone and be sure to put yourself first.   It's nice to want to do things for others, but with fibro you will find others must do more for you now.

Take care.

So sorry for you!  After 14 years and some recent advice, I think I may have this down.  Here is what the pharmacist printed for me:

The goal of using medication is to improve sleep and pain tolerance. Patients should receive drug treatments along with exercise, patient education, and behavioral therapies.

Duloxetine (Cymbalta), pregabalin (Lyrica), and milnacipran (Savella) are medications that are approved specifically for treating fibromyalgia.

However, many other drugs are also used to treat the condition, including:

• Anti-seizure drugs (I take Neurontin - the miracle drug - for pain and migraine prevention)
• Other antidepressants (I take Cymbalta)
• Muscle relaxants (He suggested Flexeril, but it knocks me out)
• Pain relievers (Aleve - when taken with Neurontin, it increases its absorption)
• Sleeping aids (Klonipin)

I also take Adderall for ADD which helps with Fibrofog.  There are some good books to read.  My favorites are The Fibromyalgia Advocate and Fibromyalgia for Dummies.  Here is the link to the pharmacist's info he gave me.

http://www.walgreens.com/marketing/library/contents.html?doc id=000427&doctype=1