dont even know what to say....

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Regular Member

Date Joined May 2009
Total Posts : 104
   Posted 12/18/2009 6:24 PM (GMT -7)   
I saw the rhumatologist today, and was diagnosed with fibromyalgia. After a whole year of pain and searching, I have finally got an answer....i guess i was expecting to have a huge weight lifted off my shoulders.....not so, Im 28 years old, and will be in pain the rest of my life.... He started me on a low dose of lyrica, given my poor history with medication reactions, he said in 2 weeks i can up the dose, after a month he would consider adding something for the fog business He said I will probably always have some degree of pain, but he would try to control it as best he can. What kind of alternatives to medication can i do to help with the pain?? Can i trade this chronic condition for another, less painful one?? Yuck, i really just want to feel good :(
God will Give me nothing i cannot handle--i just wish he didn't trust me so much

Elite Member

Date Joined Jan 2005
Total Posts : 24909
   Posted 12/18/2009 6:57 PM (GMT -7)   
I am sorry that u 2 hv this dd it is very painful as u know i am also on the fibro 101 it may have some insight for you i know it did me keep posting n getting support...lyn
                                Co Mod for Crohns, Anxiety/Panic, Alzheimers
   Crohns..Pyoderma gangrenosum,..Anxiety / panic..Fibromyalgia,,Neuropathy...Deaf...Seizures
                        I DONT COMPLAIN...OTHERS ARE WORSE OFF THAN I AM                                   
                             No BETTER GIFT than FRIENDS N FAMILY                                               
                            Happy Holidays from my home to yours

Veteran Member

Date Joined Jul 2009
Total Posts : 4796
   Posted 12/18/2009 7:09 PM (GMT -7)   
Hi nursejenn, I am sorry that you are diagnosed with Fibro. It seems it takes so many of
us a long time to get a dx. I think it is natural to go through a mourning period after you
get a fibro dx. I was angry and grieved the loss of my good health but in time I accepted
the fact that I had a new "normal" and started trying to do what I could to help myself.
Finding this forum has been a blessing. Excercise is so good at helping reduce stress gives you more energy and helps you feel less achy. Heat is a fibromites friend, hot baths always
help,heating pads and bed buddies.

I think it is good that the doc is starting you out with a low dose. We all tolerate meds so
differantly. I was initially put on Cymbalta but could not tolerate it. Now I'm taking Savella
with no bad side effects. I also take Flexeril and use it when I am flaring. There are some
members,myself included that were found to be Vitamin D deficient and that can cause
pain. I'm sure others will be on to offer some suggestions.

If you haven't checked out Fibro 101, be sure to do so. There is so much helpful info for
the fibromite. You will learn what works for you through trial and error and the people
here are caring and helpful. Good luck to you and day at a time.

Hugs, Robin
MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 

getting by
Forum Moderator

Date Joined Sep 2007
Total Posts : 41820
   Posted 12/18/2009 7:23 PM (GMT -7)   
Hi Nursejenn,
When you read the fibro101 thread be sure to check out about the malic acid/magnesium supplements.  I started using them and they really helped me a lot.  I am working now after not working for seven years, it is only part time, but I am doing it.  So that is a huge improvement for me. 
Living with fibro isn't easy, but we all have eachother here to help us along and we don't feel so alone, I am sure that you will see that as you read other people's posts.  Try to keep moving, it is always easier said than done, but if you don't, you will have more pain.  Gentle stretching is wonderful and as was stated above, heat is our friend.  Most of us anyway.  I know that there are some that react differently, but heat really helps me.  I have what is called a bed buddy for when I get bad.  It is a long fabric tube filled with rice (I think) and you heat it in the microwave, afterwards you put it around your neck, or anywhere that hurts.  And boy do you feel better.  It is a moist heat which is wonderful. 
You can get oils and ointments, emu oil is suppose to be really good, I use peppermint oil sometimes and that really helps.  Massage is helpful as is accupuncture.  There are many things that you can do to avoid medications if that is the way that you want to go.  I am sure that you will get lots of suggestions.
I am glad that you have joined us.  And I am sure you will find that this site has a wealth of information.  And remember, you are never alone when you come here.  We all understand what you are going through.
Hugs, Karen
  Moderator-Depression and fibromyalgia
fibromyalgia, Chronic fatigue, depression,allergies

New Member

Date Joined Feb 2009
Total Posts : 17
   Posted 12/18/2009 8:08 PM (GMT -7)   
I know how you feel. I'm 24 and have had fibro since I was 18. I've excepted it for the most part, but I still go through periods where I look and look for some other disease that would explain everything, because so many other diseases have cures, or at least better treatments. It sucks being so young and feeling like you can;t do the normal things people our age do. I no longer am able to go out with friends and stay out late at the bars, or really do anything that requires an advance commitment. I don't know how I'm going to feel a few hours from now, let alone a few days or weeks from now. I'm having moderate success with the medicines I'm on. I take celexa, flexeril, mirapex, xanax, adderall, tramadol, and vicodin. It's alot, and I don't need them all all the time. As far as alternatives to medicine, massages often help me quite a bit. I know some people can't tolerate them, but I finally found a pretty good therapist that understands what hurts and what doesn't for me. Also, when I was pregnant and couldn't take any medication, wet heating pads helped when things like my back or my neck or my legs hurt. As did hot baths. I hope you find something that works for you. Fibro is different for everybody.

Forum Moderator

Date Joined Apr 2005
Total Posts : 17497
   Posted 12/18/2009 9:02 PM (GMT -7)   
Jenn, I'm sorry that you have fibromyalgia but I think we can help you.  You are young and have a lot of living to do and you CAN do it with fibro.  I was diagnosed right before my 40th birthday.  That was young enough for me.  But, even so and even with the extra years added on, I have had a good life since fibro.  It has not stopped me from doing what I really want to do.  I just work around it to do what I want.  I have traveled overseas, been snorkling in the Caribbean, stood on a glacier in an ice field, and parasailed over Jamaica....with fibro.  I just got done spending 9 hours at DisneyWorld and even going down Splash Mountain...with fibro.  So, your life is just starting and you have a lot to look forward to.
I use ibuprofen with food, extra strength Tylenol, malic acid/magnesium supplements and vitamin D3 for pain and fatigue.  There are links in Fibro 101 all about the malic acid and vitamin D.  Many with fibro are deficient in these and they can cause pain and fatigue.  These have helped me. 
Be sure to keep moving.  If you sit or lay too much, you will be stiff as a board.  There are some gentle stretching exercises in Fibro 101 that really do help.  Also, find a gentle exercise that  you like to do.  For me it's walking and swimming.  Both of these are great for fibro.
Karen mentioned the Bed Buddy.  You can make one if you don't want to buy one.  Take a tube sock, fill it 2/3's full of long grained raw rice, and tie a knot at the end.  Pop it in the microwave and it gives off moist heat due to the moisture in the rice.
Don't hesitate to ask questions.  We are here to help you.  Keep a positive attitude and look forward to each new day with anticipation because you will have many wonderful days ahead of you.  I hope you feel better soon.
Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Veteran Member

Date Joined Jun 2008
Total Posts : 846
   Posted 12/19/2009 8:07 AM (GMT -7)   
I don't have much to add but can only emphasize what has been written above. Fibro is not a death sentence. You can still live a full life, and you will have good days in between some not so good. The trick is to stay positive that each new day will be a good one. You can't project yourself so far into the future, as you don't know how you will feel. Pain is not fair, but you can come here and vent to others who get what you are feeling. This helps me deal on the not so good days. I have also started the malic acid/ magnesium again, as I was feeling the aches of fall. I am again feeling better being on it, I'm not as achy or fatigued. I have also just being officially diagnosed, and I do feel validated.

Yesterday is history
Tomorrow a mystery
Today is a gift,
That's why they call it the present.

I first saw this quote here, and I often say it to myself to help me along.
So welcome! And I hope you start to feel better soon, now that you know what it is you are fighting.
fibromyalgia and possible trigeminal neuralgia
50 mgs amitriptyline daily, T3s for facial pain (really not appropriate med) and now tramacet

Regular Member

Date Joined May 2009
Total Posts : 104
   Posted 12/19/2009 8:18 AM (GMT -7)   
Hey, thanks for the relpy's, im def. going to try the mag/malic acid supp. i am low on vit d. I have some corn bags which i have been using. Does anyone have chest pain. I know its not cardiac related.
God will Give me nothing i cannot handle--i just wish he didn't trust me so much

Regular Member

Date Joined Apr 2009
Total Posts : 44
   Posted 12/19/2009 8:53 AM (GMT -7)   
Chest pain is common with Fibro, I have it constantly. It is usually diagnosed as costocondritis. Before I was diagnosed with fibro, I went to the E.R. twice thinking I was having a posible heart attack.
If you know you are low on Vit D, I would encourage you to definitely take the supplements. My main Dr. for treating the fibro is a Pain Management specialist who also has a Wellness (Holistic) Clinic. Even though my Vit D levels always showed at the bottom of the normal range, he insists I take 5,000 to 6,000 I.U. daily to help with the pain and general well being.
Take the lead in finding what works for you. Keep writing down what you want to discuss with your doctors and take the list to your apointments. My Dr's are used to this now, and I read them the list, they make notes, and start the discussions.
You have found a great comunity here, the discussions and humor (yes being able to laugh at your condition is a great therapy in itself) are better than anywhere I have found. Read the back posts as you have time.
All is not lost with fibro. Smile, we know there is not a cure yet, but it is also not fatal. Managing the pain and the fatigue can become a challenge to welcome.
God has not given us a spirit of fear, but of power and love and of a sound mind.
DX: Fibromyalgia, Multiple Herniated/Desicated Discs, Multiple Neuropathies, Carpal Tunnel Syndrome, Nystagmus, IBS, Migrains, Atypical Tremor, Low D, Low T, High CSF Protien, Depression, Gluten Intolerance.
RX: Cymbalta 60mg, Lyrica 450mg, Savella 100mg, Zanaflex 4-8mg, Trazodone 50mg, Testostorone 75mg, Epidural Steriod Injections. OTC: D3 5-6000IU, Magnesium/Malic Acid, Calcium, B-12, GNC MegaMen Energy Vitapack.

Forum Moderator

Date Joined Apr 2005
Total Posts : 17497
   Posted 12/19/2009 12:56 PM (GMT -7)   

Jenn, I have the chest pain.  It's called costochondritis.  There is a link all about it in Fibro 101.  You should talk to your doctor, though, to make sure it isn't a heart problem.  I did that, went through four tests, and was given a clean bill of health when it came to my heart.  Now I KNOW what it is.  My doctor has me taking ibuprofen with food to help with that.


Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

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