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JoriGirl
New Member


Date Joined Nov 2008
Total Posts : 18
   Posted 11/25/2008 9:06 AM (GMT -7)   
Due to one of my many sleepless nights, I decided to surf the internet and stopped upon this side. My name is Jori, I am almost 21 (on Nov 30th actually) and I live with my husband in Waipahu, HI. I was first diagnosed at 17 with rheumatoid arthritis, and was treated for that for 2 years. At 19, I was told I never had rheumatoid arthritis and that I have fibromyalgia. My symptoms from there went downhill fast. It's hard for me to accept this disease. Up until 19 I was a professional ballet dancer and in the matter of less than two years that has just become a distant memory. I had big plans for my life and this horrible disease robbed me of them. I know it's hard for my husband to understand as well. We went and I was one person, and now today I have completely changed. We are a very young couple and I had a dr the other day tell me due to the pain I am constantly in, I probably should not have children. I guess I would like to know what meds you all are on. Right now I am taking ultram and seroquel. They work wonderful but Dr.'s hate giving it to me. (because I am so "young"). They want to feed me that naproxen and flexeril b.s. I have been on gabbapentin/ambien before and it has worked wonderfully. But once again, the dr's think by giving me the lowest dosage possible of flexeril I should be fine.

My pain is everywhere, and I don't have good or bad days. Just bad days. My body burns constantly. My hands swell, my fingers and toes ache, The muscles in my legs are in constant spasm (which tonic water has helped),and the worst is my back. down my spine, my shoulder blades, and hips. at least 10-15 times a day I get a sudden surge on pain in my back and I involuntary arch my back and scream out in pain.

Through this journey I have refused to take depression medications, although the Dr.'s have tried giving it to me. I just don't believe we all should be treated like we are making this up.

mentally, I have gotten myself to a place of acceptance, for right now.Right now I can handle it. It's just hard to accept I will feel like this until I die.

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40598
   Posted 11/25/2008 9:17 AM (GMT -7)   
Welcome to HealingWell Jori,

I understand completely how you feel, but there can and will be better days for you. It is hard though, especially when you are so young. So please don't dispair, you will feel better.

There is a lot of information on this site. If you get a chance, read fibro101. It is the second thread on the first page of fibromyalgia. This will at least let you know that you are not alone in this. There are a lot of ways to feel better without medication. They probably don't want to put you on any stronger drugs due to your age. People tend to build up a tolerance and eventually nothing will work. Some doctors don't believe in narcotics at all for fibro.

A lot of us have tried malic acid/magnesium combo and it has helped many. That is something to think about. Also vitamin D helps a lot.

So read as much as you can on here. Try different things to help. Moist heat is a life saver. I wish you all the best, and I hope that you continue to post. We will be here for you and help you as much as we can.

Best wishes for a wonderful day.

Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


springfling
Veteran Member


Date Joined Mar 2008
Total Posts : 519
   Posted 11/25/2008 9:59 AM (GMT -7)   

Welcome Jori,

I am so sorry for all the pain you are going thru. It sounds as if you have it pretty bad with no good days, but things can get better!!

I did not want to take anything for depression either, but found out quickly that I needed it. The pain of this dd and the changes it made in my life were really getting me down. At least now I am able to look at things with a better attitude.

Please don't accept that you will always feel like this! There are many things out there you can try. As Karen suggested, the Fibro 101 thread has some good suggestions. Also, I was wandering if you have seen a Rheumatologist? My Rheumy tried all kinds of meds until we found something that worked.

I hope you stay with us. There is something to be said about having others that are going through the same thing to talk to. This place has been my lifeline. Some here have it worse than others, but we all have the same thing and are here to help each other.

Please keep us updated and I'm sure others will be along with great advice.

Hugs!!  Margie


Never regret something that made you smile!

Fibromyalgia*Osteoarthritis*Sleep Apnea*Depression*Fatigue*Allergy/Sinus


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 11/25/2008 1:41 PM (GMT -7)   
Hi, Jori, and welcome!  I'm so glad you found us!  I see that you have been directed to the Fibro 101 thread.  There are links to good info in there all about fibro. 
 
The leg cramping could possibly be helped by getting more potassium or calcium in your body.  Bananas, avocadoes, and tea are high in potassium.  There are potassium supplements, too, but talk to your doctor first about taking them.
 
I was having cramping in my feet and my calves.  This went on for several years.  Then I was diagnosed with osteoporosis.  Because of that, I was put on more calcium supplements...1,200 mg a day.  I use Citracal because it is the easiest to be absorbed.  Anyway, once I started taking the calcium, the cramping has stopped!  I checked on line and saw that low calcium can cause muscle cramping!  If you like milk, get drinking it!  You just might feel better.
 
I also take the malic acid/magnesium supplements and they help with pain and fatigue.  They have helped me a lot.  There is a link all about them in the Fibro 101 thread.  Read it and see what you think!
 
I use ibuprofen (with food) and Tylenol for my pain.  Has your doctor suggested you try that first?  It has helped quite a few people and you aren't taking those "high powered" meds.
 
There are many on this forum that have had babies.  I'm not sure why your doctor told you that.  My children were already born when I developed fibro but many have had children after fibro and the kids are fine.  It's more challenging raising them but it can be done and it is being done! 
 
Read posts, the Fibro 101 thread, and ask questions.  We are here to help you.  I'm looking forward to hearing more from you soon!
 
Sherrine
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


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 11/25/2008 1:58 PM (GMT -7)   
Hi Jori,
 
I'm glad you found us too.  This is a very supportive forum of people with lots of knowledge.  I'm sorry you're in so much pain.  I agree, it is hard to think about living the rest of your life feeling like this.... I have trouble with that too.  My pain is also worst between my shoulder blades, down my spine and lower back, hips.  It's horrible.
 
I have found that a memory foam mattress, or mattress cover has helped a lot.  Conforms to the body and won't put pressure on those sore spots.
 
The only thing I use for pain is extra strength Tylenol!  I can't take any thing else (frustrations gallore).  So meditation, prayer, warm showers, and learning to cope is all I have. I've tried narcotics and they don't work.  I just get "wired" or incredibly drowsy, with no pain relief...
 
You live in Hawaii!!!  OH MY!!  I love it there.  Been to Honolulu once, back in 1994. Heaven on earth!  So beautiful.
 
Talk with you soon,
Ginny
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


JoriGirl
New Member


Date Joined Nov 2008
Total Posts : 18
   Posted 11/27/2008 8:27 PM (GMT -7)   
thanks guys!!! I was having a really hard night the other night, I had run out of meds and forgot to pick up my refill which happens often because FM makes me VERY forgetful. I actually take a whole slew of vitamins. I am school to be a nutritionist, so I started out 3 years ago taking pretty much every vitamin known to man, not just for FM but for preventative purposes. I just recently found out that I have 50% of the cartiledge gone in my left hip (due to my previous career as a ballet dancer), so at least I know where all that pain was coming from. Do you guys sometimes feel like FM is just a big garbage pale? I had hip pain for years but because I had the FM diagnosis no dr's took me seriously. They all said it was my FM. I just recently got an MRI and proved them wrong. BUT once again, there is nothing they can do. I just feel like I have been cursed with ailments no one can fix:( I got my Ultram on Weds and am feeling much much better. This medication does not make me drowsy, just helps me sleep and takes my pain completely away. Sherrine, I have tried over the counter meds, but because I have been on and off pain killers for about 5 years my body has built up a tolerance. Believe me, I would love to pop an ibprofen or naproxen and feel fine, but it does nothing. So thank god my body handles Ultram well. Happy thanksgiving everyone. Thanks for listening! I have seen a rheumy but my husband is in the military and there is only 1 rheumy at the military hospital and he's weird. He told me he likes to help him patients by listening, not by drugs. lol. I was all....ok bye. I actually take Xanax for anxiety disorder I have had since a very very young age. That helps with the days I just feel like giving up. I still refuse to be on anti depressants. For me, it's not the answer. Depression runs in my family and I have seen what is has done, so I suppose I have a huge fear of accepting I may need depression meds. I have kind of vowed to not be my mother.

Sera Smiles
Veteran Member


Date Joined Nov 2006
Total Posts : 671
   Posted 11/28/2008 1:13 AM (GMT -7)   

Jori, sweetheart- I am so glad that I visited this site before I went to bed. I guess you understand that many people here can relate to what you describe. You have gotten some good advice, and theres not much more I can add, but I did want to say a couple of things.

1] You do not have to accept that you will feel this way until you die. I understand your frustration, I really do, because 5 years ago I was where you are now. My experience has taught me that there are things I can do in my life that will make me more capable of living with FM and having a very full life. So try this on for size :) you are not doomed to a life of pain, misery, isolation, and hopelessness!

2] Meds-  Antidepressants are not the enemy. Many of us are on these meds primarily because they have pain relieving qualities. I take cymbalta- 90mg/day, along with buspar 30 mg/day. I take this combo for pain management first, second for depression. I understand what you are saying about these meds and your desire not to follow in the footsteps of family members. However, this desire of yours may not be a good enough reason to deny taking meds that may be able to help you now AND in the long run. Read up on some meds that you see on people's signature and if any sound like something you may want to check out, make a note of it and talk with your doc about them. Please, let me seriously encourage you to rethink this.

3] I also take a combo of ultram and flexeril. Like many people here, I had to try several "cocktails" of med combinations before I found what worked for me. Be as assertive as you can with your doc, you may be young in years, but you know who you are and what you need. You will find ways to overcome many of the things that make you feel helpless now. Count on the people who you can trust, post here often and consider what people here tell you. This is not the end for you. You can have a full amd meaningful life!

Peace!


 


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 11/28/2008 1:22 AM (GMT -7)   
Hi Jori and welcome!

I too swore I'd never EVER take an antidepressant. Even after my son passed away I refused them from my doctor. After 2 more years of suffering I finally gave in and am still kicking myself for not trying them sooner. One thing about fibro is most of us have low seratonin levels. By taking a very low dose of an antidepressant you raise the seratonin level and this often helps decrease the pain. Just because you take a particular medication that someone else takes doesn't mean you will be like them...especially since you are aware of it. Think about it at least, read all you can about fibro form good, reliable sources. Steer clear of book and clinics who claim to "cure" fibro and all of your pain...<shaking head>When it comes to medications remember it's your body and you decide what to accept or not, but at least take a look at what they can do, not what you associate them with.

And I too know people who have had babies after a diagnosis of fibro. Most often they are the most pain free they've ever been while pregnant. Of course the pain returns a while after baby is born, but it's so worth your effort. Please don't let one doctor tell you that kids aren't in your future. There's no medical reason for you not to have children. Sure, it will be a bit more of a challenge, but IMHO that decision is up to you and hubby. He needs to understand what you go through on a daily basis and be willing to be very involved as a dad.

The one thing you have working against you is your age...being young makes getting good treatment harder. Yes, there are some doctors who use "fibro" as a garbage pail, but they should be fired! A good doc knows and if not he/she gets in touch with specialists and gets you answers. It takes a good medical team to manage fibro, but having a great support group like this Fibro Family is the best place to start.

Good luck and keep in touch,
Chutz
Co-Mod Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, collapsed disk, dermatitis herpetiformus, osteo arthritis in spine and other locations.
***************

The only difference between genius and stupidity is that genius has it's limits. Albert Einstein: (1879-1955)

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